Monday, August 10, 2020

Comments by Sandra Steingard, MD

Showing 833 of 839 comments. Show all.

  • An alternative description of Goldwater was that is was an attempt by a guild to limit the authority of its members. It discouraged speculation about people one had not personally met. It narrowed the scope of its members authority. Don’t journalistic guilds set up guidelines for journalistic behavior?

  • Re: they were not diagnosis him with a mental illness.
    They were speaking from the perspective of their expert opinion as they would if they were asked to opine on a forensic case. that seems like the major issue many of us have with their work. To make a distinction between whether or not it is called a “mental illness” seems like quibbling.

  • I am glad to join in with those who have been critical of this article. It seems to be a situation in which this article has fit the events cited above into a pre-existing narrative regarding bias within the psychiatry community. Sadly, this seems to be an all too common aspect of modern investigative journalism. I have come to wonder if this contributes to a problematic narrative of so-called “fake news” where the entire enterprise of journalism – which is critical to sustaining democracy – has become suspect.
    While not defending the tactics of Dr. Lieberman, there are valid intellectual reasons for challenging Dr. Lee’s work. In fact, this site has posted many articles that address those issues (specifically the problems of psychiatric diagnosis). One can’t have it both ways.
    I also wonder about the issue of silencing. It seems Dr. Lee’s work has received much attention.

  • Hi Sam,
    Thank you for your kind words. I do not intend to challenge you but there is a paradox in your comment – you tell me to never give up but you also opine that psychiatrists are not in the least bit helpful. I am not asking you for an answer – honestly, this is a struggle for me. But I think that if we remain cautious and humble we may be a bit helpful at times.

  • Hi Sam,
    Thank you for your kind words. I often think that some people who appreciate my blogs would be disappointed with the non-virtual me. I looked briefly at your blog and hope to spend more time reading. This connection between dissociation and what we call “psychosis” is so complex. I wrote about this in this blog https://www.madinamerica.com/2013/11/diagnosis-disease-ilness/. My early experience foreshadowed the end of my career in a way I could never have anticipated.
    I am in awe of the kind of patience and love you and your wife share. One challenge for the “system” is this is hard to manufacture or train.

  • Thanks for reading and commenting. By sympathetic, I mean that she does not ascribe nefarious intent. She just thinks they failed to find what they were hoping to find by pursuing the research. In some ways, one could say that in their book, Psychiatry Under the Influence, Whitaker and Cosgrove were also doing this by pointing out that well intentioned people may be influenced in ways about which they are not fully aware.
    I hope I did not mislead but Professor Harrington does not suggest we lock people away.
    But I agree that the harms are downplayed in this book.

  • Johnbitz,
    Thank you for articulating what I often find challenging in Dr. Hickey’s writing. While I find much of value and with which I agree, his idealization of “real” medicine is one area that undermines some of his argument. At the same time, I find Pies’ tortured defense of old, failed hypotheses and failure to acknowledge the way that the psychiatric professional failed to explicitly name these limitations remains troubling for me.

  • This is the essence of a drug-centered approach to psychopharmacology. It is neither anti- or pro- drug but encourages a full understanding of a drug’s psychoactive effects, does not assume the drug is treating or correcting an underlying disorder, and encourages each person to sort out what is most beneficial.
    Thanks for this essay.

  • There was much I could have addressed in this pamphlet. It is interesting that just this week, much has come out about the cognitive impairing effects of drugs that act on acetylcholine receptors. This includes many antipsychotic drugs. Henry Nasrallah has argued that the newer drugs are much safe in this regard but I think his argument is flawed. Here is my blog and I now realize I need to follow up!
    https://www.madinamerica.com/2013/07/haloperidol-in-neurotoxic/

  • In Western Lapland. Antipsychotic drugs are used but in a much more cautious way than in other western countries. They are not considered essential and when they are used, there are attempts to stop them.
    But drug use is not always defined in other programs and I do not think it is yet understood to what extent this more cautious approach to the drugs explains the outcomes reported in western Lapland.

  • I am wondering if you might elaborate on that. Is it that the words, when used within a system, are altered and thus changed. Or is it that words uttered by those considered oppressors can not simultaneously hold value for the oppressed? Or something else?
    Thanks for the article,BTW. Always following, listening, reflecting. Language is not fixed.

  • I realize this is controversial but some people report effects that go beyond sedation. They report that voices, for example, are suppressed. But I know that there are old reports of other sedating drugs, such a diazepam (Valium), also having a similar effect. But it is highly variable and this study reflects that variability.
    I also agree that very low dose haloperidol may work just as well.
    I am certainly in favor of trying to avoid the use of these drugs and, when they are used, trying to use the minimal dose one can.

  • Dear Dr. Kelmenson,
    I want to start with saying that I welcome as many perspectives as possible. I will also offer that I can easily accept you are a man of decency who has helped many individuals. So what follows is an intellectual, not personal, response.
    I agree that Freud was a critical psychiatrist in the sense that he challenged the established orthodoxy of his time. But I have noticed, as I have spoken out more as a critical psychiatrist, that many who consider themselves in alignment with me are those who practice some form of psychoanalytic or psychodynamic psychiatry and are embittered by having been forced out of power and influence by the current dominant paradigm. I find this ironic since my career as a critical psychiatrist began in many ways when I became disillusioned with psychoanalysis.
    When you write that people assert psychoanalysis is debunked because we have identified biological causes of the disorders we treat, I would argue this is not the reason psychoanalysis has come under scrutiny. It has more to do, in my opinion, with the fact that it is nearly impossible to challenge its assertions. It is a closed loop – if a patient accepts an interpretation, then it is considered validation, if a patient rejects it, that is considered validation because this rejection is also interpreted in some way to fit the interpretation.
    When modern psychoanalysts claim that the field has changed, I often hear some watered down version – we listen to people, we are empathic, etc. Well that is all well and good but not deserving of some congratulatory response. We should all listen empathically. That is no validation of the advantage of psychoanalysis. Or else, I hear validation from some interpretation of modern neuroscience – see, psychotherapy does change the brain! That in my opinion is a fairly weak piece of evidentiary support; writing this now is likely changing my brain in some way. Relationships change the brain. Fine. Why does that privilege psychoanalysis?
    My critique has to do with epistemic authority. Psychoanalytic theory and practice still seems to place the epistemic authority of “knowing the problem” in the hands of the expert. What I find truly revolutionary are approaches that step back and acknowledge that none of us truly understand these complex problems.
    I also think in this time of reckoning in our culture, I want to say that there is a long history, sadly, of psychoanalysts misusing their privilege. Where I studied there were many prominent psychoanalysts who were found to have abused their power in their relationships with their patients. The analysts were men and the patients were usually women. I also know that the psychoanalysts kept out non-MDs and homosexuals for many years. Has there been a true reckoning for how this could have happened under the umbrella of psychoanalytic practice? To say the field has changed, is not, in my opinion adequate.
    Finally, why does one need an MD to practice in this way? In what way does medical training enhance this kind of work? If medical professionals are part of this world (and some may argue we should step back), I would say it would be to use our medical training but to use it in a more judicious way that is protected from commercial influences.
    But I am all for free speech, so glad to have you. As for joining “our team”, who am I to say? I am looking for allies but I not in charge of who can wear the team jersey.

  • I am sorry that you find this discussion of the article to be bizarre but this was a paper that analyzed data on outcomes related to antipsychotic drug use. It is a long paper and I chose to focus on the section that addressed duration of untreated psychosis, specifically the impact of delaying use of antipsychotics.
    You raise interesting points and suggest proposed policies regarding impact and regulation of cannabis but that was not the topic of the paper under review.

  • I am not sure to which study you refer. There is a general consensus that the longer the time between the appearance of the problem labeled psychotic and entering into some form of treatment, the worse the outcome. This could be for many reasons and may not be related to the kind of treatment but to the differences in groups. You raise the point that there are some folks who never come into contact because their problems may just resolve. The the study of early detection, they found that with community advertisement, they were able to identify a less ill cohort who continued to be less ill over time.
    My point is that there is insufficient data to conclude that delaying the use of drugs will worsen outcome. I was suggesting that early connection to some form of help appears to be helpful. What you are suggesting is that because we are not including the group who never had any contact with the system and may have gotten better on our own, that we can’t make any conclusions and that is a valid point. But for those who seek help, I still think we can avoid telling them it is optimal to start drugs immediately for the sake of their long-term outcome

  • There are a number of long-term outcome studies. Courtenay Harding evaluated long-term outcomes of a group of people who were part of a innovative rehabilitative program at VermontState Hospital. She reported about an 70-80% recovery. Many of these folks had stopped the drugs or, if they were prescribed, were not taking them. There are other similar findings. She and others have argued that the Krapelinian model of schizophrenia as a chronic deteriorating disorder was not supported by the data but the field tended to dismiss her (I think there was some sexism involved here).

  • I am so saddened to learn of Matt’s death. We first “met” through his comments to my blogs. This then evolved into an active e-mail exchange. I was fortunate enough to have the chance to meet him at an ISPS conference. I both enjoyed and valued our exchanges. He was clearly bright and thoughtful. He was extremely well read and generous in sharing articles with me. He taught me so much.
    My thoughts go out to his family and friends.

  • I am thinking about this idea and may write more. Of course, this is just a hypothesis based on my reading of Daniel Kahnemann and my self reflection as I have tried to shift my own practice. I also do not think one can ever tease apart the multiple factors that influence clinical decision making.
    Kahnemann studied how people make decisions and calculate risk in the midst of uncertainty. Each of us every day has to make decisions based on an intuitive sense of the odds of having one outcome vs. another. In his work, he (and many others – his worked led to the development of the field of behavioral economics) realized that people make decisions that do not follow the actual odds. For instance, this plays out in the decision to buy insurance which most of us do even though it might not be the best decision from a purely economic perspective.
    I have reflected on my own experiences in working with people to taper off drugs or to avoid using them in the first place. You and I probably have some fundamental disagreements but at least from my perspective, I notice that the risk of a person returning to what I am going to call “psychosis” with the risks that can entail, feels worse that the risks associated with maintaining the drug. This feeling state remains even though I essentially agree with people like Robert Whitaker and Joanna Moncrieff, I am not a member of the APA, I am pretty disgusted with the commercial influences on medicine and psychiatry.
    I bring this up because for those of us who are in the reformer camp as opposed to the abolitionist camp with regard to psychiatry, might find value in thinking about why it is hard to have people change practice. I suspect this kind of thing might have played a role in the evolution of those idealistic professionals to whom you refer. It also might play a role in why psychiatrists who are sympathetic to the clinical practice of Open Dialogue might not fully adopt its prescribing practices. This seems like an important thing for us to understand since the use of drugs may play a very important role in the reported outcome of OD.

  • Hi Bob,
    This is an excellent review. Thank you.
    I think a response to what you write above is that the decision to taper was influenced by clinical factors. So those who got to be on low or no dose could have gotten there because of some characteristic in their presentation that was independent of drug effect. This is the argument often raised about Harrow although, as you point out, the group who was never on drug was still having a high degree of psychotic symptoms at 2.5 years and the improvement observed was captured at four years and later.
    I will write more later but I continue to think there is a conundrum about how best to respond to psychosis in the short run when it leads to behaviors that puts a person in harm’s way. I hope to write more but I have come to wonder if there is something in addition to guild pressure and Pharma influence – something inherent in the nature of clinical decision making – that creates a cognitive distortion for the physician. Relapse risk looms larger than more distant, less quantifiable risks. I am influenced by the writing of Daniel Kahnemann and hope to flesh these ideas out more. This comes from reading his work, thinking about my own experiences in trying to taper, and working/supervising other doctors for many years. Just as your intent is far from nefarious, these cognitive biases are not always nefarious but a reflection of the limits of cognition when faced with uncertainty. All of these statistics – which I suspect I will be debating for the duration of my career – will never resolve with certainty the question of what is best for the individual.

  • I want to amend my comment above. It was pointed out to me that this paper is not a meta analysis. I also want to clarify my statement about the effect of drop outs. There are two studies cited (Schooler and Rappaport) where there is long term follow up of two groups who had been initially randomized to either drug or placebo. In these papers, the group that was initially on drug has a worse outcome. However, there was a much higher drop out rate in the placebo group during the initial phase and those drop outs were considered to have a poorer prognosis. With the Schooler paper, the authors are stating that the positive response to the drug allowed some individuals with a worse prognosis to get discharged thus skewing the results in favor of the placebo group. My point in my comment above is that while the authors may be correct, there remains room for doubt about their conclusions. As noted above, the conclusions are not that they have demonstrated improved outcome with drug rather that they fail to be convinced that drugs worsen outcome.
    I wonder how many of these authors entered the process of this review with a particular belief about the conclusions they would reach. Were there any among the eight who thought drugs worsened outcome? Did any of them change thier mind as a result of this process? I do not know them all but while there is geographic diversity among them I am not sure there is another kind of diviserity – that of perspective. I do not know but I wonder. I do not think this kind of review process can be entirely divorced from bias so bringing together individuals who enter the process with disagreement is worthwhile.

  • Many drugs that have benefits also do harm. However, this article does not address the accepted harms of these drugs – tardive dyskinesia, metabolic effects. None of that is factored in to the strong recommendation that they are started early and continued indefinitely. This treats psychosis as a homogenous experience with homogenous risks. That does not comport with my experience.

  • Thank you for this article. Can we find your thesis?
    I have read the full paper and one reason why they rejected some papers from their meta-analysis or discounted the findings was due to drop out rates among those who stopped drugs. But the assumption of these researchers is that the drop outs likely had worse outcomes so it skewed results to show negative effects of the drug. This kind of implicit bias is not acknowledged in this paper. The conflation of short-term benefits and high relapse rate when drugs are stopped with good outcome is one of the biggest errors in the field and this paper does that in its original form in a more subtle way but in the press release in an overstated, triumphalist way. I find it ironic that a group who supposedly stands for the values of science would act in such a way. The paper also points how the mere admission of ties to Pharma does little to address the serious problems that COI and bias play in medicine.

  • Thank you for sharing this history of the development of IDP and its ongoing evolution. I am deeply grateful to have been the benificiary of your teaching. The richness of this experience continues to have much resonance in my life. The links to social justice are important. In a related theme, we all need to consider how we can make this approach and these values available to all, especially those most disempowered in our society.

  • Thanks. I was worried I did not have this all correct. That is so interesting that he started in 1974. I always wondered how far apart we were in training. I started in 1981. Psychoanalysis remained dominant in many areas (mostly along the coasts but I guess as far inland as Atlanta) through the late 70’s and early 80s.
    My medical school department of psychiatry had an analyst in chief as department chair until 1980 and when he was replaced by a psychoanalyst who had became a psychopharmacologist. It was the shifting of the sands.

  • Abby,
    Thank you. I am at work with tears in my eyes. Your words mean so much to me. I did not mention you by name out of respect for your privacy but I am so pleased to have your voice here. You are a part of this work.
    What I have not mentioned is that my father died 8 months ago and I feel the resonance. It does not require a psychoanalyst to wonder if there is a link between the sense of loss I feel today and the sense of loss I feel for my own father. At the same time, it in no way diminishes the genuine sadness and admiration for Mickey. It only intensifies, I think, a connection I feel to you and your family.
    With warm regards,
    Sandy

  • I think there are are many psychiatrists who agree and yet the answers – especially with a kid who is extremely violent – are hard. This is the issue- it takes time and resources and people who believe that it is worth it toweather the storm. All of this is in short supply. I live in a place where are fair amount of resources are put into non-pharmacologically driven care and we can’t fill positions.

  • At least where I work, the psychiatrists still have more time than the generalists so they do have an opportunity to listen. In addition, it is only the psychiatrists – some but not all – who are actually reading the literature about the medications and have a more jaundiced view. The generalists need to know so much and it is much harder to “bend the curve” in their practicing style. I recently had a PCP resume care of a mutual patient because she did not think I was being aggressive enough with medications and she did not believe my opinion regarding their lack of efficacy. She was of the opinion that she would rather “do something” than do nothing. This is for me a more fundamental issue. Doctors want to be helpfuland giving a pill feels more helpfu
    Than simple listening.

  • At least where I work, the psychiatrists still have more time than the generalists so they do have an opportunity to listen. In addition, it is only the psychiatrists – some but not all – who are actually reading the literature about the medications and have a more jaundiced view. The generalists need to know so much and it is much harder to “bend the curve” in their practicing style. I recently had a PCP resume care of a mutual patient because she did not think I was being aggressive enough with medications and she did not believe my opinion regarding their lack of efficacy. She was of the opinion that she would rather “do something” than do nothing. This is for me a more fundamental issue. Doctors want to be helpful and giving a pill feels more helpful than simple listening.

  • There is a major discussion going on in other fields about the failure to replicate studies. This has gotten much attention In psychology.
    https://en.m.wikipedia.org/wiki/Reproducibility_Project
    There is now a major effort under way in cancer research.
    http://www.sciencemag.org/news/2017/01/rigorous-replication-effort-succeeds-just-two-five-cancer-papers
    There seem to be many factors that contribute to this – cost, subtle bias.
    For me, it does not undermine the scientific method but demonstrates how hard it is. In the meanwhile, we all form ideas about what is true. These challenges lead some to completely denigrate science and we see the emergence of “alternative facts.” For me, it leads to some deep sense of unease about the shifting sands of knowledge along with an aspiration towards humility.

  • Thanks for the comment. I think you have rephrased the drug centered approach to prescribing. In the early 60’s in a response to thalidomide, the FDA required that drugs have specific targets. This led the shift to a disease centered paradigm. This has not served us well. The field is now tripping over itself to explain why ketamine might be helpful for depression and why so-called antipsychotics are helpful for people labeled with mood disorders who have never experienced psychosis.

  • Thanks for the comment, Randall. I am angry about this same kind of thing. I believe this is what fuels some of my passion. But I still wonder if that anger clouds my thinking in other areas. That is what some have told me. This essay is a reflection of my reflections on these wonderings.

  • Thanks for your comments. I am not sure how “use your reason” will protect one from these various biases. In your use of the term “appeal to authority” you are referencing Kahneman’s work. The problem I am posing is that we all struggle with this, we are all vulnerable. At least that is what my reason suggests to me.

  • Hi Richard,
    Thank you for your comments. I thought I was clear in this paragraph preceding this statement that I was challenging the legitimacy of that category “schizophrenia.” By “merit the diagnosi” I was just referring to people who reported the symptoms which in our current nomenclature would lead to this label. It was not intended as a endorsement of the category. I am not sure how to critique a position without describing it.

  • Professor Murray,
    Thank you for your many contributions to our field and for your respectful engagement here. It is enormously helpful to have you share your reflections on your career. None of us are immune from having blind spots. As you know, the history of science and medicine is filled with instances where one area of certain “fact” gave way to a new paradigm.
    While the limits of human cognition may make it impossible to avoid these errors, we can decide how we respond to them. Some may hunker down and maintain their world view, while others have the courage and humility to admit to mistakes. You are clearly in this latter category.
    While I have no idea what influenced you to reconsider the data, I continue to believe that our shared profession is indebted to Robert Whitaker. Your paper can read as a synopsis of the chapter he wrote in 2010 in Anatomy of an Epidemic on the antipsychotic drugs. Sometimes, it takes an outsider to see what others have missed. Rather than be discredited, as he has been in some quarters of our profession, he also deserves our admiration and respect.

  • Thank you for sharing your story. Your perseverance and survival are remarkable. I have read another account of a young person – also from Boston- who had a similar experience.
    Another commenter brought up Justin P. Her case was championed in these pages. In that instance, the outcry was in the use of Munchausen’s by proxy to invalidiate the family’s concerns.
    I worry about the use of that label since labels – as you know as much as anyone – tend to get reified just by their utterance by anyone with a voice of authority. Rather than saying, these constructs – Bipolar disorder – have no validity and the treatments – drugs – are in effective and harmful, why do we need to add MBP?
    I realize, this is not the body of your post but it is in your bio. I ask this with genuine curiosity to a thoughtful and intelligent person – not to challenge or discount your story in any way.

  • I think recovery in this context arose as a response to a conceptualization of schizophrenia that defined it in Kraepelinian terms as a chronic deteriorating condition. Courtenay Harding and others did studies suggesting otherwise. These researchers aligned with the many people with lived experience who were told they would be symptomatic for the rest of their lives but had a different experience. Meanwhile, psychiatry in the 80s and 90s moved in a direction of conceptualizing a growing group if disorders as chronic – and often requiring long-term medications.
    This debate and rift in my profession is ongoing. I would not want to lose sight of this and it will be the topic of a future post when I have the time.

  • Thanks, Oldhead. I did not take it personally, I was genuinely curious. I think this is an evolution (or I am just late to the party) in rejecting the recovery construct when it is placed within the medical framework. But having supports in place that are helpful to facilitate personal growth is important.

  • Thanks for the comment. It is always good to know I am thinking along the lines of Jim Van Os!
    I do not think it is anti-psychiatry at all. I agree with you -it IS more democratic. There can be instances where the support person may help to give voice to an individual’s questioning of the expert opinion. but that is not anti-psychiatry, that is thoughtful clinical care.

  • boans,
    I was just trying to address the issue of the link between a drug and its effect. I believe I have observed times when the effect of the drug appears to be overall beneficial for that particular individual.
    So with alcohol, it can be beneficial for some and terrible for others, This distinction has to do with a host of factors.

  • I am not being cagey about this. I am doing more than implying a link. I am being explicit about the link. That is my observation. I understand that there might be factors operating other then the drugs but for some the change appears to be dramatic. For some, the change is experienced as a relief from what their mental state was before. For some the change seems positive to outsiders but negative to the one who is taking the drug. These are after all psychoactive substances. I adhere to Joanna Moncrieff’s drug centered model so I am not implying that they are correcting some underlying defect, just that they have an effect.
    I feel pretty sure after years of experimentation that when I have a glass of wine at a cocktail party, I am more relaxed and less socially awkward than I would otherwise be. I think that is a drug effect but who can ever truly answer that question.
    I do not intend to make light of forced drugging but I am speaking to my own limitations in not finding any way to keep some people out of jails or hospitals when they decline to take one of these drugs that appears to allow them to live more peaceably in our world. I truly wish I could figure out something else and I invite all of you to step forward to help your fellows in finding some alternative path.

  • Thanks, chris12345 – and thanks to everyone for what appears to be a respectful discussion on an extremely contentious topic.
    I think our opinions are in alignment and I am glad you have chosen to speak of your experience here. This is such a complex topic and there remains much we do not fully understand. There appears to be incredible variability – in outcome, optimal treatment, etc – among people who experience this broad entity we label as schizophrenia. I am mostly frustrated at colleagues who seem to reject that very simple premise. Some deal with this by saying “Well, they didn’t really have schizophrenia.” That is a meaningless statement when the way to prove it is for someone to reject the recommendations of the profession and go on to do quite well. But it happens the other way when someone says they find benefit from the drugs and are told they have just been co-opted by the system.

  • To jump in to this valuable discussion again –
    I appreciate the reframing Rossa and Richard have put on this. I think that can apply to some people I know. But a situation I sometimes encounter is that the person at the center of concern does not agree with the frame of “relapse” or the frame of there being any difficulty at all. But there is a difficulty for those around him. So a person is choosing to roam the streets of a frigid city, poorly clad at all hours. Or a person chooses to call the police and family at all hours due to some perceived problem that others do not perceive or even understand. But the notion of understanding or making meaning – which I do not mean to reject! – is just hard to apply because this implies there is an exchange between the people involved but in these instances, the person has no interest in having any exchange. And time passes and people worry. If we do not address or at least acknowledge this kind of predicament, I think we risk talking past one another with each side thinking the other one doesn’t get it (or thinks in black and white terms as one commenter suggests).

  • Rosas,
    You make many fine points and brought up the name of an old college classmate! I will track down his TED talk. But I do want to emphasize one particular point – that some people read in “Anatomy” that the drugs are always bad. I do not think that is what the book said but it is that particular interpretation that is in part why the book has been so controversial. I tend to consider the drugs the same way you do.

  • BP-
    What I was trying to say is that if the researchers found compounds that targeted GABA or NMDA, as Jill suggests, those drugs are likely to be as profitable as the current drugs. She was suggesting that drugs with these targets are being blocked from development for profit reasons and that was what I was challenging. Any novel compound that is promoted as having an antipsychotic effect is likely to be a fairly profitable drug. The failure to develop these compounds suggests that this strategy is suspect. I think we are in agreement on that.

  • I do not think this is about money. I think that any novel agent purporting to work in a new way would have a good market. Seroquel is off patent and most of the new drugs are “me too” drugs. However, there have been no truly new agents in many years and although I have no doubt Dr. Lewis’ work is important, the notion of NMDA/GABA involvement in psychosis has been with us for a long time.
    The deeper issue for me is that there is not likely to be some molecule that is effective for what are extremely complex problems. These conditions are likely heterogeneous.
    While I do not dismiss neuroscience, I am no longer sure this is the level at which we will arrive at an understanding of these problems which is actually helpful to people.

  • Yes. I think your notion of “forced safety” is helpful. And then we want to look with Carina Hakansson’s eyes to this place where people go to insure that it is a place that fosters healing and recovery.
    At the same time, people need to buy into a different model. If the model is that these are symptoms that need to be suppressed then there is no point to doing anything other than suppressing them. This is a hard concept to change.

  • Thanks, Carina. It is always an equal pleasure to read your comments! All I can add is that you are one of the people who has helped to not only think but to actually feel that there can be such a fundamentally different way of being.

  • Thanks for the comments and no offense taken! In fact, I have considered psychosis in an illness model for most of my career and I continue to struggle with the different paradigms. I think it is the clash of these different conceptualizations that lead to various groups interpreting the data in such disparate ways.

  • chris12345-
    I wanted to say that I appreciate your comments and your perspective. I am thinking of also posting on this study and you have inspired me to do this. What you bring up is that there is no right way and the study basically said there is no conclusive evidence on either side. My own impression is that there is such heterogeneity among those who experience what we call psychosis that we will never have a one size fits all approach.
    I wish you the best in your journey.

  • One comment I would add is that one of the studies they cite as not supporting your hypothesis was the Crowe study from 1986. This was a study of people who had experienced a first episode of psychosis, were treated with neuroleptics for one month, randomized to drug vs placebo and then followed for two years. They found a higher relapse rate in the group on placebo. However, this group published a second paper in 1990 in which they looked at functional outcomes and found that the group on drug had worse functional outcomes. I would at the very least record this study as mixed. I have sent an email to the authors and will write more when I hear from them.
    Also, the group on drug continues to have relapses through the two years but the group on placebo has more relapses early on and then the rate of relapse plateaus. We now have other studies that suggest if you were to follow the groups long enough, the rate of relapses might eventually be quite similar.
    But I agree that this is an important and helpful study and the failure to find support for the benefits of long term treatment (on average) is as important as their main finding. It is also important, as you point out, that the narrative we followed limited the kinds of questions we were asking.

  • I agree with you about the way a study would need to be set up but I do not agree with your hypotheses. We do not know what it means for someone to be out there for more than 74 weeks with psychosis before encountering the mental health care system. This was not a randomized group. For some reason, this group benefitted less form the NAVIGATER intervention than those who had symptoms for less than 74 weeks.
    There are other studies that suggest early intervention helps but one always needs to be aware that the earlier one intervenes, the more likely one is to find people who would have gotten well with no intervention. I address this duration of untreated psychosis issue here:
    https://www.madinamerica.com/2013/04/optimla-use-of-neuroleptics-part-3-duration-of-untreated-psychosis/
    This study does not tell us if the elements of Navigate independent of the drugs were helpful since that was not tested.

  • Hi Jill,
    I am not sure what difference you are seeing there. People were included into the study if they met criteria fo schizophreniform disorder, schizophrenia, or schizoaffective disorder. This was not a prevention study. When they looked at outcomes among those who had symptoms for less than 74 weeks and more than 74 weeks, they found that NAVIGATE had a much greater separation from TAU in those who had symptopms for less than 74 weeks.

  • Katie and BPD,
    While you are of course entitled to your opinion, I am uncomfortable with the personal attacks in these last few comments. I think this kind of discourse hurts ourselves and hinders what we are trying to achieve. Let’s stick to the data. We do not enjoy it when others try to undermine our arguments by speculating on what type of psychopathology might be driving us.
    Katie,
    If you are convinced that everyone can come through psychosis with some form of support that does not include ever using drugs, please provide the data. I would like to see this done in a system that has no exclusions. In Soteria and Open Dialogue, not everyone was helped by their approach.

  • Hi Madmom,
    I am sorry you were so disappointed by this post. It was not my intention. I think there are positive aspects of RAISE both in its content and in the associated hype. If you read Joanna’s post above, you can see that there is so much room for improvement and the RAISE study has the ability to garner support.
    I did, however, want to point out my own areas of disagreement while admitting that there is much to learn. With further study, I am likely to continue to revise my own thinking.
    I will continue to write and think about how we use the drugs. While I currently believe there is a role for them (and I disagree that everyone can come safely through psychosis without them), I worry about any initiative, even those based on Open Dialogue, that ignores how the doctors are prescribing the drugs. I worry that we will not replicate the findings of Finland, even if outstanding therapeutic services are offered, if the drugs are prescribed early, at too high doses, and maintained indefinitely for everyone. This remains a contentious issue in my field. I hear from psychiatrists who generally support what I write but, on this issue, they think I have gone too far. Some think I am so wrong about this, that this is a subject not even worthy of study. For them, the issue is settled and research on this topic is considered unethical.
    As for philanthropy, I will use this opportunity to mention the Foundation for Excellence in Mental Health Care (full disclosure- I am on their board). This is a foundation that is trying to raise money to support research and promising approaches. This includes Open Dialogue, Hearing Voices, Mad In America Continuing Education, and Rxisk. We agree that there needs to be funding from other sources so please check us out.
    http://www.mentalhealthexcellence.org/

  • Hi Joanna,
    Thanks for your comments. That is very interesting information about Dr. Kane. How this kind of obvious COI became acceptable is beyond me.
    It is hard for me to answer your question other than to address implementation in our clinic. The kind of care you describe has no resemblance to our clinic. We do not buy drugs and resell them. We have psychiatrists in the offices meeting with people directly. Although we are busy, we have not gone in the direction of the 15 minute visit.
    We already had a robust supported employment program so that was not new for us. What we added was a case manager but some clinics had a case manager who was trained in IRT. Overall, I am proud of what we are able to do.
    Since states are all funded differently, I can’t speak to challenges in other programs. But this is where RAISE is helpful and important. We now have highly influential voices who are telling everyone that we need to provide more than what you describe above.
    But the business model for CMHC’s is tenuous even in Vermont so I am not sure what the future will hold.Where I see a major challenge in implementation is in the training of clinicians who can offer IRT or any other treatment. The turnover in our clinic is high in part because those Medicaid reimbursement rates force us to keep our salaries are low. We recruit some very fine people but many move on for this reason. Most of the people who were trained by RAISE no longer work for us. This kind of work requires experience and practice.
    I am trying to implement Open Dialogue but no insurer will reimburse for more than one clinician to be in a room. So yes, the financing of this will be an ongoing challenge.
    This may be where people backing RAISE needed to emphasize its benefits. If we can convince people that these early intervention program improve long term outcomes, then an economic argument in favor of these programs can be made.
    Thank you for all of the fine work you do!

  • Nice post, Ron.
    One thing that is interesting is that his analogy to cancer does not hold up. There is much attention right now on the continuum of cancer. Most of us do have abnormal cell growth and the transition to a lethal state probably has something to do with a failure of our internal surveillance systems. Most things occur on a continuum and there is value in many areas to attending to that continuum.
    I think there is a legitimate question about who speaks for those who do not join in this conversation. There are many people who experience psychosis who remain silent. However, I do not think psychiatrists are more privileged to represent this voice than any other group. Many psychiatrists see people in a narrow way and this distorts our views.

  • Randall,
    I should have asked more questions about this. I am not going to allege a cover up without facts. Suicide risk is not listed i the side effects listed by the European Medical Agency. You were asking how I could not know about suicide risk. I guess at this point, I might ask you (or others) if they know more about this.
    I am nto talking here about demoralization that might occur after a person takes the drug and gains weight (although I am not disputing this might happen). I am talking bout the emergence of suicide thoughts and/or behaviors that arise after a person takes the drug and subsides when the drug is stopped.
    As for my own practice, if someone starts a new drug and reports a new problem, I will assume it is the drug until proven otherwise.

  • That is what I meant and I agree it wasn’t clear. None of us have the full story on these drugs because we do not have access to the full data. I meant to ask my source how he came to know this. But if one tries to keep up with everything published but this is not published, then yes, a so-called expert will not have this information.
    This is a problem throughout medicine.

  • Thank you for your comment. I think the distinction between prescribed drugs and recreational drugs is arbitrary. As you know, there are many drugs – benzodiazepines and opiates, for example – that are widely acknowledged as being used for both.
    Joanna Moncrieff, whose ideas I discuss in detail, has written eloquently about this.
    https://www.madinamerica.com/2014/04/angels-demons-politics-psychoactive-drugs/
    As I suggest before, I think part of the push to medicalize problems was an attempt by psychiatry to distance itself from recreational use. In doing so, I think we lost credibility in what can be our most important function – to honestly educate people about the various pros and cons of pharmaceuticals.
    David Healy has suggested in his book Pharmageddon that medicine went down a dangerous path when we got prescription privileges. Physicians were thought to be more impervious to the lures of advertising but we now know how that all worked out. Before then, people could consult with doctors about what may or may not help and then go a pharmacy to buy what they wanted to use. A commenter here said it is still that way in Uruguay.
    It is for this reason that I am far more comfortable with decriminalizing marijuana than increasing the indications for medical marijuana. We need more research in this area but I do not want to be the arbiter of who is using it for “medical purposes” to treat some DSM disorder and who is using it to just have a pleasant evening.

