Sunday, May 20, 2018

Comments by Robert Whitaker

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  • Thank you all for these comments.

    Peter, much of this research is dismissed by defenders of the usual practices by arguing there must be a difference between those who take antidepressants and those who do not in these “naturalistic studies.” In the Canadian disability study, for example, the researchers hypothesized that those who decided not to take antidepressants had a greater inner resilience. In the six-year NIMH study, while I don’t think there was any difference in baseline symptoms, once again there was some thought that those who eschewed antidpressants were more self-reliant, etc.

    The WHO study is different, however. The way this study was done was this: WHO researchers screened people coming into GP offices for treatment of some kind (physical ailments, etc.), and identified those who were depressed (and with baseline scores, etc.) But they didn’t say anything to the GPs, and hypothesized tht if the GPS identified the depressed patients and treated them, they would do better than the patients who were depressed but that the GPS failed to diagnose.

    The hypothesis didn’t pan out. Diagnosis plus treatment led to the worst result. But the researchers did have baseline scores for everyone, and as you can see in the graphic above, Medicated Patients Stop Getting Better After Three Months, their baseline scores were virtually the same. But what is so notable is the difference in trajectories following three months. You know how some patients complain about Prozac poop out, meaning the drug stops working? This graphic shows that.

    But beyond that, naturalistic studies always have this problem of possible differences in initial severity, or difference in personality types. But still they provide an important additional body of evidence to consider, and thus are part of the research evidence that needs to be reviewed.

  • This is in response to the issue of the “elephant in the room,” which a number of comments have referred to.

    We at MIA aren’t going to refrain from writing about a program that is based on a totally different paradigm of care than the usual biological model because of larger political questions related to that country, regardless of how one might think about those politics. That’s not our thing, national politics, and the question is whether this Soteria model, being implemented as a possible first-line therapy, is inspiring as a model for change. I think it clearly is.

    I should note too that Israel is a diverse country in the politics of its citizens, much as the United States is a diverse country in the politics of its citizens. The idea of condemning the people creating Soteria because of the politics of the country might also be seen as a glass-house type thing: I am sure there are plenty of readers who would criticize much of the United States’ foreign policy. But would we then not write about a Soteria effort in the United States because of criticism of its national politics?

    The point I am trying to make is this: MIA doesn’t want to get involved in left-right politics in the U.S., regardless of our private feelings, and we are applying that same standard to other countries. Naitonal politics is not our thing.

    And here is what I experienced in Israel: thoughtful people (with many different political ideas, by the way, about their own country), trying to create a humane type of care, which minimizes use of psychiatric drugs, which is precisely a model that I wish we would adopt in the United States.

    In the world of mental health, that is an initiative that I found inspiring, and solidly within the mission of MIA to write of hopeful alternatives in the U.S. and other countries.

    And so, if there are criticisms of me personally, i have asked Emily to leave those up, or put them back up. But I don’t think going back and forth about national politics in Israel is helpful to the discussion at hand here, which is the creating of a Soteria movement in another country.

  • I appreciate all the comments here. In response to streetphotobeing, on how one needs personal experience of antipsychotics and forced treatment etc. ito really understand what that is like, I of course agree. I would never think that I would know what that is truly like; all I can do is try to record,in this instance of Soteria, what it was like for the residents there. That’s what I tried to do here, and in large part by letting the residents speak for themselves.

    In response to Lawrence, and your statement that psychiatry’s aim is not to get people better, this leads to truly one of the strangest aspects of modern psychiatry. As is well known, once psychiatry adopted its disease model with the publication of DSM III, it began promoting the idea that people diagnosed with a “serious” disorder had a chronic illness, and thus the best that could be expected was that the disease could be “managed,” with the drugs like insulin for diabetes. And then if someone recovered completely off meds, the profession would say that person never really had the disease.

    In other words, the profession conceptualized mental disorders as chronic, and sure enough, with that conception in place and with their regular use of psychiatric drugs, the disorders now run a much more chronic course, and “recovery rates” for schizophrenia are now worse than ever. I would think than a medical discipline would be appalled by the declining recovery rates, but for some reason, psychiatry–as a guild–doesn’t seem particularly bothered by it at all. Perhaps you can write about why that is so in one of your coming blogs.

  • Thanks Richard. I appreciate the comments. In response to your questions:

    1) That this would become a centerpiece of Israel psychiatry: Well, imagine if you have a network of stabilizing houses or Soteria houses that serve as a first-line treatment for people who otherwise would be hospitalized, and if–as is the case with the Soteria houses I visited–people were not regularly put on psychiatric drugs, or could taper from drugs they were on. I think if that became the regular form of treatment, replacing the usual hospital care, that would become the centerpiece of any country’s psychiatry, compared to today. Imagine if something like that happened in the U.S. You would have thousands of such homes, and the use of drugs would be totally different. Wouldn’t you call that a paradigms shift, and worthy of describing as a centerpiece of a changed psychiatry?

    2) Placebo effect: I think what Pesach Lichtenberg is referring to here, and I probably should have made this clearer, is that if you give a person something that gives them reason to believe they will get better, that belief can have a therapeutic impact. And so that is part of what is happening here: in the house, there is an atmosphere that gives the resident “reason” to believe that he or she can get better. It’s an expansive use of the idea of a placebo, which usually is related to taking a pill, but that is what Pesach Lichtenberg is thinking here, I believe. But of course so much else is happening in the house too, beyond giving people a reason to think they can get better.

    3) Now as to the use of language (medications, psychiatric drugs). I am of course aware that “medication” has a different connotation than “psychiatric drug.” So why use medication at all, or use the words interchangeably? The reason is that part of this story is a rethinking, by some of those who prescribe these drugs, of what they consider “medication.” The residents also may refer to them as “medications,” even if the “medications” make them feel worse. So, in a story like this, where you are reporting on a form of care that involves questioning the drugs, then I think it is important to use language that reflects how the people in the story talk about the drugs. It helps bring the reader into the context of language that exists in Israel, and among the people in the story, at this time.

    I hope that makes sense. A report of this sort should, in my opinion, reflect the context of language by the people in the story, and not the language that I might otherwise use.

  • Sparkytus:

    The NNT is used to assess the benefit/risk equation of a treatment. In this instance, 59% of the group are non-responders, and thus they have been exposed to the adverse effects of neuroleptics without any benefit. They are thus among the harm group. As you write: “If I give 100 patients antipsychotics and 41 respond then, as you say, 59 are now at risk of adverse effects for no discernible gain.

    But you also have to add in to this harmed group those who would have responded without access to drugs (percentage of placebo responders.) They are also in the harmed group because they are now exposed UNNECESSARILY to the adverse effects of the drugs.

    So total harmed group is 59% plus 24%, or 83%.

    Another way to conceptualize the NNT numbers would be this. Imagine 80% of all patients with a certain disease respond to the treatment. This is a very effective treatment, right? Well, if 80% of all such patients also respond to placebo, then you have a treatment that produces no additional gain in response rates, yet all patients are exposed to the adverse effects of the treatment. Under NNT calculations, 100% of the patients would be seen as harmed. The 80% who would have responded to placebo, and the 20% of non-responders–all patients have been unnecessarily exposed to the adverse effects of the treatment, given that the response rate between treatment and placebo is the same.

    I hope this makes sense,

    Bob

  • Bonnie,

    There are several reasons for my adopting a “critical psychiatry” stance rather than an “antipsychiatry stance.”

    One, the very term “antipsychiatry” calls up an ideological opposition to psychiatry. I never had such an opposition. My whole thinking on this subject developed out of a simple desire to see if psychiatry and its treatments were “working” for people, and also if psychiatry was telling an honest story about its treatments. In other words, a critical–in the meaning of taking a close look at psychiatry’s story–examination of the evidence. I still feel that way about the subject; it is what is inside me.

    Second, I think psychiatry uses the term “antipsychiatry” to its advantage. It says to the public, there is an “ideological” group opposed to psychiatry, and so it can now present itself to the public as the “scientific” group, battling an “anti” group that is non-scientific.

    Third, a critical psychiatry perspective keeps the spotlight on psychiatry’s behavior and treatments: Has it validated the disorders? Do its drug treatments improve lives over the long term? Does it conduct honest trials of its treatments? Is it an honest in its presentations to the public?

    And that’s where I think the public focus needs to be. If the public takes a “critical” look at psychiatry, what will it find? In contrast, psychiatry uses the “antipsychiatry” label to dismiss criticisms as coming from a group with an unscientific antipathy toward the field. From the public’s point of view, psychiatry continues to wear the cloak of science in such debates.

  • Thank you Phil for the kind words, and for another keenly argued post.

    There was a time that I rather naively hoped that psychiatry could reform itself. The hope arose from seeing other areas of medicine change their ways when studies showed what they were doing was harmful or of no benefit (although of course all of medicine can be resistant to changing practices; they are happy to say they are practicing “evidence-based” medicine when the evidence fits with what they are already doing.) And so I “hoped” (as opposed to believed) that the psychiatric profession, when confronted with evidence from its own research, that its drugs were doing more harm than good over the long-term, could be the spur for wholesale reform. After all, how could a medical profession insist on treatments that were worsening long-term outcomes? The profession also had to confront the fact that its chemical imbalance story had never panned out, and that decades of research had failed to validate any of its disorders as discrete diseases. But I no longer believe that psychiatry will reform itself and change its ways. As an institution, the profession has its belief system, and as you say, psychiatry’s current societal legitimacy–and its own self-perceived legitimacy–is wed to the disease model it has promoted, and if that model falls, then why do we need “medical doctors” residing over this domain of our live?

    But I do believe that a “critical psychiatry” perspective–which on its surface does suggest the hope that psychiatry can reform itself– helps promote, to the general public, an understanding that will lead more and more people to reject psychiatry as it exists today. It is a perspective that reveals that psychiatry has sold us a false narrative ever since it adopted its “everything is a disease” model with DSM III, and that the published articles in psychiatry said to support that disease model–such as Goff’s article, the recent article claiming that youth diagnosed with ADHD have smaller brains than normal–never hold up under close review. You and I had the same immediate response to the Goff article; we knew it would be filled with spin and biased reporting of the available data re long-term outcomes.

    Moreover, for me, I think a critical psychiatry perspective makes it harder for the defenders of psychiatry to brush aside such “deconstructions” of its science with the public claim that this comes from people with an animus toward psychiatry. Lieberman still makes such a claim, but he is such a ridiculous person, and so I think that in terms of generating public understanding of the problems with psychiatry, it is a useful perspective. It says to the public, can we please just look at the facts.

    And thus the hope I now have: that an ever-growing percentage of the American population will come to see psychiatry and its disease model as discredited, and simply turn elsewhere for leadership in this realm. And as you note, this is indeed happening, both in the U.S. and abroad. The recent United Nations Report by Danius Puras is an example of this growing societal rejection of modern psychiatry and its disease model, and I see it too in the affiliate Mad in America sites that are forming: Mad in America Hispano-hablante, Mad in Brasil, a Mad in Finland that is now being put together, and a possible Mad in Asia.

  • Kindred Spirit, you bring up a really important point.. There are no studies that I know of on the long-term effects of antipsychotics when they are used for other purposes, bipolar, autism, and so forth. They get tested in the most haphazard way, over the short term and often as an “adjunct” therapy, and even in the short term adjunct trials, they don’t provide much of a “benefit” in terms of symptomatology. If I remember correctly, when they tested one of the atypicals for “autism,” they concluded it doesn’t cause much akathisia in this youth, although there was a note that the autistic youth had to “self-report” they were feeling anxious, rather than have doctors look for it. But really, all this use of antipsychotics for other purposes is really just the result of a marketing campaign, and made possible because antidepressants may not really work for many people, the “mood stabilizing” agents for bipolar aren’t effective for so many, and so forth.

    I hae a hard time imagining that long-term use of antipsychotics is good for youth diagnosed with autism. But it’s easy for me to imagine that it does a great deal of harm for youth so diagnosed and so treated.

  • Randal,

    They do discuss the Wunderink study, in a section on tapering/discontinuation. They discuss it regarding whether there is a subset of people who can do okay when tapered down to a low dose/no dose, and incorporate the Wunderink study into a conclusion that: A subgroup of patients, which may be as large as 20%, may maintain remission or partial remission for extended periods off medication.

    So they are not presenting it as a referendum on the long-term merits of antipsychotics in general, but whether a percentage of patients can get down to a low dose. While there is a tone in Lieberman’s article of dismissing this as significant, they present this data correctly.

    However, in terms of looking at Wunderink as providing information regarding the long-term effects of antipsychotics, you need to analyze the study in a different way, which I did in The Case against Antipsychotics, and thus, since they cited that article as raising concerns about the long-term merits of antipsychotics, they were aware of.

