Showing 100 of 835 comments.
It did end in tears.
This may have been published February 8, 2020. Europeans often write the date in the day/month/year form.
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.
Thank you, Rosalee!
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.
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.
My major points are
1. Haloperidol used in the lowest dose possible – a dose that does not cause neurological effects – and used for the shortest duration possible may be the safest approach.
2. The long acting drugs are being promoted because the newer ones are on patent.
I do agree that much harm can be mitigated by trying to use the lowest amount of drug possible – with both dose and length of exposure.
Thank you for sharing your reflections – and your pain. I do agree that the field would benefit fro. Some sort of truth and reconciliation, an acknowledgement of past errors.
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!
This is a beautiful essay. I appreciate your honesty and humility. Ordering your book now.
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 think that those of you who have supported family members through difficult times have much to offer and could certainly be trained in this way of working.
There are implementation projects that welcome people whose expertise lies in their experience of having experienced extreme or altered states. One of our leaders was trained as a peer in the Parachite project.
Very clear. Thanks, Sera.
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.
Thanks for the comment but I am not sure we disagree. I have been asking those questions,
I am curious what the MIA editorial staff mean by “real”? This seems like a reification of an illness model- or at least heading towards that slippery slope.
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 not objecting to the issue that cannabis use can impact psychosis. I was responding to the critique of my failure to address that in my post. This was not the focus of the particular paper and, therefore, it was not a focus of this particular blog.
Thank you for the reference!
Could you please share a reference to that study? While I am not pro-cannabis (I do have questions about how effective prohibition policies are, who they help, and who they hurt), my clinical experience is that cannabis seems to have variable impacts on people who experience psychosis. In fact, it is the variability that can make it hard to convince people there are harms.
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.
The neuroleptic drugs can cause different types movements. Some will resolve whenthe drugs are stopped. I wish you the best.
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
I have heard about these laws. it is very different where I work. I have some friends in Vancouver who are wonderful. One often comments here. I could try to connect yor if you would like to have some allies. Email me if you want.
I sometimes think we need a truth and reconciliation commission.
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).
Thank you for sharing this excellent literature review. I am familiar with most but not all of these studies. I do not have much to add.
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.
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.
It is related to tetragbenazine. The medical center here was doing a trial of another related compound.mthere was a “tweak” to the molecule which they claimed reduced side effects but that one is not yet on the market.
Ingreeza is being heavily marketed right now.
Thanks for posting, Sascha. I also thought this was an important movie. You capture so well many questions I wish we were collectively asking.
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.
They were explicit about only looking at psychosis but then they make not note of this as a limitation in interpreting thier study.
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.
As I count it, five of the eight authors have active ties. The senior author, Jeffrey Lieberman has no ties but has spent a career doing psychopharmacology research and has had ties in the past.
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.
Thank you for everything you are doing to help so many! And thank you for your friendship and support.
Thank you, David! Corrections have been made.
Thank you all for such lovely comments!
Thank you brilliant IT guru!
My error. There were a number of errors I needed to correct. My finger slipped. The comments were so lovely.
Sorry Emmeline and all. I hope your tech guy can fix it.
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.
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,
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.
The authors would not disagree with your first point. That is the essence of their final recommendations. It is also, however. What infuriates me about Organizations such as Treatment Advocacy Center who seem to overstate their position for political purposes.
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.
Thanks for your comments. I am still reading and listening.
I am sorry for now you have suffered. I wish you the best. Thanks for reading and commenting.
There is a major discussion going on in other fields about the failure to replicate studies. This has gotten much attention In psychology.
There is now a major effort under way in cancer research.
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.
I dedicated this blog to Mickey Nardo. There is a link to his blog. He has done remarkable work in dissecting studies and exposing corruption. It is an amazing and important resource.
I think I get it. I have changed my word use after considering comments. I use “drug” instead of “medication” because of comments on my blogs. Nit pick away!
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.
I would agree that Sir Murray still holds on to a fundamental notion that neuroscience will lead the way to a deeper understanding of this kinds of experiences. I am less sure of that.
Fair point. Thanks.
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.
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.
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.
This suggests that risk of violence is dose related. What is the data to support this? This seems potentially helpful for reducing risk of QT prolongation which is a dose related phenomena.
Cnsidering commercial interests involved, I would like see disclosures regarding this author. In addition to fees for court testimony, any consulting relationships with the companies doing this testing? Given Whitaker’s writing on COI, these disclosures (presence of absence of them), would be helpful.
Thank you, Ron, for sharing this fascinating story!
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.
It should have been corrected. Thanks.
We do not disagree about this. If you figure out better language for this, let me know!
Thanks on all counts, BPD!
I just edited that comment to try to clarify what I was trying to say.
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.
Care to elaborate (and I see another editing error here but I doubt that is what you are referencing)?
And I appreciate what you are saying! Even “recovery” is defined more in my terms. I think this is what my friend was pointing out with the term “peer.”
Thanks, J, for your kind comments.
This is to Bradford.
Thanks for those comments. I appreciate it.
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.
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.
He is not a physician. His worry about opiates – which I happen to share – is that there is a lot of diversion which has fueled a serious opiate addiction epidemic.
Russeford may reply but I think this comment was based on history and the topic. Russerford had not read the comments yet. I agree with your assessment and I appreciate the thoughtful discussion.
Thanks,Johanna- right back at you!
Rossa, Your message, and perspective is invaluable. I look forward to reading the book!
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).
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.
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, Erin. These are valuable contributions to this discussion.
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. I have appreciated your own honesty in this forum and a willingness to speak to some very difficult topics.
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.
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.