  • Exactly. The RAISE psychiatrist leadership certainly advocated for low doses. At the same time, they believe that drugs should be started as soon as possible and continued indefinitely. If that is one’s belief the. Early introduction of long acting I jectables makes sense.
    Whe. You read the article – I would love to know what you think – be sure to check out the disclosures,

  • Point of clarification, Navigate was not based on Open Dialogue. While there are some shared elements, there are also important differences. The RAISE researchers would say that early intervention with neuroleptics, albeit in lower doses, is critical. The family component in Navigate is psychoeducation and the education is about teaching a more medical model understanding of the problem.
    While I celebrate the attention this is getting, these distinctions are important.

  • You raise critical questions. I agree that psychiatry has on some level taken on the mantle of social police. There is a free on line Journal dedicated to this topic that I have been reading lately and I highly recommend it. It is the Journal of Ethics in Mental Health. The issue of called “Colonizing Forces in Mental Health.”
    http://www.jemh.ca/issues/open/JEMH-Open-Volume.htm#colonizing
    I think the heightened medicalization is a (failed) attempt to escape this by trying to label problems as disease states.
    But honestly, I go to work and often I am grappling with other problems – helping people to survive in this world. Even if the determinants of the distress are based in our culture or the person’s unique experience of that culture or some combination – is it wrong to try and help the person be able to get food and shelter and make some life of meaning and value? If we can try to proceed in a way that is more democratic and respectful – is this, nevertheless, doomed to be a failed endeavor?

  • Thanks for your thoughtful comments. I am familiar with object relations theory and the value you find in it. Thank you for highlighting that here.
    As for the emphasis on drugs – hopefully I was clear that I do not necessarily think drugs are the center point, in fact, I think they most often do not need to be. What I am talking about is how to think of them and how to talk about them when they are considered.

  • bpdtransformation,
    While I think I tend to be conservative across the board, there is the added problem with cannabis is that there are many active ingrediaents which vary from plant to plant.
    I have suggested that following the ideas of Joanna Moncrieff and taking a drug centered (vs. disease centered) approach to thinking about the use of all psychoactive substances is warranted and would likely lead to a generally conservative stance on thier use.
    I think this is the essence of first do no harm.

  • Monica (and Will),
    I did read the entire piece and I agree that it reflects Will’s usual thoughtful attitude. I was bothered a bit by what I saw as his criticism that more physicians and medical organizations do not suggest marijuana as a possible treatment.
    While I agree that there is a Catch 22- we do not know enough because research has been severely restricted, I do not see how one can recommend something when one is never sure not only what that something actually is or what its effects will be for any given person.
    I much prefer legalization over the expansion of indications of medical marijuana. I do not want to be the arbiter for who does and does not get access. I would much prefer to be in the position of just talking to people about how use may or may not be helpful.

  • bpdtransformation-
    I think you are doing in your comment what many people here find frustrating when those in the so-called “biological sphere” criticize the collective views here, i.e. parsing out what is wrong with a study, even casting aspersions on the author, as a way of completely discounting the results.
    Personally, I am more comfortable concluding something more like, “psychotherapy” (even when you narrow it down to psychoanalytic psychotherapy) means many different things. Not only that, what is captured in the theory probably contributes a much smaller part to outcome than what happens in the relationship.
    When I read Alanen, I was drawn in more by what he and his colleagues did than with his psychological explanations of why he did it or why it was effective.
    I have lately been spending time on this marvelous website devoted to the work of Leston Havens, MD:
    https://www.lestonhavensmd.com/
    He talks about his own work as well as that of Elvin Semrad. They were legendary psychiatrists when I was training. They operated within the world of psychoanalysis when it was the dominant psychiatric paradigm but they both seemed to accept its limitations. They both just seemed to know how to connect with people.
    What I wonder is –
    Can we really define what the “treatment” is and do our theories obscure or enlighten us?
    Can we teach what it takes to do this kind of work or will there always be some people who just seem to be better at making the kinds of connections that are critical to this work?
    Are there enough variations in this thing we call psychosis so that both of these statements are true: x-type psychotherapy does not help people who are psychotic and x-type psychotherapy does help people who are psychotic?

  • Thanks, Carina. I am glad you mentioned Tom Anderson. Although I never had the privilege of meeting him, his impact on so many people who are important to me is palpable.
    I was thinking of adding the names of people who have influenced me (us) but the list got very long (of course you are on it!) and then I worried I would leave important people out. But I wonder if we could create a reading list. I have read such wonderful books in the past few years.

  • Another example of why a drug centered approach makes so much more sense than a disease centered approach. With a drug centered approach we can give up the disease mongering and perhaps try to understand more clearly what the implications of taking this drug (or any drug) are beyond the first few weeks.
    This a a four week study. The drug had some cognitive effect – as it would on most people. But what happens over time? What are the impacts, as Dr. Molchan raises in her post – on cardiovascular function? How hard is it to stop? Is there diversion? Is there improvement that goes beyond the lab,i.e., does the drug help these women to actually function better in their lives?
    As a commented posted on another blog, it is bizarre that we celebrate the use of stimulants in one setting and vilify them in others (i.e.,with methamphetamine and cocaine).

  • With all due respect,
    I was merely attempting to respond to Richard Lewis’s comments:
    “Your statement seems to deny the role of learning through INDIRECT experience and knowledge” and then “Sandra, you did not yet respond to my above comment about indirect learning.”
    I never said that I could understand exactly what an another person has experienced, I was only suggesting that I was capable of learning. Of course, you are free to disagree.

  • Hi Richard,
    Sorry I did not respond to that comment. I thought it was self-evident that one can learn from ways other than direct experience as a psychiatric patient. I would suggest that my entire blog postings put together give the summation of what I have learned over the arc of my career as a psychiatrist. We are all learning and reshaping our views of the world on a daily (or momentary) basis. I am still learning and there is much we do not know. Not every one who experiences psychiatry comes to the same conclusions as those which are generally manifest here. And even the opinions on this site are varied. Just last night, I read Sascha Altman Debrul’s most recent post: https://www.madinamerica.com/2015/07/tearing-apart-the-dsm-5-in-social-work-class/.
    I then went to read some of his earlier work. Sascha has taken lithium and yet he is open to those who reject all psychiatric drugs and he is open to what Joanna Moncrieff has recently written about lithium:https://www.madinamerica.com/2015/06/reasons-not-to-believe-in-lithium/.
    I admire Sascha because he is a vocal critic of the system and yet understands that it is also complex and there is no one approach that will be satisfactory for all. I mention him because I think he has a credibility here that I will never have. I admire Joanna Moncrieff because her drug-centered model offers us a way to think about the role of drugs without reifying poorly formed DSM diagnostic categories or getting blinded to the poor outcomes.
    I admire cognitive psychology because they offer testable hypotheses and – at least the ones I have read (Kahnemann, Tavris, Aronson) -they reject their hypotheses and revise them when they do not pan out. That is not exactly what happened with psychoanalysis, it is not exactly what happened with those in the so-called recovered memory movement and it is a risk when people develop their own hypothesis about human behavior and then run with it in books and treatment clinics. I am drawn more to open dialogue and that network of psychotherapy because they focus so much more on how to connect and talk with people than on developing theories about what is wrong with people.
    I am all for hypothesis formation -after all there is so much we do not know! – but we need to be open to disproving and revising them and we need to allow in the light – the critiques of outsiders – since we are not always the best critics of our own ideas. Honestly, that is why I blog. I am a person of strong ideas but like every other human being, I know I have my blind spots.
    In the past, when I have suggested that there may be some people who seem to derive benefit from the drugs and even some who appear to thrive over time, many of the responses have been that these were individuals who were co-opted by the system and their responses were all placebo. Maybe but – and this is important – maybe not.
    I agree with what Robert Whitaker wrote above. I am not absolving anyone of anything. As I wrote in another comment, I was in mid-career in the 1990’s when the pharma incursion into psychiatry was at its peak and this is what turned me to being a critical psychiatrist. I have not stepped away from any of that. But can I join you and the abolitionists? Not quite yet. If the Sascha’s in my world want some help in figuring out how, when, or why to take lithium, I would like to try to be of some assistance.
    Thank you for the question, Richard. It helped me to clarify my thinking on this. I always appreciate the dialogue.

  • Maybe you are correct about 2010 but the thing that led me to Whitaker’s work was the obvious problem with the pharmaceutical/academic medicine connection. I saw the roll out of the new drugs in the 90’s and if you were paying attention, it was clear that the hype did not match the studies and that was even with the published studies! People like Marcia Angel and Arnold Relman were writing about this by 2000. I think people were willfully trying to keep their eyes averted. That is something I witnessed directly and it was pretty shameful.
    But I agree that Whitaker and others (including co-author Lisa Cosgrove) have done an enormous amount of work and deserve much credit for bringing wider attention to these problems.

  • To Frank Blakenship,
    Since you brought up Hitler, CDT would be one way to understand “the good German” question. As I have said, this is not a way to absolve anyone of personal responsibility but to understand the peculiarities of human behavior(if one is so inclined to be curious about that).

  • Dr. Berezin,
    Are you able to explain how your theories are less dogmatic that psychoanalytic ones? “All psychiatric symptoms are the expression of our problematic characters, ” sounds somewhat dogmatic to me. Also, assuming this way of working is helpful, why is medical training considered a prerequisite? In other words, in what way is this specifically an endorsement of psychiatry as opposed to an endorsement of a psychotherapy that could be as effectively offered by someone who does not have medical training?

  • Hi Saul,
    Thanks for the further comment. I guess I read it all a bit differently but I agree that CDT does not explain everything. Nothing ever does. And it is not offered as a means to absolve anyone of his/her responsibility. It is just an answer – perhaps partial- as to why so many doctors react so negatively to Whitaker’s book rather than with something else – curiosity, further inquiry, come to mind. It is an explanation for why we might more easily accept studies that support our own sense of the “truth” but react more critically to those that challenge it. This is what has happened in psychiatry. In other areas of medicine – for instance, the treatment of chronic pain with opiates – similar questions are arising. So this is something of a new idea- that the long term consequences of many drug treatments might be very different from what is observed over the short term. However, I think I share with many readers of MIA a serious concern that in mainstream psychiatry this new information is met with more hostility than curiousity and the desire to learn more.
    Also, I think the studies do suggest that doctors (and others) will be more concerned about other people being prone to corruption but less concerned about themselves. In addition, the membership of the APA has been dropping although I do not know why exactly that is.
    But I have to admit that I am struck in these comments that many still want to keep the focus on biologically oriented psychiatry (and no doubt they deserve such focus) without taking me up on the suggestion that bias and blindness is a problem in other quarters of the so-called mental health/emotional distress apparatus.

  • For what it is worth, these are my thoughts:
    Most so-called alternatives involve tolerating a certain amount of extreme states/psychosis/spiritual emergency and giving the person the space – physically and temporally – to recover. In addition to funding programs, there needs to be a shifting in people’s’ conceptualization of these problems. If you read Joanna Moncrieff’s blog today, you see she provides strong data that long term use of medications are not worth the risk (there are less charitable ways of stating this). But it means that one would consider a “relapse” in someone who has chosen to not take drug treatment a part of the process. Right now, every time a person who has chosen to stop or not use drugs runs into problems and winds up in a hospital, the people there see that as proof that the drugs are necessary (Of course the many people who wind up in a hospital despite taking the drugs are considered to have a “treatment resistant condition”). It requires a shifting of perspective. As someone who is struggling with this shift, I can tell you with sincerity that it is hard. This is why it is so important for people to speak out and tell their stories and for more research to be done.

  • Thanks, Joanna.
    I am still not clear on your recommendations for responding to a manic episode (as opposed to at preventing recurrence). As you know and as Ms. Lowe discusses in her article, mania can be destructive and scary. If one does use a drug to slow a person down or sedate him in the moment, what then? I admit that sometimes I find myself wondering, What Would Joanna Do?

  • Saul,
    I think the book does offer that sort of accounting albeit from outsiders to the profession. But I think it is a misreading of my blog to think I am posing this as a way to skirt accountability. Rather it is an attempt to explain how people can act in ways that are antithetical to their own stated ideals. The major point of this blog is not to excuse or exonerate but to point out that this is not isolated to those who have a biomedical approach to understanding the problems that bring people into psychiatrists offices.
    Tavris and Aronson suggest that “The ultimate correction for the tunnel vision that afflicts all of us mortals is more light.” I encourage all of you to shine your lights brightly.

  • Hi Ted,
    I appreciate and respect your comments. Having read about your experiences as a child, I conclude I would feel as you do if I had experienced what you experienced. I have come to understand that I will not find common ground with the abolitionists among the readers here, but my blog was not an attempt to avoid responsibility. I understand, however, that noting I can say will be adequate for you.
    But I share at least a smidgeon of your anger:
    https://www.madinamerica.com/2013/06/i-am-also-mad-as-hell/

  • Re:”I actually believe that questioning a person’s memory of their trauma is traumatic in and of itself”
    I do not disagree with that statement. I also agree that memory is variable. But what happened in the recovered memory era is that people who had no conscious memory of traumatic events “recovered” them in therapy. This is very different from discounting someone’s recollections.

  • Thanks, Carina, as always for your contributions.
    I think I understand your point but are there no problems that are understandable – at an individual level? Are there no ways we can intervene at the individual level and be helpful?

  • Thanks, Jill. That last concept fits in well with narrative therapy, I believe. I think what can be problematic in diagnostic classifications or psychoeducational models is that it imposes a way of thinking onto a person or a family.

  • I saw the promotion of the study and wanted to track it down to find the drug status of those studied. That is a pretty striking oversight in the abstract and promotional material. This is the error that was made for 30 years in the studies of schizophrenia – to not question the role of the drugs in contributing to the findings. This finding was a foundation of the neurodevelopmental theory of schizophrenia. As you point out, it turns out the drugs at the very least contribute to the findings of atrophy but just like to dopamine hypothesis of schizophrenia, the idea has stuck and it can take a very long time for people to step back and question the basic theory.

  • Hi Will,
    Interesting article. I agree with many of your points. Some of us in the medical profession have pointed out that many of the problems of psychiatry are seen elsewhere and are due to the medical system being to beholden to profit driven entities. This is a point Marcia Angel has made and is a reason why she has turned her focus towards single payer health care.
    But just as Whitaker and Cosgrove used Lessig’s concepts to focus on psychiatry, those who want to advocate for change can do the same. As you pint out. The Occupy movement may have fizzled out because it lost focus.
    It seems that you present this as an either/or whereas I see it as a both/and. One can set one’s sites on reforming (or for some on this site abolishing) the thing one knows best while keeping attuned to the broader issues and aligning with groups/individuals who share the same perspective.

  • Steve and Stephen,
    There was a lively and good discussion after the talks. I want to emphasize that I appreciate Dr. Marder’s willingness to participate and engage. I think most of us felt that the workshop format we chose was not long enough to allow a thorough exploration of the topic. I mention his comments not to be personally critical of him but to give some idea of what he had to say.

  • http://www.cnn.com/2015/05/24/us/feat-john-nash-wife-killed/index.html?sr=fb052415featjohnnashwifekilled1029aStoryLink

    From the article:”Unlike Crowe’s character, who comes to rely on medication for treatment, Nash said in a 1994 interview it had been decades since he had taken medication.”

    The book is worth reading. But as much as this story serves to challenge the narrative – and I am chiming in with everyone else!- it also serves as a reminder that it was a tough and long road for him and his family. Perhaps it could have been easier with a system of care who responded more emphatically but this took years to “settle” as I think his wife said in one of these accounts.

  • Sa and Russerford,
    I can not speak to what Dr. Marder does and does not know. I barely know him. but I do believe he is a decent and well intentioned person and I am truly appreciative of his participation on our workshop. If there were not opposing perspectives, the workshop would not have been necessary. But he is truly an international expert on the pharmacology of schizophrenia and has been for many years. I do know that he has advocated for low dose use of the drugs.
    However, there is a “mainstream” perspective that holds on to a kind of Kraeplinian view of schizophrenia as a chronic condition that requires long term neuroleptic treatment. I think I understand why this is the prevailing view and why the “mainstream” has a hard time re-thinking this. These ideas are addressed in Robert Whitaker and Lisa Cosgrove’s latest book. I am working on a blog about the use of long acting injectable neuroleptics in which I am going to try to articulate this so stay tuned if this is something that interests you!
    Thanks for your comments!

  • Ahh, bpdtransformation-
    Language is tricky.
    You write “You speak of “psychosis” as if it were one entity; e.g. you said, “its causes”, and “its cures”. This type of thinking assumes that there is an “it.”
    But I also wrote: “I think that psychosis remains mysterious and vast in its causes and cures.

    There is not “it” and as we get to know one another, you will know that I do not think that way.
    If I used those terms, it was because the alternative language is hard and I am also trying to speak to a vast narrative and body of work that uses those terms.

  • Although I would add that even with unlimited resources, many of the people I meet would not go to see Dr. Karon or van den Bos. this is what is so intriguing about Open Dialogue – they have created a system of care that includes outreach to the social network. So while there may well be overlapping principles, the folks in Finland have designed away to work with everyone in their area – and to address the conundrum of engagement – and this is important.

  • There is a new section of this website that was just announced that will address these questions. See Laura Delano’s post.
    So yes, I am not able to give any advice particular to your situation since I do not know you. All I can say is that going slowly seems safest. I would try to put in place some sort of recovery map or plan – what would be signs that things are not going well, are there people who you trust you can give you some perspective (this is tricky since if people do not believe in drug taper, they may over estimate problems), are there some concrete markers (I find sleep helpful in this respect since mood is so subjective – when is feeling good a problem of feeling too good?) that will provide warning signs for you, etc.
    I also have the notion that it is worthwhile going slowly even to the very end. Some of us who are doing this think the very end – even when the doses are extremely low – may be the trickiest time. this is challenging since the pills only come in set sizes. Some people use nail files to scrape of the dose. Abilify has a very long half-life (maening it takes days to get out of your system) so if one gets to a very low dose, one can drop the dose on one day of the week then two, then three, etc.
    Remember, this does not need to be about drug or no drug. Most of the things we worry about are dose related, so even reducing dose has some benefit. In my work, most of the “relapses” occurred by 5 months and all by 12 months. For people who want to try this but are extremely cautious, we sometimes just make small reductions every year (and by small I mean about 20-25% of the dose).

  • bpdtransformation-
    Thank you for your comments. What I did not mention above is that our workshop was only 90 minutes long and each presenter had at most 20 minutes for his/her topic. This was in some sense unfair to each person (other than me since my data is fairly limited). We could have made good use of more time to address some of what you cite above. My MIACE talk on neuroleptics is 2.5 hours long (!) and it covers some of what you mention above.
    While we are at it, another important topic is the question of duration of untreated psychosis (DUP) which addresses the time between when “symptoms” occur and treatment is started and treatment typically=neuroleptic drugs. There has been an impression in the mainstream of psychiatry that the longer DUP the worse the outcome and this came up again at the presentation I went to on RAISE. This is what has resulted in the push for early use of neuroleptic. Then, since relapse rates when drugs are stopped tend to be so high, there is a recommendation for long term maintenance. Right now, there is a big push for long acting injectables (LAIs) since the thinking is that is will improve adherence. This is happening because there are many new on patent LAI’s on the market. I am planning to review the data on this in a future post since there is some flawed thinking, IMHO, on this topic.
    But I think you are correct that we approach this through different perspectives and Dr. Marder (and I!) have not had much experience in working with individuals in different ways. For the duration of our careers the major paradigm of care has been a drug centered one. In this paradigm we see people who stop drugs and have a recurrence and improve – at least in the short run or to some extent – when the drugs are re-started. For me, it has taken some leap of faith to believe in alternative paradigms. It is why I have traveled to Finland and Norway to actually meet the people who work this way. I felt the drive to have some sort of immediate contact at least with the clinicians who do this kind of work.
    So while I can not speak as an authority on non-pharmacologic ways of helping people (I consider myself an avid student), I am trying my best to present data on moderating the use of the neuroleptics.
    But I want to add one point, I think we are all subject to the distortions of our own experience. So while I do not dispute the observations of those who have personally experienced recovery through non-pharmacologic help or those who have been the helpers, I also do not think that kind of experience informs us about everyone. I think that psychosis remains mysterious and vast in its causes and cures. Dr. Marder knows Elyn Saks who was the recipient of long term high quality psychotherapy yet, as she writes in her memoir, when she finally agreed to use neuroleptics, she felt much better. I think we can no more discount her story than discount the story of Joanna Greenberg or many others who recovered without using drugs.
    Dogma has not served any of us well(and I am not accusing you of being dogmatic. I very much enjoy your voice and perspective here. This is just a more general comment).

  • Not at our presentation. Given that we presented in a workshop format, each talk was rather brief. In addition, our focus was specific to addressing the data on long term use of neuroleptics so a discussion of the topic you propose in this comment – the validity of thinking in this way as well as the potential efficacy would have taken us far afield. If you are asking about other workshops, I am not sure. The APA is a rather broad meeting.

  • Part of the problem (and there are many here) is in the notion of “co-morbidity”. How psychiatry as a profession can pretend that one can take such faulty constructs as psychiatric diagnostic categories and them combine more than one to get something that has meaning and drives clinical decision making has always been beyond my own limited comprehension. But when you ask the prescribing psychiatrist why she is giving 5 drugs to this person who she has labeled with the term “borderline personality disorder’, she will most likely say that it is because she also has the diagnosis of “major depressive disorder” and/or “bipolar disorder, type II,” and/or, in a recent worrisome expansionist trend, “attention deficit disorder” etc., etc. The growth of each of these diagnoses typically directly follows the introduction of a newly patented drug or drugs that is reported to be effective for that particular “co-morbid” condition. This way of thinking has been widely promoted by the field -and exported to our primary care colleagues – for the past 30 years.

  • I guess the best way I can respond is to say this:
    1. This is a big question – to say how I think about the vast array of human distress that have come under the sway of psychiatry. And my path is not really so interesting or worth recounting here.
    2. I have come to believe that humility, first and foremost, is in order and so I think I (or we) do not have one answer or even a thousand answers. I am personally wary of those who offer “theories of everything” be they biological, psychological or social. I am as critical (or wary) of psychological reductionism as biological reductionism.
    3. At the same time, the overwhelming data points to the fact that most people seem to recover over time and as a psychiatrist I need to be very careful that, in my attempts to offer help, I do not do more harm than good.
    But look to my wonderful colleague Carina Hakansson. Her recent blog as well as earlier ones speak with a honesty and clarity that has been invaluable to me and many others as well. It is even more remarkable that English is not even her first language but she expresses herself so well. I am hesitate to paraphrase her but at least what I hear when I listen to her is not so much a theory of why people struggle in the ways they do as a discussion of how we can be with people in a way that maximizes their own abilities to recover.
    https://www.madinamerica.com/2015/05/when-the-hunger-for-real-knowledge-is-enough-change-will-come/

  • clc,
    I agree with Fred that people who have experienced what I call psychosis,are in a much better position to describe it and respond than a non-experiencer like me can ever be. But in an attempt to respond to your question, I would say that attempts to link the experiences of someone experiencing what I call psychosis to other kinds of experiences others have is worthwhile. Is all of “schizophrenia” a chronic terror syndrome? Whom am I to say? In general, however, I resist unifying explanations be there the dopamine hypothesis, genetics, or terror syndromes.

  • bpdtransformation-
    Your points are well taken. I have now read some of your blogs and I think you and I are in agreement about much of this. However, for systems change, I believe that we need to sometimes use the language that those who we would like to change are currently using. I guess it is kind of a bridging language. I was aware of this when I was writing but for this blog and for the sake of space I chose to write in the medical model language of illness/relapse/symptoms. As I say in the beginning I am reflecting on how psychiatrists might consider changing their practices based on these studies so I decided to just stick with more traditional psychiatric language.
    Thanks for reading and commenting.

  • Hi Sa-
    Thank you for your comments.
    In the Harrow studies, he identified a group of people who were diagnosed with schizophrenia who were taking drugs at each assessment point and a group who were never on drug at any assessment point. Those are the groups I reference above. I do not know if any of the group who was identified as “never on drug” ever took it for a brief point in between assessments and similarly, I do not know if any of the group who were identified as having a “relapse” took drug after.
    As for his definition of recovery, I need to go back to check this but it had to do with the absence of psychotic symptoms as well as good functioning (working). Keep in mind that any time one has to define – for research purposes -something that is inherently continuous, it becomes categoricial. By this I mean that one has to set up a cut off in which some are defined as recovered and others are not, but in life we know that there are many gradations on this spectrum. Here is a link to a blog I wrote on Harrow’s study that goes into a bit more detail: https://www.madinamerica.com/2014/03/neurolpetics-anti-psychotic20-year-follow/ .
    I do know the definition that Wunderink used. He defined symptomatic recovery and functional recovery. Symptomatic recovery meant that a person had almost no psychotic symptoms as measured by a standardized rating scale. Similarly, using an assessment tool, those who were considered functional recovered had good relationships and were working. To be considered recovered, one needed to have achieved both symptomatic and functional recovery. Here is a link to a blog I wrote that describes his study in more detail: https://www.madinamerica.com/2013/07/a-paradox-revealed-again/ .
    I do not know if he will be able to re-evaluate his group again. It is a good idea! Perhaps given the amount of attention this study has received, he will obtain the funding to do this.
    But I do think there are people who recover but at a slower pace. One of the other excellent talks was by Courtenay Harding. She discussed her work of following up on people who are extremely impaired while at Vermont State Hospital in the 1950’s. They were the group who did not improve on the then newly discovered chlorpromazine. She assessed them 25-30 years later and 2/3’s of them were described as recovered.
    Just today, Carina Hakansson has a blog in which she describes a man who recovered after many years. I see this in my own practice as well(and to be fair to this discussion, many of those people I see and would define as recovered are taking drugs).

  • Dr. Tarantolo,
    I understand that the point of this blog was to address a misrepresentation in Lieberman’s book and I appreciate your efforts at debunking. At the same time, I wonder about the dualistic nature of your view. Do you think it is possible that the experience of let’s say hearing voices reflects some alteration in brain functioning while at the same time is amenable to so-called social or psychological interventions? I wonder if this is what Dr. Dewan was getting at when he said that Szacz would not have even thought in terms such as “schizophrenia qualified as a true brain disease” because that is such an unsophisticated way of thinking about this. It seems that this unintended dualism creates unnecessary arguments and distracts us from more central concerns. So maybe there are changes in the brain that are truly independent of drug effects. Fine.that really tells us very little about causality (stress and trauma later the brain) or what types of interaction and interventions will and will not be helpful.
    I know there are true dualists – those who believe deeply in spirit and non-organic effects and that is one type of discourse. But much of the time, there seems to be an unnecessary debate on whether or not brain changes are part of alterations in cognition, feeling, and perceptual experiences. It is as if by involving the brain we automatically imply that genetic contributions are paramount or that biological treatments are required. This is an unnecessary and unfounded assumption.

  • Frank Blankenship,
    I am sorry if I was not clear. I was trying to emphasize that I believe there are factors beyond (or in addition to) use of medication that are important. Neuroleptics, in my experience can bring a more rapid reduction in psychotic experiences.Without them, helpers (at least this helper) can use some tools/guidance/approaches/places to be to assist the person in distress.

  • I agree with others that the use (or rather non or more limited use) of neuroleptic drugs is likely to play a big factor in the good outcomes with OD but of course this is just a guess. With an intervention as multi layered and complex as OD, we can’t be sure what role each factor plays. There is just converging data that supports this.
    At the same time, I would not want to discount everything else. As a so-called “mainstream” psychiatrist who is trying to work with people who choose to not take these drugs, I can tell you that I can use all of the help and wisdom I can get and I was helped enormously by the training I received in dialogic practice. But I have also been helped by my reading and conversations with so many others. This includes other practitioners of related approaches (to name the very tip of this large iceberg: reflecting therapies, Carina Hakansson and her wonderful colleagues, Ron Coleman and Karen Taylor, Intentional Peer Support training, the many people I have now met who have experienced psychosis and found ways to emerge or live with these experiences, and books too numerous to begin to cite. And now I will worry about who I left off this list.). And the truth remains that after 30 years and at the end of my career, I feel like a beginner.
    It is true though, that this issue – is it safe to hold off on giving drugs – remains hotly contested in the mainstream. It was promoted as a hypothesis in the early 90’s and it quickly became an accepted “factoid”. There is an opening, though. Patrick McGorry who promoted early use of neuroleptics has stepped away from this based on his years of research. This gives room for people who want to try something else. And there are just many young people who do not want to take the drugs. I do not see why we wouldn’t want to be working with them (and their families!) and figure out ways to meet them in a way they find more acceptable and helpful. My experience is that even in my awkward, stumbling ways, people are grateful for my attempts to at least try to remain engaged.
    I am no expert as to how to implement this but I can not fault anyone for what they have or have not done without looking for a long time in the mirror. Implementation projects are hard and they are made harder when it involves training many people, training is long, there is no manual, etc. The attempt to begin to develop fidelity measures is a crucial first step in my opinion. I also think there are people trying to use this approach while avoiding neuroleptics. One thing people are finding is that in this era, it is hard to find young people who have not already been treated with drugs.
    Since we are stirring it up a bit, I would also finish by adding that I do not think anyone has an obligation to comment here. I am glad for the opportunity to engage. I find it helpful but not everyone will find this type of forum to his or her liking and I can understand that.

  • Eugene,
    I also very much appreciated your words including the quote Daniel references above.
    It seems that a person working in the current system is asked to take a leap of faith that there is a better way to meet people in crisis. While studies are important – and in many ways it was the outcome studies that first got my attention (and I do not think I am the only one) – as I have delved more into this and met more people, it is something else that draws me in. It is an attitude and a value system and all of the things Daniel articulates above. It was what I was trying to capture in my last blog on ISPS. It is a reason why, while I value OD I also want to broaden the focus.
    But we live in a world that wants evidence. And we live in a world in which people will have crises that will not be understood by their communities. Those bureaucratic hurdles of which Eugene speaks seem like mountains. Paradoxically, the entrenched models and techniques are reinforced by dint of their being only marginally effective thus keeping that revolving door in motion.

  • Daniel, Carina, Ron and others,
    I have taken to using the term “needs adapted approaches” to encompass that large group of approaches that value a person-centered, humane, democratic way of being that endeavors to include – to the extent possible – the person’s social network. It also includes the notion of doing with rather than doing to. In my view, this goes beyond dialogic practice because it does include a notion about a system of care. What do you all think of this?

  • Hi Jessica,
    Your words mean a lot to me. I was nervous about this post. I wrote it as much for myself – to organize my thinking- as for anyone else. I did not want to speak for anyone or misrepresent this.
    Thanks,
    Sandy

  • Jeremy,
    I know we are allies but I wonder if you truly have to sit in on there presentations. I think we can expect nothing less than a promotional presentation when we are hearing about drugs from a sales person. I also understand the problem goes deeper since so many academic psychiatrists have conflicts of interest. There are places (at least in the US) where one can go to get somewhat less biased educational credits.

  • Although I am not a huge fan of the language of DSM and I worry about the incursion of drug treatments for people who may heal with time and love and support, no treatment is implicit to the label. I wonder how your “working with” is different from other sorts of supports a person might be offered by another mental health professional. Why is “traumatic grief” a less stigmatizing term? Why is what you do not considered offering “treatment” for people in distress? This is not intended as an argument but as a genuine question.

  • I look forward to reading your book. I have just attended sessions at ISPS on Peer-Supported Open Dialogue and Parachute NYC. What a remarkable turn of events. While some in our field may be holding on to paradigms that are lacking in efficacy and compassion, there is this wave of people – peers and professionals joining together – who are forging ahead to change the way we work.

  • JeffreyC
    I guess I am not being clear. I am not opposed to anything you suggest. The payment system for these others, who I agree have much to offer, is even more dismal.

  • One complicated part of this is that because the funding is part of health insurance, it bolsters medical iterations of the problem.While I anticipated JefferyC’s response, agencies like mine are forced into a certain medicalization that does not make sense. For instance, physicians needs to sign off on treatment plans to indicated that they are “medically necessary”. This time adds up and is not directly reimbursed. We would otherwise not get paid for the services our therapists (and others) offer. While JeffreyC points out that there were others in the room with the gastoenterologist (just a nurse) and that there is a fee to use the procedure room, there was an additional considerable charge for this. If there had been a biopsy, that would have been an extra charge. If an anesthesiologist had been present, she would have also submitted a bill. There is nothing comparable for us and, yes, there are others involved in the work we do. Sometimes, I find that the most important work I do is to just be available to people – on the phone, sometimes by e-mail, with family (if permission is granted).
    I do take some pride in the fact that I can see people regardless of their ability to pay but in contrast to what JeffreyC has noted, there is a decent business among people who do not use insurance and pay psychiatrists directly for their service. Those psychiatrists are always full, charge way more than $58 for a consultation, have waiting lists, and make a decent income.
    I knew that there would be many who would find $58 too much for any psychiatrists. Some of you find the profession so useless that nothing is “worth it”. But anyone who is involved in reform can’t ignore payment – regardless of who in the end gets paid – and that is what I was trying to highlight here.

  • Thanks to all for the rousing discussions. Many fine points have been made. What a complicated mess we have here in the US with our “excellent” level of health care. Hold on to what you’ve got, Carina!

  • B,
    Two excellent points and a very funny cartoon. In a serious way, Irving Kirsch addresses this problem of the “pseudo” blinding of many studies in his work and his book.

  • lastinline,
    Thank you for commenting. I think many people have written about the benefits of psychoactive drugs. They are widely touted by psychiatrists and they are heavily promoted on TV. Right now, I believe that it is a psychoactive drug, Abilify, that is the highest selling drug in the US. I do prescribe these drugs and I have written about why I do this in other posts. At the same time, I believe that we do not understand the full degree of problems that can be associated wit these drugs. Studies usually focus on short term effects but people are often on them for long periods of time. We are not good at distinguishing between withdrawal effects and relapse.