    The group randomized to the tapering arm, were more likely to be off the drugs long-term, or down to a very low dose. But after that initial tapering moment, it became a naturalistic study, with people in the drug-maintained group free to go off. And so what you want to do is analyze long-term outcomes for all patients according to medication usage, and if you do that, you find that the low-dose, off medication had much better outcomes on all domains that were measured.

    When analyzed in that way, as a naturalistic study following an initial moment of tapering, it provides yet another longitudinal finding that tells of medicated patients doing worse than those off antipsychotics (or down to a very low dose.) But LIeberman and colleagues don’t mention that data at all, and so once again, they avoiding presenting longitudinal data that supports the conclusion that antipsychotics worsen long-term outcomes.

    I chose not to discuss this in this article just for space purposes, as the article was already so long, and this one needed extra space to show why they treated Wunderink in the way they did.

  • Thanks for all the comments. A few notes:

    Matt, I had thought about making a photo of Jeffrey Lieberman the featured image, but then I found this one, of a psychiatrist in a white coat presenting a power point, as representative of the power dynamic in society, just as several of you have noted. This exemplifies the source of the information.

    Sylvain, your point about the makeup of patients in state hospitals prior to the 1950s is extremely important–a high percentage had known physical diseases. Syphilis, dementia, malnutrition, and lead poisoning, for instance. (David Healy has a fascinating presentation on how certain types of “madness” disappeared in lockstep with society converting to lead-free gasoline.) The mental hospitals were serving, in large part, as nursing homes for such patients, until they died. The reason for the patient population starting to decline after 1955 was really social policy. The states set this up a goal, particularly with first-episode patients. And then the real emptying of the mental hospitals began after Medicare is set up, and states could discharge their “chronic” patients to nursing homes, group homes, etc., and have the federal government pick up the cost. So the locus of “institutionalizing” such patients changed from the mental hospital to community sites, or other types of institutions. You’re right that this change in patient census has little to do with the introduction of neuroleptics.

    Samruck, this is the ultimate question: how do we change the public’s willing acceptance of psychiatry’s disease model narrative. It is a narrative that many in society are eager to adopt and accept . . . it fits the magic-bullet belief. And all I can say is that if people in the public can learn about the critique there is to be made about psychiatry, and how the conventional narrative is better described as a marketing story than a scientific one, then there is the hope of changing that narrative. When people learn about the collapse of the chemical imbalance story they often stop and think, what? Then why were we told this.

    Steve, regarding psychiatry “”adopting” the disease model with the publication of DSM–III, or “doubling-down” on it, I get your point.. But with Freudian theory, there was also the thought that some psychoses fit into the framework of a failure to adjust, as opposed to being a pathology. So there was a disease model element in DSM I and DSM II, but it mixed with the Freudian model too.

    I appreciate all the comments.

  • I am just going to try to respond generally to this discussion, criticism, and what it says about MIA.

    First of, if you just read this list of comments, you will see that MIA allows for a vigorous discussion, including sharp criticism of MIA (and even disdain toward MIA.)

    Second, as Emmeline noted, nearly all of the bloggers are saying fine to keeping the comments turned on. And by having this option, this provides an understanding between us and the bloggers: we are not moderating critical comments, but only comments that run afoul of our general policy for maintaining what we would like to be a civil discussion. As such, I think the opt/in or out policy may help strengthen the site and the participation of commenters, because there is an understanding now by writers: there may be critical responses to an article.

    Thus, we are hardly engaged in creating a “safe zone that shuts down speech” or discussion. We are in essence doing the opposite: we are saying to writers, this can be a contentious place, but while we do try to keep the discussion civil, you have to be prepared to have your ideas and thoughts challenged.

    As for those few who may choose to turn off the comments, well here is the point: They weren’t going to continue blogging as is, and yet we think they have opinions worth hearing.

    For MIA as an organization, the “comments” section is both a blessing and a curse: The blessing it that there is often so much to be learned from the comments, and the discussions so often are quite thought provoking. So many of the comments are informed by knowledge of the scientific literature and by personal experience of many types–lived experience, professional experience, and so forth. The curse is that trying to keep the discussion “civil”, and thus to set some standard for moderating comments, is a near impossible task. It wears out our moderators and is a drain on our very limited financial resources, and it exposes MIA to criticism from all sides, including those who are eager to dismiss MIA and attack it.

    I don’t know how to ease the curse part of it, while keeping the blessing part. The opt-in, opt-out policy is an attempt at doing so, and we’ll see how it goes.

  • As I have been traveling, I just came onto this conversation. I have to say it leaves me feeling disheartened.

    MIA’s mission is simple: We believe the current paradigm of care is harmful (and based on a “narrative of science” that is belied by the science,) and needs to be rethought. We believe that this “rethinking” should involve people with different experiences and different ideas: people with lived experience, professionals, family members, philosophers, social workers and so forth. It really is meant to be a forum for expressing diverse opinions, with the only unifying thought that the current paradigm needs to be rethought.

    Given this mission, we can be a place where people write about the goal of “abolishing psychiatry.” At the same time, we can have people write about how to “reform” psychiatry. And we can have discussions about how to think about “psychosis,” “diagnosis”” and so forth, and MIA’s position is meant to be this: WE DON’T HAVE THE ANSWERS. We only know that the current biological narrative that governs societal thinking about psychiatry and its treatments is a false one, and thus needs to be rethought. And that rethinking happens when a diversity of voices can be listened to and respected, even when the views may be different than one’s own.

    But we are struggling in this mission for the very reason that is articulated here: there are many, many people who have quit blogging on MIA, including people with lived experience and including people who come from a psychiatric survivor perspective, because they think the comments turn hostile too quickly (and personally so.) And our ability to moderate comments is an impossible task: it is so hard to say where to draw a line that tries to protect civil discourse and disagreement, without being seen as censoring comments.

    Our inability to manage this, to create an environment that promotes comments (which can be so important), and yet allows for writers to voice different opinions without feeling that it takes a “thick skin” to write on MIA, leaves me feeling disheartened, and feeling like we have failed. And I also believe this, unless we can be a forum for a diverse group of voices, then MIA will fail in its mission to help foster a new narrative about “mental health.”

    Allowing writers to turn off comments is an imperfect solution. I don’t like it. But if we are going to try to have a diverse group of writers here, it seems like a necessary step.

  • Dear Sanneman, Indeed your thoughts have helped sharpen my thoughts, and I think this is really what needs to happen, that there should a public response, composed of many voices, related to this study. The discussion helps point out for all the many flaws of this study, and how it misleads the public (and many within the psychiatric community, who would see it as validating their belief that ADHD is a biological brain disorder.) Thank you for contributing to that discussion here.

  • I appreciate all of this feedback, and that people are signing the petition. In response to sanneman, I am glad to hear that you and several scientists have written a letter to Lancet Psychiatry. As for the fact that “smaller” doesn’t necessarily implicate dysfunction, I of course agree. But I have to confess that of the two of us (Michael Corrigan and me), I was the one who argued against including that point, for I thought it would somehow be seen as a concession that this study showed that “smaller” brain size and altered structures were indeed common to those diagnosed with ADHD. It raised this response to the study: Even if the ADHD cohort had slight smaller brains, so what? What does that mean? A valid point, but I thought we should stay focused on the fact that the data didn’t show that smaller brain size is a distinguishing feature of ADHD (and thus didn’t raise the question of what might be the implications of having a “smaller brain.”) We also thought that the IQ data argued persuasively against any finding that the brain scans showed some sort of dysfunction. But others who have signed the petition have also made note of the “smaller doesn’t equal dysfunction” point and so this is a mea culpa on my part, for leaving that out. As for the confounding results from individual sites, we thought this was evidence that once again argued against their claim that individuals with ADHD have smaller brains, and thus provided yet another reason to see that their bottom line claims didn’t hold up.

    Again, I am very glad to hear that you have written a letter to Lancet Psychiatry that will be published.

  • Thank you for all the comments and support.

    The redesign of the website is not complete, and so we appreciate all the comments here on how to improve it, such as archiving all of the comments from one individual.

    As far as being a forum for the voice of those with lived experience, that has always been a priority of ours, and we have had an editor, Emmeline, who has been devoted to bringing these stories to MIA in a way that gives them both power and clarity.

    Thanks again for all the support.

  • Just a couple of notes. Oldhead, I was not commenting on whether Trump’s pre-elective behavior would justify a Nazi analogy. My point here, in this context of this discussion, was that Trump’s pre-elective behavior was welcomed and celebrated by White Supremacist groups; and that, in terms of how such groups treat civil liberties, we do have a historical reference. And so there is reason to think that if such sentiments are present in this election process, there can be reason to worry about the effect that this will have on civil liberties of those who have been hospitalized for a psychiatric reason, etc. And of course, with the expansion of outpatient commitment laws, the societal sentiment that it is okay to infringe on the civil liberties of people designated as “mentally ill” is already growing, and one can worry now about whether this election will further fuel this sentiment.

    As for Democratic/Republican arguments, that is not the context for this discussion. If Hilary had won, we would welcome blogs on how that might impact societal policies for those deemed “mentally ill,” and it is of course true that Democrats have supported expanded screening programs, the Murphy bill, etc, which are presented as “helping” people get treatment, and have been criticized here. So what we are interested in here is exploring societal behaviors/beliefs/policies that impact on this world of psychiatric systems in this country.

  • As the founder of this website, I think I can say we have deliberately tried to be both non-political on general societal issues, but, at the same time, we do have obvious engagement in political issues related to this world of psychiatry. For instance, we obviously have given a lot of airtime to people arguing against forced treatment, and I even wrote such a blog against forced treatment. That is a political blog. MIA has given a lot of of airtime to people arguing against the Murphy Bill too, and so forth.

    And here, Noel’s blog is asking a “mental health” related question: In this post-Trump world, which is an accurate description of what awaits us, given that he is now the president elect, how does this reflect on societal understandings of sanity? I find this to be a good question. Regardless of how people voted or why, Trump, in his behaviors and comments, did put forth values of a very particular sort, related to immigrants, the treatment of women, the value of journalism in a society, etc. He spoke to crowds that cheered for Hilary to be locked up, which he is still willing to consider, for crowds to cheer Trump that Bitch, and for crowds that loudly booed journalists. He spoke about not accepting the election if he were to lose, and said it was rigged . . . if he lost. These are new norms that have now been accepted as permissable in a presidential election. Some readers of MIA may find these behaviors in a president acceptable, and others that may not. But they are new.

    I should note too that these post-Trump norms go against the larger ethical context of MIA, which emphasizes embracing diversity, respect for all people regardless of their gender, sexual preference, race, etc. There is a political sense to this website that oppression of people, the traumatizing of people, and making people afraid are societal wrongs that need to be fought against. This site has also published articles about the relationship between sexual assault and subsequent diagnosis of psychiatric disorders. And in the struggle against forced treatment and loss of civil liberties, any presidential election that elects a president who does stir such sentiments, so much so that we do have NEO-NAZI groups celebrating his election, then you have to wonder how this would affect those who get labeled “insane” in society. We all know that history; psychiatric patients were the first to be targeted for forced sterilization in Nazi Germany, and the first to be killed in mass.

    So there is a new normal in our society, regarding behavior that is seen as acceptable in our politics. At first, when I read Noel’s post, before it was published, I wondered if we wanted to wade into this possible political quagmire. But after a moment, I thought that it is quite right that we provide a forum for someone trying to make sense of this new world, and also note that so often “insanity” is seen as being out of sync with prevailing norms.

    In short, we avoided any sort of politics related to the election before the vote. But now that we have Trump as a president-elect, I think it is fine-and even important–that MIA is willing to provide a forum for blogs such as Noel’s, wondering how to make sense of this new world, and what it will mean for those who have been diagnosed with psychiatric disorders, forced into treatment, etc.

    Finally, I think the comments here serve a purpose too–they have been restrained, and I think people are actually listening to each other, even if they are not agreeing with one another, and the listening part speaks well of this community.

    I hope this makes sense to our readers. We are in a new world, with a new set of norms that was seen as acceptable in a presidential election, and we should be willing for people to explore what that will mean to one’s state of mind, to treatment of diverse groups in our society, and also to what societal policies–around forced treatment etc–that may ensue..

  • To Johann Popper: You write that the difference in outcomes is due to the difference in severity at the start in the Harrow study. You need to read Harrow’s papers carefully. He groups patients into different “severity” categories–good prognosis schizophrenia, bad prognosis schizophrenia, and milder psychotic disorders–and in every case, the patients off medications had better long-term outcomes. Even more compelling, the people diagnosed with schizophrenia off medication had better long-term outcomes than those with milder disorders at the outset who stayed on antipsychotic medication. So the less severe at the outset who stayed on the drugs did worse than the more severe at the outset who got off the medication.