  • I think this gets into a topic that I have a sense of but probably will not do justice to here. I think it arises out of a complex interaction in our culture related to food, culture and body image. But the category of binge eating disorder will capture many – some who will perceive themselves to be disordered and others who do not.

  • Hi Jonathan,
    thanks for reading and commenting.
    So much for rigorous informed consent.
    I subscribe to Michael Pollan who suggests that due to our disordered food systems, we are all a little eating disordered. We have lost the rituals of eating and cooking food and this has had dire consequences for many. I am fascinated by this topic and was going to write more but it ended up being too off topic for today.
    I wrote about this when I started blogging:
    https://www.madinamerica.com/2012/04/you-are-what-you-eat/
    https://www.madinamerica.com/2012/04/you-are-what-you-eat-part-2/

  • Sally,
    Will writes,
    “I believe that people who are afraid, perhaps such as your son and yourself, need caring, kindness, patience and listening. Trying to force you, or him, to change may only drive us all farther apart.”
    I believe that too and I want more Will’s to articulate this from his position. He has a powerful voices.
    What I was trying to say in my recent post is that at the current time, with the current resources, there are people with whom we (I? – maybe I am the only one) can not make a connection or despite our current best efforts get into trouble with police or others in the community or still reject us. I respect Will’s work and his model for engagement and see this as a model. I also agree with Will and others that we desperately need resources to be directed into this direction.
    I was just trying to explain that if we could at the same time acknowledge that some of us may sometimes fail in our efforts, we may do better at moving forward as opposed to have people talking past each other from different sides of this difficult discussion.

  • Right now, the drug class that is getting huge attention is the stimulants. While these are far from new, there are a number of patented formulations that are heavily marketed. What the companies – along with the psychiatrists KOLs – are doing is to expand the potential market. So ADHD now extends into adulthood. Doing the math, it is easy to see how this quickly broadens the market for drugs that were once promoted for use only in childhood. But Vyvanse just got approval for the new Binge Eating Disorder. So inattention and overeating – two ubiquitous traits of modern life – are now the potential target/market for these drugs.

  • Hi Sa,
    I realize I did not elaborate much on my comments since I was just trying to reflect on one part of this post that I especially liked. What I am trying to say is that it is often just hard to understand why any of us get to be the way we are. I think in trying to find meaning, we may come upon an understanding that makes sense to us. That can often be helpful. But it does not necessarily mean it is “true” in some absolute sense and it does not mean that it will apply to others who appear to be struggling in similar ways. I think we all need to remain humble and recognize that there is going to be much uncertainty.
    Now, let me add that I know many people here are certain that they have been harmed by others including psychiatrists and I am in no way trying to undermine those voices. But I think it gets problematic when any of us make assumptions that apply to others. Let me be specific by focusing on psychiatry. Years ago, there were assumptions that if a person developed an extreme state (what I would call psychosis), this was due to a failure of parenting and bonding going back to the first months of life. Later on, there was an assumption that this was due to the failure of the development of certain regions of the brain. I do not think either of these positions are true in any absolute sense although parts of them may possible true for some. I also think that if one is convinced of either of these assumptions, one can do harm. The point is we do not know.
    Similarly with drugs. There are good and important reasons to be cautious about their use. But there may be people who find that the benefits outweigh the risks. These are difficult decisions for anyone to make and I agree with many here that people do not often get adequate information on which to base their decisions (and there is much we need to learn), but to blame everything on drugs seems to miss other things that might be at play and that is what I think Timothy was trying to articulate here. The problems were are describing seem highly heterogeneous so solutions will likely be as varied. I am not sure if that clarifies my comments.
    I am in a position where I agree with both Timothy Kelly and Robert Whitaker. I do not see their arguments as either or but both/and. I see Timothy’s blog as an important extension of Whitaker’s argument.

  • Alex,
    I have tried my best to address you here – and in our other communications – with openness and respect. You make it clear how inadequate that has been. It is disheartening to think that has left you feeling “demeaned, dismissed, resisted, and somewhat manipulated.” Maybe that is my own personal failure or maybe it is something related to my psychiatric perspective. I do know that was never my intent. But this is not the point of this current blog and that is in part why I am exiting this particular conversation.

  • Timothy,
    I am so glad to have your contributions on MIA. I have come to deeply value your perspective.
    This is a rich essay and there is much to think about. I will focus on one interesting point – the notion of “moral negotiation”. It has struck me that often – when we talk about drugs or trauma or the “realness” of so-called psychiatric conditions – there is this subtext of morality: who or what to blame. Some may target the family or the person who is considered lazy or defective in some way or the psychiatrists who are uncaring or the toxic drugs. While I hope this is not seen as an attempt to avoid responsibility for my own actions, this search for someone to blame can divide us and distract us from finding common ground and solutions.

  • Sa-
    I am not going to discuss specific cases due to confidentiality but I was addressing the larger question – do people who experience what I would call psychotic states and who take drugs to treat the condition ever recover while on the drugs? The answer, in my experience, is yes. That group is underrepresented on this website but they are out there and I know some of them. I also know people who do not do so well. Outcomes are highly varied and that makes it hard to make sweeping generalizations about whether these drugs are “good” or “bad”.
    As I have said here and elsewhere is that there is good reason to be cautious with these drugs and, if they are used, to do everything one can to use them in the lowest dose possible and for the lowest duration possible.

  • Someone else,
    I have no way of answering that last question. In the group with the highest exposure, the risk among those who were on anti-cholinergic drugs was 1.5 times higher than those who weren’t. It is hard to do the calculations of the drugs you have to figure out what risk group you would be in. Not all of the drugs on that list have anti-cholinergic effects. And there are other factors that also contribute to risk – diabetes, family history, high blood pressure to name a few. I think it is hard to take a study like this and apply to any given individual but it informs us about relative risks.
    I am sorry for what you have been through although it sounds like there were consequences for at least one of the psychiatrists involved.
    I am not addressing what you and B have raised about forced drugs since this has been discussed pretty extensively in my last blog.

  • Someone Else,
    I do not want to ignore a direct question, but I am not sure what you are asking. People are free to form whatever conclusion they want about me. I have tried to be transparent.

  • As I note above, the civil commitment process in VT is rigorous. It was not that way in other states in which I practiced. I do not know what I would be doing at this time if I was still in that setting. I also am well aware that money has an enormous influence and many people who find themselves in a commitment process do not have adequate resources. It is unfair. Perhaps I am wrong to think I try to help by approaching this with as much honesty and integrity as I can. I am vigilant about not overstating what I know (for instance with regard to the prediction of dangerousness or the dangers of delaying the use of drugs). But I am aware that the law is as much about who has resources as it is about what is written in a statute.

  • Sa,
    Although the laws vary from state to state, it does require a hearing to give someone drugs against his/her will. the exception is in an emergency situation (and I understand that is a big exception). In VT, it requires tow separate hearings and they tend to be rigorous – much more so than in the other states where I practiced. they typically last a minimum of two hours.

  • B, Alex, and whoever else may still be following this thread,
    I am writing to let you know that I have read your comments. I appreciate the time and thought you have put into this most important discussion. I do not want to be dismissive but this will be my last reply.
    A concept we are hitting on – who has capacity to make decisions – is complex and I do not think I can do it justice. While I understand the point – at least I think I do – that harm is done to people when they are forced into hospitals or forced to take drugs they do not want – I also think that your experiences do not speak to every experience.
    There are several other writers who come to mind. The first is Elyn Saks, an attorney who has also been forced into hospitals. Her best seller, “The Center Can Not Hold” details her experiences. She has also written another book, “Refusing Care” which is a scholarly approach to this topic.
    Rachel Aviv wrote an article for the New Yorker, “God Knows Where I Am” 9http://www.newyorker.com/magazine/2011/05/30/god-knows-where-i-am) about a woman who starved to death after she had been released from a psychiatric hospital. When this came out, what I found so fascinating is how people with varied positions all found their world views supported in the story. For me, it described the complexity and uncertainty of these situations, how there is no “right” answer, and how many people suffer. But others saw clear justification for more aggressive interventionist approaches and some saw further justification for never intervening against a person’s will.
    I had an important experience in my first few months of psychiatry residency. An older man came into the hospital in extreme distress. His bowel was twisted and the surgeons said he would die by the morning without surgery. They said he would have a full recovery with surgery. The man declined but his children insisted he get the surgery. I was called. I was 27 and a few months into my training. It was the evening and no other senior physicians were available. I met him and he told me he just wanted to take his chances. He thought he would pull through. If I determined he had decision making capacity based on that interview, he would not have had the surgery. Since I was told he would be dead by the morning, I anticipated having to defend this decision to his children and my attendings who would not have the chance to also meet him. Since the surgeons insisted there was no chance of hope and the man told me he thought he would pull through, I said that he did not have capacity because he did not appreciate the risks of the decision he was making. My main objective was to trigger a hearing because I did not want to make that decision on my own. So at 10 pm, a judge was called in and we had a hearing. The judge was an older guy, he talked to the man, and he said the hospital could not do the surgery against the man’s will. I was not unhappy with that outcome. I requested the hearing not because I was intent on a specific outcome but because I did not think I should be making that decision by myself. The man survived. I have carried this story with me. I am glad that I work in a state that has a fairly rigorous standard and process for evaluating forced treatment. I think this is a decision that requires rigorous scrutiny.
    All I can say is that I understand that there are subjective fallible decisions involved that have serious consequences – and sadly traumatic consequences – for people. When one has so little trust in psychiatry, I understand why it is scary to think that psychiatrists are given this power in our society.
    At the same time, I believe there is a space where some of us – although we may not have common ground in some areas – can work together to make many improvements. I found this in the IPS training I just completed. I find it in the approach of Open Dialogue. I find it in the Hearing Voices movement.

  • Alex,
    Thank you for your thoughtful comments. I do think there are some tricky philosophical questions. But to the question of whether I would practice if I did not have this authority – I would welcome it! This was not something I thought much about when I entered psychiatry. It is not what drew me in. But once in, I certainly realized I needed to reckon with this in a serious way and that is an ongoing project. But if I did not have that authority, I do not think the problem would go away. So what would you propose for the first gentleman I describe above with frostbite?

  • boans,
    That is quite an image. One of the things I learned in IPS is that we try to make a connection and we try to understand the other person’s worldview. I guess I am just trying to articulate what it looks like from my position and to share some of the values I have that inform the choices I make.

  • B,
    Re: #1: I see that my answer was not as clear as it could have been. I think this is because I sometimes have trouble finding good language. Let’s say there is someone who is walking for miles in our sub-zero weather in order to meet up with aliens and in the process he has sustained frost bite. This person is found by a concerned person who sees him walking in the road and calls the police who persuade him to come to the ER for evaluation. If this person refuses all offers for safe shelter insisting he is impervious to the cold (despite the evidence otherwise) and tell us the aliens will meet him and will care for him and I was called, I would likely hold him in the hospital against his will. If on the other hand, a different person comes to the ER with frostbite. He has been camping in the area for awhile. He seems to generally know how to mange but on this night things got out of hand, If he says he wants to leave and seems to have some reasonable ability to fend for himself, I might view this as an unusual choice but I would not be likely to intervene.
    Re #2: I encourage you to go ahead and fight to change the laws to match your beliefs and values. Re: danger to self, we are much closer together on this. I do agree people have a right to make a choice about whether to live or die. I think it gets complicated when someone presents themselves to mental health professionals because of some act of self -harm but then refuses any offers of help. I just completed Intentional Peer Support and this was discussed nicely there. The idea is to try to understand what it is the person is asking for when the person comes to you with either the self report of having urges to self harm or after having acted in that way. This is an approach developed by someone with lived experience and it is offered as an alternative to coercion. I highly recommend this training. I think it matches nicely with what I have tried to do for years but it also enhanced my perspective and was extremely helpful. http://www.intentionalpeersupport.org/
    Re #3: Again , that is your preference and you can try to change the system. I just do not agree. I think we are at an impasse. But where I live, the jails are not going to keep people who are judged to be experiencing psychotic symptoms.
    Re #4 and 5: I do not mean to be disrespectful but I think we are at an impasse.
    Re #6: One of my earliest blogs https://www.madinamerica.com/2012/05/coercion/
    I thought it was important to be honest and transparent about this. There were over 200 comments and I was actively engaged. This has come up on many of my blogs since. Again, you may see it differently, but I consider that engagement.
    Re #7: Yes, I disagree.
    Re your final post- I think there are many ways to engage with someone in this kind of state. I mentioned Intentional Peer Support. If I were on a crisis team and we were called, I would not refuse to respond but there are many kinds of responses short of breaking down the door and I would try that. Can I absolutely say that under no circumstances would I condone breaking down the door? No. But as I said earlier, I would look for the ambivalence. If she were 100% ambivalent, I would wonder why she told her boyfriend of her intentions. I have known many people who have chosen suicide and the impact on those who are left behind is severe. So I would have some concern for the boyfriend who as also caught in a difficult situation. But perhaps most important, I would keep in mind for the beginning that I do not have the answers. People are complex. I do have a certain notion that many of us are looking to connect and I would try to make a connection.

  • Hi Sa,
    This was a statistical finding. They controlled for the time period when people were on the anticholinergic drugs. They found that there was an effect even if people had stopped the drugs. This had the same impact as those who were still on them. In all instances, there was a dosing effect – the longer or higher dose people were on,. the higher the risk of developing dementia. Of course, not everyone developed dementiia. The risk was at most 1.5 times higher.
    You are correct that these are problems that emerge over time. No one in the study had any evidence of dementia at the beginning of the study. You are also correct that there are reports of cognitive difficulties for some people early on. What I have always wondered was to what extent this might be due to the crisis state. In my experience it can vary a lot from person to person. Many people who have psychosis, for example, do not seem to have any cognitive impairment (or none that is readily observable).

  • B,
    I will do my best to respond.
    I am sorry for the way that you have suffered. However, I can only take responsibility for those situations in which I have been directly involved. I have no idea what I personally would have done if I had encountered you at some point in the past.
    I am not sure where you got the impression that I think it is justified to commit someone to the hospital whose only problem is that he is talking in a way that I can not understand. The laws in Vermont only allow a person to be committed to the hospital if there is a risk of danger to himself or others and I follow that law. I understand that there is often a considerable amount of judgment in making that determination and that is another reason why I can only take responsibility for the decisions I have made.
    Your thought experiment about the person being brought to the hospital is a good one but I am often aware of people who have not been brought anywhere. They are living in their homes and are threatening the people who share the space with them. No one has ever intervened. The people in the home are frightened and call out for help. Interventions to try and understand the problem, meet the person in a respectful and humane way over weeks or months fail, and one day the person acts on the threats that have been made for months. These are individuals for whom I would love to offer some sort of respite but they reject everything we have to offer. What about this situation? Why are the rights of one individual more important than the rights of the others in that space? Multiple people are traumatized in these situations. Now if you tell me that you would prefer to have the person taken to jail,. that is fine. You have a right to your opinion but that brings us back to the article that was the subject of this post.
    When you say the violence is due to some action on my part, I will just say that this is not what I observe. Those of you who do not believe intervention is ever warranted are likely to find some proximal cause, some proximal trigger that if addressed adequately could have led to another outcome. There is no way to refute that. I will just say, please come join us. We are trying hard to help everyone live with dignity and autonomy in the community. I am being overly scrupulous when I say I am directly involved in committing people to the hospital. Most of the time, when people I work with end up committed, I was not directly involved. Often something happens in the community and they come to the attention of others who intervene. Prior to that point, I and others have often been working hard to find some way to help and to prevent that outcome. When I say I do not know what to do, I am admitting that the help we offer has not been adequate.
    You and others have asked for more specifics. I would prefer to be accused of being evasive than to take the risk of violating someone’s privacy. I live and work in a small town. I already take some chances by blogging here. There are certain lines I will not cross even if it means incurring the criticism form you and others.
    I agree that forced treatment addresses a short term crisis but does not usually lead to a long term resolution. I do know of some people who after the fact were appreciative of being brought into a hospital. Some of them spent large amounts of money or ruined relationships and look back in regret over decisions that they believe in retrospect were faulty. I realize that you will likely not believe me or insist that their beliefs are due to their being co-opted by the system. So be it. We all live in our own realities and that is just some of what I have experienced in my life.
    I understand I have a choice and I try my best to try all other means first. I understand that you would prefer me to retire and all I can say is that you probably will not need to wait too much longer. But your charge that I do not engage, is just hard for me to understand. I have written about this topic and tried to respond to the best of my ability. It seems that the only “engagement” that would satisfy you would be to fully accept your position. I am sorry that I am not able to do that.

  • Hi Alex,
    It is nice to hear from you. Yes, I have considered a silent retreat.
    While I do not disputed that our society could benefit from improvement on many fronts, that is a rather daunting task and it does not address some immediate challenges.

  • Eric,
    I agree that approaching this from an economic perspective will have some traction. As I noted above many disparate groups come together when there is a potential for cost savings. We need good data to support that. But we also need to show that short term intensive costs (let’s say in the form of intensive support for those experiencing psychosis) might yield longer term savings(as you note above in reducing the chance of a person being on disability).
    Good luck with your ongoing recovery!

  • B,
    Your argument- to prosecute people if they are breaking the law- is what is happening, according to those who believe in the concept of transinstitutionalization. This blog was a response to an article decrying the fact that rather than put people in hospitals we are puttin them in jails. We have many fewer psychiatric beds in the US now than we did a few decades ago. I think that is an unassailable fact. But on all sides, no one is happy about our mental health system. The authors of the commentary suggest building more hospitals. While I do not think you are suggesting we build more jails, I am not sure what it is you do favor.

  • Donna and madmom and others-

    Thank you all for the interesting discussion. I realize I do not comment to everyone but at least people can know I am reading and when I think I have something of value to say, I say it. It was suggested above that I ignore the negative comments and while an analysis of my comment frequency may suggest this is true, from my perspective, I am respecting the right to voice dissent while avoiding what seem like irreconcilable differences (for instance, that at this point I do not know how to avoid forcing some people into hospitals).

    It is interesting to me that David Oaks and I graduated in the same year from the same university. We did not know each other and we only met once at a rally at an APA meeting in 2012. From what I know of him and have learned since, I agree with what madmom has written. Of the many people from our graduating class who have gone on to have prominent careers in medicine – and many are psychiatrists – I think David Oak’s contribution’s are the most significant. I have enormous respect for him and I regret that our paths did not cross sooner.

  • Ann,
    I was going to reply that I blog here because I was invited to do so. Emmeline seemed to address that before I saw your comment.
    As for your other comments, I read them as comments that did not necessarily call for response. However, since you seem to want one I will try.
    I do understand that people are harmed by being forced into hospitals and I try to do what I can to avoid that outcome. And while I do not agree with your characterization of me as being in favor of it, I admit that I can not always find other alternatives. I recognize that this is not an adequate explanation for some. I stand by my decision to not describe particular situations out of concern for privacy and I understand that you may find this a poor decision that gives the appearance of avoiding open and honest discourse.

  • Hi Eric,
    You make some very good points including the notion that it is easy to romanticize the notion of asylum. My one quibble is that I do not think it is the psychiatric establishment per se who strangles funding for community services. Some of us are part of that system. I think the psychiatric establishment sometimes undermines the credibility of alternatives and that is important to acknowledge.

  • Thanks for the comment. Although I acknowledge there is no fine line, I am talking about people who are not engaging in discourse which I can follow. I am always wanting to give examples but then constrained by confidentiality. Even in the court system, where they see many people are not not following the rules, they call us in because these individuals stand out as different in a sometimes profound way.

    But fundamentally, I think this is what I am getting at with the “both/and”. We should never stop trying to engage in as collaborative and respectful way as possible.

  • What I think we can try to keep these discussions on “product” focused on outcome from the perspective of the person who is receiving our help. I just read a very good article on this (in the context of psychotherapy outcomes). As I understand this, the psychotherapy outcomes data tells us that it is the characteristics of the person seeking help along with the therapeutic alliance that accounts for something like 70% of the variance in outcome. The specific treatment (which one could call the product) accounts for something like 15% of the variance. Methods to teach skills to improve therapeutic alliance do not seem to be effective in changing outcome.The researchers used tools to give the therapist feedback from the client on the effectiveness of the intervention – after each session- and this appeared to have a bigger impact on improving outcome. This is from Scott Miller and colleagues. Published in “Psychotherapy in Australia” in 2004, Volume 10, number 2. “Beyond Integration: The Triumph of Outcome over Process in Clinical Practice”. I was going to blog about this even though it is an older paper. I also think there are readers here who are far more expert on this subject than I.

  • Thanks, human being. yes -“lose” not “loose” – it is odd that I make that error frequently when typing. I usually catch it but missed it this time.
    One of Gawande’s conclusions is that what the palliative care doctors are doing is not something that should remain isolated within one specialty. It serves as a model for how all physicians should conduct themselves.

  • Hi Richard,
    I thought you wrote an interesting post. You make an interesting and important point that there is a huge consumer market for these drugs. Most physicians I know identify themselves as careful about their prescribing but practice varies widely. Someone sent me a link to this interesting blog:
    http://well.blogs.nytimes.com/2013/06/10/dont-do-something-just-sit-there/?smid=nytcore-iphone-share&smprod=nytcore-iphone&_r=0

  • The importance of this work and its implications for all of medical therapeutics can not be overstated. From the article:
    “When results are not published or are published selectively based on the direction or the strength of the findings, healthcare professionals and consumers of healthcare cannot base their decisions on the full body of current evidence. This ignorance can lead to the use of ineffective or harmful interventions and to waste of scarce health-care resources. For example, when unpublished studies were included in a meta-analysis, the antidepressant reboxetine was shown to have more adverse effects but no better efficacy than placebo for treatment of major depression – a different finding from that when only published studies were included. [60]”

  • Thanks. I was referring to a kind of situation where, for instance, a person sees messages (that others might call coincidence) that indicate he is under some type of surveillance or in harms way. The messages are so obvious to the person that he can not accept that loved ones do not also see them. He believes, therefore, that anyone who denies seeing them is lying and part of the problem. When I meet people like this, the crisis is not so much that he has the belief that he is being watched but that he has accused his family of being part of the plot, is very angry with and/or frightened of them, and is acting towards them as if they were his enemy.

  • Will (and others),
    Thank you for this post and interview.
    Do you have comments on how to respond when others are brought into the belief? I have been involved in a number of situations where family members are accused of having knowledge that they will not confirm. The person at the center of concern believes that others see the signs but will not – or are being kept from – admitting that they see them. This can make it very hard to listen in an empathic way because the person presents the only empathic response is to admit that one is in on the plot or scheme or other events.

  • That study was published in 1991.
    http://www.ncbi.nlm.nih.gov/pubmed/?term=mcevoy+hogarty+steingard
    At that time, academic leaders in this field were emphasizing low dose use of these drugs. All of this got washed away in the tsunami of marketing accompanying the newer antipsychotics. They were promoted -by some of these same academic psychiatrists – as being so much safer that people did not need to worry about dose and that whole message got lost. Residents do not even learn any of this these days.
    This was a well done study by two giants in the field (I had a bit part and they were gracious to add me as an author).

  • Bob,
    Thanks for this post.
    Jonathan- I think the extra pyramidal side effects can be mitigated by conservative dosing. I am not convinced that there is any true difference between haloperidol and risperidone. When risperidone was first marketed doses of 2- 16 mg were compared to haloperidol 20 mg. the recommended doses were 3-6 mg and nowadays most people think 2-4 mg is most optimal. We now believe these drugs are dose equivalent. If equivalent doses of haloperidol were used, I doubt risperidone would ever gotten FDA approval.
    I worked n a study in the early 1990’s which showed that most people respond to haloperidol 3.5 mg and the dose was even lower for people experiencing a first episode of psychosis.
    Most of these drugs are now generic (although their costs remain high). So now there is a push for lurasidone (Latuda) as being weight neutral or effective for depression.
    But Bob is correct. VT had a “carve out” that was pushed through by lobbyists, NAMI-VT and physicians who were on the drug companies’ speaker bureaus.

  • Thanks, Carina. Your words and encouragement mean so much to me.
    As I told Richard, in retrospect, I would have worded that sentence differently. I am so used to thinking of all of these labels as (in the words of Thomas Insel, Director of the National Institute of Mental Health) “fictive categories”, that I forget others do not know how I think about these labels.
    Rob Wipond has an interesting discussion about how and when to use quotes: https://www.madinamerica.com/comment-history/?id=4177

    But hopefully you and other readers gathered from the content of that paragraph on”ADHD” that I share your concerns. It is not just children, it is now many adults as well.

  • Pat45,
    Welcome to MIA and thanks for commenting!
    I did not say much about the quality of the study but it would never be adequate to get FDA approval for this indication. Even though drugs may be on the market, they usually need to go through separate testing to get FDA approval for a new indication. They involve more people than this study did. Also, the effect sizes were surprisingly small. So although they found a difference between the nitrous group and the air group, they are only about 2 points on the rating scale they used. I am not sure that is a clinically meaningful difference. I would have been interested to have another control group – one who did not have depression but got nitrous oxide.
    But as I say above, I think we need to understand longer term effects. Although nitrous has been around for awhile, people are not using it – at least in medical settings – repeatedly over weeks or months.
    I am also not sure I agree with your last statement about ketamine having known effects that regulate on withdrawal. Again, I am not sure anyone has studied the effects of prolonged and repeated use of ketamine.

  • Joe,
    Thanks for sharing your perspective. I would not ever want to minimize the deep despair that some people experience. One challenge here is what we mean by an “informed” individual. One of my points is that our current system has not provided us with the kind of information that we need to make truly informed decisions. this is not only due to study design (one name I have heard for some of them is “experimercials”) to issues of lack of data transparency.

  • Thanks, Hermes. Oxycontin was widely promoted as similar to other narcotics but less addictive. Richard D. Lewis above talks about the huge push for the “fifth vital sign”. This was all part of a marketing effort by Purdue Pharamceuticals who made oxycontin. This is reviewed in Melody Peterson’s “Our Daily Meds”, an excellent book as well.
    I think the push to relabel psychiatric medications as “antipsychotic”, “antianxiety”, and “antidepressant”, was in part an attempt to distinguish them from recreational drugs. This all happened in the 60’s and 70’s when recreational drug use became more mainstream (at least in the US).

  • Richard,
    What I do know is this. Since I am fairly outspoken, many people approach me with their stories. A good number report long term benefit from psychiatric drugs including (actually often) SSRI’s. From my clinical experience, as you say, my experience is skewed. First of all, most of the people I see have experienced extreme states (what psychiatrists and some others call psychosis). I do not work primarily with people whose major problem is low mood. I have been skeptical of antidepressant effects for a very long time, so I am not in the habit of starting them (although sometimes I do and sometimes people come to me on them).
    For me, this story is rather complex. You tend to put the blame solely on psychiatry (as in your attribution of opiate overdose to biological psychiatry). Although I do not think I am an apologist for the profession (although I know many here consider me that since I have not completely renounced it and walked away), I think the pull to use drugs to treat the pain and suffering of daily life, long precedes the modern era of psychiatry.

  • Hi Richard,
    I agree with Thomas Insel who has called all of the DSM diagnoses “fictive categories”. I have written more about psychiatric diagnosis here:https://www.madinamerica.com/2012/03/what-is-in-a-name-one-psychiatrists-view-of-psychiatric-diagnosis/
    My use of the term ADHD was not intended to reify the category or imply it had some essential nature. I was just trying to describe how the stimulants have been promoted in the past decade.
    Similarly, my pointing to the lack of knowledge about long term effects was not meant to imply that there are no negative short-term effects. I was trying to point out that most drugs are studied for only brief periods of time before coming to market. They are then often prescribed for much longer durations of time.
    I can see from the comments that I did not do as good a job as I thought making my points in this blog!
    Thanks for commenting.

  • Jill,
    I do not know where to begin but I will try to bring this back to what I was trying to say in this post. The interest in drugs like nitrous oxide and ketamine points to the faults in our disease centered approach to drugs. These are not drugs that are specific for particular diseases, they are psychoactive substances with broad effects, some of which might be considered beneficial for some individuals. I am influenced by Joanna Moncrieff. Here is a link to one of her blogs that explains this further. I highly recommend her books:
    https://www.madinamerica.com/2014/04/angels-demons-politics-psychoactive-drugs/
    What I try to say above, is that currently when these drugs are prescribed, people are not told, here is a mood elevating drug that will improve your mood for a time. We say, you have an illness and you require this drug to treat it. Those are very different messages with different implications. I think that Dr. Moncrieff gets at this point in the blog above.
    As to the use of opiates to treat depression, I would suggest you look at how effective their widespread promotion for the treatment of pain has been. It has led to a surge in addiction and now a cottage industry in the treatment of those addictions.

  • Hi Darby-
    Thank you for sharing your experience. All of the drugs – the one you like and the ones you do not – are psychoactive substances. I am not opposed to their use. I am in favor, however, of learning from our past experiences. You took nitrous oxide once. Many others have as well. Has anyone looked systematically at the long term outcomes? What if it gets administered weekly over months or years? If a drug company comes out with a form that is easier to use, will they be transparent about their data? Will they study it for more than six weeks?
    Until we reckon with the mistakes that were made in the past, we are likely to repeat them.
    But the other point I made was not specific to the pros and cons of nitrous oxide but to the notion that these drugs treat specific illnesses. I think you and I are in agreement that the experience you had with nitrous oxide was not because you suffered from an illness.

  • Jill,
    I am not sure if you are joking but if you are not, I would have the same concerns about bupe. Although it is safer – with regards to overdose risk – than methadone or heroin – it is nevertheless a highly addictive drug. Determining who wanted bupe to treat depression and who wanted it because it just feels really, really good, would be a challenge to say the least. It was another drug that was hugely hyped and it has not been nearly as easy to prescribe as advertised.
    My focus is not on finding better drugs than ketamine or nitrous oxide. I am talking about the failure to learn from our experience the past 60 years. We did not look carefully enough at long term risks, and withdrawal and market distortions.

  • It is just pretty striking when someone starts a drug, gains 30 lbs fairly quickly, stops the drug, and loose the weight quickly. I have seen this happen when the person is not so aware of trying to loose the weight. By all means, though, the causes obesity are multi-factorial.

  • chrisreed,
    How are you getting to such low doses? do you use a compoinding pharamcy? I know that is very expensive. When I had my article published in the Washington Post, one commenter said he used a nail file to shave the drug. He would reduce by 4 shavings at a time. I am suggested this to some people but I have no data or experience. I am just sharing because if you are not dealing with a capsule, it seemed like a clever approach.
    I think the sedating drugs may be harder because of the rebound insomnia but I have had people have trouble as well with the less sedating drugs.
    Thank you both for sharing what you have learned. Outside of user forums, I have not seen this kind of careful discussion if taper. The Journal of Clinical Psychiatry just published a report on tapering olanzapine and risperidone.They reduced by 50% and then followed people for 6 months. Their group did pretty well. they looked at receptor occupancy.Their goal was not to stop the drug but to establish the minimally effective dose. I would not do it this way since I am not going to pet scan people but this kind of discussion in a mainstream publication signals that people are thinking about this. If I have time I will blog about this but here is a link.
    http://www.psychiatrist.com/jcp/article/Pages/2014/v75n11/v75n1102.aspx

  • Yes, Hermes. In this respect, practice does not follow guidelines. But with regard to weight gain, I am just speaking from personal experience. From this experience, I would say that reducing the dose does seem to make it any easier for people to loose weight. Some are able to loose weight after some years but for others they only loose weight when the drug is stopped. I have other patients who still have trouble loosing weight even once the drug is stopped. Since many of us have trouble with being overweight, it is hard to to know if the prior exposure to drugs is what is contributing to the difficulty in loosing weight.

  • Hi Hermes,
    I just saw this since it was re-posted. I think a shift that needs to be made is to put the risk of recurrence of psychosis more on par with some of the serious long term risks. For many reasons this is hard for clinicians, and I think for some families as well as those who have experienced psychosis. I discuss this a bit at the end of my most recent post. Psychosis is often quite dramatic. It is not subtle, it happens right in front of you. And if a person has to be in a hospital, the cost is high. We are always under pressure to minimize cost and those pressures are put more on short term outcomes. The long term side effects are in many ways more subtle.When things happen over many years, it is harder to feel comfortable with correlations. So if a person is not working or develops heart disease, one can attribute it to other factors. Without the long term studies, it is harder to attribute it to the effect of drugs (especially when we have been trained that psychosis itself often leads to long term disability and impaired function).

  • B-There is very good evidence that dose impacts most effects of the drugs- tardive dyskinesia, muscle stiffness, sedation. I think it is less clear of dose impacts propensity to gain weight. There is also already good evidence that for those experiences first episode of psychosis that the dose required is lower than what is typically used. However, there is also evidence that doctors do not follow those established – mainstream – guidelines. The NIMH RAISE study of FEP is beginning to publish results. They found that when people were referred to this study, many were already on doses that exceeded the evidence based recommendations.
    I know that there are people on this site who want to completely eliminate the use of there drugs and the role of psychiatry. However, there is much harm reduction that can be achieved if the idea is pushed that if one uses these drugs they are prescribed at the lowest dose possible and that dose minimization remain an active goal. This is actually a non-controversial idea – or at least it should be – since there has been evidence to support it for decades.

  • Rossa,
    In my lecture series, the conclusions I draw are this:
    1. Dose matters – there is less harm in being on a lower dose and the way the system is structured people often get started on higher doses than are necessary. It is worthwhile to have this discussion and try to determine the minimally needed dose.
    2. Whatever the “minimum ” is may change over time so this can be revisited again and again of a person chooses. We make recommendations based on studies done over two years but people are on the drugs for decades. Over decades, these drugs appear to interfere with recovery and this also appears to be a dose related effect. So for some people, getting off the drugs may not be the goal but if you can help someone reduce the dose by 80%, you are probably doing a good thing for that person.