    There is much to be discussed and debated about the merits of the research. But to say I engage in “dishonest criticism” isn’t helpful when the data in Harrow is as I set forth above, and not as you claim here.

  • There are a lot of interesting comments here. I will try to address four particular questions.

    1) What would an ethical study on antipsychotics look like?

    I think this is the very question that needs to be discussed. Medicine is in thrall to placebo-controlled double blind studies, but it seems to me, there are limited opportunities to use such studies with people diagnosed with psychotic disorders. But here are my thoughts.

    First, you could have placebo-controlled, double blind studies in first episode patients, who were medication naive, as long as there was “environmental care” still provided, meant to keep people safe, and also, in my opinion, you still allowed for an as-needed use of a drug to help people sleep, since lack of sleep can be such a contributing factor. A cochrane review of the literature for such first-episode studies of antipsychotics found only a few, with something like 500 total patients, and in those studies, antipsychotics did not show superior short term efficacy to placebo for knocking down psychotic symptoms.

    Beyond that, I think you need studies that basically compare treatment protocols and outcomes based on differing uses of antipsychotics. Harrow’s study is a well-designed longitudinal study, precisely because he does identify different types of patients with different prognoses at baseline, and thus you can see different outcomes according to medication use within those subgroups.

    The Soteria experiment is an example of a quasi-randomized study that compares different treatment protocols, and found that a protocol that provided psychotic patients with a home and minimal/selective use of antipsychotics led to superior two-year outcomes than regular care and use of antipsychotics.

    The Wunderink study is an example of a the use of randomization to set in motion different treatment protocols, and showed that a tapering effort led to better long-term outcomes.

    In short, I think you need such protocol comparisons (which already exist in the literature) to ethically assess antipsychotics (beyond what a naturalistic study like Harrow’s) and the reason is you still need to have an environment of care.

    b) To Oldhead: I think what APA adopted in 1980 when it published DSM III was a “disease model” rather than a medical model, but I guess I was using the APA’s terminology in quotes. As to evidence-base and evidence based, the meaning difference is this:The “evidence base,” meaning the collection of scientific evidence, provides a means to practice “evidence-based” medicine, meaning medical practices that are consonant with that scientific evidence. If you have a flawed “evidence base,” or assessment of it, then your “evidence-based” practices are going to be flawed too.

    c) What about the outcomes for the people who do well during the placebo washout period. This may surprise many, but this is designed to help suppress the placebo response in the trial, which the FDA approves of. And of course, if you wanted to truly assess what happened to the group of patients who entered into this study, you would want to follow these patients too.

    d) to Brett Deacon: I should have made this more clear, because as you say, Pies and Pierre are asserting that their clinical experience is necessary to know what is best for their patients, and scientific evidence only goes so far. Well, the history of medicine is filled with examples of doctors (and especially psychiatrists) adopting therapies and seeing them as beneficial that were later seen as harmful. That is one of the main themes of Mad in America. I suppose lobotomy may be held up as the prime example of that, as it was touted as a miracle brain surgery for the longest time, and now is viewed as a mutilating surgery. The whole point of “evidence based” medicine is that begins with the understanding that clinicians can be deluded about the merits of their therapies (they are bound to see them as helpful), and thus the need to be guided by scientific assessments of those therapies. I should have made this clearer.

  • Randall,

    In terms of what is to be done, I of course don’t know. I have become convinced that real change happens when societal narratives change, and in many ways, that is what is going on now. There is one narrative that drives the conventional wisdom and societal response, and then there is a narrative that is loosely fleshed out on this site. I believe the first narrative is formed by commerce and the guild interests of psychiatry, and it is the latter narrative that is grounded in science (and the lived experience of so many people.) With MIA, we hope we are a force for changing the narrative.

  • One note regarding whether MIA (or I personally) have taken a “stand” on the issues raised in this blog. MIA provides a forum for bloggers, who may have a variety of experiences related to psychiatry, to write about those experiences, under the overall general theme of “rethinking psychiatry.” We are certainly interested in writings related to forensic psychiatry, societal stigma, and yes, questions of possible drug-induced violence. We want to provide a forum for such writings. But as the saying goes, the opinions expressed are those of the writers, and not of MIA (or my opinions.)

    Bob Whitaker

  • I had just published this blog, when, a few minutes later, Justin Karter, our news editor, posted a news item about a German study that found better outcomes for schizophrenia patients off medication. The case against antipsychotics just grew stronger.

  • I am posting this comment on behalf of Peter Gotzsche. He was informed of a discussion in Australian government re ECT, when a member of the Upper House in Australia asked question of a representative of the Ministry of Mental Health about the forced use of Electro Convulsive Therapy.

    Here, writes Peter, is a transcript of that “extraordinary” exchange:

    Dr CARLING-JENKINS (Western Metropolitan) — My question is directed to Ms Mikakos in her capacity representing the Minister for Mental Health, Martin Foley, and concerns the administration of electroconvulsive therapy (ECT) without informed consent.

    One advocate became so concerned about the increasing incidence of ECT administered to his son that he appealed directly to the United Nations Committee on the Rights of Persons with Disabilities. A reply from the director of the human rights treaties division directed, and I quote:

    Under … the Convention on the Rights of Persons with Disabilities … the state party has been requested [to] take all necessary measures to ensure the suspension of the forced … (ECT) to Garth Daniels, while his case is under consideration by the [UN] committee.

    While I recognise that it is not Victoria which is a direct signatory to the UN convention, this is still a serious directive. Despite this, Mr Daniels continues to be given ECT against his express wishes. What will the minister do to ensure that serious directives such as this are addressed at a state level?

    Ms MIKAKOS (Minister for Families and Children) — I thank the member for her question. As the member said in her question, it is obviously not appropriate for me to go into the specifics of a particular case; I need to respect the privacy of the individual concerned. However, I make the point to the member that acute mental health treatment is complex and difficult, and supporting a loved one during compulsory treatment can be both distressing and a difficult experience.

    The minister responsible, Minister Foley, of course is not directly involved in intervening in any individual’s treatment. He needs to rely on the expertise and the knowledge of medical professionals who make these clinical decisions. I understand that decisions regarding treatment for a patient under a compulsory treatment order are clinical decisions made by professionals in the patient’s best interests and in consideration of all available options. There are a number of important accountability mechanisms which govern the use of ECT for compulsory treatment patients, the most important being the oversight provided by the Mental Health Tribunal, which is an independent statutory body.

    I reassure the member that the Victorian government takes the issue of human rights very seriously. Our track record on this issue is very strong, and I think we have just seen that very recently through the Premier’s commitment to resettle the 267 asylum seekers in offshore detention here in Victoria and to give them a chance of a safe home living in our state. This government will continue to show leadership on issues of fundamental human rights, including for the protection of children, even in the face of a federal government that is too cowardly to do so.

    The member is correct that Victoria is not a direct signatory to any international conventions, although we respect and appreciate the role which the United Nations plays in upholding the rights of all people, including Victorians. This is a complex issue that the member has raised. The minister responsible will of course be guided by advice that he receives from his department, but I understand that the department is taking very seriously the issue of the UN correspondence in respect of this particular matter. Obviously the minister will continue to receive further advice on this matter to ensure that in all complex cases, including this one, there are appropriate accountability measures in place at all times’

  • To Knowledge is Power (and others):

    That is encouraging to hear of Kim Mueser’s presentation at the PRA conference. It shows that the discussion is changing . . . and that the “antipsychotics for life” mantra of mainstream psychiatry is now, increasingly, not being accepted. That is a sign of a real change.

    In terms of getting this discussion into the mainstream media, I have found it to be basically impossible. When I wrote Anatomy of an Epidemic, there were almost no newspaper or magazine reviews that appeared, even though this was my fourth book, and the one that did, in the Boston Globe, was written by a Harvard-affiliated doctor who likened me to an AIDS denier. I have had magazine pieces commissioned and then killed, on such topics as PSSD (post SSRI sexual dysfunction) and the failure of suicide prevention campaigns (cross-cultural data shows that, if anything, they tend to increase suicide rates.) More recently, I had a piece killed related to the recommendation by the U.S. Preventive Services Task Force to screen all American adults for depression. This one was for a major medical journal, which solicited my essay as an opinion piece, and when I wrote that there was ample evidence that universal screening would turn a number of people with ordinary, transient problems into people with chronic psychiatric difficulties, with some ending up on disability, the psychiatrists who reviewed the piece said it should be killed. Surprise, surprised.

    In short, the narrative, in magazines and most other public forums, is controlled by the “experts” and the influence of pharmaceutical advertising dollars.

    This is why, in the future, I would like MIA to be able to hire a reporter. We need to be able to do our own reporting on these issues, such as the Murphy Bill, forced treatment, and the media’s treatment of these issues, in order to become a journalistic outlet for this needed critique of the conventional narrative. My hope is that, with time, we will develop the financial resources to be able to do that.

  • This has been an interesting discussion. A couple of notes in response to comments above:

    Anonymous: I don’t think a statistical analysis of correlational coefficients has been done. The p values on the differences between the medicated and unmedicated patients in Harrow’s study were quite strong though . . . the differences between the two groups were huge.

    Madmom: As you say, there is a macro struggle and a micro struggle, and whereas the macro one may occur at an abstract level, the micro one is where the power is really exhibited by psychiatry, and the pain, and the loss of real life is really experienced. The only reason the macro struggle has any meaning is because of what is happening to the lives of individuals. The struggle at the individual level is infinitely harder than any struggle at the macro level, and I emphasize the word “infinitely.”

    As for the financial stability of MIA, I don’t think we will need to have another fundraiser this year. In addition to the earlier fundraiser we had, we have a number of readers who support us with a monthly donation, and that is a vital form of support. At the same time, I do wish we could ramp up our operations, and hire a reporter, and then we could become a publisher of steady, original journalism. It’s all part of a process of trying to grow MIA as a force for the “counternarrative” that can be found in these pages.

  • Oldhead,

    The terms tardive dyskinesia and tardive psychosis are linked, in a way, but separate. Tardive dyskinesia, of course, is the appearance of motor disabilities that regularly don’t disappear in adults even after withdrawal of the drug. The thought with tardive dyskinesia is that, after time, the drugs have permanently damaged the basal ganglia part of the brain, which is a region dependent upon dopamine neurons. I should note that tardive dyskinesia is also associated with cognitive decline, functional decline, etc. It’s not just a “motor” disability.

    The thought with tardive psychosis is that antipsychotics, over time, lead to a more permanent dysfunction in the limbic area of the brain, which–within the “disease” model of schizophrenia/psychosis–is thought to be a mediator of psychosis. Thus, the thought that dysfunction in this area of the brain, which is also a region dependent upon dopamine neurons, will often lead to later onset (e.g. tardive) psychosis.

    So tardive dyskinesia is thought to arise from drug-caused damaged to the basal ganglia; tardive psychosis is thought to arise from drug-caused damage to the limbic system.

  • Greg,

    You are absolutely right that, in terms of having an impact, the problem here is that the audience for this critique is already of a mind to accept it, whereas Pies was speaking to an audience ready to accept his writings. Huffington Post then ran Frances’ blogs, and his incorporation of Pies’ work. I will now approach Huffington Post to see if I can publish a version of this there. Frances also blogs on Psychology Today, and I used to have a blog there, and so I may resurrect it there. But that’s the real issue; how can this “discussion” move into the general public arena?

  • To BDP: There of course are critiques of schizophrenia as a diagnostic construct that can be made, and even mainstream psychiatric researchers don’t believe there is one “schizophrenia,” but rather a “group of schizophrenias.” But if you are going to write an article about how psychiatry as an institution weighs its “evidence,” you have to do so within their diagnostic constructs. Challenging its constructs is a whole other exercise. As I have written before, it is about engaging psychiatry on its own diagnostic terms, and accepting its own scales, and then saying, what does the evidence show. And what you see here is that even when that is done, psychiatry’s sorts through the evidence in ways that serve its guild interests, rather than in ways that might improve its treatments.

  • It probably was a mistake to use that term, “chronically crazy.” The reason I did was that it showed that the origins of this study was that the researchers basically went into this rurarl community, and said, tell us who your “crazy” people are, as clearly they weren’t asking who had “schizophrenia.” The point is that even the “diagnostic” beginnings of this study were far from the western diagnostic construct used in Harrow, which would seemingly be of more value to American psychiatrists. I should note that this group of “untreated” people regularly worked–early in the study 88% were working, and then as they grew older, by the end of the study, it was 64%. But I see how that point is missing here, in terms of why I used that language.

  • Bill,

    Thanks for your comments about Psychiatry Under the Influence. When we wrote it, Larry Lessig, who wrote the foreword, was sure it would make a big splash. But as you say, it has been ignored.

    I think the problems were two-fold. One, we couldn’t get a trade publisher for the book, as they thought it was too academic . And then we went to a couple of high-profile academic presses, and even though we got good peer reviews (from non-psychiatrists) it seemed that the presses then came under some pressure not to publish the book. Finally, with Palgrave Macmillan, there just was little marketing done, and the price is too high for a trade market too.

    It’s disappointing, because I think the book makes a case that can resonate with the public, since most would agree that a medical specialty isn’t supposed to create narrative that benefits the guild–of chemical imbalances and so forth– but is out of sync with its own science. I have presented on Psychiatry Under the Influence now in various forums, and people seem stunned to see how poor outcomes were hidden, studies spun and manipulated, and so forth.

    But I do wish it had made more of an impact.

    Bob

  • I can see how this sort of abstract argument over an “evidence base” for antipsychotics can seem stripped of the “humanity that brings these issues to the forefront.” The very discussion of an “evidence base” removes the voice of the person being “treated” from the discussion.( I like to think that this website provides a forum for that voice, that experience, that humanizes this whole discussion.)

    At the same time, psychiatry creates a narrative for our society to believe in that derives from its abstract “evidence base”, which says antipsychotics are good for all psychotic patients as an acute treatment, and then good for continual treatment too. We have laws related to forced treatment that arise from that societal belief. And so I think that a discussion that takes place on that playing field, of the abstract world of “evidence based ” medicine, serves a purpose, as it can undercut that false narrative that drives societal thinking.

    I also don’t think it is a game of “you’re wrong and I’m right.” What I was trying to do in blog is this: Okay, Dr. Pies and Dr. Frances, let’s agree you are “right” about your categorization of when the drugs should be used. But then does psychiatry have an “evidence base” for the use of antipsychotics that would support their categorization of when the drugs should be used? It does not . . .that is the point. Based on their own thinking.

    So this wasn’t a “you’re wrong and I’m right” discussion. It was an, “okay, let’s say you are right. What are the implications of what you are saying?” And the implication is simply that they have an evidence base for using these drugs that, based on their own thinking, is doing harm to many people.

  • To Oldhead and Jeffrey,

    As Jeffrey says here, I don’t think my “opinions” about all this matter at all. I really come at this from this perspective: A medical specialty has a duty to be honest in its communications to the public. It has a duty to try to dig into its own science to best serve its “patients.” I think psychiatry has failed to meet that duty, and that is doing great harm. So much of my writing has been in describing how a look at the actual science doesn’t support the story that psychiatry has been telling the public, and that its story about the effectiveness of its drugs, particularly over the long term, is also belied by its own science. In essence, think of it this way: our society, i believe, has organized itself around a false “narrative of science” told by mainstream psychiatry, and my job, coming at this, at least in the beginning, from a traditionalist journalist’s perspective, is to reveal that falsehood to society.

    I also don’t think this post is about a trifle, either. If you have Dr. Frances and Dr. Pies acknowledging that many “psychotic” patients shouldn’t be on antipsychotics long-term, then you open up a new discussion, about how its evidence base for antipsychotics is doing harm, and also, okay, then where is the evidence base showing that the medications provide a benefit for a certain subset of patients? Again, this post in essence is meant to reveal a falsehood: that science has shown that “psychotic” patients need to be treated with antipsychotics right away, and that such patients then need to be on such medications for life. It also leads to the point that Open Dialogue Therapy, in its selective use of antipsychotic drugs, isn’t actually doing anything radical, in terms of the scientific literature. The scientific literature actually argues for trying to minimize initial use and long-term use of the drugs in precisely the way that open dialogue protocols do.

  • Just a couple quick notes. In terms of using DSM language, my point here was to respond to Frances and Pies on their own terms: they have this diagnoses, and they say they understand that only a fraction of people with these diagnoses need antipsychotics for life. This is how they see it, and yet that have an evidence base for using the drugs that prevents them from using the drugs in the way they say they should be used. The point is to do an analysis from that perspective, on their own biological turf, so to speak. As for Kayla’s comment re the purpose of the website, in essence, yes, the founding principle of the website is that the existing drug-based paradigm of care has failed (in so many ways), and this website is supposed to be a gather spot for “rethinking” this entire domain of our lives.

  • Thank you all for this feedback. Chris Page, our operations manager, has really worked hard to create this fundraiser , and so it’s nice to hear from BPDTransformation that it looks well done. It is true, of course, that many of our readers are poor. But of course we deeply appreciate every donation, and a lot of $5 donations add up. I should also note that we have a number of people, who I am sure struggle to make ends meet, who have donated $25, $50 and so forth, which, even beyond the monetary help, is extraordinarily emotionally rewarding for us. it makes us feel that we are doing something that is meaningful to many people.

    And yes, in terms of money, this is a David v. Goliath fight. Think of it this way: in the U.S. spending on psychiatric drugs is more than $100 million a day. We are trying to raise 1/400th of that amount to fund our entire operations for a year. And every amount that is donated, whatever it might be, helps us stay alive, and I think, if we can launch all the initiatives we are talking about, we can markedly increase the impact of the MIA community.

    So, just wanted to drop in here, and say thank you.

  • I very much appreciate these comments, kind words, and challenges. The one point that I would like to respond to is my use of language (“severely mentally ill,” etc.). This language, of course, is part of the conventional narrative, and when you move into the counter narrative, you find the difficulties framed and described in a very different way,as Lucy Johnstone writes in her comment. But in terms of my writing about the merits of the medications, I think it is important for me to look at that question through their own diagnostic language. The question then becomes framed this way: The field of psychiatry states there are these clear-cut disorders, They have done studies designed to assess whether their drug treatments are effective. And given that framework, what do their studies show about the long-term effects of their drugs. In other words, I am not challenging their language, and I am not challenging the fact that the researchers, almost as a matter of course, have an implicit bias favoring the drugs, and that is what they expect to see and want to see, and I am just saying, what did researchers operating within the conventional narrative find out about the long-term effects of their drugs. That is why, I believe, that conventional psychiatry can find my writings, such as I published in Anatomy of an Epidemic, so threatening: I am simply holding up for them a story of their own findings, which come out of their own narrative of “serious mental illnesses,” and their own diagnostic constructs. Even on their own terms, the drugs are found to worsen long-term outcomes. This site, Mad in America, of course, gives voice to all aspects of the counter-narrative, but I personally stick to a much more narrower critique: what does their own research show about the merits of their drugs, and the validity of their own diagnostic constructs. Their diagnostic system also fails to meet scientific criteria for being reliable and valid (and thus useful), and so that part of their narrative also fails as measured by mainstream standards.

    I sometimes find this an awkward combination: Being the publisher of a site that provides a forum for the counter-narrative, and at the same time limiting my own writings to a narrower sort of critique. But my guiding of this site can be understood from a journalistic perspective too: our job as journalists is to flesh out counter-narratives and make them known (as otherwise we are just sucking up to the powerful), and this site does that by providing such a forum, and also by featuring scientific reports (Our In the News) that challenge the conventional narrative.

  • We did look into advertising. One problem was that if you do google ads, and even place several ads on a page, it really doesn’t add up to much money per month. And so we decided that gunking up the site with ads, which would slow down the site and all, really wasn’t worth it. One brief irony: at one point, I received a call from a broker for pharmaceutical companies. Apparently our site had come up on their radar as a health site that got a certain number of visitors. And the pharmaceutical companies paid a lot more per ad than google ads. But obviously that was a non-starter, and I am sure that pharmaceutical companies, once they read the site, wouldn’t be placing ads with us.

    We may still explore having ads of a certain sort, such as for residential centers, treatment places, etc. We are going to be exploring a lot of ideas to try to keep this site running. One problem, and readers here may laugh at this, is that we have been running on such a shoestring, that we really haven’t found the time, which we should have, to really address these financial questions. It takes a lot just to run the site editorially and technically, and we–meaning me–dropped the ball on this.

    As for what MIA is about, I think perhaps it can be explained in this way. Our society has organized itself–how we think about psychiatric disorders, and how to treat them–around a false narrative (of validated disorders and highly effective drugs), and that narrative also excludes the voice of survivors (and really, to a large extent, of critics.) MIA is a forum where readers can find a counter-narrative . . . one fashioned from scientific reports (which we feature in news), from critical analyses of the common narrative, from the voices of survivors and people with lived experience, and from reports on alternative possibilities. And you can certainly find on this site many, many voices protesting ECT, against forced treatment, and so forth.

    That is what MIA really does: it provides a forum for that counter-narrative to be aired, to be developed, to be fleshed out,and, I think, to be validated. The voices of the commenters are an essential part of such a counter-narrative. I regularly refrain from commenting much, as I think the comments are their own element, so to speak, even if it involves sharply criticizing MIA, as Pat Risser has done here. The dialogue here, including the discussion/criticism of MIA and its purposes, is an important, essential aspect of a website that is devoted to fostering that “counter-narrative.”

    And personally, I think societies change in response to larger narratives. Our society has organized itself around a false narrative, one that serves commercial interests and the interests of a guild, but is ultimately doing great harm to our society, and I think that this site, by being a home for a counter-narrative to be heard and to be honed, provides readers with a way to think, in a big picture way, of different possibilities. If a reader comes to believe in the merits this counter-narrative is a more true narrative, then that reader comes to see this entire world of psychiatry in a different way.

    At least that is how I have come to see MIA. There is a battle of narratives that is going on in our society, around this whole topic of psychiatry, and MIA is a home for fleshing out the counter-narrative.

  • Thanks for these comments. To those of you who are having trouble donating, we’ll look into this. We have it all set up according to protocols established by Paypal and credit card processing approved by out bank, which involves making sure transactions are secure and all cc info encrypted. As for our not getting back to you Peter, I am sorry about that, and I’ll ask someone to look into what is the problem here with your password.

    I am also not sure about this email glitch, but will look into it.

    Thank you all for your support, and this feedback.

    Bob

  • Thank you for all these comments.

    Sandy, you pointed out the Crowe study to me some time ago, and as you say, it showed better functional outcomes at the end of two years for the unmedicated group, and yet this study was cited as “negative” by the researchers, meaning it didn’t support the hypothesis that antipsychotics worsened outcomes. These researchers seemed hesitant to conclude that studies were “maybes” or yeses in terms of supporting the hypothesis.

    The Carpenter study is another example of where these researchers listed a finding as negative, even though in the Carpenter study, in a comparison of 49 patients who received psychotherapy, the off meds group had a slightly lower relapse rate at end of one year, and suffered less from depression (and there were other observations on how they were doing better.) This led Carpenter to wonder whether antipsychotics increased the biological vulnerability to psychosis. I would think such a finding would deserve at least a mixed rating, not a negative one. It makes me wonder whether this study was done with the expectation to disprove the hypothesis (that antipsychotics worsened outcomes). But the important finding remains; this group couldn’t find any quality evidence, from its review of studies, that antipsychotics improved long-term outcomes.

    Axqi; in 2015, Crown issued an updated edition of Anatomy. The updated edition has a new foreword and a new afterword, which provides a 5500-word update on research since the first edition was published.

    Chris12345. There is the question of how antipsychotics affect outcomes in the aggregate, and then there is the question of how individuals may be affected by medication use. We currently have a one-size-fits all approach, but as I wrote in Anatomy, I think a nuanced investigation of the research literature shows that there should be a selective use model, which would involve trying to get people through first episodes of psychosis without putting them immediately on antipsychotics, and then if the drugs are eventually used, trying to minimize long-term use. This was the open-dialogue model: a selective use model that found that some people could get through an episode without being put on antipsychotics, that some people benefitted from a short term use of the medications, and then there were some who benefitted from their use over a longer term. That selective use model produces better overall aggregate outcomes, whereas a one-size all model promotes worse overall aggregate outcomes.

    I like to think that MIA, as a webzine, promotes that nuanced vision of antipsychotics. As for our not championing the stories that Saks is interested in promoting, there is a whole industry out there promoting that story, and so it’s not missing from the public conversation. What MIA is doing is providing a forum for telling the untold story, so to speak: which is of research that doesn’t support the one-size-fits all model, and research that shows that these drugs can cause harm (to many), and to provide a forum for these experiences too.

    I appreciate all the comments here.

  • I have read this entire thread, and think it is time to bring this particular discussion to a close after I try to respond to some of the comments here.