  • Thanks, Jonathan. I think that these days it is far more common- and part of recommended practice – to follow weight, blood pressure, and metabolic panels. I was talking above about what happened in the mid-90’s. I also agree that tapering is – and should be – complex and highly individualized. It is hard to know how to present this data. Some people were on other drugs and sometimes those drugs were tapered based on the person’s individual situation and preference. In this report, I focused on the taper of neuroleptic drugs only.

  • Hi Jill,
    These are interesting ideas. Cost is always an issue and I have been confused about which supplement(s) to offer. It is a daunting field with many variables and multiple opinions. I have had extensive contact with Bonnie Kaplan, another MIA blogger and I have read many of her papers on micronutrients. I have offered these to the folks who would take them but many decline. It is hard to know if something is “effective” because we are looking for the absence of problems. I realize that one could say I am too worried about exposing people to things that they might not need than I should be but I work pretty exclusively with people who have limited financial resources and I want to be sensitive to that.

  • Thanks,B. There is so much focus on randomized controlled trials that clinicians tend to discount other types of knowledge. Many years ago, when olanzapine(Zyprexa) came onto the market, I did a similar thing. At that time, I was enthusiastic about this drug and wanted to track who did well on it. One thing I did not track initially was weight since not much was said about this when the drug was released. However, after a year, it was obvious that people were gaining weight. So I bought a scale and started weighing everyone. Just relying on simple observation, I learned that this drug was associated with profound weight gain. I then watched as leaders of my profession quibbled for about five years over this because of the conflicting results of the “experimercials” that were lauded as the gold standard for evidence. This had a major effect on my development as a critical psychiatrist.

  • Thanks again for sharing this important story. At the MIA Film Festival, I met two other parents who had similar stories. They were both professionals in the field who happened to have children who experienced extreme states. Because of their knowledge of traditional treatment, they did what you did and had similar positive outcomes.
    It is good to hear from you and I am so happy to know that your son continues to thrive.

  • They were natural causes. I have not collected information on how many years people were on medications prior to beginning this study. It variable but I did not include those who were fairly new to the drugs since during this same time period, I was working very hard to minimize dose in all of those people I saw. The diagnoses other than schizophrenia were primarily Bipolar disorder.

  • I agree that this is just a beginning. But with regard to the 70% males- that was in the group who decided to taper. the abrupt group was 36% male and the non change group was 53% male. I am not sure what to make of this beyond pointing out the women in Vermont tend to be very independent minded!

  • With all due respect, the medical model is already just another culture of healing. People make other choices all of the time. I support choice and I try to be explicit that I meet people within a certain construct. While I appreciate you and others giving me career advice, I have tried to explain that this is not about me. I get it that I could make other choices. This type of response seems to be a distraction from my core question – my core question of what to do with people who manifest extremely disruptive behavior and who decline so-called alternatives? You said in your talk that all societies need to utilize some form of coercion. I am interested in understanding how you would want to see this manifested if tomorrow all psychiatrists were to refuse to coerce anyone to go into a hospital.

  • Jonah,
    I read your comments but I am not sure how to explain myself further. I gather I am not being clear. My intent here is not seek approval from you or anyone else but to try to understand what would replace psychiatry. My point about alternative programs is that when the police are called, the person will be taken somewhere. Where do you think that should be? What do you think should happen? I am not arguing with you but seeking clarification. I think that needs to be articulated before others outside of this community will be open to such alternatives.
    (You find my rational for staying in practice to unethical and my responses to be feeble; if it is any consolation to you, I am getting old so one way or another I will not be doing this for too much longer.)

  • To Jonah and David,
    When I became a psychiatrist, it was never with the intent to force people into hospitals. I quickly learned that if I chose to work in certain settings and with certain individuals, society bestowed upon me an authority to determine who among us could be coerced into hospitals and coerced into receiving drugs or being restrained. If you look at the practice of most psychiatrists, they avoid this kind of work. For many reasons, I did not.
    For many years, I accepted the constructs of mental illness and within that construct, the imposition of force makes some sense – one is “treating” the individual. This is David’s main point, I think. However, I never took lightly what was clearly an enormous responsibility and authority given to me at a very young age. Of course, others might judge my decisions differently, I do not expect you to take me at my word.
    As I increasingly reject this model, the authority is harder to hold so you ask why am I still here? Fair question and for now, I am taking the utterly hubristic notion that if not me, it would be someone one else.
    But again, to be clear, David’s idea is to turn this power to the police. I will tell you that the police turn it back to us. I try very hard to be circumspect with the authority granted to me. I am clear about, for example the limits of my ability to predict future behavior (for example, violence towards self or others).
    Furthermore, you ask what would happen to me if I refused to use this authority? I refuse all of the time. In fact, most of the forces on me today are to keep people out of hospitals. I do everything I can to keep people out. It comes down to liability – if I determine that someone can be forced not a hospital and that person subsequently harms himself or others, then I bare responsibility for my decision. In that sense, I back away from this power all of the time. The point is, I do not back away 100% of the time so I think it is only honest to acknowledge this.
    David – I believe that you said in your talk that you thought psychiatrists jump to the use of coercion faster than others and it seemed then that you were criticizing the rapidity of response. If I understood you correctly, would you therefore condone a psychiatrist you you determined to be suitably slow or circumspect in using this authority?
    To Jonah- in my current job, my main use of coercion is that I have the authority to force a person into a hospital.There is a separate legal procedure to force people to take drugs and I am not directly involved. However, I think I should take responsibility for my role in the system. In fact, I think any one who offers services but who limits those services to certain people or who asks people to leave or who ever calls the police because a person can not conform his/her behavior to the requirements of that program, is participating in coercion. At the panel on alternative approaches, virtually everyone admitted to doing this at some point.

  • Thanks for posting this. I enjoyed your talk and wanted to have a chance to re-read it at a later date. This is an interesting hypothesis and I think there is merit to the proposition that society needs something like psychiatry to serve certain functions and the hypotheses of psychiatry came after this need was firmly established. I respectfully reject this one statement:
    “I venture to suggest that most practicing psychiatrists, if pressed, would choose to replace or discard any existing treatment or intervention save one: the power to impose a treatment or intervention.” I have acknowledged that I am a practicing psychiatrist who at times participates in the process of coercing people into hospital settings, I would gladly give up this power.
    But in your talk, I recall you saying that you understand and accept that coercion is a part of any civil society. If psychiatry were no longer the instrument of coercion in the setting it serves now, what do you suggest as the replacement?

  • Hi Russerford,
    Thanks for the comment. I do not think anyone addressed duration of untreated psychosis since the focus was on long term use of neuroleptics. It is, however, an important topic. I have addressed it in this blog:
    https://www.madinamerica.com/2013/04/optimla-use-of-neuroleptics-part-3-duration-of-untreated-psychosis/
    This notion was based on a hypothesis proposed by Jed Wyatt in the early 90’s but it quickly became accepted as “truth”. while Andreasen’s studies do not specifically disprove the notion, she did the study expecting to find that neuroleptics would halt brain atrophy but instead she found they exacerbated it.
    In brief, I do not think there is conclusive evidence that psychosis is neurotoxic.

  • Boans,
    I have worked in ER’s and, atleast in my state, there is much less over sight into the use of drugs over a person’s objections. They can be administered in an ermergency situation. As you have experienced, the definition of an emergency is subjective.
    To others on this sub-thread,
    I agree that Insel remains wedded to the notion that we HAVE to understand the brain in order to help the person, but his open acknowledgement of my profession’s failures still strikes me as remarkable.

  • Truth-
    Thank you and thank you for sharing your story. It is an important one. I found it striking that at the conference I met two other parents with similar stories. One was on one of the panels and she shared this with the audience. These were two other parents who, knowing the “system,” worked hard to keep their children out of it.With loving support and time, their children also recovered.
    I am so grateful to have been able to spend time with you at these most recent meetings.

  • Jill,
    Also, how would this type of inflammatory process – and required work-up/treatment – account for those who get better with time and support? This week-end I heard of three individuals who fit that profile. The only reason why these people were not treated in the traditional way is that their parents did not allow that. this is important because these decisions were made not on the basis of some particular symptom profile but on the basis of personal/family choice. If the treatment for an inflammatory process were aspirin, then I could see offering this pretty readily. Most anti-inflammatory agents are pretty nasty, however. This is another area that is currently being hyped on TV and elsewhere and I just can’t help feeling a bit reserved about this.

  • Jill,
    While I am aware of NMDA receptors playing a role in some psychosis I did not think there was evidence that it played a role in all or even most psychosis. Can you give some further links. (and I apologize if you have done so already)? It is one thing to practice medicine and it is another to order tests for the sake of seeming to be medical. I certainly agree with helping people to improve their sleep wake schedules.

  • Thank you for your comments.
    Re: “Open Dialog wonderful .Truly , and yet do we need psychiatrists to administer it ?”
    I hope my answer was a clear “no”.
    I think a physician can be a partner to a team but not as a leader or a person who holds authority to label(although it is tricky to not have that authority thrust upon oneself). There is medical training and knowledge that may be of help to some but I have found it helpful to present this not in a top down hierarchical way but in a more humane way that recognizes the expertise of everyone in the room. Mary Olson and her colleagues have helped me with this.
    Someone at the conference said to me,”You can not be an expert of you have never withdrawn from psychiatric drugs.” I wish I had the opportunity to talk more with this person. If you happen to see this, let me respond:
    I think there are many different kinds of expertise. The person with lived experience has so much to contribute. I mean that honestly. It is a different kind of expertise but one that is no less valuable. In addition, right now, the greatest expertise on drug withdrawal resides within the large community of those with direct experience. The internet has been extremely important in making that information available to a larger audience.

  • Thanks, Mary. And thanks for being such a wonderful teacher and role model. The paper is such a clear and accessible description of the key elements of dialogic practice. I appreciate that is is openly available. I look forward to following your ongoing progress with this important work.

  • Thanks, Gene. We have started a group – the Critical Psychiatry Network North America – and you are welcome to join us. Tight now, it is mainly an e-mail list and it offers a place for psychiatrists who are thinking in a critical way to share reflections. You can contact me to be added to the list.

  • Thanks for these comments. This is a pressing issue. There is a big push now for early intervention. But there in the dominant view, early intervention emphasizes the medial model. A less dominant view, suspends judgement and focuses on engagement and understanding.
    I have worked with young people who come in to the clinic for the first time. In most cases, they do not seem to have a preformed notion of the problem in a medical sense. Sometimes their parents do but not the person themselves.
    I completely agree with you that increasing self agency is critical. I guess I was just saying that I find it easier to talk about that goal than to effect it, at least in some instances. I still think it is important and I suspect that one reason that more people in my taper group are working is that even the discussion about tapering increases a sense of self agency.

  • Nijinsky and Richard-
    Although I agree with some of what you say – reality is always personal and subjective to some extent- I do think there is often a consensus on some topics. So if someone no longer believes that food is essential to his survival and stops eating, I feel comfortable predicting that over time this person will loose weight and eventually be unable to live. This will happen quickly if the person does not take in fluids.
    If you are both saying that the entirety of experience is subjective and that nothing is in the realm of consensus then it is true we disagree. Now, we could say that in this case, we do not share reality. But in this instance, I do not consider either of us to be psychotic. We just have intellectual disagreements. It is a disagreement that people have had for hundreds of years.
    Is there a clear line between these things? I have pondered this for many years and my current thought is that no – there is no a clear line and the demarcations we make are fuzzy. In fact, I think it is in this fuzzy area that so many are angry: when an idea was considered psychotic but is just a less popular world view,and a person gets labeled for holding that view. That is why I think it is better to be cautious and go slowly and give a person the benefit of the doubt and work very hard to try to make sense and gain some common understanding.
    But some ideas are extremely idiosyncratic and lead a person to have very significant problems getting along in the world in a safe way. That is how I see it, at least, and that is what I was trying to think about here.

  • Thank, Wayne. And Steve McCrea as well!
    Wayne- that is exactly my point. I think these two things can be true at the same time and with the same person: the extreme distress is frightening to others and the act of intervening my be traumatizing for the person at the center of concern. So can we try to minimize traumatizing experiences while we also acknowledge the fear and helplessness those around the person may be feeling?

  • Cat night-
    Thank you for your comments and for sharing your perspective. Honestly, I would not want to spend a night on a psychiatric ward. I am not vilifying people who do that work but it is one of the things that drives me to help people stay away. I would much prefer to have the resources to help people in their homes if at all possible.

  • Thank you for your comments. I chose the term “non-consensual reality” as awkward and difficult to define as it may be because I wanted to avoid using what I think may be a more medical term “psychosis”. I understand there is no one single reality – we all derive it based on our won experiences. this cold be the topic of an entire book. but sometimes people have beliefs that are idiosyncratic and in holding that belief act in ways that others have a hard time understanding. I just wanted ot talk about that.

  • You make some good points. Ironically, this has come about through regulators whose role is to protect patients from self-harm. It is an unintended consequence that inpatient units are places where an incredible amount of resources are spent on this type of monitoring.

  • Thanks, Diana. I look forward to seeing you there.
    I should add that there are many people who are doing fine, even thriving. I am writing about the dramatic and most difficult situations.
    I think my writing is an attempt to keep me from getting drawn into “hopeless nihilism” as gadmayer wrote above.

  • I am sorry that you find my writing filled with circular logic. I think our goals are similar – to find respectful ways of helping people that do not include any form of intervention that the person rejects. I think that is best done from the very beginning and Truth in Psychiatry offers an experience that demonstrates what can happen when there is a family and system i place to support a person through a crisis. I was trying to articulate the ways in which this has been a challenge for me.

  • I have wondered how you and he were doing so thanks for the update! This has been a very important story for me to hear so thank you and your son for sharing. I agree with you though – you need a system (family, mental health professionals, etc.) that believes that what you did was worthwhile and valuable. I am trying to do this kind of thing with young people I see within the limits of the system in which I work.
    Thanks again for sharing.

  • The data I was referring to here was a more recent paper in which he looked at those individual diagnosed with schizophrenia and evaluated for the presence of psychotic symptoms. He divided this group into three: one who was on drug at every assessment point, another who was on at some times but not others, and another who was never on drug at any assessment. The numbers i cite compare those always on drug with those always off. he has a graph in his paper which shows this nicely but I could not figure out how to post it.
    I discuss it here:
    https://www.madinamerica.com/2014/03/neurolpetics-anti-psychotic20-year-follow/

  • Isn’t it stigmatizing and patronizing to deprive the individual – the peer – to make the choice? If the agency had a policy of not allowing people receiving services from the agency to seek employment there, this would deprive the individual of being able to make the choice that is best for him or her. In a small town, it could deprive a person of finding employment. Some may choose to work elsewhere, some may not.What is beneficial for one person may be harmful for another.
    Where I work, it has been so helpful and instructive to see people grow and development in their professional lives. Although I would never impose this on someone who did not want to do it – and choice is everything here- I am so happy to have our peers as colleagues.
    It is complicated – relationships evolve in ways that can not always be anticipated – and I am happy to see that Dr. Aslam is studying this.

  • N.I.
    Thank you for your kind and generous statements. Thank you also, for sharing your story. It points to the complexity of knowing what path is best for each person. I am happy to hear you are doing so well.

  • Donna,
    I am sorry this left you feeling frustrated. To clarify one point, I did not intend this as a criticism of those blogs nor of any comments that might be considered as “abolitionist” with regard to psychiatry. Rather it was intended more as a rumination. It was an attempt to clarify my own position in contrast to others.

    To many others who have commented,
    I have found the conversation to be of great interest. My relative silence is for several reasons-
    I have not had much to add to what I said and it seems that others have used this post as an opportunity to reflect in a similar way.
    The comments came on quickly and it has been hard to follow some threads.
    My computer is on the fritz so I am viewing and writing in an iPad, which is challenging.
    Thank you all for your interest.
    Sandy

  • Mark,
    I enjoyed this post. In many ways, you are a roll model for me of a humane, community oriented psychiatrist. I imagine that your relative low level of response in this virtual community is due to the fact that you are in fact engaged directly with those in your actual community.
    For what it is worth, I hope you continue to post here.

  • Hi Nathan,
    I think you got it all but I would re-write the last point.
    It goes beyond the simple fact that someone wil prescribe these drugs so we might was well have some entity in medicine prescribe them judicioulsy and wisely (that was the essence of my blog, The End of Psychiatry, https://www.madinamerica.com/2014/04/end-psychiatry/

    But there are other solutions for addressing various kinds of distress. Some may be good and some not so good. We need to be cautious. I came up in the era of psychoanalysis. I think bad things happened under that umbrella. Someone sent me an e-mail today about this post. It is someone who chooses to not comment publicly. This person quoted Foucult: not everything is bad but everything is dangerous.

    Many of the comments here point to things that I think would bring about good change but I think we need to be humble about what we know and do not know. I would love to see money invested into trials of alternatives. This is starting to happen.

  • Thanks, Steve. Yes, I am a Moncrieffian! I had not heard that term before. I wrote a blog called, The End of Psychiatryhttps://www.madinamerica.com/2014/04/end-psychiatry/, in which I articulated where I thought psychiatry (or some subdivision of neurology) belonged. In brief, it is a small corner of the universe of people who could be helpful to those in extreme distress. That universe, in my view, would capitliaze on natural supports as well as on peers. I have studied the Open Dialogue model and it is my first choice of how to structure the mental health system.

  • Thanks, Eric. I do not pretend to have all of the answers but I believe my series of blogs on MIA is an attempt at critique of the existing paradigm as well as suggestions for changes.

  • Since you bring up statins- they are widely prescribed. They are not treating an illness, they are treating risk. It takes complicated statistics to understand who benefits from risk reduction. This is true for mammography screening; when one medical body suggested that frequent screening may do more harm than good, there was a huge outcry from clinicians who order the tests. I could go on and on. Read David Healy’s website to find out more examples.

  • Thanks for alerting me to Pollan’s writing on this topic. I have long thought that the agri-industrial complex is closely related to the pharma-industrial complex. In fact, so much of our industrial agriculture is propped up by the intensive use of antibiotics. It has occured to me that we give the livestock antibiotics to fatten them up so we can overfeed the populace thus creating an ever expanding market for newer drugs to treat the obesity related disorders of hypertension, heart disease, elevated cholesterol, diabetes, etc. I am not suggesting this is a planned out conspiracy but it does work out well for pharma. I was reading Pollan just before I got to Robert Whitaker and these topics have always been linked for me.
    Joanna Moncrieff’s drug centered vs. disease centered construct has helped me to think about this. If we we just think about a drug and its totality of effects, we can talk to people about how it may or may not be of benefit and what the drawbacks of its use might be. We (meaning psychiatrists) seem to have an easier time grasping this concept with some of the drugs we prescribe (benzodiazepines, hypnotics, for example) than others (antidepressants, neuroleptics, for example). We know that taking a benzodiazepine (valium, for example) will have an effect on anyone, not just hose who are anxious or sleep deprived but we do not think about that with the SSRI’s.
    But as drugs prescribed by psychiatry move ever closer to drugs used recreationally, it will be hard to sustain this charade. It has occurred to me that given the dismal results of the antidepressants drugs that in the not too distant future, the main drugs prescribed by psychiatrists will be stimulants, benzodiazepines, hypnotics (Z- drugs – zolpidem, etc., opiate agonists (methadone, suboxone), ketamine and other NMDA antagonists, even nicotine.

  • The New York State Department of Mental Health is sponsoring a meeting in October to discuss the topic of neuroleptics and long term outcome. They have invited Courtenay Harding and Martin Harrow as well as some other leading researchers. I am attending and will report back. This is very hopeful and promising NY also has Parachute NYC in which they have peers and professionals offering dialogic approaches, Intentional Peer Support, peer respite this is also very promising.
    I am not sure if I have answered your questions. I do think dose is enormously important and it is a message – more than no drugs- that could get traction within medicine.

  • Hi Uprising,
    Sera speaks to the impact that another person’s action can have on those who are trying to help that person. She wonders how these kinds of experiences influence people. She tries to understand the “other”.
    Daniel Mackler’s blog spoke in very broad generalities. He made pronouncements that are just hard to refute (biological psychiatry is no more a science than scientology, psychiatrists do not want to help people, etc). These are very broad generalizations and they are opinions presented as facts.
    I respect Daniel and I am interested in engagement but I just do not even know how to begin. I think about the many thoughtful psychiatrists (and other clinicians and family members and “experiencers”) I know who may approach human suffering from a disease model but who may be curious to learn from the experiences of those who write here. When one is labeled in that way, one is more likely to just walk away from the conversation.
    I hope that explains my different reactions to these posts.

  • Hi Sera,
    Thank you once again for your eloquence and honesty. Although one might say that in my own career I have moved in the opposite direction (I was less conflicted about being an agent of control when I was younger than I am now), I certainly resonate with the struggle over the desire to control scary and disturbing behaviors. You seem to suggest that one problem is that the person at the center of concern in your program may not have truly wanted to be there; so then what is to be done when the person who has disturbing or scary behaviors who does not want to be anywhere? Professionals are not the only ones who may respond in this way; I think a similar response occurs in some families.
    This is for me an interesting article in its contrast to Daniel Mackler’s post (https://www.madinamerica.com/2014/06/ode-biological-psychiatry/) that garnered so much attention.

  • I appreciate the richness of this discussion and wanted to add a few more comments.
    I am glad that Timothy Kelly has jumpted in. His writings and perspective have been enormusly helpful to me and I hope others consider taking the time to read more of what he has to say.
    Jonah (and others) – thank you for your thoughtful comments. You have given to me what I think everyone hopes for and most needs when in a crisis – to be seen as a human being. If I could change one thing about our “system”, it would be that – that when a person experiences this thing we call psychosis that we first and foremost respond to a human being and try to listen to the person, see the person, and try to understand the experience. Although I may have uttered these words before, I have to say they have a meaning for me that is different now in that I consider this notion to be healing in and of itself. I have learned that from many sources but much of it comes from hearing the voices of “survivors”. And while I always thought I did hear their voices (after all I spend my days talking with people in my office) there is something different that I have heard here.
    From so many kinds of sources, it seems clear to me that there are many people who go through these crises at an young adult stage but then come out of them. Psychiatry’s approach – lifelong drugs- is not needed in these instances and appears, at least for some, to hinder recovery. Forcing people to take these drugs can be deeply traumatizing. We do not know what is best for any particular individual and we need to be attuned and open to this fundamental uncertainty. Even when it seems that drugs confer some benefit (and I think it may for some), we need to be cautious in how we use them – dose matters and the appraoch of just adding on drugs when things are not going well, is deeply troulbing to me.
    Yes, this has turned into a rich discussion. But when I responded initially, it was not to defend myself or to increase the dialogue with me. I am priviledged to blog here! I was wondering about whether this post would shut out people who may be curious and, although not convinced of everything written here, open to exploring.
    Philip Hinckley has posted an interesting blog on the “chemical imbalance” and he gets to a key issue whihc is how psychiatrists are taught to fundamentally characterize these experiences. We want to bring people into these discussions so that they can examine some deeply held beliefs. Demonzing those inviduals will not be helpful to that goal.

  • Stephen Gilbert makes important points. If the goal is to just move away from psychiatry as an entity, then what I write is irrelevant. I just wonder if that path will be effective is bringing about the kinds of change many of you want.
    I think that many of the premises of modern psychiatry are wrong. I also understand the vast power that society gives to psychiatrists. If I have any standing in these discussions, I think it is because I have been willing to admit that and I understand I have no right to shut down or disregard the voices of those who have been harmed.
    But I do not think most psychiatrists are bad people or intend to harm. There are some people who feel they have been helped by psychiatrists. Dorothy Dundas – whose poster is now hanging in my office as a reminder to remain humble – despite the many horrors she experienced in a psychiatric hospital has also written eloquently about the help she received form a kind and compassionate psychiatrist.
    My hope is to use persuasion. Sometimes pointed and assertive but persuasion nonetheless.
    Daniel has a powerful and compelling voice. I am just making a suggestion to him on how he might use it. Perhaps that is just me being an arrogant doctor. I mean no disrespect and I have no doubt that Daniel is fully capable of making his own choices (including to ignore me!)

  • Daniel,
    My point is that the notion “biological psychiatrist” is a construct that has no meaning for me. Ironically, although you see me one way for most of my career, my colleagues would have characterized me as a “biological psychiatrist” if they were to give me any type of designation.
    I think your objection may be to a fundamental notion that human distress can be conceptualized as a biological phenomenon. This is a distinct philosophical postion – can consciousness be understood as a brain function? Go ahead and ask! These are critical questions but I worry we will make no progress if we push people away from the discussion. I also understand Carina’s points but that leads me to a dead end so I want to try to keep the door open to some type of reconciliation and change.

  • Hi Daniel,
    You are someone I admire. Your DVD’s have been enormously enlightening to me. Your voice in your writing and DVD’s is so alive that I have the illusion of knowing you and in that illusion, I have an affection for you.
    I am also someone who is often frustrated by the distortions of the prevailing views of my profession. I guess we also share a desire to use these virtual pages to speak out and by doing so stay alive and fight indifference.
    But in the sense that I am a psychiatrist and I believe that we are biological beings, I think I am a biological psychiatrist. While I respect your right to speak your mind, this piece troubles me; so in fighting my indifference towards you and this collective project of MIA, I decided to speak out to you.
    Perhaps the word dialogue is being over used to the point of becoming a cliche but it still has meaning for me. This work feels like a shutting down of dialogue. There is little room for response. I am hoping to open up the conversation and I see no room for that with the rhetoric used here. To be blunt, this seems to have the same degree of distortions that you and I both disdain from other areas. Is there room for a different kind of conversation?

  • Thanks for the references, Donna. Since I am not an expert on the psychotherapy of psychosis, I am hesitant to comment too much. I agree that Dr. Karon talks about engaging actively with people in a down to earth straight forward manner. He describes an instance where he went to a diner with a man who was not eating. For several days, he went and he ate while the man watched. On the 4th or 5th day, the man said something like,”I am not going to pay to watch you eat” and he started eating. I also appreciate the aspects of his work of making sense and connecting psychotic sounding ideas to real life experiences. This is a part that seems similar to dialogic practice. What makes me uncomfortable is any expression of certainty about etiology since I do not think that in any given instance one can be certain. So when Karon says that all psychosis is a terror syndrome, I am not as certain. But I do not know. Perhaps he is right about this. I prefer holding a stance of curious uncertainty. But as I said, I am not an expert by any means. Dr. Karon has done this work for 50 years. I have deep respect for what he has done and his dedication to his work.

  • Thanks, Donna. Perhaps at some point, I might be able to compare and contrast the various approaches I have been studying. While I respect and admire Dr. Karon, my old concerns about the psychoanalytic perspective have not abated. I do think that there are people in the world – and I believe Dr. Karon is among them – who have a facility for connecting to people who are in extreme states. I think these people have much to teach someone like me. I am just not as comfortable with the theory.

  • Stephen,
    I do not agree with this statement. I think there is ample evidence that there is intense interest in trauma within the psychiatric community. The concept of post traumatic stress disorder is misleading in that it seems to imply that that particular syndrome is the only antecedent to trauma. I also thin there is a general discounting of the role of trauma on some disorders (schizophrenia) in comparison to others.

  • Pablo Calderdon,
    Re: “People are very confused about what psychiatry is”; “People” in this sentence is the general public.
    I do not think this essay glorifies psychiatry as it currently is. This is a suggestion of how to place the role psychiatry has come to have within the larger framework of medicine and then where to place medicine within the larger framework of offering help to those who suffer in the myriad ways we have come to label “mental illness”.
    While I think there is a huge role for service users/ experiencers to play in offering their compatriots, I also think there is a role for those with professional training. Perhaps we disagree about this.
    However, I just do not think the vast majority of those trained professionals need to have gone to medical school. I think it is a waste of time and I think it ends up being very confusing on many levels
    In addition, psychiatry as currently conceptualized by leaders of our field seems like a subspeciality of neurology and I think it might be clearer for people to think of it that way. It might alter (and lower) expectations when one walks into our offices.

  • Re: my colleagues: I do not think they pay too much attention to me.
    Re: changing public opinion, I do not know. I think people seemed temperamentally predisposed to like or dislike medical models. The the people who have direct experience, make up their minds based on their experience. There is so much discord in the field, it is hard to gain traction for any one perspective.

  • I do not think I have been clear and perhaps this is a silly conceit anyway but here goes again:
    This particular blog was not focused on the pros and cons of drugs. I have articulated that elsewhere and my views have not changed. This is not promoting them; it is conceding that they are not likely to go away. I am clear that drugs should play a small role.
    It is a thought experiment on how we might make it clearer to everyone, what one gets when one consults a psychiatrist. It is also addresses how we utilize the expensive resources – and consequent expensive time – of those who choose to consult to people who experience altered states.
    It also offers a suggestion on where medicine should stand – and what influence it might have – in this arena of human experience.
    So my thought is that drugs should be limited but people will seek them out and someone in medicine should try to understand them.
    It proposes that medicine should remain peripheral to the entire enterprise of helping people in emotional distress.
    I have this notion that if it clear how little medicine has to offer, this would result in limiting the power and authority that medicine (in the guise of psychiatry) has been given in our society.

  • Nathan,
    I agree that what I am suggesting would not address the question of whether or not drugs are effective. And I agree that is a big problem that needs to be addressed. I also agree that this is a cultural problem (and in this sense I mean the general culture as well as the culture within medicine). But at least people would understand what this physician was all about and if a person had no interest in taking a medical approach to his problems, he could go elsewhere for help.

  • What I am suggesting is that psychiatry occupy this narrow area of looking for identifiable causes of psychosis and depression (see Jill Littrell’s comment above about untreated urinary tract infections) and that others work in the many other ways that are helpful to people in distress. I do not see why medicine needs to be central in this enterprise. Look at the work of Carina Hakinsson and the Family Care Foundation. They do very good work. I do not think any medical person is involved, at least not in a central way.
    It seemed like an accident that psychoanalysis began within medicine. It has never been clear to me that one needs to be a physician to be a psychoanalyst.
    I guess this arises from my own ruminations on what psychiatry is.

  • I am not sure I understand where we disagree. As I said, I think there is a place for someone who has an expertise in the use of psychoactive drugs. I just do not think that needs to be center stage. That person could be pulled in as a consultant. I do not understand the advantage of training physicians to provide psychotherapy.

  • I am not sure I am far from what either of you are saying but perhaps I was not clear. I am not only suggesting that psychiatry become subsumed by neurology. Implicit in this model is that medicine, in general,relinquishes its role as the “leader’ in this field.
    But having psychiatrists trained as psychotherapists will not improve the “supply” problem for psychotherapy. Physicians are expensive for public systems. There are others who can provide this service. I am suggesting that physicians do the things that ONLY they can do.

  • Hermes-
    You make a distinction between two notions: “the effectiveness of neuroleptics is reduced over time in some patients” which you consider supersensitivity explaining vs. ” more psychosis for people why[who] use neuroleptics at a constant or increasing dose”.
    I think others see that as the same thing. In his post, Whitaker equates the presence of psychotic symptoms over 20 years in the group who remained on neuroleptics as indication that supersensitivity occurs.
    Psychiatrists, on the other hand, have tended to attribute declines over time to the natural course of the condition. they tend to assume that without the drugs, the condition would be even worse. This is embedded in our concept of schizophrenia or dementia praecox which Krapelin described as condition with a deteriorating course. This is bolstered by the fact that when you stop the drugs, especially abruptly, symptoms often do get worse. This is especially true of people who come to see psychiatrists.All of those people who go off them them and do OK, do not come to see us so our view gets distorted.
    I just do not think this has been fully studied in humans. Most of Seeman’s work is in animals. He demonstrates that haloperidol causes an upregulation of DA receptors that is similar but not on the same magnitude as stimulants. Oddly, however, haloperidol partially reverses the effects of stimulants.
    I am not sure I am addressing your question but some interpret the high rate of psychosis over time in Harrow’s study to be consistent with the theory of supersensitivity. I am less sure that we know the mechanism. I do know people who have no psychotic symptoms over many years while remaining on drug. I also know people who remain on drug fro many years who have no evidence of TD, in contrast to what Fiachra has written.
    I do not think ALL psychosis is due to drug. I do think we have no good evidence that keeping everyone on these drugs indefinitely is good for them. I also do not think we are prepared to help people through psychosis without giving them drugs.

  • Hi Donna,
    I am not put off by the anger here and in general people have been pretty respectful even when we have disagreements. As you say, it is hard to walk in another person’s shoes and I understand that many people are angry not only about the treatment they have received but also at the less than truthful answers they have been given by doctors.
    I am not an expert in the legislation but from what I have read, I do not support it. At the same time, I try very hard to not be hypocritical in my positions and to not say something in one setting that I would not say in another. Vermont does have strong protections in place but they do have outpatient orders for treatment. They are not terribly effective in many ways but they have them; I am part of that system. I have committed people to hospitals when I did not have a safe alternative. In Oryx Cohen’s blog there is a comment from a mother who described the challenges she has faced when her child was psychotic. Voluntary interventions were not helpful and as a family member she was left in an extremely challenging and difficult situation. I have witnessed these kinds of situations and I would never criticize a parent who is struggling and worried about her child. VT will have a Soteria program in the next year. I have been a supporter of this program. However, I have known people who just refuse everything. They are in distress and their families are frightened and in despair. I strongly support voluntary peer respite. This bill would gut many peer programs and that would be a bad thing for us all. But, at least in my state, peer respite has limits on who they feel they can safely help. I still do not know how to help some people who refuse all of these options but are not safe.
    In VT, the outpatient orders do not have much of an impact on forcing people to take drugs they do not want to take because the state does not really want to hospitalize anyone. Sometimes people are put on these orders as a kind of window dressing – it gives the illusion that something is being done.
    This is not a very coherent answer and I admit I am deeply ambivalent about this.