    First, I should note that I know David Healy well. As a journalist, I feel like I owe him a debt of gratitude. When my book Mad in America was published, and I was mostly getting roundly criticized by psychiatrists (or really just personally trashed in some reviews), David Healy–and I didn’t know him at that time–wrote a very favorable review. That took courage for him to break ranks with this professional tribe. It was also in that book that I wrote about electroshock, as part of psychiatry’s history, and did so by describing it as one of several “brain damaging” therapies embraced in the 1930s and 1940s. So he did not respond to my writing there, critically of electroshock, with criticism of me, or a dismissal of the larger history told in Mad in America. He remained open to the larger history I had told.

    I then interviewed him when I was writing Anatomy of an Epidemic, precisely because of his views about tapering people from psychiatric drugs. He also provided what I think was the best possible blurb for Anatomy of an Epidemic, when he wrote: “If psychiatry wants to retain its credibility with the public, it will now have to engage the scientific argument at the core of this cogently and elegantly written book. ” That took guts to write, to publicly challenge his own profession in that way.

    Next, I have a small financial interest in RXRISK, meaning I invested a small amount of money to help it get started, and agreed to serve in an advisory role. I think RX RISK is an invaluable resource for researching adverse effects of psychiatric drugs, and we feature it prominently on our drug info page.

    Now, more generally, I think that Healy’s writings–as they come from a psychiatrist/researcher who knows the research literature so well, and is fighting in so many ways to make the adverse effects of psychiatric drugs known–add a great deal to the MIA website. His is an important voice.

    Next, I want to reiterate what one of the commenters writes above. He does his best to personally respond to those individuals–including many psychiatric survivors–who write him personally asking for help related to harm from psychiatric drugs, and has also filed depositions and other papers in their behalf. He has served as an expert witness in civil cases against drug companies. All of this speaks well of him, as one who is battling the Goliath, and doing so at considerable personal cost.

    As for his writings on ECT, I think they are more nuanced than many understand.. He wrote certain chapters of the book with Shorter, and Shorter wrote others, and it is unfortunate that the authorship of those chapters are not better identified. His position on ECT should be based on his own writings, and not what others have written about him. That said, I do disagree with him about what the scientific literature has to say about ECT, in terms of its “efficacy” and its harmful effects on the brain. So be it. I should add that Healy has also sought to engage his critics on ECT on his RX RISK site. So he has engaged in a discussion, and that speaks well of him. He hasn’t shut his critics down.

    As for the discussion of ECT here, on this thread, a couple of points. First, I think David Healy often does read the comments, but he doesn’t respond here because he thinks, in part, this is a section that belongs to the commenters. Let the readers have their say. He has never asked us to shield him from this criticism for his writings on ECT. So here is how it works for Healy: Kermit Cole, our blogs editor, cross-posts his posts from RX RISK that he finds of value for our readers, and then Healy often gets criticized by our readers, and Healy says he is okay with that (the criticism.) That takes a big spirit.

    All of which is to say, I think having Healy’s posts appear here is of value to MIA readers, and I think too, if you look at how he responds to individuals who come to him asking for advice or help about psychiatric drugs, you see a tremendous generosity. Kermit Cole has said all this more eloquently than I, but I just wanted to explain, in my words, why we run Healy’s posts, and believe they add in important ways to this website.

  • Regarding John Smith’s request for transparency, I can first assure him that writing critically of psychiatry and the pharmaceutical industry is a very lousy way to try to earn a living. In fact, both MIA and speaking related to Anatomy of an Epidemic have presented something of a financial hardship, as they have taken me away from the schedule of publishing of trade books that I had been on before Anatomy was published, which is how I had been making a living.

    I started this website, madinamerica.com, as a personal website after publishing Mad in America, my first book on psychiatry, in 2002. I then turned it into a webzine in the first months of 2012, after publishing Anatomy of an Epidemic in April of 2010.

    Although Mad in America, the book, is not much publicized on this site, I do get a small amount of royalties each year from that book — a couple of thousand dollars a year.

    As for Mad in America, the website, I invested $20k in it to start the website (and got some other investment as well). I have never taken a penny from the website in pay, and most of our initial investment is gone. The money we get from donations does not cover our operating costs, and we are going to have to figure out other sources of revenue if we are going to continue the website over the long-term. We are investigating those possibilities now. But for me personally, it has represented a serious financial drain.

    As for Anatomy of an Epidemic, which is sometimes featured in a box on the front page (partially because some people come to this site looking for more information about that book and my speaking engagements), I have yet to earn any royalties on that book. The way the trade industry works is you get an advance against royalties, and then you don’t get any more royalties until you sell enough books to pay back that advance. Talk to any writer today, and unless you are a famous celebrity writing a book, or a best-selling fiction author, and they will tell you that writing books is a very lousy way to earn a living.

    As for speaking, yes, I speak a lot, and in the past few years, I suppose my honorariums have totalled around $12k per year, even though I am on the road for more than 100 days a year. The reason of course is I am speaking to groups without money, or to professional groups that pay smaller honorariums even to their keynote speakers.

    So there is your transparency. In our society, I think financial conflicts of interest develop when you are singing the praises the powerful and corporate interests, not when you are challenging them, and doing so in such a contentious space as psychiatry. Your “pay” for challenging such powerful interests comes in the form of thinking that you are doing something meaningful with your life. There is an old adage in journalism that your job is to afflict the comfortable and comfort the afflicted, and I like to remember that as I think whether what I am doing with mad in america is a worthwhile endeavor.

  • One of the interesting things about the comment thread is how it leads to unexpected issues, and one issue raised now is society and the correctness of science. First, I agree that the “correctness of science” exists apart from society, and in fact scientific discoveries often challenge everything a society holds dear (think of Galileo, Darwin, etc.) My point related to this discussion is that I think a society has a responsibility to figure out how it will care for its citizens, including its citizens who are struggling in various ways with their minds, and that as part of this responsibility, it can try to see whether its current paradigm of care is based on a “true telling” of the science that has been done, and whether the “science” itself has been conducted with the principles of good science (and a search for knowledge.) And in this arena of psychiatry, you can see that psychiatry, as an institution, has failed its “scientific” duty to the public: it has conducted trials biased by design, it has consented to a spinning of results, it has kept quiet about results that it finds threatening, and it has, in a big picture way, told the public a false story about the validity of the disorders in its diagnostic manual, and the efficacy of its drugs. What society needs, as it tries to figure out how to create a new paradigm of care, and thus fulfill its responsibility to care for its citizens in distress, is to be guided by science being honestly conducted, free of commercial and guild interests.

    I also agree with Richard: society has a responsibility to create the favorable conditions that allow good science to flourish, and our society, when it comes to the testing of drugs, has clearly failed in that regard.

    As for MIA being critical of non-drug therapies, I think MIA should bring a critical — meaning thoughtful, questioning perspective–to all psychiatric therapies. I recently wrote a paper for a European journal which I opened with a quote from the title of a book, which is something like: We have had one hundred years of therapy and the world keeps getting worse. That goes along with what I wrote in an earlier comment; I don’t want MIA to “favor” any therapy.

    Finally, in terms of who writes for MIA, I think we do have at least a few people who prescribe medications and see a use for them. We also just published a very thorough review of neuroleptics by Volkmar Aderhold and Peter Stastny, and they presented an evidence-based case for “minimal use” of these drugs. The discussion about the use of these drugs however should take place within a context of informed consent: what is known about how the drugs act on the brain and change the brain; what are their short-term and long-term effects (both on target symptoms and what might be described on the person as a whole, in all domains of his or her being), and what is known about their full range of side effects. And I am quite sure that the prescribing of psychiatric drugs has not occurred within a context of informed consent, and the violation of that informed consent starts with the idea of how they fixed chemical imbalances in the brain.

    And in a personal note to TSMONK, I’d be delighted to share a beverage at some point when I am in New York.

  • TS Monk’s question about solutions, and whether I should be offering one, has made me think I should write a blog about this. But here is what MIA and I are trying to do on the solutions front.

    The first thing is this: what is clear is that we have a paradigm of care in the United States (and increasingly this is true globally) that is organized around a false narrative of science. A first step toward change is documenting a scientific narrative that reveals that to be so, and the harm it is causing, and that is something I believe my writing has helped to do, and this website has helped to do (by fostering a forum for such critical discussion on psychiatry.)

    Next, once society comes to see that the prevailing narrative is false and doing harm, the obvious question becomes, what now? And that is a question to be answered in a collective fashion by society. It would be presumptuous and ridiculous of me to posit an answer to that profound question, and in fact, I think it is my particular challenge–and the challenge of MIA–to help foster a societal discussion about that question and provide information about initiatives related to developing a new paradigm of care, but doing so without saying we favor any particular solution. We should not be seen as having our own “horse” we are backing, so to speak.

    So how are we trying to do foster such a discussion? One is through MIA: our news section is designed to help publicize research into psychological aspects–such as trauma–related to emotional distress/difficulties, etc., and also help publicize research into non-drug treatments (or treatments that use drugs in a much more limited manner). We also urge bloggers to write about initiatives for change, whether it be the hearing voices movement or efforts to adopt open dialogue type practices (or any other type of alternative.) MIA also started a non-profit continuing education organization, Mad in America Continuing Eduction, that is putting up online courses that are designed to help professionals and others learn about research into long-term outcomes with drugs, and research into alternatives as well.

    I like to think that MIA and Mad in America Continuing Education are contributing to the search for solution, and doing so by serving as a reliable source of news and as a forum for dissemination of information and discussion around this entire subject. But MIA –and me personally–should not be in the position of saying, in any way, here is the answer! My own personal belief is this: We, as a society, don’t know the answer , but need to commit ourselves to creating a new paradigm of care, one that respects civil rights, treats people with dignity, and helps people have full, meaningful lives.

    As for the question of my pessimism, I do think that there is a great deal of new discussion occurring about what to do differently, and ultimately about the failure of our current paradigm of care. That is good. But I am pessimistic that psychiatry, as an institution, will be stripped of ts authority over this domain of our lives, or that it will reform itself in a way that provides for a real rethinking of the current paradigm of care. So I guess I am of two minds on that, optimistic and yet pessimistic at the same time.

  • I agree that the corruption of the medical profession (and psychiatry) by the influence of pharmaceutical companies has been ongoing since the 1950s, as was laid bare in the Kefauver hearings (quoted above I believe.) And psychiatry, as a guild, started protecting its “drugs are great” story at that time. But, if we look at our current conceptions of psychiatric disorders, and the great expansion of diagnoses and the use of psychiatric drugs, that has occurred since 1980s, when the APA published the third edition of its Diagnostic and Statistical Manual.

  • I have been reading these comments with great interest, starting with Sandy’s blog. To a large degree, Lisa Cosgrove and I applied the framework of institutional corruption developed at the Safra Center to psychiatry, and part of that framework–whether “right” or not–is to look at the institution that has become corrupt, and then turn to cognitive dissonance theory to understand why the people in the institution don’t see the corruption that is so visible to those outside the institution.

    I am still mulling over what to do next; I think there is a very pressing need to confront this institutional corruption, for it is causing great social harm, as we wrote in the book.

    But I am indeed convinced that individual academic psychiatrists, who have been wooed and made into thought leaders, do not see themselves as corrupt. They see themselves, in many instances, as great “men” and women, pushing forward the “science” of psychiatry. Look at Lieberman’s book; that is how he sees himself and his fellow biological psychiatrists.

    What I can’t get straight in my own mind is how investigators in NIMH-funded trials will spin the results, hide bad results, and otherwise cook the results, which is what they did with the STAR*D study, and yet keep up their self image as “scientists.” How do they not see themselves as corrupt in those moments?

    But here is the thing; I don’t think they do. They don’t see themselves as corrupt. And the point of an exploration of cognitive dissonance theory isn’t to absolve individuals of blame, but rather to prepare for a discussion of solutions: Can you expect those within the institution to recognize the corruption and reform the institution? CDT tells you not to expect that to happen, and thus, you have to look for outsiders (e.g. the public) to provide a remedy.

    But wonderful discussion for me to read.

  • I appreciate these comments and may write a blog about it. I can see we didn’t handle this in the way I thought would be clear to readers that this, in essence, is an example of bad science that just won’t die.

    This study, of course, is ludicrous. First, you have the historical context, which is that researchers were making the opposite claim, that mood disorders were due to too little serotonin, for years, on “reports” that when looked at critically didn’t stand up. This study is presented in complete ignorance of that history.

    Second, you have the present context, which, at least in the United States, is that the notion of chemical imbalances for mood disorders has completely collapsed in the research community, and they have moved on to new biological models. This study is presented in complete ignorance of that.

    Third, if you look at the study itself, it is ridiculous, and all the bad science is here. Composite scans for the two groups (which hide the fact that there will be remarkable overlap between the control and experimental group), prior exposure to SSRIs or even current exposure, and a method that may not even be reliable in measuring serotonin release.