  • I have tried to understand supersensitivity. I was even in communication whit Philip Seeman who has done the basic work on this. What I have concluded is that this is a real thing but we do not have a full enough understanding of it because we are not looking carefully enough. For instance, tardive dyskinesia is thought the be relted to this but not everyone gets it. Why?

  • I would just add that the “let’s not rock the boat” sentiment is something I understand. Psychosis is hard for many people, it can disrupt their lives, it can be frightening, and I respect those people I know who do not want to risk a recurrence. I try to be honest with people about what I know and do not know but in the end, it is a personal decision about what risks one wants to take.

  • It is interesting that Hippocrates shared this same philosophy about the body and its natural tendency to recovery. That is where his famous recommendation “First do no harm” comes from.The idea is to be very careful when intervening to not do more harm that the condition we are treating. But as I try to say above, it is very hard to stand by. It is hard for families and in some cases it is hard as a society.

  • Thanks for your comments.
    I have been working with people for most of my career to try to insure that they are at the very least on the lowest dose possible. this is actually what the experts were recommending in the early 1990’s. I worked on a study – the neuroleptic threshold study – that demonstrated that people could be treated with much lower doses than what was typical at the time. But the message got lost (at least in the US. If you look at European studies, doses are much lower than they are in the US). I believe it was due to the marketing strategies that suggested the newer drugs were safer.
    For the past 3 years, I have been tracking my experience with this. Here is a link to my most recent data on this. https://www.madinamerica.com/2013/11/tapering-neuroleptics-two-year-results/
    It does not always go well but I have found that even when a person has been on these drugs for many years, that doses can be reduced.
    We have invited Ron Coleman and Karen Taylor to come speak about the Hearing Voices approach. We have had a lot of interest in this.
    Now, I have to admit, I know some people for whom dose reduction dose not go well. Some do not want to make a change in dose. I try to work with each individual to figure out what is best for him or her.

  • Hi Donna,
    I am still scanning the comments. thanks for reading and commenting. I am familiar with some of this. I think it was on your recommendation that I bought Hyman’s book.
    I am interested in food and its effects on us and have been really for most of my life.
    I sometimes worry that these food books may overstate our current knowledge base but I encourage people to try their own self experiments – cut something out, see how it goes, etc. I am also following the work of Bonnie Kaplan and Julia Rucklidge and others in their study of micronutrients.
    There is a book coming out this spring on the gut biome that I am looking forward to reading. IT is an incredibly complex topic since there are some many organisms living in and on our bodies and science does not handle this level of complexity all that well so this will be unfolding over many years. the challenge is how to stay somewhat current without jumping on to bandwagons. I do not have an answer for that.
    I am not familiar with Dr. Schwartz but it sounds like he write fro a CBT perspective which I agree can be very helpful.

  • Hi Stephen,
    I think that psychiatrists long ago abandoned the monoamine theories aka “chemical imbalance”. I know this is disputed here and elsewhere but if you look in the literature, you see discussions of neuroplasticity going back a couple of decades.
    In fact, I think it is one of the great misconceptions to equate drug treatment as only being effective if there is some inborn fixed type of lesion and psychosocial treatments as only being effective if there is a “non-biological etiology.
    I guess Insel would say that it is important to understand underlying mechanisms (and they can be fluid, changing mechanisms, because it will help us to design better treatments. But I do not think this is axiomatic. I think we can look from the outside and figure out ways to be of help even if we do not know exactly what the cellular process is the effect that change.
    We should all hold our theories lightly.

  • One thing I would add here and perhpas this is quibble is that this notion – I guess I called it materialist although I am not enough of a philosphyer to know if I am using the term correctly – is not a belief that is solely in the provence of psychiatry or even of medicine. It is the manefestation of a large belief that is at the heart of the enlightenment, I believe. Psychiatry is just the embodiment of that belief system in one area. The power that psychiatry has in society is not merely taken – it is given that authority.
    There are many people oustdie of psychiatry who share this view and actually clamor for the treatments modern psychiatry has to offer. This is not to minimize the role psychiatrists have in being honest about the limitations of our knowledge buti t is an attemtpto put some of this in a larger cultural context. The people on this web site do not speak for everyone who experiences emotional distress and I do not think it is a good idea to ignore that.

  • Steve,
    I do not feel offended or unfairly challenged. We agree. I have a perspective – a belief system if you will – that is fundamentally materialist. You may not share that belief.
    My point is that we do not need to argue. I do not care who is “right” in this discussion. And focusing on that point might distract us from something important. Namely, we do not need to resolve that argument BEFORE we decide that we can ignore it and still learn many useful things about how to be of help to people.

  • Thanks for the clarification. I certainly did not mean to imply that OD is the only approach that values respect and consideration. I am primarily saying that in my learning about OD, it has refocused my attention on how important that is as a primary concern. I am talking as much about myself, I guess, as about OD. Also, there is probably no practitioner in the world who thinks her approach is not embedded in respect. But something happens with so many of us where the “system” or our convenience or something else seems to gain primacy. I still think there is something embedded in OD (and it may be embedded in other practices as well) that helps people to keep from straying from that “person centered” perspective.
    And yes, the shift away from the primacy of drugs is also important. 🙂

  • I stand by my words. Even within the so-called biological model, there is an open discussion on the utility of categories such as schizophrenia and bipolar disorder. There have been entire issues of the journal Schizophrenia Bulletin devoted to this. Even Eugen Bleuler (and any historians here can correct me if I am wrong) – the man who gave us this term – used the word schizophrenias not schizophrenia. It has always been a placeholder awaiting some deeper understanding.

  • Thank you, Ted.
    What I find so appealing about Open Dialogue and related endeavors is that respect and consideration for the person with whom one is interacting is front and center from the moment the person makes contact with the “system”. There should be nothing controversial about that.

  • Hi Steve,
    Thank you for carefully articulating your thinking on this. I would guess that most psychiatrists – including me- do not agree that there is some other agency involved. They – and I – would say that there is some neural process that would account for placebo effects, that would account for belief.
    However, my point is that to some extent it does not matter if you and I agree. We could set this debate aside and still agree that observing and studying from the outside is of value.
    It may be important to find areas of agreement rather than areas of disagreement so that we can join together to advocate for the kind of research and study that we both agree is important.

  • Thanks, Carina and Rossa for reading and for your comments.
    Fiachra – I could have added CBT to the list. But to me, knowing that something can be impacted by a psychotherapeutic approach does not mean that brain mechanisms are not involved. Our brain is the mediator of these changes. My point is that we do not need to understand how these changes occur or where exactly they occur or what genes are involved in order to develop approaches that are helpful. This is an urgent matter to me since it may take a very long time to get to where Insel want to get and even then, it is not clear the kind of insights he values will be as helpful as he thinks they will be.
    I do agree that “schizophrenia” is a construct. It was a name that arose a hundred years ago when psychiatrists thought that naming something and describing it was the first step to understanding it. What we have learned in these hundred years is that the brain and body are so complex; many of our classification systems – in much of medicine, really – hold us back rather than advance our understandings.
    I do not know of any thoughtful person – in or out of psychiatry – that considers schizophrenia to be one “thing”. It is an umbrella term that captures many things and, to say it again, I have come to the belief that it has long out lived whatever usefulness it might have had at one time.

  • Hi Fiachra-
    This is a very important question. There has been a tendency to ascribe negative outcomes to the “underlying” condition and good outcomes to the drugs. We would need to go back to a time when the drugs were not used to understand the extent to which these problems occurred in people who were psychotic. I remember a time when I heard discussions and read papers in which psychiatrists went a round and around about ways to distinguish these things (depression vs side effects, negative symptoms vs side effects). It is all predicated on an assumption that there is an underlying “illness” and the drugs are targeting it.
    I have written this before but Joanna Moncrieff’s articulation of a drug centered vs a disease centered model has been the single most important conceptualization for me.
    I highly recommend her most recent book, “The Bitterest Pills”. In my own words, what she is slaying is that we need to evaluate these drugs as psychoactive drugs that have impacts on all humans (drug centered) rather than as drugs that are targeting to treat specific disease states in some humans (disease centered).
    Once one does this, one no longer makes distinctions between effects and side effects. One looks at what the drug does. Then one can consider if the effects might be helpful for particular person’s problems.
    So benzodiazepines (Valium and many others) will make most people feel sleepy. This may be helpful for someone who can not sleep but its effects are not only observed in those who can not sleep.
    Nueroleptics dampen drive. They dampen attachment and intensity of attachment to thoughts. This may be helpful for a person who is highly agitated and it may be helpful for someone who is extremely attached to an idea that may not comport to consensual reality and is highly disturbing for the person. But at the same time, it may dampen drive in other areas such as looking for a job or feeling a connection to other people.
    This makes sense to me and helps me think about these drugs in a different – and I think more helpful and honest way. I may suggest a drug – for a time – not by saying that the drug will treat a “disease” but that the drug might help the person feel more comfortable. At the same time, we will both be on the look out for ways the drugs may interfere with the person getting on with his life.
    Dr. Moncrieff blogs here. I hope I am not misrepresenting her. I recommend her blogs and books to all!

  • Thanks, Duane, but I will stand by what I said. In the course of 30 years as a psychiatrist, one ends up meeting quite a few of them. The majority are no different from me. Many are kinder and more caring then me. That has been my experience.
    I do think the problem is more of being brought up with a certain framework for thinking about these problems. In contrast to the Dunning-Kruger effect, I think it is an education effect. It is very hard to consider that years of education might lead one to form the wrong conclusions about how to think about these problems. That does not make us evil. It makes us human.
    It seems that only through discussion will people be open to reconsidering. I would like for this to be a place where everyone was respected and welcome even when we vehemently disagree.

  • Hermes-
    I think you are generally correct about lurasidone being pretty similar to other neuroleptics already on the market. However, I also think that the terms “antidepressant” and “antipsychotic” are largely devoid of meaning. They are marketing terms. This is a concept I came to after reading Robert Whitaker as well as Joanna Moncrieff. These are plain and simple psychoactive substances. They may have some effects that some people may find beneficial but it is clear that they do not fall along the lines created for them 40 years ago. If you read Dr. Belmaker’s editorial this is abundantly clear as he tries to parse this out.
    I have probalby already said this, but Dr. Moncrieff’s conceptualization of a maintaining a drug centered as opposed to a disease centered approach to thinking about these drugs has been enormously helpful to me.

  • I think that some of my psychiatric colleagues – Philip Thomas comes to mind – do address the societal role in causing all sorts of human distress.
    However, I join Robert Whitaker in thinking that taking a critical look at the “mainstream” message of psychiatry, which was the point of this particular blog, is also important to effect change.

  • Thanks, Alex for you kindess and suppport.

    I also want to reach out to someone who e-mailed me this week. You shared your story. I am not sure I can be of much help but I did not want your message to go unasnwered. I have responed several times but the message bounces back. I wanted you to know that I did not ignore you.

  • Theinarticulatepoet-
    I fear that you and I are at an impasse. I do agree that we get blinded- all of us – to our own cognitive frameworks. The best elucidation of this for me was in Daniel Kahnemann’s book, “Thinking, fast and slow”. I guess I would say that psychiatrists (including me!) are no less or more immune to this any any other human being; it is a quality of human cognition not of psychiatric cognition. I also understand why those of you who have been harmed by psychiatric practices would be so infuriated by the inability of psychiatrists to challenge their own frameworks when their models have not been as effective as they predicted they would be.
    But I think you are critical of me in ways that do not directly address my own blog but address your complaint with a large group of people. That makes it hard to respond in a meaningful way. It’s fine with me if you continue to do that but please do not be offended if I do not respond.
    At the same time, it would helpful if more psychiatrists could participate in these conversations. You and others here have much to offer. General critiques that are hard to rebut, make it much less likely that my colleagues will join in on this discussion. I think that is a loss for this site.

  • Cataract-
    I have not had any contact with drug reps in about 15 years. My first directive as Medical Director was to ban them from our offices. At that time, we also banned all forms of advertisement (pens, clocks, calendars). Prior to that from about 1196 on, I did not engage with them. I can’t control who leaves messages on my v-mail or who sends me mail. Many years ago, I tried to send back some junk that Lilly sent me (it was two mylar inflated balloons with the words Prozac and Zyprexa written on them!). I went to some expense but I was trying to make a point. Before I had the option to ban them, I would give the free coupons for food to people who sought services with us. One day I drove a young rep to tears because I insisted on putting the bagels she brought with her into our waiting room and she insisted on putting them in our receptionist’s office.
    But the problems and dangers are for more insidious and serious. When studies are published that are design to allow a drug to be promoted rather than for us to understand fully what the drug does to the human body, we all get turned around in how we think about the drugs.That is what I was addressing in the later part of my blog. It is what Peter Gotzsche, David Healy, MIckey Nardo address in many books and blogs. It is a serious problems that invades all of modern medicine.

  • Fiachra,
    Sometimes they do. Fluoxetine came out, famously, as Prozac and then was re-packaged under the name Serafim for distress associated with menses (and in a pink pill, no less). Buproprion came out as Welbutrin and then was repackage as Zyban for smoking cessation. This seems about to happen for duloxetine whihc came out as Cymbalta. The patent ran out in 12/13 and the company is trying to get approval for the treatment of “bereavement depression. Guanfacine, an old drug used initially to treat high blood pressure is not out as Intuiv to treat ADHD.

  • Can you help me understand your point?

    To state it another way, I do not find it offensive that a researcher might be curious as to why one person who is, let’s say traumatized in some way, has one type of mental experience and another person has a different type. This is just a question.

    At the same time, what I also said is that the explanation does not necessarily guide treatment. This, I think, is the lesson of the Hearing Voices movement. Approaching these experiences as a human experience that occurs in the context of the person’s life can be powerfully helpful. One does not need to know anything about the brain to offer this kind of help.

    I say nothing about “good” brains or “bad” brains. Just perhaps, brains that may process things differently. Which I agree is true for all of us.

    I am curious, what in that, do you find the daft manifestation of my medical madrassa training?

  • Hi Donna,
    Thank you for being sensitive to whether your comments offend me. I would say I am more perplexed than offended. If I follow this thread, I tried to respond to these comments from above:
    “Since you and I are both older and did not grow up with this fraudulent paradigm of stigmatizing normal human suffering, crises and emotional distress caused by abuse, loss and other reasons, I find it difficult to accept that you would have so eagerly accepted such an obvious fraudulent paradigm because of its greater ease and convenience.”
    I think in my many posts here, I have made it abundantly clear that I question many of the prevailing paradigms of psychiatry.
    If it’s true that your conclusion about me is “you seem very set in your views that appear to maintain the status quo with a bit of tweaking of the amount of toxic drugs prescribed,” then I believe I have failed miserably as a writer since most of what I write about is challenging those paradigms.
    But I am not looking for your judgement or approval, only for the dialogue and, for that, I am most grateful.

  • It is one thing to write a diagnosis down on a form, it is quite another thing to study a drug from the perspective of its general psychoactive effects.
    This concept is not too foreign for many drugs in use.
    For instance, opiates might relieve pain but they are not treating a specific illness. They have effects on everyone. those effects are exploited to help people with pain arising from a multitude of sources.
    Benzodiazepines are called “anti-anxiety” drugs in some settings and “hypnotics” in other settings but if a person who does not experienced anxiety took a benzodiazepine, he would experience a sense of calm and, depending on dose, would likely drift off to sleep.
    Dr. Moncrieff’s point, I believe, is that the effects of neuroleptics might be beneficial to some people in some circumstances but this is not because they are treating a specific known pathophysiology in the brain.

  • Jonah, I did not say it was safe. What I am saying is that in some instances, it may be the least harmful of the alternatives. Of course I can not speak to your own situation and I am sorry for how you suffered. As I said, I struggle with this. I am not going to defend the actions of every psychiatrist every where and I urge all of you to fight for your rights. Perhaps some of the information on this website can be of help.
    At the same time, I am not going to be coy about my own role in the system. All I am saying that in the situations in which I am involved, I do not always see an alternative.

  • Hi Donna,
    Good to hear from you again. I am reading Mad Science now (along with a few other books so it is slow going). It is interesting but my opinions diverge at certain points. When I have finished it and have time, I may try to write about that.
    Re: “You said that you found it frustrating to try to establish causes of severe emotional distress in your earlier years in psychiatry so you felt more comfortable when the DSM paradigm allowed you to simply apply bipolar and schizophrenia “diagnoses” to such human suffering. Since you and I are both older and did not grow up with this fraudulent paradigm of stigmatizing normal human suffering, crises and emotional distress caused by abuse, loss and other reasons, I find it difficult to accept that you would have so eagerly accepted such an obvious fraudulent paradigm because of its greater ease and convenience.”
    The paradigm of “schizophrenia” dates back to the early 20th century. I am old but not that old! I entered psychiatry in the late 70’s when that view was well entrenched. As I may have explained, I entered psychiatry because I was drawn to psychoanalysis. I studied that fairly intensively for a number of years until I became disenchanted with that school of thought.
    Not knowing what do with myself, I ended up spending a year studying behavioral neurology. This is the field of neurology that applies neurological perspectives, specifically structure function correlates, to behavior. The field got much of its momentum in the post WW II era when neurologists were confronted with soldiers who had severe brain lesions. That perspective has always influenced my thinking. We know that lesions to the brain can cause, for instance, various types of hallucinations. It is not a stretch to think there is some abnormal brain functioning associated with any one who has a hallucination. I still think that. I just do not think that means that the “treatment” for this problem is a necessarily a drug or that the problem is static rather than transient. So that is how my early thinking developed.
    All of this avoids your core question regarding forcing drugs on people. I have nothing more to add right now to what I said to Jonah above.
    Regards,
    Sandy

  • Thanks, Joe. I am not entirely certain of how the six week study evolved but I know that the first thing that was assessed was short term outcome. I think that in the very first studies of neuroleptics in the 60’s, they may have lasted for 6 months.
    From those studies, it was determined that most of the short term effects are seen over the course of a few weeks. The recommendation for long term administration of these drug came from the “relapse studies” where people who had been started on the drugs were followed for 1-2 years. In one group the drugs were continued and in the other group, they were replaced with placebo. There were many more people who relapsed in the placebo group.
    However, and this is the crux of Anatomy of an Epidemic, when you follow people for longer than 2 years, it appears that on average those who stop the drugs may do better especially with regard to functional outcome (working, having relationships, etc.).

  • Hi Jonah,
    I am trying to figure out how to answer this as respectfully as possible in a way that both honors the seriousness and importance of this question but also takes into account my own limitations of time in engaging what I know is – at least for me – a complex topic.
    So the short answer is that I am not yet at the point you suggest, i.e. to “no longer condone any forced drugging”. At this time, I do not always see safe alternatives. However, I do support calling it for what it is – the tranquilization of individuals who are in highly agitated states as opposed to the “treatment” of a defined “illness” or “correction” of altered neurochemistry.

  • I am fortunate to work in a place where CBTp is available to some extent. I find that a bigger obstacle is that CBT requires a fair amount of motivation; people need, first of all, to make it to appointments. Then there is practice. I think there are some people who might be able to use these techniques but maybe not after the first time. That is why I think it is hard to study. In this study, they say people were accepting of treatment but they also had many missed appointments.
    Dr. Laws raises the question of whether the relatively small(in his estimation, non-existent) benefit of treatment is worth the cost. I understand this question. I work in a publicly funded clinic and we have limited resources. Training people in a certain approach is costly above and beyond the actual cost of the treatment. And then people leave and you have to start over! It is clear from a financial perspective why a model based on drugs is appealing to administrators. But this is where the long term outcomes come in to play. If you believe that line of research – that long term outcomes are significantly impaired by chronic drug use – then it makes financial sense to put a lot of resources into all sorts of non-drug supports. If you double the recovery rate (as Wunderink reported), that has enormous cost savings. Many people – especially the experts in my profession – do not believe this data.

  • Thanks, Alex. I am well aware that we – at least I – can not help everyone. I am reminded of this almost daily.
    Vortex was discussing how society responds to people who do not share “the objective reality”. Vortex was – if I follow – suggesting a humanistic approach. I was suggesting that there are people who will act in a way that society will not tolerate and I do not know of a good way to respond. I would, however, encourage all of you who disagree with me to step up and help your brothers and sisters. That is not intended to read as a belligerent challenge (as in, if you don’t like what I am doing, come and show me up) but more as a genuine plea(as in, please come and help).

  • Dr. Laws,
    I was not intentionally ignoring SAE. I looked briefly at the paper you cite above but I want to review it more carefully before commenting further.
    When I was writing this blog, I knew I had the intention to view it as critically as I would have if it was a drug study. I had the thought that the absolute reductions in the PANSS where not dramatic and in another blog about a study of lurasidone, I made the point that statistically significant changes may not be clinically significant changes. I think that point could be made here and I wish I had said that in the original blog. I understand that you are also arguing that there was not a statically significant difference and I still do not follow you on this but fortunately your blog as well as the original article are all open access so everyone can review this themselves.
    I still have this question about how we deal with the variability of what we are studying but I think I may need to address this in another post since I am apparently not doing a good job of articulating my thinking on this.
    Sandy

  • Hi Vortex,
    thanks you for taking the time to post this. It has been a busy day here and I am trying to get through these responses in a respectful and thoughtful way.
    Of course, I think it is important to be humanistic in our interactions. I also do not think anyone has a corner on reality.
    It is hard for me to talk about this entirely in the abstract and working out the details is complex.
    For instance, in my day to day work, I would describe myself as kind but I know for certain that some people do not experience me that way. They interpret my actions in a way different from how I perceived them and different from what I intended.
    As to involuntary actions, I am going to respectfully not start that discussion here. I do not mean any disrespect. I think it is an extremely serious and important topic. I wrote a blog on this before and I may again but I know from experience, that it will begin a discussion that I will not be able to keep up with here and that in a way would be a different form of disrespect. All I can say is that in some instances, the behaviors of some of those who may be labeled – to use your words – as “the “deviant” experiencers” go beyond what society is willing to tolerate. I know that historically there were some options that were not coercive (Michael Cornwall has described such places) but I know of people who would reject anything – alternative and humane or standard “care”. I have not read anyone who gives a credible response to those situations(and for me, jail is not a credible alternative).
    Sandy

  • Dr. Laws,
    I am interested in your views about heterogeneity of schizophrenia although at the same time, I do not think there is a clear demarcation anywhere – among those labeled with schizophrenia, among those labeled with psychosis, and so forth. I am suggesting that this poses a dilemma for researchers. What if some people who fall under the umbrella do derive a specific benefit from CBT and others do not? Do we have a way to identify that and determine if that is something different from normal fluctuations? I think that is a valid and important question. Do you?
    In the us, the term Cognitive Enhancement therapy is used. It was developed by Gerry Hogarty and Matcheri Keshavan and others at U of Pittsburgh. They have produced a manual. they have published studies showing it to be effective. There is now a company that offers to train clinicians. I know that you study cognitive impairments in people diagnosed with schizophrenia. I was wondering if you think those impairments are amenable to clinical interventions. I think it is similar to cognitive remediation.
    But I know we are getting far afield. I appreciate your engagement with me. I do not always have the opportunity to talk to someone with your type of expertise. I also will understand if we need to let this go for now.

  • Dr. Laws,
    This string is getting complex.
    My question is how – in your work or in any work- do you handle the problem of heterogeneity. Schizophrenia seems likely to be a name that encapsulates many things. That makes the scientific process challenging.
    I also just asked if you had opinions about Cognitive Enhancement therapy. I realize that gets us off into a vaster topic and you probably do not have the time for this. If you have written about this, however, and could direct me in that direction, I would very much appreciate it.

  • Dr. Laws,
    While I seem to have your attention, have you written much on Cognitive Enhancement Therapy?
    I do grapple with figuring out what “works”. This is an intervention which I assume you are familiar with, given your research interests. There are now businesses that have developed programs to train clinicians. Not unlike CBT, it requires a significant investment of time and money and I am trying to determine if this is a worthwhile path to pursue. If you have addressed this in your writing, I would greatly appreciate being directed in that direction.

  • Dr. Laws,
    I do not think you are addressing a question I have. This comes up in your reference to homeopathy. Those of us who know people who are psychotic know that some people recover. In some instances, it may be after many years and the recovery can be enduring.
    If I understand your hypothesis (and I did read your post), you attribute this to the natural fluctuations of the course of the condition. Is it not unreasonable to consider that this course may be influenced by external factors? If so, is it not unreasonable to want to understand that better?
    In CBT, one thing that can happen is that people are given skills to test their hypotheses abut the world. For some people, this can be a very useful skill.
    You also did not address the problem of heterogeneity. Scientific models require controlling for variables. The heterogeneity of psychosis makes this quite difficult.

  • Thanks you for your comments, Dr. Laws. Your hypothesis is not unreasonable. We do not know. I agree with the authors that further study would be needed but I also agree, as I state before, that there is a problem of studying as a group something that is inherently so variable. I think the concepts embedded in CBT can be helpful to people. I know of people who have figured some of this out on their own. I gave an example above.

  • I thought they had a larger effect size at 18 months and that is what I reported above.
    However, I do think a challenge for this type of researc is the variability of response. They address that by discussing those hwho had >50% reduction in symptoms.
    .

  • Dear Fiachra,
    Thank you for your comment. I am glad that you have recovered and that psychotherapy was useful to you. I am not sure what you are asking. I think it is important for psychiatrists to have skills to talk to and engage with people who are in distress. I think psychiatrists need to be aware of the array of services that can be useful even if they are not experts in all of them. I think it is extremely critical for psychiatrists to understand how the drugs work and that would include a thorough understanding of withdrawal effects and long term impacts.
    As you probably know, psychiatrists are part of the treatment teams in Finnish Open Dialogue. Tom Anderson, a Norwegian psychiatrist, developed the idea of reflecting teams (related to OD), in Tromso, Norway. The model of OD allows for different perspectives to be shared.
    I hope this addresses your question.
    Sandy

  • Thanks for the comment, Ted. I think it is revelatory in that it was done. It raises more questions than it answers, one of which you mention(CBT vs drugs). For people on MIA who know from personal experience that people can recover without drugs, this is not revelatory. However, some people do seek treatment and they decline drugs. This suggests that CBT can help some of them.

  • Thanks. I appreciated reading these. It seems that some of the criticism is directed at press releases. I thought the authors noted the limitations of the study.
    What I think will be an ongoing challenge is that CBT may be helpful to some people at some point. But the nature of RCT’s makes it hard to capture that.
    I also think these authors – or some of them – seem to miss the point that people were not taken off drugs. They recruited people who do not want to take them.

  • John,
    We have definitely been here before but it has become axiomatic in many places that without drugs, a person can not recover. It is in this context, that this work is particularly important.

  • I know a person who hears very hostile voices. He also has a particular activity that he loves. He was hearing these voices at the place where he does this activity. He thought he could not go there. He figured out that he could look around to see if he saw anyone talking about him. When he did this and saw that no one was there, he was able to stay and continue to do what he wanted to do. The annoying voices were there, but he was able to do something that was important to him. He figured this out on his own. However, this is the kind of thing that might have been suggested to him in CBT. I do not consider that brainwashing and I do not think that is a bad thing.

  • There was no drug group. The treatment as usual group received the services that were typical for the clinic. According to the paper, this usually consisted of occasional meetings with a support worker and, in some instances, no treatment at all.
    Some people from each group elected to try drugs during the course of the study.
    I think the weekly sessions for 9 months are fairly typical.
    I agree that this is one approach among many that could be useful.
    I also agree that what distinguishes the Finnish Open Dialogue approach is that it puts engagement front and center. There is nothing about OD that precludes CBT. If, during the course of the treatment meetings, it seems that individual CBT (or any other approach) might be helpful, that can be offered.
    I think that two concepts are addressed – one is CBT and the second is the general notion that something other than drugs is helpful. That is important.
    I agree that it is harder to study OD but work is in progress that will expand on what has already been done in Tornio.

    https://www.madinamerica.com/2014/01/promise-open-dialogue-response-marvin-ross/

  • While I agree this is another technology, I do not agree it is brainwashing. But there are other experts here, so perhaps they can opine.
    I was going to elaborate on the technology aspect. It is what I was getting at with the part on engagement. After engagement, you can discuss the various “technologies” that might be helpful.

  • This bio is as much a history of psychiatry over the past 40 years as it is of this particular leader in the field. He rebelled – or just never embraced – the prevailing psychoanalytic paradigm. He then had an early enthusiasm and optimism for the promise of molecules, only to see them over used and not as effective as he initially hoped. He then moved to animal models only to find the limitations of trying to create an animal model for functions that seem to be uniquely human. He then had to confront how profoundly flawed our diagnostic system is.

  • Well put. I have come to these same conclusions and it is what makes me uncomfortable here sometimes with the narrow focus on psychiatry alone. That is not to justify psychiatry but to point out that solutions such as referring everyone to neurologists or “real” doctors, will not fix the problem. Thanks for the comment.

  • Hi Jonah,
    I have no problem with dropping the term episode. I could have said,”We have no way of knowing if – in the absence of exposure to antidepressants – this will ever happen to you again.” I hope I was clear that I agree with you that it is just a supposition – with no foundation – the the experience the person had while taking the drugs indicates that the person is prone to something, is ill with something more than just a sensitivity to this particular drug.
    Personally, I never bought into that notion that antidepressants “uncovered” Bipolar disorder. I thought it was another fad promoted in the 90’s, the hay day of drug hype.

  • If you go back to an early paper that suggested that fluoxetine (Prozac) might induce suicidal ideation, the author (Martin Teicher at Harvard Medical School), presented a series of cases in which intense suicidal ideation began after the drug was started and subsided when the drug was stopped. That suggests something other than unmasking. IN some cases, people feel an urge to self mutilate even thought they had never had those types of urges before. Teicher’s report caused a firestorm in psychiatry and Dr. Teicher was heavily criticized for raising this concern. Dr. Healy has written about this in his books.
    There have since been double blinded studies in which there was a higher incidence of suicide thoughts, acts, and self-harm in those on active drug. Even if the etiologic hypothesis above is correct, it still suggests that there is a risk and that people need to be adequately warned.
    I do applaud you for raising these concerns. they are not often brought up here. I hope you find your questions are addressed in a respectful manner.

  • I think there are two categories of people in whom there was a “missed” diagnosis of Bipolar Disorder in people who have an antidepressant induced mania.
    The first is the person who had prior manias but either did not reveal them to the doctor, was not asked about them, or did not recognize them as manic episodes.
    The second is the person who NEVER had a manic episode prior to taking an antidepressant.
    These are very different circumstances.
    In the second category, there is nothing that was actually missed. It is merely a situation where some psychiatrists have just decided that since they developed mania (regardless of the trigger), they have bipolar disorder.
    I think that is a mistake. I suggest we just label it for what it is and admit that we do not know what the implication is. We can share this information with people and let them decide what risks they want to accept. We have no way of knowing if they will have another episode if they avoid antidepressants.

  • As I noted above, I know for many readers on this site, this incident is small compared to other complaints you have with psychiatry. But I think there are some who are less sure. There are some who are struggling to figure out what our role can and should be. At the very least, we should live up to our own explicitly stated standards.

  • For those of you who want more, there are two more blogs on this today. One is part 2 from Neuroskeptic: http://blogs.discovermagazine.com/neuroskeptic/2014/01/25/psychiatrists-another-dimension-part-2/#more-4787

    He describes more about the problems of this being a closed sourced system. In part 3, he will discuss the utility of this approach and I am looking forward to that.
    The other is by Dr. Carroll, who broke this story.
    Here is a link to his latest:
    http://hcrenewal.blogspot.com/2014/01/windy-city-blues.html

    Here are links to Dr. Allen Francis’ blog on this:
    http://www.psychologytoday.com/blog/saving-normal/201401/holding-psychiatry-much-higher-ethical-standard

    And to Dr. Hickey(who blogs here as well):
    http://www.behaviorismandmentalhealth.com/2013/12/23/dsm-5-dimensional-diagnoses-more-conflicts-of-interest/

  • The study referenced was supported by Sunovion which makes lunesta, the study drug. The effects were after 2 days of treatment. What about effects after 100 or 300 days of treatment? Although these drugs are nominally marketed for short term use, many people who start them do not want to stop. I would be interested in seeing the impacts of CBT for insomnia on these parameters.

  • Thank you for your comments. I am not sure, however, why you think I am discounting the many facotrs you mention which I would agree contribute to a full and enrichg life. I also agree that defining what is a meaningful inlife is complex and will probably never be captured in any metric.
    I suggest you go directly to the study by Wunderink whihc is the one referenced in the WashPo article. They use a scale to assess recovery that is fairly comprehensive. I would not use the newspaper article as the basis for your book and I would strongly encourge you to go to the primary sources. While I stand by what I wrote it is a summary of extensive reading. If you look at some of my other blogs realted to neurolpetic drugs, you will see links to most of the prinmary sources.
    However, I am cognizant that there are people who do best when taking the medications. I am actually not advocating an acroos the board reduction of dose. As I hope I made clear in the Wash Po as well as my other writings, this is complex and I am mainly advocating for a careful, individualzed consideration of the risks and benfits of these drugs.

  • Hi Jonathan,
    First of all, welcome to MIA. I was going to respond to your earlier post and I may do so in a follow up blog but primarily, I wanted to say that I am glad to have your voice here.
    The response from my colleagues has been mixed but overall far more positive than negative. I have decided to write for many reasons but one of them is to have a conversation wiht my colleagues, so, yes, I do talk to them about it. I have been invited to speak to my state’s psychiatry group and I recently gave Grand Rounds for the University’s Department of Psychiatry. I think it was well received. It is heartening to know that younger psychiatrists are extremely open. There are some who have been hostile and there may be more who just do not say anything. I think the most troubing response is from people who dismiss what I say without looking carefully at the evidence. I may be wrong and I would like to know where I am making mistakes in my reading but to be dismissed without evidence is frustrating.
    Sandy

  • Thanks for this perspective. To be fair to Torrey’s account, he does relate the multiple factors that came in to play but his emphasis is decidedly different. For instance, he focuses on the civil rights battles that made it more difficult to commit people.

  • Hi Jill-
    The way Torrey relates the story, the original group was focused on prevention. This was the initial focsu of NIMH. As the drugs came into use, another group at NIMH began to focus on thier use and over time, the focus of NIMH shifted.

  • larmac
    I want to offer my deep condolences for the loss of your son. There really are no words.
    I think there is increasing awareness among my colleagues that cannabis is dangerous for some individuals. I agree this is a hard message to convey. I have an extremely diifficult time convincing the people I see of this.
    Sandy

  • Rossa,
    Thanks for the comment. A point that I think is important is that this does not need to be an all or none approach. I think dose matters so being able to function on a lower dose is a good thing and for some people may turn out to be better than being on no drug. This is supported in the Wunderink study. So many of the long term negative effects of these drugs are dose related. I think this is a highly individualized matter so trying to work with a person to figure out what seems to be best for him is reasonable. I think this is very much in keeping with the Harm Reduction Guide to drug discontinuation. what I think we want to avoid is making th assumption that the initial dose of the durg is the one that is required indefinitely.
    Sandy

  • Dear N.I.,
    Thank you so much for sharing this story. It is as important as the blog itself. A N of one, yes, but as David Healy and others have pointed out, randomized control studies tell us some things but they do not tell us everything and careful “case reports” also offer valuable information. I did not provide the individual stories from my group. It vaires. For some, there just seems to be no difference – good or bad. I am just happy that we have successfully ben able to reduce the long term risks, almost all of which are dose related. For others though, there is this similar type of “awakening”. In addition – and this is what is hard to capture- these is a personal empowerment. Just the knowledge and experience of being so active in the decision making seems to be helpful. One person just returned to work for the first time in many years, she is exercising regularly. We watched the Eleanor Longden TED talk together and she is working to have a different and more active role with the voices she hears(which were as present on the a dose that was over three times higher than her current one). However, not every story is a happy one and as I noted above, there is much we need to learn.
    Thanks,
    Sandy

  • I do not feel insulted but I am not sure how to respond. If I went to work tomorrow and was so muddled that I could not do my job, I probably would seek a consulation. If I did not notice the problem, I think others might insist on my seeking evaluation. If I was worried about my clarity of thought, even if others di dnot notice, I might seek evaluation.
    The point I was making is that these states are not categorical. Confused thinking is a subjective experience and is evaluated subjectively.

  • Thanks, Tom Jones.
    In that statement, I was suggesting that I think most psyciatrists would readily accept that trauma, life stress, personal relationships, etc. play a role in causing the various problems people have. But when it comes to psychosis, I think they tend to believe that biology plays a much larger role. That was the context in which I was invited to post on 1BOM. There was a suggestion that there are some core syndromes – psychosis being one of them – that is fundamentally a biomedical problem. I am challenging that contention.

  • Thanks, mjk. I am not sure if this is a rhetorical question, but muddled thinking (which someone pointed out I use 3 times in this post!) can be considered a symptom. But the subjective nature of this process and the ways in which what are considered “symptoms” blurs into “normal” thinking is one point of my post – or at least one source of my muddled state.

  • Hi Alex-
    Thanks for your comments. I do think that mindfulness is a quality that is likely to be universally helpful. My intention is to try to work with everyone who comes through my door. In that respect, I think I need to have more connection to what you are describing (if not personally, then at least being open to it and helping people make the connections they need). At the same time, I want to be able to work with those who, as you say, have resistance to your perspective.
    I am not sure we have a disagreement. I think this is an important topic.

  • Alex,
    thank you so much for the comments and for sharing from your personal experience. I have come to agree with you about what we need to know about the brain. I went to talk last week on epigenetics. The lecturer was almost apologetic that this field sort of confirms what common sense has always told us – heredity, environment all work together to make us who we are. Epigenetics just provides a possible explanation of how that works. the science is interesting but not really necessary. I wrote about this in my blog on the lonlieness data.
    But your report of your own experience is so important and valuable. I think many psychiatrists accept this with some sorts of problems but not alwasy when it comes to psychosis.
    So thanks,
    Sandy

  • Thanks, Matthew. The credit for that goes to Joanna Moncrieff. Psychiatrists have no trouble thinking in that way when we think about benzodiazepine drugs. They will make everyone feel relaxed or sleepy – not just those who are anxious or can’t sleep. We are less inclined ot think that way when it comes to neuroleptics or so-called antidepressants but there is no reason why we shouldn’t.

  • Thanks, Dr. Ragins, for sharing this. To others, please see the review of Dr. Moncrieff’s new book, The Bitterest Pills. I will also be writing about this. One of the many points she makes in the book is that our disease centered approach (which is criticized in the post) is that we are left with some fundamental questions about how to best use them (if ever).
    This diease centered approach is what fueled the notion that waiting and helping people before introducing drugs is bad for the brain and it is what contributed to our being blinded to the impact of drug induced brain changes vs “disease” induced changes. I plan to write more about this book and this conversation but having a dialogue with someone like Dr. Ragins is pretty critical to the prospect of effecting change in our system of care.
    Sandy

  • Dr. Thomas,
    Thanks for this review. I was working on one myself! I enjoyed hearing you speak at IPS. I was there to present the results of my experience tapering neurolpetics. I wanted to say hello but you were surrounded by fans. In her last – and quite eloquent – chapter, she points out how many questions remain. She argues that we still have these questions because we have taken a disease centered approach. Perhaps, this is why she did not give many recommendations. More to follow when I do get around to writing more about my study and this important book.
    Sandy

  • Thanks for posting this. Dr. Ragins is a thoughtful psychiatrist who does excellent work. Check out “The Village” which seems to be a model for a recovery oriented program in Lost Angeles.

    http://mhavillage.squarespace.com/

    It was notable to me that the issue of the American Association of Community Psychiatrists gave so much time to this topic (without any rebuttal). The Editor’s note included an honest statement about Whitaker’s work and why we need to pay careful attention to what he has written.
    Sandy

  • With regard to addressing the professional staff, bring in the Wunderink article along with McGorry’s editorial and Insel’s blog. These are hard to refute or just dismiss.
    As for the general public, I think this is harder. Most of us – when considering complex topics – need to decide which expert we will believe. We have no choice since it takes so much time to read the primary material and decide for ourselves. So moving for a shift in expert consensus opinion is very important. This i hard. I just leanred that Fuller torrey will be on 60 Minutes this Sunday. I am not sure he represents US psychiatry consensus opinion but he has the cloak of authority.

  • mjk-
    I am sorry if I was not clear. I did not intend to accuse you of being angry or disrespectful. I am responding not only to you but to others who have raised similar issues in previous posts.
    In about a month, I will post the results of two years of tapering neuroleptics. About 40% of people choose to stop tapering. The reasons vary. Some people do hear more voices and do not like that. Some people find that they have delusional thoughts and they do not like that. Some people just get frightened about having a recurrence of experiences that they did not like. I can say that they are making these decisiosn with a psychiatrist who is very supportive of tapering.
    I have no way of knowing to what extent this is withdrawal from the drug vs. the emergence of the initial problem that resulted in drugs getting started or if it is a psychological reaction to doing something that they have been told in the past is bad for them. I am not even sure there is a way to make these distinctions.
    It is an interesting thing about “claims of effiacy”. The effiacy of neurolpetics is not really questioned in the psychiatric world – at least not in terms of short term impact on reducing psychotic symptoms – but they are widely questioned here. I am trying to bridge these two worlds.
    I do not think it is an effective change strategy to deny all claims of efficacy. I think it is better to be specific about what hose claims are based on (short term studies that focus on a narrow set of “symptoms”) and to point out the limitations of those claims.
    But that is just me. No disprespect towards your view is or was intended.
    Sandy

  • mjk-
    This seems to come up again and again. People here who are angry with psychiatry are angry in part because they have not been heard. They are angry, for instance, that if someone protests and says the drugs do more harm than good that this opinion is dismissed as “lack of insight” or anosognosia. I understand that anger.
    I have been working in a systematic way to taper the doses of the drugs people who see me are taking. We have frank discussions about the long term problems associated with these drugs.
    When the dose of neuroleptic is tapered, there are some who will hear voices or the voices they hear will get louder.
    We talk about these voices. We talk about what they might mean. We talk about different strategies to live with them – to engage them, to ignore them. I encourge attendance at the local Hearing Voices group. I hand out copies of the National Empowerment Center’s handbook on living with voices. I am honest about what I do and do not know about these drugs. I do not take a “symptom focused” approach and insist the only goal is to erradicate voices. The only goal to to respect the person who is sitting in my office.
    Some people choose to hear the voices than to take the drug or increase the dose.
    However, some say that they feel better on the higher dose of the drug. That is what they prefer. To ignore that or to dismiss it as a desperate attempt to win approval (from a psychiatrist who is fully supportive of tapering the dose) seems extremely disrespectful and akin to the kind of disrespect that so many have protested on this site.
    Sandy

  • Thanks, NI. Your comments are of great interest to me. I have never had these experiences so I can only rely on what people tell me and I an interested in all perspectives and experiences.
    Your description of no longer caring about immediate concerns may be the clue as to why something that appears in some contexts to be helpful may also have long term problems.
    A delusion can be considered to be an idea that someone is intensely concenred about – in the view of others the concern is disproportionate. So if the concern lessens, that would be viewed as a good thing.
    But if this lack of concern is not specific, i.e., if it creates a more global lack of concern, then it creates more problems even as it appears to be helping in some way.
    What I hear from the people I see in my office is quite variable. some of them appreciate the effects of the drugs while others abhor it.
    Sandy

  • Thank you, Russerford. What I hear – from good and well intentioned psychiatrists – is this sense that when confronted by people who are suffering that they feel compelled to do “something”. That something may involve prescribing drugs for which the evidence base in support of their effiacy is sketchy. It seems critical to get the word out that these drugs are far from benign and the short term “benefit” of offering “something” is far outweighed by these long term negative effects.

  • Thanks for the comments, Jonah.
    I was responding to your statements that I had written with insensivity. I am not sure I can thread the needle of speaking “in a perfectly straightforward way”(which is actually what I try to do) while also not running the risk being insensitive to someone. Perhaps I misunderstood the point of your earlier comment.
    With regard to addressing cases in a composite way, I have given this some thought. I continue to be worried about confidentiality.
    Sandy

  • Dear Jonah-
    I am sorry that you find my remarks to be lacking in sensitivty. It is tempting to never mention the challenges I face in my practice in trying to figure out how to be helpful to people whose behavior puts them or others at risk.
    I in no way want to dismiss the plight of those of you have have had treatments forced on you. I think many of your arguments are valid,i.e., why should psychiatry hold a position of authority when core aspects of the profession (diagnostic classification, treatment efficacy) have questionable validity. I encourage you in your efforts to change the laws.
    In my opinion, it would be disrespectful to not be honest about what I do, how I do it, and what the questions are for me in my everyday practice.
    But if my comments have caused you pain, I am sorry for that.
    Sandy

  • One area in which I have some agreement with Dr. Lieberman is that this problem is not confined to psychiatry. This is a problem throughout medicine. It includes drugs and devices. This in no way excuses psychiatry but I think people need to know the extent to which the entire enterprise of modern medicine rests upon shaky data. That is the main message of Goldacre’s “Bad Pharma” and Healy’s “Pharmageddon”. Psychiatry is a vulnerable target because of the sponginess of our diagnostic system and the ubiquity of emotional distress.
    Thanks you for your comments.
    Sandy

  • I suspect that the number of those who take these drugs willingly is even higher. If we were to include your criteria for taking drugs as involuntary then almost all drug use would fall under that category. I also think it draws away from the very serious matter of administering a drug against someone stated wishes.
    I do not want to dismiss Anonymous’ concerns about the use of involuntary drugs, I agree with Matthew that this is not likely the thing that drives the profits. Drug companies are looking for the broadest market possible.
    Sandy

  • As I noted above, Dr. Nasrallah is the editor of Current Psychiatry. This is a trade journal so it’s academic standards are not high. I wrote about it because it is distributed for free and a lot of psychiatrists as least glance at it. I think these sorts of articles have some impact but it is hard for me to know how much.
    Thanks for your many helpful comments. I do want to try to get a better handle on this.
    Sandy

  • Yesterday someone asked me how I would design the “system” if I had that authority. I have been asked this before and I do not have a ready answer since I am not sure how to resolve some of the problems. What I did say was that I wished that everyone had a shared appreciation of the limits of our knowledge about these drugs and that everyone used them with caution. This would include limiting poly pharmacy. There is increasing concern about the long term effects of benzodiazepines. Combining that with the fact that in the short term, they pose a risk of addiction and diversion and that people tend to quickly accomodate to their effects, I try to avoid prescibing them.
    There are many people who come to me with the conviction that these drugs are essential to their recovery and that is a challenge. There are people who are as adamant and passionate about their need for these drugs as there are people who are passionate and adament that they have done them great damage.
    If first and foremost, one wants to be centered on the wishes and preferences of the person seeking care, this is a challenge for a psychiatrist who takes a cautious approach to prescribing.
    Sandy

  • This is a response to Abbot from 7/25/13-
    I suspect we are at an impasse. I think that some people feel better when they take these drugs and I think that effect goes beyond tranquilization. This belief is based on the results of many studies as well as what people tell me. I do not think they help everyone and I think they should be used as judiciously as possible.
    Now I do understand that each person’s experience is complex and no one can never know for sure what mediates the response in any one person. However, I am not a cheerleader for these drugs and I am often having talks with people about the need to minimze exposure to them. You and others here seem to be insistent that any experienced positive response is due to coercion, society expectations, placebo or some other factor. For me this is similar to the alternative view that considers any long term decline in function in someone who has taken the drugs for many years is due to the underlying “illness” rather than the drug.
    From a pragmatic point of view, I think that advocates will be more successful in arguing for moderation rather than for banning the use of these drugs. I do not argue for that only due to pragmatics – it is what I believe at this point – but I am just suggesting that it is another factor to b econsidered.
    Sandy

  • Hi Donna-
    I do not think the long acting injectables are more harmful so I would suggest the same judicious use of this formulation. One problem wiht LAI risperidone is that the dose is fixed so you can not reduce it to very samll amounts as you can wiht haloperidol decanoate.
    I am not sure Bob needs a life line from me but honestly many people have already made up thier minds so comments are not likely to have much of an influence.
    I see that here as well.
    Sandy

  • N.I.-
    Thanks for these comments. They are important and so articulate that I hesitate to add anything.
    What psychiatrists label “psychosis” is in my opinion so highly variable and still so poorly understood that it is hard for me to make any blanket statements about how to help.
    Respectig that variability seems hugely important to me.
    You write about those who
    “may believe that drugs have helped them and might in the future help them in some measure know too what it has meant to look back at the rubble that had been our lives and our minds in agony and anger, to want answers”
    Thank you for sharing this perspective.
    Sandy

  • Thank you for your comments.
    I am not requiring anyone to supply me with information. I just was asking if any readers had some information or perspectives they wanted to share. I did not intent to stress anyone. If anything, my query was a reflection of my respect for this audience.
    Sandy

  • I do, Hermes. thanks for al of your research this week. I have not had time to get to it but that is my intention. What I will be looking for is whether the SGA’s were given the saem serious scrutiny as haloperidol. That is what one would expect. We would want to compare the drugs in head to head compariosns – with doses equivalents that mirror clinical use – in order to make claims about cmparative damage.
    Sandy

  • OK. I understand. I like the component of Joanna Moncrieff’s notion of a drug centtered approach. All of these substances impact cognition, mood, beahvior. Most of them have at least some potential for benefit and harm. These potentials probably vary among individuals. We want to empower indivduals to make the best decision for themselves.
    I share your skepticism about the concept of dual diagnosis. Given how shaky diagnosis is, to add mutiple labels seems especially treacherous.
    Sandy

  • Stephen you asked above, “Why is it so important to force people to conform with “consensual reality?”

    Not sharing consensual reality can make it hard to navigate in the world. Sometimes the idiosnycratic reality is scary and if someone can learn that the world -as scary as it is – may not be quite so terrifying as the person perceives it to be, then that can reduce suffering.
    Consensual reality is a broad thing – look at how many views are held within this one somewhat narrow website. As I have told people many times over the years, I am not the thought police. I do not decide what is the one true reality. If people hold views that are different from mine, so be it.
    It is when those views cause them pain or make it hard for them to carry on with their lives, that I think I can sometimes be of help.

  • This is a response to Marion Golstein’s lastest comment.
    I agree that qualitative studies are important. I also agree that science needs to be informed by philosophical concerns. I do not think I have a profound understanding of neuroscience. In fact, the more I try to understand modern neuroscience, the less I think I understand it.
    I wrote about how I think neuroscience can inform our understanding of the mind in a recent post.
    https://www.madinamerica.com/2013/05/does-neuroscience-matter/

    One of the points I tried to make is that I do not think we need to understand the brain functioning on a minute level to accept that brain functioning is important to cognition, mood, and mental experience. I also do not think that this understanding will address existential questions or resolve them. One can be curious without thinking this line of research will yield a particular treatment.

    At the same time, I would like to be respectful of peoples’ experiences. If a person finds relief or benefit from a drug treatment, we should accept that. Just as we can not dismiss all benefits of drugs as due to placebo, we can not assign all delterious effects to nocebo (negative placebo effects).

    We can all share in the collective humility of the limits of our knowledge about such complex topics.

  • Thanks for the comments, Alix. This exchange has been interesting and helpful. I want at some point to pull all of this together to have a cogent reply to Dr. Nasrallah’s editorial. It is clear that all of these drugs have problems. One point that has been made is that it may come down to how one defines “neurotoxic” and “neuroprotective”.
    Sandy

  • Marion-
    This is my comment to your comment of 7/23/13 @ 2:31 am.
    I am not disagreeing with most of what you write. In any given person, I do not know what mediates change. It is my obligation to keep this in mind.
    I also agree that the drugs are not entirly specific; they do not target just a particular “symptom”.
    What I have observed is that they seem, for some people, to be helpful with certain problems that I named above. This is not to say they do not also have effects that were neither intended nor desired.
    As noted, I would be very interested in having all drug studies include an active placebo arm, i.e., a drug that had some effect but not the intended one. For antipscyhotics, this would mean including a benzodiazepine.
    As I mentioned above to Donna, I think much good can come out of
    1)understanding that these drugs have highly variable effects and in the studies that have been done the effect size is small,
    2) moderating dose, and
    3) not assuming that everyone will require them or if they are started will need to remain on them.
    So even if you and I disagree on whether they have any value, I think there is still much on which we probably agree.
    Sandy

  • Donna-
    Most everything I read suggests that dose reduction reduces harm.
    I am not sure I agree entirely with 1BOM about perphenazine (Trilafon). Every drug has side effects so it comes down to choosing which side effect is worse. There is some sugestion that tardive dyskinesia risk is higher with the FGA’s but weight gain is higher with the SGA’s.
    However, I do think dose is very important – both in analyzing the studies and in using the drugs.
    So a low dose of perphenazine may be safer than a higher dose of an SGA.
    The message on dose was big in the early 90’s but with the marketing of the SGA’s people got the (mis)impression that hey were much safer so higher doses, broader indications, and polypharmacy became more common.
    I guess I have a harm reduction approach towards my colleagues. I do not think people will stop prescribing neuroleptics but there are compelling reasons to moderate dose that if that message could get out, some good would come of it.
    Sandy

  • I am not discounting placebo effects. I am not saying these drugs are helpful to everyone. I also know that there are older studies that reported that benzodiazepines (undisputed tranquilizers) reduced psychotic symptoms as compared to placebo. There does seem to be consistent findings of a (modest) advantage for these drugs over placebo.
    In any give person, however, it is impossible to know what is placebo effect and what is a drug effect.
    What I am saying is that I have observed individuals who appear to experience reduced voices, improved organization of thoughts and/or reduced salience of views that do not comport with consensual reality and this improvement occured when the person was fully alert. It appears to me to be more than an effect of tranquilization.
    I would be interested in the results of a study that compared a benzodiazepine to a SGA to placebo but no one is going to do that.
    Sandy

  • I know that this is disputed – whether neurolpetics are only tranquilzers or whether they have some more specific effect. I am reading Joanna Moncrieff now and I think she argues that they do not impact specific symptoms. That has just not been my experience, although the impact is highly variable. There seem to be people who are midly sedated but experience dramatic reductions in voices, for example, or dramatic improvements in the clarity of their thoughts processes.
    I agree that it is very important to pay attention to substance use. However, abstinences from substances does not always result in the resolution of the problem.

  • I think they were trying to suggest that the effects on the serotonin receptor mediates the effects on dopamine. I agree that one can not make assumptions about the “class” of SGA’s based on findings with respect on one of them since the drugs are so different.
    Thanks for your ongoing research.
    Sandy

  • Jill-
    You are probably giving me way more credit on being able to help you out than I deserve but I can try. I also can get access to articles through my univseristy affiliation. However, I have a problem with time over the next few months. Can you e-mail me?
    I know David Lewis from my Pittsburgh days and he seemed to have great intellect and integrity. He wrote an honest appraisal of the Andreasen study in an accompanying editorial in the Archives.
    Sandy

  • Thanks, Jill. I was hoping to hear from you. This supports my suspicions and confirms that this will need a deeper dive. But the unequivocal nature(FGAs – bad, SGAs – good) of his remarks seemed supect to me.
    Sandy

  • Thank you for your comments.

    Re:
    “So yes, it may be beneficial for someone to disengage from a psychotic state sooner rather than later so that it won’t become a well established psychological pattern of viewing the world.”

    Neuroleptics over some period of time may help in this way. I have an obligation to understand these drugs as much as I can if I am going to prescribe them (which I do).

    That is an interesting point about the term neuroprotective. When I get back to this, I will attempt to address it.

    Sandy

  • It is because this editorial challenges some of my views that I was interested in it and decided to do more research. It was because Whitaker challenged my views that I decided to do more research.
    I agree that there is data suggesting that the SGA’s cause brain atrophy. We do know they can also causes neurologic side effects in both the short and long term.
    For those of you who think there is NEVER a reason to recommend these drugs, this differential potential for damage is a moot point. I am not one of those people although I do want to prescribe in a way that does the least harm.
    What is confusing is that there are different levels on which to do research- one at the level of imaging and one at a celluslar level.
    Since I do prescribe but in a way that minimizes harm I need to learn about the differential effects of these drugs and that is my intention.
    I wrote this in advance of my own research and I think that is what is confusing here. However, I wanted to tap into the experts on this site to help me.
    Sandy

  • I skimmed that Nandra article which is also a review. It is open access. I agree with your summary and your thoughts on the dose response issues and I also agree that this will require some deeper digging.
    Thanks for your thoughts on this,
    Sandy

  • You are correct that I can’t comment on your bronchitis this winter (not because I do not want to give free advice but because I do not know enough to respond), but I think that doctors often feel the pull to “do something” even when the evidence does not support what it is they do.
    I was just reading today (and now I can not remember where!) that many people are given injections into their backs for lower back pain. Recent studies suggest it does not help and it may make things worse in the long run. But many people probably are convinced they derive benefit and might be willing to take the short term relief and put aside concerns about long term problems. Sound familiar?
    When my children were young I was convinced their ear infections resolved more quickly with antibiotics. I really wanted them even though I knew they were likely to be experiencg viral and not bacterial infections, rendering the antibiotics useless. But I wanted to get sleep at night and I did not want to miss work. The evidence is now clearer that antibiotics should not be used in these circumstances but I was pretty convinced that my kids needed them.
    I think these delimmas are common in medicine.

  • The data on brain atrophy – based on human imaging studies – is not entirely the same as the data on the potential neuroprotective/neurotoxic properties of these drugs – based on animal laboratory studies. One might expect them to be related but they are not the same thing.
    I am also not saying that what Dr. Nasrallah is writing is pretense. I do not believe he is lying. I just suspect the story is more complex but at this point, I do not know enough to form a conclusion.

  • I am reporting on an editorial by Dr. Nasrallah in which he states that the newer drugs have been demonstrated to have neuroprotective qualities. These are animal studies.
    As I noted, the Andreasen was done in the past two decades and the SGA’s were used and not found to confer any advantage.
    Even if Nasrallah is correct, it does not change my opinion that we need to moderate the use of these drugs.
    Thanks for reading and commenting.
    Sandy

  • Thank you for your thoughtful comments. If you haven’t already done so, you might want to post this on Robert Whitaker’s blog on this topic since many more people will see it.
    Your clarification is valid although I did not suggest that neurolpetics should never be used.
    In this current debate there is often polarization. In the arenas where it is assumed that neuroleptics are intrinsic to recovery and where the concerns about long term problems are minimized, one wants to emphasize the problems associated with these drugs.
    In the arenas where it is assumed these drugs are unquestionably bad, one wants to emphasize, as you do, that they can be beneficial for some.
    I move between both of these worlds and I try to keep my message consistent.
    The data is complex and although this particular study does not address it, I do think there are some people who can recover without these drugs and there may be value in working harder than we do to identify who these individuals are. Our system of care tends to rely heavily on convincing everyone to take these drugs and I would like to be able to have more room for flexibility.
    At the same time, I see individuals who seem to truly struggle when they stop or decline to take the drugs and remains unclear to me that we have good alternatives for everyone.

  • Donna-
    This is an interesting anecdote; thank you for sharing it.
    Don’t you think that it raises the question that when we are angry at the reponse we get from a doctor that it is hard to know where we are on the arc that you describe above: is the doctor being unreasonable? is the doctor inadequately educated about the true nature of the treatment? is the person who is seeking consultation overly influenced by outside sources (cultural expectations, advertsing) to accept the doctor’s point of view?
    I will concede that you have read more about ECT than I. It is not a treatment I administer but I try to be honest and in that spirit I acknowledge that I have referred individuals for consulation for ECT. As you know, ECT was not the topic of this blog.

    However,for me the conundrum – the paradox which was the topic of this blog – is not that many of the things psychiatrists prescribe have no benefit but rather that the short term benefit may not be worth the long term consequences. Explaining that to individuals who are sufffering or to families whose loved ones are suffering and at risk of getting in harms’ way is challenging. And what is the “right” thing to do when someone says I do not care about the long term, I want relief now. Who should determine if that person truly understands the risks, who should determine how to balance those risks? I can tell you that as angry as people are on this site at doctors who were overly optimistic or even misleading about the benefits of treatment, there are scores of people out there who are angry that doctors would not give them the thing they were certain they needed. Some commentators on this site have talked about the benefits of marijuana; however, this is a drug that appears to trigger psychosis in some individuals. Is this a good drug or a bad drug?
    I contend that there are often no clear or easy answers.
    With your permission, I may want to use your anecdote as the basis for a future blog.
    Sandy

  • Hi Donna,
    You are not annoying me but we may be at an impasse. I continue to think the issue is one of informed consent. Although I do not administer ECT I have worked with people who have received this treatment. Some of whom have had it and find it to be of great benefit despite their experience of memory impairment. It seems that like many things, it comes down to weighing the potential risks and benefits. You may see no benefit so therefore you would never suggest it. There are others who experience some benefit and find the benefit outweighs the problems.
    However, to make this even more complicated, I have known individuals who from my vantage point seem to derive limited benefit yet they insist on this form of treatment. I have argued against this form of treatment in those cases and they have blamed me for interferring with their right ot get something that they insist is of help. People are complicated.
    Sandy

  • Hi Stephen-
    I am not sure if this question is rhetorical. I have no good answer. As I wrote in my earlier posts on optimal use of neuroleptics, I think there is a general sense that the drugs are more effective than they really are so when a person does not improve, the assumption is that he just needs more.
    For some reason since these drugs were first introduced, there was a tendency to use higher doses in the US than in other countries. Although I have no good data to support this, I think that this may still be true.
    When Joe McEvoy did his neuroleptic threshold study in the early 1990’s and demonstrated that low doses were as effective as higher ones, there was a moment when that message may have gotten more traction but as the newer drugs were brought to market, the advertsiing led to this sense that they were much safer so people did not have as much concern about pushing the doses higher.
    That is just my speculation about this.
    Here is the link to the blog where I discuss this:
    https://www.madinamerica.com/2013/03/optimal-use-of-neuroleptic-drugs-introduction/
    Sandy

  • Hi Donna,
    There is much in this statement. Although these physicians are more than capable of speaking for themselves, I would suggest that there is an important distinction between someone who asserts that ECT may play a role in helping some individuals and being someone who has a hidden agenda to promote it. I do not believe that Drs. Nardo and Healy have a hidden agenda nor do I think that they would characterize ECT as a penicillin of psychiatry. At the same time, when one looks at the history of psychiatry and its many failed treatments, I understand your skepticism. We may just have to agree to disagree on aspects of this discussion. We do share an anger about the misrepresentations that have been made about drug treatments.
    I was not a co-author on a book about drug side effects but I wrote a chapter for a book many years ago. I am surprised it is still for sale at Amazon.
    Sandy

  • I am a subscriber to biology playing a hand in everything but the fact that our thoughts and mental experiences are based on some biological substrate does not mean that we require a drug to alter it. Smiling alters some aspects of brain functioning and improves mood or at least the sense of well being.

    There are two ongoings studies of Open Dialogue or a dialogic approach funded by the Foundation for Excellence in Mental Health Care. One is to characterize it more and to create manuals and the other is a treatment study.
    http://femhc.org/Projects.aspx
    I think we will learn more about his in the next few years.
    Sandy

  • Thank you Jeremy for these excellent comments. I am reading Dr. Moncreiff’s book right now and I like the notion of the drug centered appraoch. That is why I included the comments about the relative specificty (not so much for a “disease” of schizophrenia but for the phenomena of voices, disorgainzed thoughts) of neurolpetics.
    Sandy

  • Hi Donna,
    Thank you for your nice words.
    You raise many points. I will address what I can.
    1. ECT – It would take me a lot of time to truly answer this question. I am currently reading Dr. Moncrieff’s book in which she reviews some of the data on ECT. You undoubtedly are more familiar with this than I. I have observed some individuals in extreme states have what appeared to be miraculous improvements from ECT but I have observed some people get it (even long term)who did not improve much. As with all of these things we offer, it needs to be used judiciously and with full informed consent. The consent needs to include information about both long and short term – and possibly irreversible – memory loss. I believe that is required by statute in VT due to the hard work of one tireless advocate.
    2.I respect Dr. Nardo even though we may not entirely agree on everything. There is rarely agreement on complex topics and in a field in which there is so much uncertainty, we should expect divergent views, even among decent, honest, and thoughtful individuals. I do not agree with Robert Whitaker about everything although I agree with him on many things and I admire him tremendously.
    3. Although I am studying dialogic practice, I think I may have inadvertently left the impression that I am offering Open Dialogue. I apologize for any role I have played in that. Open Dialogue is as much of a system of care as it is a particular treatment approach and it is nearly impossible to transform an entire system of care to replicate what they do in Finland. I may in the future write more about my experiences but in our new outreach team in which we are tyring to integrate some aspects of dialogic practice, we do employ people with lived experiences and they have been a wonderful addition to our team. You are correct that this is time intensive work and that is a big challemge for me. The numbers are so low that I am worried about writing about this in a confidential way. I am also worried that I will appear to be more of an expert than I am and I have received some critcism for that.
    4. Yes, I find the arc of my career surprising and ironic. However, what I have thought for many years is that empathy is something that needs to be part of every doctor patient relationship and is not the provence of psychoanalysis. I continue to have reservations with many aspects of psychoanalysis although I suspect that my early teachers influenced me in a way that has colored my clinical work through the years. Once again, during that time I met people who I admired and respected even though in the end we did not agree on many things. The wrongs of the pharma driven world do not excuse or correct the wrongs of other approaches and everthing should be open to honest crtique.
    5. Thank you for the book recommendations. I will add them to my ever growing pile! Summer reading…
    Sandy

  • Thanks, Duane.
    Those of you who work to abolish or limit the involuntary use of these drugs should be using all of this information in your efforts.
    In the state where I work, the indivdual response carries enormous weight in the legal prcess. So if a person has not shown any benefit to these drugs in the past, it will be much harder to obtain a court order permitting their use.
    If a person has never been on these durgs, the decison is a much harder one to make.
    As you know, I am fully in support of having as many options available so that we maximize individual decision making in this process.
    It is hard for everyone when a young person is in an extreme state and she and her family are overhwelmed by complex and confusing information.
    I think we all need to be humble about the limits of our current knowledge.
    Sandy

  • Hi Jill,
    Thanks for the comments. I am not sure if you are asking me to answer these questions but I will give answers where I have them:
    Left unmedicated, how long do extreme symptoms persist?
    I do not think there is one answer but in my read of the Soteria studies, Open Dialogue, and my own observation, it seems there is a group in whom symptoms last several months and then abate. I think it is highly variable. I would add that my direct experience of this has been with individuals who were abusing substances.

    Does anyone know how long it takes for receptor sensitivity to develop?
    We do not know what happens in humans because it is hard to study. In rats, it happens quickly.

    When people are discontinued from anti-dopaminergic agents, what percentage relapse and in what time frame.
    In the older drug discontinuation studies, there was ~ 70% relapse in individuals who discontinue drugs. In the Wunderink study, 43% in the DR group relapsed in the first two years and most of them were within a year. What was interesting is that those in the MT group had the same rate of relapse but it was just delayed.

    How long do relapses post discontinuation (which I’m assuming reflect drug withdrawal) last?
    I do not know and I guess I part ways with many of the folks here who assert that ALL relapse is drug withdrawal.

    When professionals don’t have answers is the ethical thing to do to inform patients and have them make decisions? (Of course, this will undermine the placebo effect.) Does one tell patients about the Ho et al. study? Is this part of informed consent?
    I lumped these questions together because I think you are asking the same thing. I think we have to discuss this. I am not going to write these blogs here and then pretend to not have this information when I am in my office talking to the individuals for whom I have the greatest responsibility as a physician. I agree that this seems likely to undermine the placebo effect. It is one of the things that make me wonder if I can keep working.