    Rob Wipond initially put on a mocking headline on the story and ran it by me, but I thought, for an item to run in the news, as opposed to in a blog, it was a bit much, and we should put on a somewhat straighter title, with the critique making it clear that this was yet more bad science for a model that, in Sweden anyway, just won’t die. Obviously, that didn’t come through here, and that is the failure.

    We probably could have just ignored the study altogether. For me, its import was that here was an example of researchers in Sweden (where they haven’t given up the chemical imbalance story at all, as researchers there have a personal investment in it, as it was Swedish researchers who helped give rise to the theory in the first place) now coming up with a finding that said all the previous research and theories about low serotonin were wrong, but now, based on this rather ridiculous study, were announcing that the opposite problem was true!

    I thought that was the point worth having in the news, and that our readers would understand why we picked it as news. We obviously failed to communicate that. We actually have wanted to start a section for regular in-depth critiques of science of this sort, which does need to be picked apart, and so perhaps this will provide us with an opportunity to do that. The deconstruction of bad science of this sort is a necessary task but unfortunately an unending one too. The junk science is endless.

  • I decided to close comments on this article for this reason: As the publisher of this website, and also the subject of this piece by Bruce Levine, I think it would be difficult for us at MIA to moderate the comments so they adhered to our guidelines (even though I think our moderator, Emmeline, handles this task with extraordinary skill and attention to our readers.) The article tells of research that was abusive and unethical in the extreme, which deserves to be known, and thus it does speak to a larger “institutional” problem with psychiatry and its past. At the same time, I don’t want to publish a stream of comments that focus criticism on Lieberman the individual.

    Bruce has also published this piece on Alternet under this title: Leading American Psychiatrist Conducted Disturbing Experiments, and readers can comment there.

  • Ted, as you’ll see when you read the book, I don’t think psychiatry will be changed from within. But i do think that an effort to solve this problem, of an institution that has privileged guild interests over its duty to the public, can recruit support from individual members within the institution, who, when given an opportunity to review the corruption in their own institution, may feel quite betrayed by their own institutional leaders.

  • There are many interesting comments here. I’d like to try to respond to a few:

    Why aren’t there more whistleblowers? As a guild, psychiatry has punished its internal whistleblowers time and again. The whistleblowers get isolated, their careers are threatened, and so forth. This isn’t unique to psychiatry, but unique to how institutions protect themselves. Whistleblowers are punished.

    Why not write about NAMI? It is true, of course, that NAMI played a leading role in promoting a “corrupt” story about what science was supposedly telling us about psychiatric diagnoses and drug treatments for them. But this particular book was about the institution of psychiatry, and more to the point, it is the medical specialty in a society that has the duty to inform the public in an accurate manner as possible about the scientific legitimacy of diagnoses, and merits of treatments. And this is a book about a “corrupt” institution that has failed in that duty.

    Not just a bad barrel problem comment: I think it is important to understand how medical training and medical practices develop. Younger doctors are taught to “learn” the accepted wisdom, and then they are under great pressure to adopt standard practices. In this instance, the fact that the APA and academic psychiatry have told a corrupted story since 1980, one that privileged guild and pharmaceutical interests over their public duty, has betrayed practicing doctors too. This corruption can remain invisible, or glimpsed as only a small problem, by many practicing within the system. I don’t think any change is possible unless those who would promote the change start with this premise: The overwhelming majority of people in a “provider” role, whether as a psychiatrist or in some other role, got into this profession wanting to do good. And I have to say, in my limited interactions with residents in psychiatry, I see this regularly: I find the young residents inspiring in so many ways, but then I am astonished by what they are learning, which so regularly is basically the guild version of diagnostics, treatments, etc. It’s like a process for brainwashing people. The possibility for real change, I believe, begins with seeing most providers in this light, as their wanting to do well, and betrayed by the “corruption” in the psychiatric guild. Then you have a new way for building a consensus for “radical” change.

    The social injury: There is a note about the disease model causing social injury because it puts blame on the individual that person’s struggles, as opposed to the social conditions–inequalities, lack of opportunities, etc.–that can cause so much “emotional” difficulties. This is so true. This paradigm of care is a horrible barrier to social change, and trying to create a better society precisely for that reason. And one very obvious example of that is how we treat foster care children: We diagnose them and put then on antipsychotics, rather than saying, these children were in a horrible, often abusive environment, and it is our duty now, as a society, to create a new, safe environment for them.

  • Bruce,

    Thank you for providing this pubmed link. I couldn’t find it yesterday when I wrote this post. Yes, think of this, this was an experiment where people experiencing psychosis came to an ER or other hospital setting, seeking “help,” and instead were given methylphenidate, which Lieberman had previously written could be expected to exacerbate their symptoms. Needless to say, the “volunteers” in this study were not told they were being given a drug expected to worsen their symptoms. And now consider this:. E. Fuller Torrey has even cited this Lieberman study as proof that you can’t treat newly psychotic patients without neuroleptics, omitting the fact that these patients were given a drug to make them worse! I am glad you picked up on this at greater length.

  • Thank you for all these comments of support. I do wish that more could be made of this, in the sense of issuing a larger challenge to the APA. The new book I have co-written, Psychiatry Under the Influence, arose out of time I spent at a laboratory at Harvard for studying “institutional corruption,” and one of the key ideas is that when you have an institution that is corrupt, the citizenry has to demand reform. Lieberman’s comments on the CBC radio are an example of this corruption–making public claims that are false (and bashing those who would point this out.) I think perhaps some sort of formal challenge to the APA might be good here. I need to think of this, but this is the point: institutional psychiatry is a corrupt institution precisely because it constantly tells a false story to the public, which supports guild interests.

  • Gavanshir,

    One of the reasons we don’t have more alternatives is that the APA and mainstream psychiatry have been overselling the safety and efficacy of their medications for some time. There is no way to have a thoughtful use of a medical therapy unless you have an honest discussion about the therapy’s merits, and we have not had that in psychiatry, and that includes risperidone. When it was approved by the FDA in 1994, it was touted by academic psychiatry as a breakthrough medication, so much better than the old drugs, but when the FDA looked at the data, they saw no evidence that this drug was any better than the first generation drugs. You say that without risperidone, we would have to increase the size of our prisons ten-fold, and lose many family members to suicide and homicide. I know of no studies that would back that claim. So, if we as a society want to provide effective “psychiatric” help, then we need this discussion to be based on honest science, and an honest dissemination of that science. That will help provide a foundation for change and the solutions you seek.

  • I was going to write about their “platform in the media” as well, because of course Lieberman and Torrey do have a platform, and so this is the message that gets more generally promoted. And while everyone may understand that blurbs are not reviews, and thus are meant to by hyperbolic, it is interesting that there are very prominent names on Lieberman’s book, describing it as “stunning,” “astonishing,” “masterful,” and “extraordinary.” And this governing myth of psychiatry is a barrier to change, and also a barrier to psychiatry operating in an atmosphere of “informed consent.” The misinformation makes “informed consent” impossible. But I agree with getitright that there are psychiatrists who are open-minded, non-coercive, respectful, and smart enough to ask questions (and don’t believe in the triumphant narrative of psychiatry that Lieberman promotes in this book. I have found that particularly true among many younger newly minted psychiatrists, who are coming into the profession while the old narrative of triumph is collapsing so many ways. And so this provides an opportunity to, as getitright says, light candles.

  • Sa,

    That is a good question, and I really don’t know the answer. What seems to be happening is that a significant percentage of people with psychotic disorders “disappear” from the disability rolls each year.

    For example, there 433,835 people receiving an SSI payment in 2010 because of schizophrenia or other psychotic disorder. From 2010 to 2013, there were 157,000 new awards for schizophrenia and other psychotic disorders. Add those two together and you get 590,000 by 2013, minus of course whatever number who died, left the program for unknown reasons, disappeared, or went to work (the latter is a small number.) And you see that the total number of people on SSI disability due to schizophrenia/psychotic disorders was 441,367, meaning that about 150,000 people in this category left the SSI rolls during those four years. Where did they go?

    That is a question that deserves to be investigated. It is also notable that 60% of people receiving SSI in this schizophrenia/psychotic disorders category have been on the SSI rolls for 14 years or less.

    So, I don’t know. But there is a question to be investigated here.

  • Jill,

    Thanks for the note. I don’t think that psychiatric drugs are the only reason for the rise in disability. I think the disability numbers serve as a marker of how our drug-based paradigm of care (and liberal diagnostic boundaries) are increasing the burden of “mental illness” in our society. There are many people, as comments here attest, who may have been prescribed a benzodiazepine, an antidepressant, or some other psychiatric drug, and then years later, find themselves struggling in a way they never had before (and with multiple problems.) The disability data is a marker, I believe, for that larger unfolding tragedy.

    And of course ADHD awards are part of this rise too. They show up in the development disorders category.

    I should note, however, that this continuing rise in disability due to mental illness is coming even though it is becoming increasingly difficult, at least upon first application, to get an award for SSI or SSDI. In 1992, for instance, 47% of initial applications for SSI led to an award; that number has steadily decreased in and in 2012 was 27%. Award rates for SSDI applications have similarly declined.

    Given that there are many who leave the SSI and SSDI rolls each year (with death one primary reason), and given that it is becoming more difficult to get on one of these two programs, it might be expected that the increase in the number of those on disability due to a psychiatric disorder would level out (or perhaps even begin to climb.)

    My general point though here is that these rising numbers of people disabled by mood disorders, with other countries experiencing rising disability rates due to mood disorders in the Prozac era, is evidence of a failed paradigm of care, that needs to be dramatically rethought.

  • This is a very important, very good deconstruction of the latest version III of the dopamine hypothesis. I have heard from a number of people in the past two years, including psychiatrists and others who are wary of such claims that there is pretty good evidence for this new version of the dopamine hypothesis. I hope this post gets wide readership.

  • I think some commenters here are missing the central point. CCHR has its own forum for criticizing psychiatry. Fine. So does Scientology. Fine. But, on this site, there is a political reality here, and the truth is that mainstream psychiatry has used Scientology as a convenient tool to delegitimize all criticism. That is what I am protecting Mad in America from, plain and simple. I don’t want to give anyone the chance to use that tool against this site (and me personally.)

    E. Fuller Torrey raised that flag when I wrote Mad in America, writing that it seemed to be a book written by a Scientologist. Anatomy of an Epidemic was recently translated into Swedish, where the very first review–quite vicious, I must say–raised the Scientology criticism. That is a code word to a larger readership, telling them not to worry about the criticism, this writer has no credibility, and the people who use it in this way know it is.

    So ,that’s the political reality. From my point of view, Mad in America has to be able to respond to such charges (slander really), and this is the only way to do it. And to deny that reality, and say that it is absurd to want to protect MIA from that charge, is to be politically naive.

  • For the record, relating to what Jonathan Keyes writes here, I don’t know of MIA “bloggers” who have connections to CCHR. I believe that one blogger, Sheila Matthews, was given an award by that group, but that is it for our regular bloggers. And while we have tried to make Mad in America a forum for people writing from a lot of different perspectives and experiences, we wouldn’t accept, as a regular blogger, anyone who was part of CCHR. To do so would be to open the entire MIA blogger community to the charge, so often used by defenders of the mainstream, that critics of psychiatry are “Scientologists.” If there is a fundamental principle that drives “critical psychiatry,” in a way that really opens up the debate, it is this: if you review mainstream psychiatry’s own literature with a critical eye, it doesn’t support the story mainstream psychiatry has been telling to the public. Their own data calls out for rethinking psychiatry. If any taint of Scientology gets into that criticism, it harms the impact of that criticism, and for that reason, we have sought to keep MIA bullet-proof against that criticism.

  • I thought about this question–of MIA’s purpose, this blog, and the comments here–more last night. I think it is worthy of thinking about in some depth, and I may write about it at greater length in a blog. But a couple of things I think are important to consider.

    a) When I wrote Mad in America, one of the things I came to understand was that histories of psychiatry are typically written from the viewpoint of the “treater” and that the voice of those who have been treated is so often absent from such histories. And thus, as a journalist writing a book, I thought it was essential to incorporate this voice–and this perspective–into Mad in America. In many ways, that book looks at history, at least in large part, through the eyes of those who have been treated, and their experiences and perceptions of such “treatment.” It is a perspective born of an experience that needs to be known and heard.

    b) One of the purposes of this website is to incorporate that voice, and that perspective, into a larger discussion, and to make it known. That is the key here, to make it known to a larger audience. That is something worth preserving, for this site to nurture a discussion that doesn’t chase a larger audience away. If the larger audience is chased away, then the site becomes a smaller place, and it becomes a place where perhaps people will “speak truth to power,” but there will not be a larger audience to hear that voice. And that is a loss.

    c) It is also important to realize that the stories told by biological psychiatry, about chemical imbalances in the brain and the such, were also told to young psychiatrists and other providers. In essence, they too were betrayed by this storytelling. And when Daniel writes, “they’re not talking about helping people get their lives back in order; they’re talking about killing them — sometimes quickly, sometimes slowly, sometimes physically, sometimes psychically—with nonbiological agents such as chemicals and electricity and force,” who is the “They” here? Who are these malevolent people, with evil in their heart? All providers? All psychiatrists who were trained to believe in chemical imbalances and the such? He is condemning a broad swath of people, assigning a motivation to this broad group of people that is unfair and wrong. It becomes a rhetorical device to assign evil intentions to the “other” group, and it does shut down discussion.

    d) Many of the commenters here are writing about the need to speak “truth to power.” I agree. There is always a need to speak truth to power, in all arenas of life. But in order for that speaking out to have some potential to change things, and to be heard, it has to be delivered in a manner that resonates with a sense of moral authority and clarity. Think of Martin Luther King speaking truth to power. He powerfully told of great wrongs and harm, and we all understood that he was speaking a truth. But he didn’t rely on demonizing the “other” to speak such truth.

    I understand that there are diverse opinions on this matter. But I thought it important that readers understand my thinking, and why I want to nurture a discussion on this website that can attract a larger pool of readers, and, in essence, my own thoughts on how it is best to “speak truth to power,” in a way that can be effective.

  • I have to confess that this post raises this question for me: What is Mad in America supposed to be about? What is our mission? I speak about this on a video you can find on this site, but I think the bottom line is this: MIA is designed to be a forum for rethinking psychiatry, and as part of that mission, we of course want to make sure that we include the voice of those who have been “treated” and have felt harmed by that treatment. At the same time, I don’t think MIA can be a forum for rethinking psychiatry, or a “critical psychiatry” forum, if it demonizes psychiatrists in some broad-based way. I agree with Sandy Steingard here; I think this post does ultimately serve to shut down the discussion we are hoping to promote here.

    I also have to confess that Sandy is one of my favorite bloggers, and for this reason: You can see in her postings an openness of mind, of her struggling to make sense of science, of faulty teachings of psychiatry, and also how to best be at the service of her patients. There is a humility in her writings, and I think we can all learn from that.

    I say this even as I can understand Daniel’s frustration with biological psychiatry’s pronouncements. it reminds me of a phrase written by John Modrow, in his book How to Become a Schizophrenia. How then are we to help “schizophrenics?” he wrote. “The answer is simple. Stop the lies!” Daniel is responding to that sense of outrage.

    So this isn’t easy. But I think MIA needs to be a forum that strives, at every moment, to encourage dialogue, and to be a forum where people can come and see their own thoughts changing. That isn’t easy, but I think it is something we all need to think about: How can we best promote such a place for dialogue?

  • There are a lot of good points here. A couple of notes.

    a) As for the Harrow study, this latest study is one of many he has written reporting his outcomes. As B (above) notes in his comment above, Harrow looked at different prognostic factors, and concluded that controlling for them, he still found more psychotic symptoms in the continually medicated patients. Moreover, and this is key, it isn’t that the off-med group at year two is doing much better than the medicated patients on psychotic symptoms, they are roughly the same. What happens is that the off med group, which is doing little better than the medicated group at year two, gets much better from year 2 to 4.5. You are seeing a healing process there off meds that you don’t see in the continually medicated group. Furthermore, if you look at his earlier studies, he found better outcomes in every subset of patients (grouped by prognostic factors) in the patients who were off neuroleptics. So his study, standing alone, is one data point, and it says this: over the long-term those taking neuroleptics were much more likely to have persistent psychotic symptoms.

    b) Second, the point I was trying to make in this post is that the Harrow data doesn’t stand alone. It is a data point in a long line of data points, which tell a consistent story. The hypothesis that the drugs cause a dopamine supersensitivity that increases biological vulnerability to psychosis arose thirty-five years ago (in response to other clinical studies,), and the Harrow data is consistent with that theory. That is the point. It is all telling the same story, and that is where this conclusion comes from: the pieces of the puzzle fit together.

    c) As for the WHO studies, that is another data point, and yes, as noted above, the 15-to-20 year data are quite compelling, showing better long-term outcomes in places where people weren’t regularly maintained on neuroleptics.

    d) Finally, in terms of the burden of proof, remember it is the responsibility of those doing a medical intervention to show that it is efficacious. It isn’t enough to simply criticize the many, many studies that tell of worse outcomes associated with continual neuroleptic use; the providers need to point to studies that show the drugs improve long-term outcomes. They admit they have no such studies. So what you have here is this: a consistent body of studies, of many times, stretching across 50 years that tell of drugs that impair long-term recovery, and even increase psychotic symptoms. You don’t have any that show the opposite.

    And that is why I think we can fairly say that the fat lady has sung on this topic.

  • Jonathan and Corinna,

    Jonathan, In a sense, I think you provided an eloquent reply to your own quibble. Yes, science comes within a cultural context, and the use of the word science may obscure subjective judgements being made (what is to be deemed helpful, etc., this was one of the questions I was interested in when I wrote Mad in America, what were the values present that enabled psychiatrists to deem say “lobotomy” as helpful.) But I do think that there is an approach to trying to know the world, which you have described as “scientific inquiry,” that has proven to be illuminating in many facets of human life, and that is what I meant as practice guided by “science,” i.e, that practices are informed by scientific inquiry.

    When applied to the use of psychiatric drugs, such scientific inquiry would want to investigate how the drugs affect the brain over time, how they change the brain, what happens during tapering, and a full inquiry into how the drugs may shape lives. As for the understanding that comes from “randomized clinical trials,” which are so reified in medicine, it is easy to argue they can obscure, rather than illuminate, partly because they may so narrow one’s focus (and partly because they can be easily designed to tell a story you want to tell.)

    All of which is to say that your comment, asking what we mean by science, is a good one, and your response, defending “scientific inquiry,” is an even better reply.

  • In response to registeredforthissite,you have linked to the right study. However, the conversion rate stated in the abstract, of 5.4%, is the cumulative rate for all 87920 patients that were studied, both those who took an antidepressant and those who did not, and over a period of 41 weeks. In the results section of that paper (page 775), the researchers reported that “the conversion rate among antidepressant-treated patients (7.7% per year) was 3-fold that among unexposed patients (2.5% per year.)” All of those who converted were subsequently given bipolar diagnoses.

    That figure can produce an easy calculation of how antidepressants increase bipolar diagnoses. For every one million people diagnosed with “an anxiety or nonbipolar mood disorder” who are treated with an antidepressant, 77,000 will convert to bipolar per year, whereas only 25,000 would have converted if that group of one million had not been treated with an antidepressant. So you end up with 52,000 more bipolar patients per million people treated.

    The point is this: While those who convert may have some underlying vulnerability to “mood instability,” many would never have converted if not exposed to an antidepressant. When psychiatric researchers say the drug is just unmasking an underlying bipolar disorder, in people who were misdiagnosed, they are ignoring this differential conversion rate.

    I should note that Fred Goodwin, who is considered an expert on bipolar, has even written on how antidepressant-induced mania can “create iatrogenically a bipolar patient,” and that when this happens, “that patient is likely to have recurrences of bipolar illness even if the offending antidepressant is discontinued.”

    Finally, Ross Baldessarini and Giovanni Fava recently published a paper on this risk in children and adolescents, through a review of reports of antidepressant trials for depressive and anxiety, and they concluded that even in the short term trials, “overall rates for mania or hypomania were 8.19% with [antidepressant treatment] and .17% without antidepressant treatment, with large drug/placebo risk ratios among depressive and anxiety disorder patients.”

    The data, in my opinion, is quite convincing: Antidepressants increase the risk that a person with depression or anxiety will suffer a manic episode and be diagnosed with bipolar, and thus widespread use of SSRIs is helping fuel the bipolar boom.

  • In terms of SSRIs fueling the bipolar boom, the relevant evidence can be summarized in this way:

    a) Has the frequency of this diagnosis increased dramatically in the past 25 years? Yes (and the dramatic increase in diagnoses of pediatric bipolar is well documented.”

    b) If you look at the disability data, the Social Security now provides data on disability by diagnostic categories (as opposed to just mental disorders), and it is disability due to bipolar (and depression) that is driving rapid increase in disability due to mental disorders.

    c) Next, there is substantial evidence that SSRIs increase the risk that an adult diagnosed with unipolar depression will turn manic and thus be diagnosed with bipolar disorder. Yale investigators reviewed the records of 87,290 patients diagnosed with depression or anxiety between 1997 and 2001, and determined that those treated with antidepressants converted to bipolar at the rate of 7.7 percent per year, which was three times greater than for those not exposed to the drugs. This conversion risk was highest in teenagers.

    d) If you look at the gateways to bipolar, SSRI-induced mania is a primary one. For instance, in a survey of members of he Depressive and Mani-Depressive Association, 60 percent of those with a bipolar diagnosis had initially fallen “ill” with major depression and had turned bipolar after exposure to an antidepressant.

    If you put all that data together, you can quite clearly see that when a society adopts widespread use of SSRIs, that that use can be expected to stir a dramatic increase in the number of bipolar patients. (I just looked at this data for Sweden, and there has been a marked increase in bipolar there during the last 10 years.)

  • Steve, that Canadian study you are talking about (1999) found that 9 of 96 youth treated with a stimulant for an average of 21 months developed psychotic symptoms. And as you say, the dopamine hypothesis arose in part because of the fact that stimulants, which up dopamine levels, at least transiently, can stir psychosis. There is something more I am talking about here, which I am hearing more about, and that is how long-term stimulant use may carry the risk of not just triggering a psychotic event, but carry a risk of causing some long-term changes that in turn increases the risk of being diagnosed with schizophrenia. That is what I don’t think has been studied, the risk of that occurring over the long term.

    ANd Nick, as for Szasz, I agree with what you write here about what a “myth” is. My point here, in responding to Videbech, is that he is trying to use Szasz as a way to immediately discredit me with readers, as if I am writing from that perspective. And here is the relevant point: What I do in Anatomy is basically go through the scientific literature with this understanding: okay, psychiatry says it can group psychiatric symptoms into these various categories (schizophrenia, depression, bipolar, etc.) Based on its own literature and its own outcome measures, do its treatment improve outcomes over the long term. And Videbech, by raising Szasz, is trying to avoid that essential fact about Anatomy, that it is a review of the story told in biological psychiatry’s own literature.

  • Ted, yes that is in Anatomy of an Epidemic. It is quite clear that there is a risk that a child or adolescent treated with a stimulant or an antidepressant will show increased mood instability that will lead to a bipolar diagnosis. When Yale researchers investigated the risk that an antidepressant could stir a manic episode, they calculated that risk according to age, and it was highest for those around 13 years old. Anecdotally, I am now hearing of another risk, and that is how often youth admitted for a first psychotic episode have been on a stimulant for some time. There is a known risk that stimulants can cause a psychotic episode, but this seems to be another nuance to that risk, in which you have had someone on stimulants for many years, and then comes the psychotic episode. But the evidence for this, at this point, is anecdotal in kind, and I haven’t seen it reported on in a study.

  • My publisher in Denmark asked that I write a response to the review. Here is what I wrote:

    To: (Book editor):

    I have read Poul Videbech’s review of my book, Anatomy of An Epidemic, in Today’s Medicine, and I have to confess, I am not sure I have ever read a more ill-informed—and just blatantly dishonest—review of any book in my life. It surely is not about the book I wrote.

    First, what is Anatomy of an Epidemic actually about?

    In this book, I start by raising a basic question: Why, in this era of increased use of psychiatric medications, are we seeing such a sharp rise in the number of disabled mentally ill? For instance, in the United States, the number of adults receiving a disability payment due to mental illness rose from 1.25 million in 1987 (the year that Prozac was introduced) to 4 million in 2007. Similar rises in disability have been seen in country after country during the Prozac era—Australia, New Zealand, Iceland, U.K., and Denmark, for instance.

    Once those numbers are presented, I state this: We know that many people are helped by psychiatric medications, particularly over the short term. But how do the medications shape the long-term outcomes of people diagnosed with major disorders like schizophrenia, anxiety, depression, and bipolar disorder? Do they improve the likelihood that people will recover and function well over the long term? Or do they, for some reason, increase the likelihood that a person will become chronically ill, and thus increase disability rates?

    As I seek to answer those questions, I do so in a very simple way: What does a thorough review of the scientific literature reveal?