    Sandy

  • Thanks, Francesca. The LAIs are given either every two weeks or every four weeks depending on the particular drug. But to be clear, LAI’s have been around since at least the 1970’s. The news is that some of the newer drugs are now available in this formulation and these are still on patent.
    Sandy

  • Hi Jill,
    This is an interesting take on this study but I do not think Andreasen is advising treating with more neurolpetic. She suggests that “clinicians should strive to use the lowest dose possible.” I understand you are raising a different point – that the brain loss associated with relapse might not be ameliorated with antipsychotic drugs that she has demonstrated have their own impact on brain tissue loss.
    I do think that the message about minimal dose is an important and an achievable one within the field at least for now. It would be an important harm reduction step to at least raise the appreciation that less may be more for so many people.
    I continue to think that there is so much variability – as you point out – that it is hard to make one recommendation.
    I share you concern – really shock and awe – about ketamine.
    Sandy

  • Thank you, Jonah.
    I understand that the dangerousness criteria are problematic since it often relies on future predictions and we know we are not good at making those predictions. I believe they are applied in inconsistent ways.
    I do stand my assertion that there is at least an attempt at reasonable due process in VT, more so than what I observed in other states. If I get my energy up for this (and I am prepared for the many comments), I will try to write more about how it works.
    I think you have gotten my message that I make no pretense of having good answers to your important and profound questions. I only have more questions.
    I hope you had a good walk.
    Sandy

  • Jonah-
    I feel that I am in a bind. I do not want to say something that is triggering to you and yet since I do not know you, I am not sure what will be hurtful. And yet, silence from me is also hurtful. One thing I did not put in my list for my relative silence on this topic is that it was not the topic of the post. I have re-read my coercion post. I still think I captured much of what I can articulate about this. It was my attempt to just be honest here about the work I do.

    I can address one point you ask about above, namely the separation between holding someone against his will in a hospital vs. giving someone drugs against his will.
    In VT, a person can be held in a hospital but this does not allow the hospital to forcibly drug the person unless there is an emergency in which the person is considered to be a danger to himself or others in that instance. In order to force a person to take drugs in a non-emergency situation, there is a requirement for a separate hearing. This is not something I can prove to you but it seems to me that the legal representation offered to people in VT is far superior to what I have seen offered in the other states in which I worked (MA and PA).
    Given where I currently work, I am involved in the first but not the second process. I was not trying to be euphemistic in my language. At the same time, I know that my actions put people in a system where involuntary drug treatment may occur.

    The dilemma for me is that the options for me are to quit entirely, work in a setting that is entirely voluntary, or to remain where I am and try to be as honest as I can in making decisions and informing people of the true risks and benefits of these drugs.
    Perhaps the only ethical choice is to quit but I have a number of people who come to see me who seem to value what I do.
    If I went into a setting that was entirely voluntary, this seems to be an error of omission since there will still be indivduals who are brought into ER’s in extreme states who would never get to me and who I would not know how to help in this other setting. This is what I was trying to get at when I wrote above:
    “I applaud having alternatives to hospitalization for those who are experiencing extreme states, but even where I work, those programs do not accept individuals who are violent and they still rely on the emergency rooms.”
    So for now, I choose the last option. For what it is worth, I at least give the options serious consideration but I do not want to pay you the insult of pandering to you or others on this site. I am trying to take responsibility for my actions.

    Finally as to my role here on MIA: I do not intend to trigger readers. I try to be respectful. The internet is vast. No one needs to read what I write. I will leave it to the adminstrators of MIA to ask me to leave if these contributions are not helpful.

    I also offered a response today to Anonymous which you may not have seen. I think it at least partially addresses what you raise:
    To Anonymous 6/29/13 7:38 am-
    At the risk of stirring this up again:
    I am not “pro” involuntary treatment. I try to do everythig I can to help people stay out of hospitals.
    However, until I am prepared or able to keep everyone out, I think it is hypocritical to condemn those who work in hospitals. I am not sure if this makes sense. But if there is someone who I do not know how to help, safely, out of the hospital and I play some role – even if it is a passive one – in that person getting admitted, then I share some responsibility for what happens after that person is admitted.
    Of course, if no psychiatrist ever agreed to participate in the current system, it would not exist. I can only take responsibiity for my own actions and that may be the choice I make one day. But for now, I am just trying to acknowledge my own personal responsibility.

    I am sorry if this offends. I am sorry for your suffering.
    Sandy

  • To Anonymous 6/29/13 7:38 am-
    At the risk of stirring this up again:
    I am not “pro” involuntary treatment. I try to do everythig I can to help people stay out of hospitals.
    However, until I am prepared or able to keep everyone out, I think it is hypocritical to condemn those who work in hospitals. I am not sure if this makes sense. But if there is someone who I do not know how to help, safely, out of the hospital and I play some role – even if it is a passive one – in that person getting admitted, then I share some responsibility for what happens after that person is admitted.
    Of course, if no psychiatrist ever agreed to participate in the current system, it would not exist. I can only take responsibiity for my own actions and that may be the choice I make one day. But for now, I am just trying to acknowledge my own personal responsibility.
    Sandy

  • I will admit to sloppy (albeit colloquial) use of an important term. I should have said something like he saw in psychiatry a chance to integrate science with empathy. I think he saw the value of the human connection in healing. But these are my words and he has written many blogs so he is clearly able to speak for himself.
    Sandy

  • Anonymous-
    The above response was directed towards a specific comment from Jonah on my “silence” here. I am just not sure where to put the response since there are no reply buttons. I was just trying to not ignore him.
    It is true that most of what I am doing today is opining on the detention question but I think it is disingenuous of me to say that is “only” what I am doing if that decision might be one that ultimately leads to the person receiving drugs against his will. That is why I am not making a fine distinction.
    Sandy

  • Jonah-
    I was not sure where to put this but this is my response to your most recent comment.
    I did not reply for several reasons.
    1. I did not have time this week. I am not sure what the core etiquette of blogging is, but sometimes, I just do not have the time to respond.
    2. I thought that with the Coercion post and subsequent comments, I did my best the address that topic. I honestly was not sure what else I could add.
    3. You are correct that I could use composites. It is what comes to mind. In my current position, I am called to an emergency room where I sometimes am asked to make a decision about whether an individual can be held against his will. I think that an attempt at composite would sound defensive and I do not think that is a helpful response. I understand that there is a fundamental arbitrariness to some of these decisions. I understand that some of the writers here have been on the receiving end of these decisions and they may have very good reasons to disagree with the decisions that were made.
    4. If some of you choose to fight to change this system, go right ahead. One thing I can say is that I work in a state that has a strong legal aide division. I am happy they are there. I see the fundamental imbalance and I want the people with whom I interact to have good legal representation. But I admit that I do not have an answer. I have struggled with this my whole career and I just do not know what is the best solution. I applaud having alternatives to hospitalization for those who are experiencing extreme states, but even where I work, those programs do not accept individuals who are violent and they still rely on the emergency rooms.
    5. I was at a loss at how to respond to comments that equate what I do with the KKK and Nazi’s. I do not want to shut out comments. I do not want to be defensive. I do not want to get into a virtual shouting match. I believe in free speech and I respect that people are entitled to their opinions, but I just do not know what more to say.
    Respectfully,
    Sandy

  • We have similar experiences. I do what I can by being a psychiatrist who is outspoken about the limits of these drugs and the medical model. I am not sure, though, If I am ready to do more.
    Thanks for commenting.
    Sandy

  • Anonymous and Jonah,
    I will admit that what I am about to write is a kind of non-response response. I wanted you to know that I have read what you have written and I take your comments seriously. I wrote the Coercion post because I did not want to run from my own personal role in a system that includes coercion. Without getting into personal stories – which I can not do for many reasons – I do not think I can address some of your questions. I know that one place where Anonymous and I have a disagreement is that he would prefer people in jail than in hospitals. Perhaps in another post I can address why we disagree.
    I appreciate Jonah ponting out that we may have some common ground. I also respect that we may not. I also respect why this topic is so serious and important.
    Sandy

  • Hi Alexa,
    That is an interesting experience. I guess what I am advocating is a shared decision making model in which the physician would have a collaborative model,i.e., not taking an absolute stance on treatment but having a thorough careful discussion of the risks and benefits of the different options. But at the same time, I know I have worked with people who have insisted on a particular treatment approach that I was not able to support. It is so hard for me to put myself in another’s doctor’s shoes, so to speak.
    I am glad that things worked out well for you.
    Sandy

  • Hi Richard,
    I agree that the influence of profit and commercialization is what corrupts medicine. I am not sure that this can ever be eliminated completely – even in a single payer system there will always be some competition among resources – but we could improve it from where it is today. The NYT article on colonoscopy compared costs between the US and other developed countries that had different payment systems and US costs were higher by at least an order of magnitude.
    Sandy

  • Hi Alexa,
    Your comments are surprising at least with regard to your experience with psychosis. I do not have experience with pre-diabetes, so I am ot sure what the pros and cons are of waiting vs starting with treatment. My only guess is that the physicians may disagree with your characterization of your experiences as psychotic but that is just a speculation.
    Sandy

  • Hi David,
    Thank you for this incredibly detailed and thoughtful exposition. I am not sure any comment I make will do this justice but your discussion of the importance of recognizing affect and the potential limitations of cognitively based therapuetic approaches is important although I admit that I am not an expert on any of this.
    Bill Anthony wrote an article on the importance of process as compared to technique; these non-specific factors that we all inuit to be important – empathy, connection, etc – may turn out to be as or even more critical than the techniques we promote.

    I am just a beginner student of Open Dialogue and I have been become concerned that I have perhaps (inadvertently) presented myself as having some expertise I do not posess; however, it does strike me that process seems to be specifically and highly valued in that paradigm.

    Sandy

  • Thanks, Jill. I have been suspicious of the statins since it is a class that is ripe for this sort of distortion. After all we al have cholesterol and I wonder how much money is made as the recommendations for target cholesterol are lowered. But I do not know the field well enough to comment.

  • Hi N.I.-
    I do not have any clear answer for the question you pose to me. It is, for me, the same as asking, “How do I find a good doctor?” Although others here see a clear demarcation between psychiatry and the rest of medicine, I see a blurry one. All of medicine is corrupted to some extent by corporate influences and distortions of studies and as soon as I go out of the small area where I have tried to carefully review the literature, I find myself a bit adrift in how to weigh the evidence for and against various interventions. I want to find a doctor who understands these influences, who understands that randomized controled trials are just one bit of evidence but have their own limitations, a doctor who understands that personal values will influence why one person makes one choice and another person makes another.
    The statin drugs are widely promoted these days. They are the drugs that lower cholesterol. For me, this is a suspect area since everyone has cholesterol and there is no question that every time guidelines suggest a lower target cholesterol as optimal that the market share for these drugs goes up enormously. It would take me a long time to go through all of the literature to form my own opinion about this so I need to find a doctor I trust to guide me on making a choice about when I would take one of those drugs. My training and experience leaves me very skeptical of much of modern medicine and I try very hard to avoid seeing doctors. I have been lucky so far and I am not sure what will happen as I get older.
    I find this true of other areas in which I look for expertise beyond my own. Do I personally fundamentally understand climate change? Not really. I read a fair amount but in the end, I decide whom to believe. That is different from forming an opinion based on my own interpretation of the basic science involved.
    I am not sure this is helpful but maybe I am just stalling because I do not have a good answer. My blogs on optimal use of neurolpetics were based on my attempt to review that literature. It leaves many unanswered questions but in reading your comments here, it seems that you and I are very close on how we think about this. You have made some choices for yourself based on your experience, the risks for you, your current liefstyle, and the inherent uncertainty. This is the kind of discussion I try to have with the people who come into my office.
    But I do find myself discouraging people from pursuing psychiatry. I will send them to your comments above for another perspective on this.
    Thank you again for this discussion,
    Sandy

  • Hi N.I.-
    Of the many comments I have received, this is one of the most powerful and meaningful to me. I am glad you have felt better as you slowly reduce the drug dose. I completely understand and share your caution and I would also caution those who label your perspective as a manefestation of some sort of psychological “buy in” to the prevailing medical model.
    I would love to hear from you again. I wish you the best. Your voice is important in this ongoing discussion.
    Thank you so much for sharing your experience with us.
    Sandy

  • Hi Donna,
    Thanks for reading and commenting. Good to hear from you.
    You are correct that I was chagrined, although not surprised, by Dr. Lieberman’s post. I did not have much to add to the many fine commentaries as well as the post from 1boringoldman who has become my role model in psychiatry:
    http://1boringoldman.com/index.php/2013/05/21/off-the-cuff/

    I am not going to comment on whether you could get a paranoia label other than to say, if you got it, so would I.

    However at the same time, I did not fully agree with Whitaker in his eugenics post nor am I comfortable equating modern psychiatry with the Holocaust (although on close reading, I get that this is not exactly what you are saying). What I worry about is that if the rhetoric gets too heated, this is what allows Lieberman to dismiss all of as us extremists who are motivated by nefarious forces as he does in his post.

    I am familiar with Dr. Philips and a a big fan of the UK Critical Psychiatry Network. When I have time I want to read his latest post more carefully. I respect him but I think our views to not entirely overlap. Not that they need to. I just want to read his post carefully before I comment.

    Sandy

  • To Morias and Political Heretic,
    I think that we largely agree. If my responses seem brief and superficial it is at least in part a reflection of limited time for me as well.
    I hope I am not seeming defensive of an apparatus (organized psychiatry)about which I have my own serious criticisms. I am just trying to have an interchange and to understand what others are saying.
    Just when I think that perhaps people are being unfair, I attend a talk (as I did recently) in which I hear a colleague using the worst sort of reductionism to explain these faulty contructs that we call psychiatric diagnosese. Or I read an article by the current APA president (link on this site) that dismisses all critics of psychiatry and having nefarious and hidden agendas.
    Thank you for this exchange.
    Sandy

  • What I would question above in the most recent comments is the sense of uncertainty about the meaning of these experiences. For me, this is a hypothesis. I accept that hypothesis but I do not think we have any more reason to accept this as certainty than we can accept some other hypothesese about which you are so critical. I also do not think it is correct to say that linking something to genes means that we are linking it to some unchangable biological essence. The neuroplasticity that you (and I) find so intriguing is likely based on an altered gene environment. In the loneliness studies, they find that genes can be turned on and off and this is likely involved in the ability for people to change in response to a changing environment.
    This is not to defend faulty studies and faulty interpretations of these studies but to defend uncertainty in our interpreation of peoples’ experiences.

  • Marian,
    This is an important point and one that I have had a hard time understanding since I am so immersed in the culture of “symptoms”. Although I do not think the DSM categories stand for descrete conditions, I still use the word symptom. I see that you object to that because it leads the next question: symptom of what? I guess I have used symptoms synonymously with “certain behaviors, emotions.” Many people, I see are bothered by particular behaviors and emotions. They feel “sick” even before I suggest this to them. I think I understand the objection to labeling something as a disease when we do not have any understanding of what that means but I do not think it is bad to reflect back to a person that I see her distress.
    If someone has a head-ache and I do not know what this signifies (i.e., what causes it), I have no objective measure, is it incorrect to call that a symptom?
    Sandy

  • Thanks, Russerford, and thank you for alerting us to this teleconference. I am also involved with my local NAMI organization and they have been very receptive to my particpiation. I am speaking at their annual conference today! I will be presenting my talk on Optimal Use of Neuroleptics. They have invited another psychiatrist to offer a different perspective but at least we are discussing this.
    Sandy

  • Thank you for your comments. I am sorry if I missed your main points (and I see now that you did mention neuroplasticity earlier). I was not intentionally shfitng the topic. I was doing my best to respond. I am sorry if this was frustrating for you; that was not my intent. I have appreciated this exchange and I think you make important and valid points.
    Sandy

  • I have no doubt I could benefit from many more lectures on philosophy of the mind.
    I agree that there is a serious flaw in studies that are premised on faulty diagnostic categories. We are sort of chasing our tales with those kinds of approaches. I think this is what Insel is trying to get at with the newly proposed categories. But when I reference neuroscience, I am referencing something much more basic than DSM categories since I think all of human experience is likely dimensional rather than categorical. I found the studies of social isolation to be of interest (although I am not offering a critique of those specific studies).
    I realize I may be saying two things. I do not think that the lonliness research is flawed from a conceptual perspective. At the same time, as I write above, I am bothered by “the notion that we needed the evidence of brain changes to legitimize Fromm-Riechmann’s initial observations”. For me,it is a problem that we are putting all of our eggs in the basket of basic neuroscience research and I think that is a mistake.
    I have a question for you. You say you are keen on neuroscience. What area of research do you find to be of value?
    Sandy

  • Thank you for your comments.
    You raise important points. I would also want to know if the controls who developed MDD had similar findings. I assume their use of the word familial is because this was a study that specifically focsued on individuals who had family members with a mood disorder.
    Maybe I am naive -and some of my colleagues might use that same accusation regarding my decision to blog on MIA- but I am skeptical about the well orchestrated component of your argument. I just do not think there is much in our world that is well orchestrated.
    What I find more worrisome is that neuroscience is not likely to find answers that are neat or simple or even understandable. I once heard a philosopher of science speak and she mentioned that her young son had asked, “What if the brain is more complicated than it is smart?” I suspect my own brain is.
    The decade of the brain did not reveal clear answers but it is did reveal increasing complexity. I think there will be a tendency to take this complexity and reduce it to pieces that form a coherent narrative that people can grasp. That is where I see danger and room for exploitation of the data for a host of reasons and goals.
    But to be clear, I have no argument with the assertion that there are people out there who will exploit data for commercial interests. It has happened before and it will happen again. Of that I have no doubt.
    Sandy

  • I certainly can join you in the fight for honesty. And I join you in your comment above: “I do this by trying to make sure I don’t speak beyond the scope of what is supported by direct clinical experience and clear and extensive bodies of evidence.”
    Sandy

  • The context of that series was to specifically address the effectiveness of that class of drugs in reducing symptoms that are labeled as psychosis. Since the term antipsychotic drug is used in the literature, I sometimes used it in that context. I did not and do not think I erred in leaving out the words “so called”. Honestly, it did not occur to me to use it in that contaxt and I am not sure it would have added but you may disagree.
    In the above blog, I was addressing the lack of specificity of these drugs. I happened to refer to the anti-dperessants but I could have easily referred to the anti-psychotics or anti-anxiety drugs. I do not disagree with your implicit point that all of these drugs are lacking in specificty.
    Thanks for your careful reading of my posts!
    Sandy

  • Hi Laura-
    Thanks for the response. I think you did accurately capture my question. You make a good point and a helpful distinction – this is not as much about symptoms as the different relationships people have with taking drugs.
    I also love this statement: “I believe in the dignity of risk.” This gives me an interesting framework to think about these very tough discussions. I do not have more to say right now but I will keep this phrase in mind.
    I appreciate your view of true informed consent – that is a critical, if not the most critical part of this discussion.
    Sandy

  • Thanks, Laura, for this very thoughtful response to what in some ways was probably a more mundane question, i.e, could alcohol withdrawal have contributed to how poorly you felt. It probably does not matter if alcohol contributed in some way although I accept your view of it since you were the one living it. You also point how that withdrawal was more than a psychiological thing and was related to your whole relationship to the drugs and to psychiatry. I see this all the time and a big question I have is how to help people regain a sense of autonomy. I think some have called it “locus of control.”
    One other comment re: dual diagnosis. I suspect that you and I may agree that it seems silly to talk about adding diagnoses when we are not even sure what any of these diagnoses mean. It is all a part of the reification of categories that have such limited validity. I also found it interesting to read of the transition from a diagnosis of Bipolar to Borderline This often is what happens when a person does not have the desired response to a drug. It is not seen as the failure of the drug to be beneficial but a reflection of an inaccurate diagnosis.
    Thanks again for your openness. I hope we get to meet someday.
    Sandy

  • I am not dismissing anyone’s assertions that the drugs are not helpful. I am talking about some individuals who seek drug treatment – even in the face of these drugs causing problems and not being terribly helpful. Although some of this may be due to the hype of the “pharma/mental health industrial complex”, I am not convinced that all of it comes from that.

  • Hi Laura-
    Thank you once again for an informative and fascinating post. I have a few thoughts and questions that I offer not with the intent to challenge you but rather to foster discussion of this important topic.

    You write that you initially attributed some of your post drug problems to alcohol withdrawal but then learned that it was due to the psychiatric drugs. How did you exclude alcohol? Although most people are familiar with the serious short term withdrawal from alcohol I have known people who appeared to have quite prolonged withdrawal states that seem to have much in common with what is described by others who are withdrawing from psychiatric drugs. This may be a minor point (because I am not suggesting that your experiences could not be due to everything you had stopped), I am just curious why you think that alcohol withdrawal was not a contributing factor.

    My other thought is that in my own mind, I have come to think of the problems of people who were treated for problems that include anxiety and depression as generally distinct from those who experience psychosis. I know that categorical distinctions are always flawed, however, I still find this general distinction to be of value. People who experience extremely dysphoric mood or anxiety states are more often coming to our clinic seeking treatment. Whereas people who are experiencing psychosis are more often in the category of those who do not want treatment. People in the latter category often have others who are insisting they need treatment whereas people in the former category seek it for themselves (I realize that this may not hold up for children and adolescents).

    So as a physician, I face different challenges. The person with severe anxiety is often pleading for me to prescribe something even when past experiences with psychiatric drugs have been unhelpful. The person with psychosis who does not want to be on drugs rarely complains about withdrawal. In those instances, the conversation is about avoiding harm from the psychosis, from avoiding getting into trouble from the condition or situation or extreme stress that led to the person being on medications in the first place.

    I reiterate that this type of categorical distinction is fraught with exceptions yet I still find it important because the conversations I can have with people who I either I am suggesting stop (or do not add more) psychiatric drugs in the face of their pleas are so different form those who insist on stopping in the face of previous problems they have had that have gotten them into serious trouble.
    Sandy

  • David-
    I agree that at the current time, there are no good alternatives for a person who is psychotic and poses some sort of risk to himself or others. I am not just talking about violence but also impaired judgement that could put the person in harms way. This is a harder problem at this time.
    However, there are many people who may have symptoms that do not put him or others at risk. For these, individuals there can be watchful waiting, individual and family suppport, urging to reduce substance abuse, perhaps prescribing low dose medications on a short term to improve sleep. These are all things we can do now but there needs to be a belief that this can work and it does not go against treatment standards which suggest that neuroleptics have to be prescribed immediately. If one believes that the only way to recover is with neuroleptics then one will never consider waiting.
    Sandy

  • Hermes-
    Subotnik interprets his results as indicating that we need to work even harder to insure adherence. The accompanying commentary reiterates that. There is not much talk anymore about the newer drugs improving cognition because the data just does not support this.
    I find it interesting that we are now seeing multiple articles on the advantages of long acting injectables. This coincides with the marketing of very expensive versions of long acting SGA’s; they are on patent so there is still quite a bit of marketing muscle behind them. Given that there is no strong evidence in favor of SGA over the older drugs, it seems that if one wants to prescribe a long acting version, one might as well use haloperidol decanaote which is much less expensive than the newer long acting drugs. At low doses, it should be just as good as the long acting version of risperidone but about 1/10th of the cost.
    I would challenge the view that it is easier to insure adherence with injectable drugs. This may be true for the person who indicates that he wants to take the drug. The clinic knows if he comes in and can call and remind him if this is simply a matter of forgetfulness. But the notion that this can improve adherence for those who are ambivalent should be challenged. It is just as easy for someone to decline to come into the clinic as to decline to take a pill.

    I am so glad that you added the link to the Gordon and Green letter. They also had an excellent article published in Psychiatric Times just this week on a shared decision making model for prescribing these drugs. It is very consistent with what I have written in this series.

    ttp://www.psychiatrictimes.com/schizophrenia/content/article/10168/2137508

    Sandy

  • In response to several readers, I want to elaborate on my discussion of the Subotnik paper and clarify that (admittedly hard to read) chart.

    This study was done in the context of an intensive treatment program for individuals who were in the beginning of experiencing a psychotic condition.

    They assessed adherence with pill counts (biweekly), drug levels (monthly), patient reports (weekly to biweekly), and clinician rating of side effects (weekly to biweekly).

    In the chart I included in this blog, I gave their definitions of non-adherence. The percentages in the third column refer to the number of individuals who met each criteria during the follow-up period. I included this to give a sense of what they mean by “mild non-adherence” since the finding of this study is that mild non-adherence raises the risk of relapse significantly.

    They assessed psychiatric symptoms with the Brief Psychiatric Rating Scale (BPRS) and relapse was defined as an increase in symptoms as measured by that scale.

    Regarding the distinction between relapse and withdrawal, I do not think this was addressed specifically. If the person had symptoms that would be captured on the BPRS this would be called a relapse. The distinction is made between relapse vs. withdrawal, relates to the etiology of the symptoms and I am not sure there is a way to actually measure that.

    Thanks again for the many interesting comments.
    Sandy

  • Thanks Bob!! This is incorporated into my own teaching with both medical Students and residents and it was based on a talk I gave at the Vermont Psychiatric Association’s annual meeting. I will be giving it again at the NAMI-VT Annual meeting and next year at the UVM Psychiatry Department Grand Rounds (along with my 2 year outcomes on the tapering protocol).
    Thank you for all of your support and encourgement.
    Sandy

  • Russerford-
    I had a chance to read those links. They are very interesting. It is a funny thing – the dialogue you wish for is really an ongoing internal dialogue I have with myself. Although I write on this website, I do understand the other perspective. As I note above (and I wrote an earlier post on this – https://www.madinamerica.com/2012/05/coercion/), I am part of the system of coercio that so many on this site understandably abore. In reading this, I continue to believe that critics of Whitaker tend to pick up on the edges of his argument (so-called “chemical imbalance”, disability data) and do not address the core question of the long term outcome and it correlation with drug use.
    Anyway, this extended series of blogs, is my personal attempt to recon with this.
    Thanks for reading and sharing this.
    Sandy

  • Hi Donna,
    I have had a different inmpression of the attentiveness to trauma as an etiologic factor in many types of emotional distress. It seems that people are increasingly attuned to the effects of truama on people. However, I do agree that the labeling we use implies that trauma leads to some of types of problem (PTSD type symptoms, anxiety and depression, for example) and that other conditions (mania, inattentiveness, psychosis ) are more “biological” and are not caused by environmental stress. I think this is a false dichotomy. I do not think we really understand much about etiology and these distinctions (which also lead to assumptions about appropriate treatment) can be terribly misleading.
    That is one reason why I think the articles to which I referred are important. It seems that trauma is associated with a wide variety of problems.
    I hope ths helps to clarify my thinking on this.
    Sandy

  • Thanks, Donna.
    We do have peer workers and in the past year we have increased this part of our program. It has bee a great addition on many levels. The peers have done a good job. They have become role models in our community. It has been inspiring to my colleagues and me to see people – some of whom we have known for a long time – take on this role. There is nothing like seeing recovery in action to drive the point home that recovery is possible.
    I hope you saw that the Journal, Early Intervention in Psychiatry, featured an editorial and an article on the relationship between trauma and psychosis. https://www.madinamerica.com/2013/04/early-intervention-in-psychiatry-features-articles-linking-childhood-trauma-and-psychosis/
    I know that you have written eloquently abut the need to recognize this link.
    Sandy

  • Rossa-
    Thanks for your comments. You bring up such an important point about the challenges of helping someone in the midst of an extreme state. We are trying to develop a model first episode program. I am intrigued and excited by Open Dialogue but I also want to be cautious not to reify it prematurely. We need to see how this model can be transalted to other settings. I also continue to be worried about those individuals who want nothing from us. That is stressful to their families when they do not seem to be doing very well and challenging to their communities when their behaviors are disruptive. I do not want to be an apologist for a system that I want to improve but at the same time I do not think we can blame all of this on the drugs we prescribe or our treatments since the individuals I have in mind reject them all before they are even tried.
    Sandy

  • Russerford,
    Thanks for your comments. There are now at least two studies of which I am aware that point to particular risks associated with quetiapine. One of them was mentioned in my last blog which looked at 4 neuroleptics in people over 40. the quetiapine arm had to be stopped early due to high levels of side effects with this drug.
    I do not have an answer for your relative. I struggle with this in my own practice. All I can say is that there are many people who eventually find ways to reduce or minimize the dose. I would look at Will Hall’s Harm Reduction Guide to Reducing Psychiatric Medications (free online). Daniel Mackler just put out a new documentary on this topic which I would recommend.
    I wish you all the best.
    Sandy

  • Scott-
    I share this exact question and it is not one that needs to be posed in the extremes (although I like the thought experiement of thinking about the ideal). Even in an ideal world with limitless resources, I think there will be people who do not want any help or assistance because they do not perceive themselves to have a problem.
    However, I think it remains worthwhile to think about how practice standards can be adjusted in our current system of care. We should not let perfection be the enemy of the good (or something like that).
    Thanks for your comments.
    Sandy

  • Alexa-
    Thanks again for sharing your story. You make an important point about the devaluation of individual experiences. David Healy has written extensively as you probably know about the limitations of limiting our knowledge base to those things that can be derived from randomized controled trials. An experience like yours – trying one thing, taking it away, adding it in again, etc is quite valuable.
    I think we should be studying and learning from people like you rather than dismissing your experiences as anecdotal.
    Congratualtions to you!
    Sandy

  • Thanks, Alexa. I am not familiar with data on the use of anti-epileptcs specifically to prevent relapse. I think the data on their use to augment neuroleptics is fairly weak. As for the supplements, I would say I have some passing knowledge at this time. I have been learning about micronutrients but my education is at a pretty basic stage. I suspect there are others on this site who know more.
    Sandy

  • These comments are of great interest to me.
    Your comment about risk as applied to brain atrophy is well taken.
    Hopefully by the conclusion of this series, a reader would have a good idea of how I use these drugs. I wrote my conlusion in my first post to give readers and idea of where I am going.
    I do prescribe them but I think that the nature of informed consent should include a discussion of the benefits and risks.
    Where you and I may disagree is that I do continue to think there are some benefits. What I have written about before and I continue to observe in my practice is that I do not have good alternatives for some of the inviduals I see. At the same time, I witness these drugs being prescribed at higher doses than may be necessary and in instances where there has not been a clear benefit. I also think there is not enough study on tapering. We (meaning my psychiatric colleagues) tend to employ a “one size fits all” approach to drug discontinuation.
    Sandy

  • Thanks for the link. The author, Shatij Kapur, worked with Phillip Seeman who has been studying this for years and is the source for much of what Bob Whitaker’s reporting in Anatomy. Kapur is also the senior author for the paper I mention above.
    The notion of adaptation makes so much sense given that biological systems tend towards homeostasis. That is why I am pussled that people resist this concept. What puzzles me, however, is that I do not observe many people who need more neuroleptic over time to sustain the same level of “remission”. Now that I look for it, I see it more but there are many others I know who have done fairly well over many years on the same dose. I have worked in the same place for 20 years and I have known a good number of people for that entire time. Believe, me, I am paying attention now.
    There is a risk of applying these basic science studies directly to clinical work given the complexity not only of the brain but of the nature of psychosis which I do not think is a single thing. But it is clear you understand that.
    BTW- this will be featured later in the week-end. There are a number of other excellent posts up right now.

  • Hermes-
    These seem like very important points. As I mention in my blog, I do not consider myself expert enough in neuroscience to fully evaluate the supersensitivity literature but to explain all relapse on this is analogous to explaining all psychosis in terms of abnormalities in the DA receptor system. My main point is that it is not a theory that should be entirely dismissed and it may explain some component of the tendency to relapse particularly within the first 6 – 10 months after stopping these drugs when we know the relapse rate is highest.
    Your final question is critical and I do not have an answer.
    Sandy

  • Hi Seth-
    Thanks for you comments and careful reading. You get no argument from me on the labeling of this class of drugs but old habits die hard.
    You ask, “Why should a drug with such a nefarious history be promoted today by psychiatric reformers?”
    That is the question. Although I would not say I am promoting them, I am just trying to reckon with the various data out there to form my own opinion about when and if these drugs should be used. We may come to different conclusions on this.
    Sandy

  • Hi Donna,
    I am so glad that we have developed a mutual respect and understanding. You are so correct about the challenges of communicating electronically(I think that my comment that seemed so harsh was misunderstood becasue I thought I was just echoing what you had said a while back).
    I have very much appreciated our long extended conversation. It just reminds me of how complex but rich human relations can be!
    Warm regards,
    Sandy

  • I am sorry you find me dismissive. That is not my intent. You have provided an enormous amount of material and I need some time to digest it all. I just do not have more of a response right now. I guess I may be misinformed about proper blogging etiquette but I do not always have the time to read everything and respond in a cogent manner. I am kind of a slow reader and perhpas an even a slower thinker. So this is more about me and my limitations than it is a reflection of any disrespect I have for your ideas.
    The main point I am trying to make is that I do not dimiss the role of trauma in causing serious and significant problems in people’s lives. I do not think that the diagnostic system we currently use is partiuclarly informative. I am not sure what it is I wrote about in this post that led you to those conclusions about me. I respect and appreciate that you are trying to educate me but it will take me some time to read all of this and absorb it and think about it. When I am responding briefly, I am just trying to convey that I have read what you have written. I thought it would be nice for people who take the time to comment to know their comments have been read but perhaps that was an incorrect assumption.
    For now though, I am having trouble defending a position I do not think I have taken.
    Sandy

  • It is a guideline that varies from person to person. It depends in part of what size pills I can get and on the patience of the person with whom I am working. I am also beginning to gather anecdotal evidence that as the dose gets lower, we should go slower so I try to stick wiht 25% of the current dose not the initial dose.

  • To Donna,
    This is a reply to your question about my training in family systems therapy and my understanding of the relationship between traumatic life experiences and human beahvior.
    When I entered psychiatry, it was with the plan to become a psychoanalyst and I have intensive, albeit long ago, training in that field. After that my training was focoused more on traditional psychiatric diagnostic classification, brain models of psychiatric problems, and pharamcotherapy. My exposure to family treatment was in the form of psychoeducation.
    More recently, I have become intereated in family therapy primarily through my training in diaolgic practices and Open Dialogue.
    However, there has been a strong focus in the past 20 + years on trauma and its multifacted and complex impacts on human behavior. I do not consider myself an expert in the treatment of these problems but in the setting in which I work, I have colleagues who are and I try to coordinate care with them. So I guess I consider myself aware of the impacts of trauma on human behavior and development but not an expert clinician.
    I would add that it is not self evident to me that if a person’s problems are caused by trauma, that this means there is no role for the use of drugs treatments. This is something that can be studied and evaluated.
    I hope this at least in part answers your questions about me.
    Sandy

  • Hi Jeremy,
    Thank you so much for reading and commenting. Thank you also for brining attention to Dr. Moncrieff and her work. I have one of her books on my “to read” list and I have read some of her papers. I agree that she derserves credit – along with the whole UK Critical Psychiatry group – for bringing attention and scholoarship to this topic.
    I have also heard that outside of Tornio, psychiatry is practiced in a manner similar to how it is practiced in the US. Do you have any thoughts about why that is the case? I have been curious about this. My speculation – as an outsider – is that it is because there were psychiatrists who were open to what they were trying to do up there and this helped to create a narrative about psychosis that was different from what was being created elsewhere.
    Thanks for reading and sharing your thoughts.
    Sandy

  • Hi Donna,
    Sorry to disappoint you. I have tried to stay, in these blogs, in areas in which I feel I have something to say. I have concerns about the broadening of the diagnosis of Bipolar Disorder and maybe someday, I will address that in a way that is less disappointing for you but for now, you are correct, that I am choosing to not address your concerns in detail.

  • It does appear that in Finland, they are able to use less medications in the context of the other supports they offer. It seems to be largely influenced by a context in which they do not believe drugs are always needed or are the core element of effective treatment.
    I am not sure we know enough about brain waves to translate that information into something that would accurately inform drug choice. But in my personal commitment to not dismiss something about which I know very litte, I will take a look at this.
    Thanks for your comments.
    Sandy

  • I respect your point of view and agree that this is a big problem for which I do not pretend to have the best answers. I support you in your goal. I would love to get some help on developing safe alternatives for people who are in extreme states who are not able to be helped within our current system of care.
    Even in Vermont some of the alternative programs do not accept people who are aggressive. They get sent to the emergency room where I sometime work. They are sent to the jails where I sometimes consult. I would love some help – that goes beyond saying this is a bad thing – to figure out an alternative.

  • Hi Oli-
    Thanks for the comment. This part one of what I anticpate will be a 3 part series. I plan to address the delay in treatment question in more detail as well as the loss of brain tissue. It would have been a very long post so this is my intro and my conclusion. The middle portion is to follow.
    Your point about the added effects of medications used to treat side effects is an important one that I do not address directly. With antipsychotics, if one avoids higher doses, one can avoid some of these side effects. Wiht the neuroleptic threshold study that I cite above, McEvoy established that one does not need to use drugs to treat the neurologic side effects. If someone develops them, then he is on too much drug. This study was done with haloperidol but the principle applies to many of the newer drugs as well.
    People here do not like to talk about dopamine but these drugs block dopamine receptors. If you block ~70% of the receptors, you get as much symptoms reduction as you will get with more blockade. However, with more blockade, you see much more neurologic effects. So just checking – carefully – for neurologic side effects is a pretty easy way to assess whether the person is on too much drug. Before the newer drugs were introduced in the early 1990’s, academic psychiatrists were recommending a conservative approach to pharmacotherapy for psychosis. That message got lost in the hype over the newer drugs which were incorrectly marketed – and this was supported by some of those same academic psychiatrists! – as safer and more effective.
    One crux of my argument is that if one prescribes these drugs, tread lightly.

  • Thanks, Rossa. This is an important perspecitve. I, too, do not think all “relapse” is withdrawal but at the same time I am not going to dismiss other experiences or perspectives just as I hope others will not dismiss yours.
    I would change one thing. You write, these drugs were “invented for a reason, and that reason is to stop psychosis.” This my be minor but these drugs were found serendipitously to be of help in reducing psychotic symptoms. It was only after this discovery that we walked it back to develop a hypothesis to match their effects on people. That hypotheisis – and the hype attached to these drugs – has held us back from exploring other possible explanations. I suspect we agree on this.

  • Thanks. I am using longer intervals (3-6 months). The data from the relapse stuides suggest that recurrence of symptoms after dose reduction can occur many months after the reduction. I worry that if something happens and the person ends up in the hospital, the dose will be increased, often dramatically. If I can establish that someone has done well on, let’s say 50% of the initial dose, but then has a recurrence of symptoms on a lower dose, I will try to put the person back to the 50% dose rather than the intial dose. This is a form of harm reduction.

  • Hi Donna,
    Thanks for your comments. I did purchase Dr. Hyman’s book. I have not read it all yet (I have a large pile of “to be read”, may suggested by people on this website.)
    I think it is very important to pay attention to the foods we eat. In an attempt to practice to some extent what I preach, I recently cut out added sugar from my diet. Although I do not feel too different, I find it very helpful in managing my life long tendency to eat more than my body needs.
    Perhaps I was not clear in this post. When I talk about current practice standards – I am referring to what is the currently accepted practice by psychiatrists. I then go on to challenge that. In future posts, I will present the data in support of my views. I thought I had too much information for one blog. I will try to put this up weekly. I think it will take two more posts.
    Yes, I work in a busy community mental health center and most of the people with whom I meet receive Medicaid and Social Security disability. I have learned of some innovative treatment approaches but they often are very expensive. My personal focus is on helping to improve the care of people whose only option is the community mental health system. This is where most people in the US who have experienced extreme states will be able to get help.
    Regarding the distinction between labels such as Bipolar Disorder and labels such as PTSD, I agree with you that these distinctions are often not very helpful. People who have been traumatized can have a wide vareity of “symptoms” not just the ones found in DSM. In addition, the experience of having an extreme state can be traumatizing so it is very complex.
    But in the spirit of honest discourse, I admit that I still struggle with how to best help someone in an extreme state. Some of the people I see have gotten themselves into trouble when in these states, for instance, loosing a place to live, rupturing important relationships. It is heartbreaking. I still find that some of these drugs when used judiciously can be of benefit and I am still not satisfied that there are always other viable and effective alternatives although I continue to study and to be open to what others have to say.
    We do agree that Marica Angel is brave and honorable! As for me, I am just another human being trying to make it through the next day.
    Sandy

  • You make a good point about the use of the term compliance. This is a talk I will be giving to physicians and I used the term employed in medical settings. I am arguing for a more conservative use of these drugs and the context in which I am using that term is to point out what you are saying – people frequently do not take the drugs physicians prescribe. I will be elaborating on this more in future posts.

  • I just re-read the study. They found that the supplement reduced negative symptoms in the subset of people who had a gene that coded for poorer absorption of folic acid. I do not think they were clincially folate deficient at the outset.
    But I agree with Jill Littrell that it is very hard to do research on something for which there is no money to be made. Folic acid is a cheap generic substance. There may be many other substances that are deficient even in the diets of people who try to eat well given how much big agriculture has led to the depletion of vitamins and minerals in our soils.

  • I am just not hearing about this. I concede that there is a tendency to not see what you do not think you will see and I will look harder but I am not getting many comnplaints about this. Are you shaving pills or compounding? I admit my rate of decrease is heavily influenced by the size of the pills.

  • I would like to see that too. But for now, when I discuss this with people, I think I am obligated to point out that relapse appears to be higher when the drugs are stopped. In my own protocal, the individuals who “relapsed”, appeared to have psychotic symptoms and this happened occured at least a couple of months after the most recent dose reduction. In two cases, it took weeks to see improvement after the drugs were re-started. I do not think I am following closely enough to get the information you would like to see. What do you think the time frame would be for seeing withdrawal symptoms after a reduction of 25% of the dose?

  • Thanks, Jill.
    I am familiar with what Meltzer talked about. The idea is that there is an eventual down regulation of pre-synaptic DA. A recent Archives article (I wil refer to it in another post in this series) talks about the “core” problem being one of elevated pre-synaptic DA release. But we already knew empirically that if these drugs work it is usually over days to weeks not hours to days. The rapid increase in dose is driven by insurance not empiricism.
    Did you see the recent article in the Archives on folic acid and B12? The people who benefitted most had impaired absortion of these nutrients. I have been talking to Bonnie Kaplan, a researcher in Calgary who has worked with a group, Nutratek, which has developed a micronutrient compound that has been shown to be of benefit in a variety of situations including extreme states. I am taking it right now to get a sense of it tolerability. I can get you more information on this if you want.
    One challenge – as you know – is that when we talk about something as complex as psychosis – we are not talking about one thing. There are a multitude of problems – both environmental and internal – that may result in psychosis.

  • Hi Jonah-
    Thanks for your comments. I agree that akathisia is an insidious and horrible side effect of this class of drugs. I also believe it can be missed by the assumption that the experience is due to the condition which the drugs are supposedly treating. I agree that these issues need to taken into account when thinking about forcing these drugs on people but, at least here, I am thinking about when it is OK to suggest them – and what we say when we suggest them – to someone who is willing to try them
    Thank you for these very important comments.
    Sandy

  • Hi Dan,
    Thank you for this post. I was wondering if you could clarify the role of the supporters and others who are involved? Is the hope that if this is done well, the person will not experience the problems, for instance, hearing voices, that led to his starting these medications or is the idea that as these experiences occur, people around will help him to tolerate it better? What is the nature of the pain, that people feel as they come off? When you say it can be hard, could you elaborate?
    I guess I would make it more explicit that a harm reduction approach is the goal so that if one leanrs that one can reduce by 50% but maybe not stop them completely, that is still worthwile.
    Thanks,
    Sandy

  • Anonime-
    To offer another perspective on your conclusion as to whether any condition is a “physiologic disease”, I would argue that Kirsch’s book does not address that. Rather, he addresses the powerful effectso of what we call placebo effect on a wide array of symptoms including what are currently considered psychiatric symptoms but also including conditions that most people would accept as “physiological”.
    While I am not offering this as a defense of the antidepressants, I do think it leads us to think carefully about this placebo effect so that we can utilize it to help people. When people get better due to a placebo effect, it does not mean that they were never suffering (or in pain or nauseated – some other conditions studied) nor that there was no physiologic basis to their complaint, but that they were relieved of their suffering by something that we do not as yet fully understand.
    That, at least, was my understanding of his book.
    Sandy

  • Analogman,
    My Harvard education was over rated although I value some of the life long friends I made while I was there. Mostly, it creates an expectation about me although one of my favorite lines is when someone (who had known for for awhile) said,”You went to Harvard? I didn’t know you were smart!”
    Thank you for your extraordinarily kind and generous comments.
    Sandy

  • I would like to clarify what I belive is an (inadvertent) misconception of this article. I do not want to leave the impression that I have an Open Dialogue program. I am interested in learning about Open Dialogue. I suspect this will take years.
    The program we have – called START – allows us to go to people’s homes at a time of crisis. We try to engage and listen. We try to involve the family and others in the social support system. We include peers who have been wonderful. Some of us are getting training in Open Dialogue but we do not claim to be trained at this time. We do not call our program an Open Dialogue program. I prescribe drugs in a manner that is in my opinion judicious and cautious and with what I consider full informed consent. Given the many side effects associated with most drugs I prescribe, I am understandably curious about any kind of way I can minimize their use.
    I did not seek out this article although I am grateful for the kind way in which my work was portrayed. I appreciate your kind words but I do not want anyone to be misinformed about the work we are trying to do.

  • This are important points and I do not have the answers. Some of the principles of Open Dioalige can be transferred here but it will take some time to understand what adaptations need to be made and in what setting this is most applicable.

  • I appreciate the kind remarks but I want to make a few comments.
    First of all, Open Dialogue – at least as I humbly implement it- is not a miracle cure. It is a very nice way of working with people but it remains hard for families to have someone who is struggling with an extreme state. I do not want anyone to idealize me in any way.
    Along those lines, I feel compelled to say that I know of many other psychiatrists who are kind and spend the time talking and trying to understand the people with whom they work. I consider myself a “critical psychiatrist” – to borrow the term from my British colleagues – and I share many of the views they have articulated. But I know that I work directly with some thoughtful and considerate colleagues and I want to acknowledge that. At the same time, I understand that some people who comment here have had horrific experiences with psychiatrists and I do not want to discount that in any way either.

  • Any condition that is ubiquitous and chronic is targeted by the drug companies. It seems that almost all of my patients are on proton pump inhibitors (prescribed by the PCP). I am all for reducing the pain and suffering from heartburn but is it really that common?
    That stroy of direct to consumer advertsing in the doctor’s office should not surprise me anymore but I admit that it does. Just this week, I got an inquiry from someone in our human resrource department. A very nice nurse came to offer to teach our staff (not medical staff)about helping people stay well after discharge from the hospital. The training was free and she was even going to bring lunch! I read the e-mail and at the very bottom it mentioned she was supported by a pharmaceutical company!!
    There is no free lunch!!

  • Thanks for this post, Jill. It is not a defense of psychiatry to point out that there are problems throughout medicine. I sometimes find, however, that commentators on this site believe that the rest of medicine is immune from the problems of psychiatry.
    We have an expensive health care system but we do not have good outcomes. If we elminated treatments that are in effective and in many cases harmful, we could provide quality care and control costs.

  • Lucy-
    I appreciate your posts and share your critical view of the limitations of the current diagnostic system.
    What your are proposing seems awfully close to psychodynamic formulation. This is how I was trained and was the prevailing approach in American psychiatry up through the 1980’s (and in my experience continues along side DSM labels to this day).
    What I value in Open Dialogue (and I do not want to present myself as an expert, but as a student and observer) is that the explanation arises from the dialogue and is not imposed from the clinician. My experience with dynamic formulation is that is derives from the clinician and there can be as much labeling, albeit of a different nature, as with the categorical labeling of the DSM.
    With some of the people I meet, even stating that one is hearing voices is a form of labeling. What if Jane came to you complaining that her neighbors and people on the street are always critical of her?
    I suppose this is what you mean by your phrase, “It all depends on how you do it”, so perhaps I am anticipating future posts. In that case, I look forward to reading more!
    Thank you for your writing,
    Sandy

  • I do not disagree but people come to my care when they have made their concerns the business of others. For instance, they may insist that others act on their beliefs (telling the neighbors to stop talking out loud about them or insisting the the police investigate the situation and then getting angry when the police are ot able to confirm their story). I have had a number of patients who talk out loud to the voices they hear. They are not a danger to themselves or others but I am asked to intervene because the loud talking – sometimes through the night – is disturbing to others.

  • I do not dispute this and I have at times acted in an investigative manner to the extent that I can. Someimes I just tell people that I am not sure what is going on – many things are beyond me. Sometimes it comes down to an issue of plausability and I try to be honest that this is not the same as proving something to be untrue. I agree that there is often some truth and I would add that it is important to try an understand that grain and acknowledge it.

  • Thank you for your comments. I agree that the differential diagnosis for someone experiencing psychosis or fatigue is broad and should be considered carefully. I am sorry that it took so long for your thyroid condition to be adequately recognized and treated.
    I tried to answer the question you ask in some of my comments above,for instance in response to Belinda and I think also to Kathryn.
    Although I think it is important to look carefully for the cause of the problem, in my own experience at least, we frequently do not find an answer (of course this could be because we re not looking carefully enough so I will look at your links and remind myself to continue to think about broadly.)
    I do not take lightly the statistics about the shortened life expectancy for people who are diagnosed with psychosis. This is a major public health concern.
    Sandy

  • Thanks, Belinda. You make an important point. The benefits of drug treatment have been overstated and the problems and limitations have been downplayed. In that context, it is no wonder that families often push for drug treatment.

  • Thanks for your comments. I have known people who are convinced, for example, that people are talking about them and plotting against them. They see signs of this everywhere and hear people – who no one else can hear – confirming this belief. They are looking for someone else to confirm their experience and when family members can not confirm it (because this is not their reality at the time), they believe thier family members are part of the plot. This can lead to much anger and turmoil in the family.
    I have known others who stop functioning – bathing, working, for example – but do not feel in pain or believe there is a problem. Not infrequently, drug use is involved and the person has no desire to stop using. Their families do not want to leave them in this state but these individuals do not want any help in caring for themselves.
    I am not saying here that there is no way to be of help, I am saying that the path is not always clear and while traveling that path with the family and individual it can be hard and scary. Of course, I would be interested in your and others perspectives on this.

  • Thanks, Belinda. Yours is an important story.
    I am talking about people who do not indentify the problem as a personal one. The typical scenario is where parents are concerned but the person does not believe he has a problem (and it is almost always a he). He may be using drugs, he may be extremely withdrawn, he may be hostile, he may think that there are outside forces conspiring to harm him, he may bring himself to the attention of the larger community by acting in ways that do not make sense to others.
    I like Open Dialogue because it does not require any “buy in” to a notion of mental illness (on anyone’s part) nor does it require any one to be indeitifed as a patient. I am just sharing my early views that this work is hard (at least for me).
    Many people on this site talk about the benefit of the journey through times of extreme distress. I respect that but it is not the same story that the people I work with tell. Watching someone go through that experience without a road map or assurance of outcome can be daunting.

  • Thank you.
    Marcia Angell’s writings on the influence of the pharmaceutical company on the practice of medicine including her book, “The Truth About the Drug Companies” are extremely important. She wrote from a position of enormous power and influence as the (first woman) editor of The New England Journal of Medicine and a faculty member at Harvard Medical School. She is a hero of American medicine.

  • Faith-
    This is a beautiful and articulate essay. It captures so much of the complexity of this discussion which will be ongoing. I appreciate that you do not deny the pain and confusion that families’ may experience while at the same time recognizing that our currently available treatments and constructs for even framing the discussion may not help and may make things worse.
    Thank you,
    Sandy

  • Thanks for your kind comments. I am aware of Leucht’s paper and I find that it is damning with faint praise to say psychiatric medications are as effective as some of these other commonly prescribed drugs. I think you have made this point in your comments that there is over promoting in all branches of medicine. I just do not derive my comfort from the “But they do it too!” argument.
    I do not believe all of these medications are worthless. As I have written in other posts, I still prescribe. I just think that the data base is distorted and if one can generalize, the field has not been forthcoming about this.

  • Dan-
    I think Martin Harrow has identified locus of control as an indicator of who chose to stop drugs in his outcome studies. Have you been in contact with him?
    I am interested in how we help people to find this within themselves- although, as you know, knowing people with lived experience who have recovered is quite powerful.
    Thanks for this post.
    Sandy

  • I am interested in knowing more about what you find shocking and amusing about these studies.
    I remember being surprised at the design of the CATIE study. They were meant to capture an aspect of “real world” practice but they are predicated on the notion that treatment with drugs should be long term to be effective. In that context, the hope is that a drug will be effective and long term maintenance is a good thing. If one does not buy into that premise, then the design makes no sense. These studies have utility because within the context of current accepted practice, they make sense and they can therefore be useful iin influencing accepted practice.
    I like your idea of a Ben & Jerry’s control. On a more serious note, I believe more of these studies need active controls arms – using a drug that psychiatrists do not believe to be effective but that has side effects.
    Thanks for reading and commenting.

  • Hi Jack,
    Thanks for reading and commenting.
    1. 1.8 mg of risperidone is on the low side but this is a drug where the effective dosage range has actually gone down over time. I agree that since the study allowed flexible dosing suggests that this was the dose the the physicians though was optimal.
    2. I agree that a study of outpatients may be less applicable to inpatients. No one study proves anything. We still have the short term, double blind RCT’s which consistently find that these drugs are more effective than placebo. I know you are aware of Leucht’s recent metanalysis which reports that these drugs are as effective as many other drugs used in medicine. Also, since some people were on medications when they entered, perhaps maintaining at the same level was an OK outcome. I would have wanted to see more information on this and I have written to the corresponding author to request this.
    3. I agree that we do not know what happens when the drugs are stopped. I believe it was also Leucht who published a recent meta analysis of the drug discontinuation studies which was consistent with earlier reports that there is a higher rate of relapse when the drugs are stopped vs. when they are continued. However, not everyone relapses when they are stopped and some relapse even when they are continued so it is a minority of people who seem to benefit from continuing. We just do not know who they are.

    We try to balance the results of these studies with our individual experiences with people.

    I am going to be putting together a presentation for the residents on my current thinking on this. I can send you the slides when I have them.
    Sandy

  • I did not think I reported that the people with mood symptoms complained more of side effects. More people who were in those categories choose to taper and appeared to be at greater risk of relapse but the numbers were small and this was a naturalistic chart review so I am hesitant to form too many conclusions at least at this early stage.

  • Thanks for posting. This captures so much of what I think about psychiatry and the limits of the neuroscience approach to our work. It does not say we need to give up on the brain or disavow science but rather that these approaches are limited in fundamental ways. The authors say this better. I am just giving a plug to read it!

  • Thanks for reading, Richard.
    Spinning occurs in all of medicine. David Healy, Marcia Angell and others have articulated this well. This is not at all a defense of the practice but I think it is a mistake to think that the distortions that have occurred in psychiatry have not occurred elsewhere in medicine.
    I do not have a problem with the way way the authors presented the data (with the exception that I would have wanted to see more of the BPRS data). Others may disagree but if we argue over that point (and I do not think you are arguing with me on this), I think we may risk focusing on the major points of this study.
    I just read the Bracken article on the British Journal of Psychiatry (highlighted in the news column on this site). It captured so much of what I think about psychiatry. I wish that sort of debate and discussion were occurring within American Psychiatry.

  • I think there will be a moderation in the way these drugs will be used.
    Many drug companies are getting out of the business of CNS drug development so there will not be as much push from the drug companies. After CATIE, there were many commentaries were published that in my opinion spun the data to moderate the main outcome, that the newer drugs offered little advantage over the older ones.
    The challenge for me is that psychosis – for some individuals – can be so frightening and disruptive. I am studying alternative approaches but I – and I think this is true for my colleagues and family members who believe in the effectiveness of drug treatment – need to be able to observe recovery without drug treatment. This will take some time and – for some of us – a leap of faith.

  • For anyone who has already read this, I want to note that I just made an addition. Where I talk about the BPRS outcome I added the following:
    (Note: they did report baseline BPRS total score. Across all groups the mean (and standard deviation) was 40.1 (10.3). This corresponds to a person who would be considered moderately ill according to at least one report.

    I was curious why they did not report more on the BPRS changes but I missed that they did report on baseline total scores.

  • Although this article promotes the notion that friendship is important it also suggests – based on a longitudinal research study – that one must first adequately treat the depression to allow children to be better able to make friends. Dr. Wagner is a big proponent of the benefits of pharmacotherapy for children.

  • The idea of listening to one’s patients was not radical. At the time, the psychoanalysts and psychotherapists were the old guard.
    1boringold man has written recently about his experiences when psychiatry turned in its current direction: http://1boringoldman.com/index.php/2012/11/12/squishy/
    It is interesting because we are talking about the same era – the early 1980’s shortly after the introduction of the DSM III.
    To be clear and honest, I moved in the same dirction as the rest of my field because I was not impressed by the intellectual rigor of psychoanalysis. Given the shenanigans of the more empircally based members of my profession, that is ironic isn’t it?
    At the same time, these early experiences taught me to question the status quo.
    Thanks for reading and for your comments, Steve.

  • Thank you, Belinda.
    I appreciate your comments and I do not disagree. The main point of the post was not really about treatment but more on what you state in your last paragraph.
    We did not think her treatment would only involve teaching her to use self hypnosis but her ability to experience voices and visions so easily seemed telling.
    This was 30 years ago and our understanding of trauma was different. Bruce Perry was only starting his work.
    This was meant as a bit of history. It may be of less interest to others but I sometimes wonder about my profession – how did we get here from there?
    Mad In America tracked one part of the history of American Psychiatry but there was more to it. This is just one tiny – and perhaps in some ways telling – piece of that story.

  • Thanks, Amanda. Dr. Frankel thought that most people has some capacity for dissociation but some go in and out of these states with more ease. Children can use this to escape painful situations. I appreciate hearing about your experiences.

  • Thanks. A few questions:
    1. Do you hear about withdrawal problems with neuroleptics as well as with SSRI’s?
    2. How do you get such small decreases? Do you crush pills? Shave them?
    I admit that I am focused more on re-emergence of psychosis so maybe I am missing withdrawal and I will try to pay closer attention. Some people report poor sleep but no one has asked to stop tapering because of unpleasant experiences.

  • Thank you for your comment.
    I do not think I was clear in the blog.
    I did not prescribe valproic acid and I agree that “There was no suitable pill for the particular pain of that teenaged girl.” That was what we wrote in our report.
    I was trying to describe a time in American psychiatry when the march towards the kind of polypharmacy we see today began; I was not trying to defend that change.
    Re your assessment that I do not “yet accept the limitations inherent in psychiatry and its conceptual understandings.”
    The reason why I blog here is that I am dismayed by psychiatry and its limitations. However, I understand that for some of the people who are interested in this site – and perhaps this includes you- it is impossible to conceive of continuing to work as a psychiatrist if one truly accepts the limitations of the field.
    But you are not alone in pointing out aspects of my belief system of which I may not be fully aware. I try to remain humble on this topic.

  • Suzanne,
    You are a beautiful writer and a powerful voice for your experience and for your son. I found you through this website and watched your Ted talk. I have been thankfully spared such pain in my personal life but although I am a doctor on this website I am also a mom and I think I understand your words:
    “So much of my identity – the best, noblest, and most fun parts of me – had been wrapped up in being Jake’s mom.”
    I have been close to people who have lost their children or who have feared deeply for thier safety.
    I wanted you to know that your words have touched me. As a psychiatrist, I am not sure if I have much to offer. I have some hope that treating people with kindness and respect and remebering everyone’s basic humanity counts for something.
    Thank you for your words and thanks for the link to learn of Mark Sullivan’s life experience.
    Sandy

  • Norman Marks-
    I have learned so much from everyone on this website. It has deepened my understanding of the nature of the distress people experience. I will confess, however, that it is also good to hear from a colleague. I know that I am not the only psychiatrist who is grappling with these important questions and I hope others notice your voice on this site. Being open here about my views has been one of the most challenging but also rewarding experiences of my career.
    I did not think of Dr. Torrey’s comments as misogynistic, I think he would have applied this to a man as well. I found it to be patronizing but I suspect he would dismiss both men and women who challenge his views. He is anti-intellectual with a veneer of “scientitism”(I do not think that is a word but I mean that he appropriates the language of science without being truly scientific).
    Thank you. And thanks to everyone who has taken the time to read and comment. It is deeply appreciated.
    Sandy

  • Thanks for your comments. It is interesting how many people who percevie themselves to be monists, nevertheless, espouse dualist ideas. Torrey addresses this but not in a way that clearly clarifies how anaosognosia as he defines it is clearly distinct from the concept of denial as he uses it. You articulate this well.
    Sandy

  • Phil,
    You make the important point that one does not abandon modern concepts of neuroscience when one embraces humanism as a “first line” approach to helping people in distress or have different views of our consensual reality.
    Sandy

  • This was a great talk. I was priviledged to be in the audience. I was puzzled by the questioner who alluded to Scientology, “the elephant in the room” was how she put it as I recall, and I thought you handled her remarks with grace.
    Thank you for the work you are doing and for being a role model for someone who stands up for your beliefs while treating others with respect and patience.

  • Thanks. Now I understand what you are saying. I know that typically a 70-80% D2 occupancy is associated with drug efficacy and going above that only increases side effects without enhancing efficacy. You are viewing this from the reverse perspective.
    Thanks for getting back to me on this.

  • Thank you for these comments. I do feel that I need to tell people that by lowering their dose, they are at higher risk of relapse. I feel most cautious when it is my idea and not theirs.
    The challenge is that the risks of remaining on these medications are silent. So the fact that on average, the doses were reduced by 30% should translate into some long term benefits but the absence of a problem (i.e., the failure to develop TD or diabetes) is hard to measure.
    Whereas when someone who has been doing pretty well for awhile ends up in the hospital, that is a dramatic event.

  • No one in the group who did not taper or stop their drug was hospitalized in this first year.
    I had some people come to the poster who were interested and supportive. I now have a collaborator who will track people in different clinic.
    At least one young psychiatrist came by and that was heartening.
    At poster sessions, there is not a lot of traffic.
    There was no one who came by and was hostile to this work.
    Thanks for your comments.

  • I recently attended the Institute of Psychiatric Services meeting and I heard Will Hall speak. He mentioned that he was going to be leaving from this talk to address the Occupy Psychiatry group. He used this as a metaphor for his intent to build bridges.
    On this site, a commentator brought an essay by Thomas Insel to my attention. He is the director of NIMH. In this essay called, “Words Matter” he quoted a former director of NIMH who referred to current DSM diagnoses as “fictive categories”.
    The point I want to make is that it is important to build a bridge from the perspective of many who read and comment here to so-called mainstream psychiatry. In the process of building that bridge, we may need to use some of the language that is used in psychiatry. The use of that language should not be seen as an endorsement of concepts. Even those at the NIMH do not think the concept of diagnoses in the DSM are valid.
    Without these bridges, I fear that the work done here will not have an impact on changing psychiatry. For those whose primary goal is to dismantle or end psychiatry, perhaps this is not important. But to change or influence psychiatry, one needs to use and study their concepts. Martin Harrow’s data is a crucial piece of why so many of us no longer believe that the construct “schizophrenia” is valid.
    Gina- thanks for posting. I am looking forward to following the results of this important work.

  • Thank you, David. You bring up the very important point that we need to offer people alternative ways to cope with or understand their experiences. I try to do this but to be honest, I do not think this is something I do well. I mostly try to connect them with others who I think can help them. For instance, we have a new Hearing Voices group in town. I also know and collaborate with some very good therapists. Many of the people I know have come to figure this out from their own. I worry that I am often only giving people an intellectual reframing, i.e., telling them that they may be able to understand their voices rather than guiding them to this understanding.
    I appreciate your comments.

  • When I say it is a process, what I mean is that telling a person all of the risks one time is not sufficient. That conversation needs to be repeated multiple times. It is hard to absorb everything.
    I agree that what one doctor considers full informed consent may be be the same as what another doctor considers informed consent. This is what so many commentators on this sight are upset about and I understand.
    I know that I have incorporated all of the information included in Anatomy of an Epidemic (brain atrophy, worse outcomes) and I try to convey my uncertainty as well (there are things about these drugs that we do not understand).
    I do believe that quetiapine has been prescribed widely and for unclear indications. It was considered a “safe” alternative to benzodiazepines by many physicians. As you well know, it is not a benign drug.

  • Ed,
    Thanks for this. My guess is that even with enzyme testing, we would still need to be somewhat empiric about this. I am familiar with data on receptor occupancy but not with the notion of the “cliffs”. If you can pst this, I would appreciate this.Some colleagues have shared thier observations that people get into difficulties going from very low doses to no drug so I plan to be more cautious as the doses get very low.
    I think the idea of crowdfunding is interesting. Perhaps, Corrina West could help us with that. My posting her is in the spirit of open sharing of information (while keeping the information ‘scrubbed” so no one can be personally identified).

  • 1. I was following a total of 54 individuals: 28 slowly tapered theri doses, 7 stopped abruptly, and 19 did not want to reduce their dose.
    2. I explained to people that I was not sure how they would feel. I explained that for many reasons, I thought it was important to try and insure that they were on a little drug as possible. I did explain that the risk of relpase was higher when we reduced the dose and I encrouged people to call me ASAP if they felt any different.
    3. I am not sure everyone can stop these drugs completely but my hope is to try and insure that people are on the lowest dose possible. If one considers long term risks, dose is important so if I can help someone to reduce her dose by 50% I will have made an impact on the long term risks to whihc she is exposed.

  • Thanks for this comment. I will go back and look at the 28 who tapered. Some have decided to stop tapering or have gone back the thier original dose. I want to look at the break down. I will post this. I have also heard from others that some people have trouble when they get down to the very end.

  • Thanks for these comments, Corrina.
    1. The taper was slow bases on my recommendation to go slow. Also, some of my patients elected to stop the taper so this impacts the average.
    2. I am going to update the blog. There were no hospitalizations in the group who did not taper.
    3. That is an interesting point. To be clear , I do not have evidence that any group did ” better”. I am not sure how to capture that. It is easier to track hospitalization. If you have ideas, let me know.
    4. This was a death due to natural causes and I can say it was a premature death.
    5. I have learned how reluctant so many of my patients are to reduce the doses. Many of them are frightened of experiencing distress again. Part of what makes this process difficult is that I have no way of knowing who will and will not do well.
    6. I will contact you. This project is my small contribution to this.
    Sandy

  • Thanks, Richard.
    I do not disagree about the stresses in community mental health where I also work. Although I am so skeptical of the effiacy of drug treatment, my greatest work stress is that I can not hire doctors to work and we have so many people coming to us on complicated polypharmacy. We want to help sort this out for them.
    There is a conundrum. Since doctors are so expensive, they end up only doing what they and no one else can do – prescribe medications.
    When that is what you do all of the time, you tend to believe/overvalue its efficacy.
    This happens in other parts of medicine; surgeons tend to favor surgical treatments and internists prefer medical treatments for the same conditions.
    For those who believe there is no role at all for any drug treatment for any mental distress, the solution is clear – eliminate doctors.
    For those who believe that there may be a very limited role for drug treatment (what I currently believe),it may be hard to sustain this cognitive stance, since those who prescribe drugs will have a tendency over time to overvalue what they are doing.
    Sandy