    As part of that review of the scientific literature, I first look at the chemical imbalance theory of mental disorders. I review the reasons it arose, how it was investigated, and how, starting in the early 1980s, researchers began concluding that this was a hypothesis that wasn’t panning out. For instance, people diagnosed with depression were not found to have a deficiency in serotonin, at least not prior to their being medicated. I then reviewed research into how the brain is changed by psychiatric medications, and why that compensatory change might prove problematic over the long-term.

    Next, I review the outcomes literature for the different diagnoses, from 1960 until today, and that literature tells a consistent story: on the whole, psychiatric medications do increase the chronicity of major mental disorders, and increase the risk of disability. This is even true in schizophrenia: in the only long-term prospective study conducted in the United States, the recovery rate for those who stopped taking antipsychotics was eight times higher over the long-term than for those who were medication compliant. A recent randomized study conducted in the Netherlands also found a higher long-term recovery rate for those who were tapered down to a very low dose or were able to stop taking the antipsychotic altogether.

    Now, in response to a few specific points in Videbech’s review:

    • Dr. Videbech says that it is old news that the chemical imbalance theory of mental disorders never panned out. In a sense, he is right: researchers were drawing that conclusion in the 1980s. But I am pretty sure that psychiatry, in the United States, in Denmark, and in numerous other countries, failed to tell that finding to the public. Instead, the public was informed that these drugs were “like insulin for diabetes.” For that reason, it is hardly “old news” to the public.

    • Dr. Videbech suggests that I believe that it is “possible that schizophrenia does not exist.” Here, he is trying to tell readers I am writing from an “antipsychiatry” perspective, or that I believe that—a la Thomas Szasz—that I believe that mental illness is a “myth.” In fact, what I write about is how Emil Kraepelin’s initial conception of schizophrenia was confounded by the fact that many of the patients he studied were almost certainly ill with encephalitis lethargica, a viral illness that had yet to be identified. Once that illness was identified, the presenting symptoms of patients diagnosed with schizophrenia underwent a change, and thus, when we try to identify schizophrenia outcomes prior to the arrival of chlorpromazine into asylum medicine in 1955, we have to look at the reported outcomes for patients diagnosed from 1945 to 1955, as opposed to outcomes for Kraepelin’s patients.

    • Dr. Videbech notes that medical programs in many countries emphasize the importance of getting young people with symptoms of schizophrenia into treatment quickly. I agree that is a good goal, and in the solutions section of my book, I write of a program in northern Finland that is very good at that. But the question remains, what should that early treatment be? In northern Finland, which has the best five-year outcomes in the Western world for psychotic patients, the emphasis is on psychosocial care, and minimizing use of antipsychotics.

    • Dr. Videbech says I claim that antipsychotics “damage” the brain, and that I ignore all of the abundant evidence that people who don’t receive medication have a “propensity for shrinkage of certain brain regions.” Unfortunately, there is evidence that antipsychotics shrink the brain, with this happening apart from any brain shrinkage that can be attributed to the illness. For instance, Nancy Andreasen, the former editor of the American Journal of Psychiatry, has now reported on several occasions that antipsychotics reduce brain volumes.

    • Dr. Videbech says that it is “very rare” that antidepressants cause a depressed patient to switch into mania, and thus move from a diagnosis of depression to a bipolar diagnosis. In fact, this is a well-recognized risk with antidepressants, and it is not “rare.” Researchers at Yale University of Medicine, in a review of the records of 87,290 patients diagnosed with depression or anxiety, determined that those treated with antidepressants converted to bipolar at the rate of 7.7 percent per year, which was three times greater than for those not exposed to the drugs. This is one reason for the sharp rise in the number of people diagnosed with bipolar illness, which in turn is one of the primary reasons that disability rates have skyrocketed in the United States and other countries where SSRI antidepressants are widely used.

    • Finally, Dr. Videbech complains that “there are not many references to scientific studies (in Anatomy); instead quite a number cite newspaper articles and popular science books.” This is an instance where it is so easy to show that Dr. Videbech is just writing nonsense and making things up. For instance, in the seven chapters in Anatomy devoted to reviewing the scientific literature for outcomes, there are 422 citations, and probably 80% are for articles that were published in medical journals.

    Beyond these few specific points raised by Dr. Videbech, most of the rest of his review is just rhetoric. Your readers can decide whether his words are informative, or whether they are—such as comparing me to a “little boy” with no clothes on—really rather juvenile in kind.

  • Yes, Nancy Andreasen is still saying that schizophrenia itself is causing some decline in brain volumes. But here is the key point here, and why we ran a link to this interview: In her last publication, the one referred to here, she so completely obscured the fact that she had previoiusly found declining brain volumes associated with drug usage, that many readers of that article started discounting that association, saying Andreasen had back away from it. I hear this all the time now when I speak–oh, Andreasen no longer believes that to be so. So, from that context, that is the news here, that she acknowledges (again) the drugs do cause this shrinkage. You can see too in this article how she didn’t want to acknowledge this, or even really publish it. That is news here too.

    As for the evidence that there is shrinkage associated with the “disease,” meaning that people so diagnosed have smaller brain volumes, JOnathan Leo and Joann Moncrieff did a very good job of investigating this literature, and what you find is that most of the studies that claim to be of drug naive patients (and thus report smaller brain volumes), are not in fact of drug naive patients, but in patients who have been exposed to the drugs for a brief time. IN the three studies where patients trully were drug naive, they did not show significant brain shrinkage comparable to controls.

    Now, it may be that trauma and other environmental factors that may lead to psychosis and the other “symptoms” that lead to a schizophrenia diagnosis are associated with brain shrinkage. I don’t know. But the real news here, for the field, is that Andreasen is, within the article, acknowledging that the drugs shrink the brain. Maybe that isn’t “news” to many MIA readers, or those who comment here, but it would be “news” to many in the field who believe that Andreasen had backed away from her earlier findings.

  • As i mentioned in an earlier comment, I appreciate these words of support. The larger issue here of course is that what we are talking about here is my speaking about research, often funded by the NIMH, which belies the common wisdom (and as I wrote in Anatomy, ultimately tells of a paradigm of care that, on the whole, increases the chronicity of disorders, worsens long-term outcomes, and so forth. That discussion, or reporting on such information, is what some people want silenced, and they are trying to do so by attacking the messenger, so to speak.

    I just want to respond to some of the questions raised in these comments about how I should proceed in the face of some of the vitriol that has been unleashed, and some of the efforts to keep me from speaking.

    In my talks, mostly what I do is go over the data for a particular class of drugs. I suppose there is an advocacy element to it, because such facts do certainly warrant a change, but my job is to present the information and then hopefully those in the audience will see that the facts combine together to tell a story of science that, in a moral sense, requires rethinking the current use of psychiatric medications. I don’t really need to advocate for that; the facts do so on their own. I am comfotable in that role, which is certainly compatible with the usual actions of a journalist who has written a book. He can be expected to talk about the “facts” that make up his book.

    I had the madinamerica.com website ever since I published Mad in America, and about 20 months ago, I decided that I would turn it into a webmagazine of sorts, one that would, among other things, allow for a variety of voices to be heard (with the one common aspect being that they shared a belief that current psychiatric practices needed to be rethought.) Of course people are writing about human rights, and all sorts of related issues, and I must say, the readers comments both carry the conversation further and help flesh it out. That community aspect is such an important part of the website.

    Now the website may be seen as having an advocacy role ( for change), but I am comfortable with that as a journalist, in the sense of publishing a magazine that brings together information, writers, and voices that collectively make a case for change. The voices are so many on this site, and thus I never feel that I am leading the charge, or even that the website is in any way “mine.” It is a collective activity, and I think most people familiar with the site can understand that.

    I also think that some of the animosity now being directed toward me, or trying to stop me from speaking, is related to the fact that this website is proving to be a gathering place for a larger community of voices, which is being heard in ever larger circles.

    What I am trying to say here is that I have tried to proceed in a way that is consistent with a journalist’s role: In my writings, I speak about research (and as one might do in a blog, draw an opinionated conclusion about the importance of the research), but otherwise I try to keep my opinions to myself. You can’t let attacks like this latest one, and all the spinoff vitriol, change what you do.

  • Of all the things we have tried to do at Mad in America, this issue has been the hardest for me personally. And it is because I personally have conflicting thoughts and feelings about “moderating” commments.

    On the one hand, I frankly would prefer to not moderate any comments. But it became clear to me some time ago that when we didn’t do that, the site lost out in two ways: some readers became fearful of posting comments, and it did end up with some bloggers feeling uncomfortable about writing here.

    But I would like to point out something important. We have created a forum for those who write about human rights, and psychiatric abuses, to make their thoughts, opinions, and experiences known to a wider audience. And why is this important? Because if you want changes in the system, and if you want issues of human rights to gain more traction, then you have to make this voice known to those with more mainstream views. Otherwise, you end up preaching to the choir, so to speak.

    So, one reason for moderating, from my perspective, was not in fact to protect “mainstream authors”. It was to preserve an audience for those who would write about human rights abuses.

    At the same time, there is much to be gained by inviting people to blog here who may start with more mainstream views, but show a willingness to grapple with ideas about how things might be different. Let us imagine, for a moment, if NAMI national got behind the idea that first episode psychosis treated in the manner of open dialogue would be a good thing. Or if NAMI national got behind the idea that people on antipsychotics deserve to be supported and helped in whatever way possible if they wanted to taper from the drugs. If NAMI national were to get behind those ideas, which I am quite confident is supported by good science, then the conventional paradigm of care re the use of psychiatric drugs WOULD CHANGE.

    And I can already see, in the responses to Kathy Brandt’s article and Claire Weber’s, the sense that there could be a dialogue emerge on this site that would help make that possible. And thus, MIA, rather than being just a site for a certain type of voice, could become a site that helps produce real change, of the sort we haven’t seen for a long, long time in this field.I read Kathy Brandt’s article very carefully, for it told of someone who is authentically thinking through things, and wondering what is true. That is a very valuable and interesting perspective to have on our site. Readers can learn from reading that post.

    So, I hope people can see this effort of ours to moderate comments, which is so very difficult, is not motivated by any desire to silence people. It is to preserve a conversation that a) we think help make sure such issues as forced treatment, or the merits of neuroleptics, can reach a larger audience, and b) we also think might lead to real change.

    This is not easy, and as I said, I wish that we didn’t feel a need to do it. But we are doing it in pursuit of a goal that I hope readers will see as worthwhile.

  • I know I combined two topics in this one post. In terms of publicizing the ADHD study, which is really quite powerful, it seems to have generated one or two reports (such as the Globe and Mail column noted above), but nothing in the NY Times. This is one of the big problems, which I wrote about in Anatomy: Studies that tell of disappointing long-term results just never seem to make it into most newspapers. I know that part of the reason is that associations like the American Psychiatric Association or the National Institute of Mental Health don’t publicize the results, and thus newspapers don’t pick up on it. Still, it would seem that newspaper reporters covering medicine and science would pick up on these results more often.

    As for antipsychotics having been called “neuroprotective,” Joanna Moncrieff’s piece alludes to this. In an Eli Lilly study on brain volumes, there was less shrinkage in the brain for those given olanzapine than haldol (although in a second study by the end of a year it was much the same), and thus the researchers came up with this peculiar line of reasoning: the shrinkage was due to the disease, which haloperidol failed to prevent. the fact that there was less shrinkage in the olanzapine patients meant the drug was protective against this toxic disease process. I don’t really know of any other evidence for the idea, but it is still out there, that antipsychotics are neuroprotective in some way.

    What struck me about the Vatican conference was that I was reminded that the Vatican, as head of the Catholic Church, is of course a conservative institution, and a political one, and that even as it agreed to this conference, there would be pressures–organized psychiatry in Italy, the practices at Catholic hospital, and general societal beliefs–that reinforced conventional views, and made it difficult to challenge those views.

    We’ll have to wait and see if anything comes from the conference. The moderators have been writing up their thoughts, and it may lead to a statement by the Pontifical Council. If the statement happened to urge psychosocial treatments first for children, before any use of psychiatric medications, that would be significant.

  • Sandy, this is a great post (and a great series of posts.) I only wish it could be a series that would be published in a place where it would be read by psychiatric residents and those who prescribe the medications today, and that it could provoke a widespread discussion about best practices. But this is a really important exploration of the use of neuroleptics you have written, and I am so proud that it appeared on Mad in America.

  • Hermes, In a sense, there isn’t anything much that is new in their discussion. In essence, what they have done here is review a lot of the data I presented in Anatomy of an Epidemic (supersensitivity psychosis, WHO studies, Seeman’s work, etc.), and having done that, come to the conclusion, which they state in the most cautious manner possible, that these drugs may be worsening long-term outcomes in the aggregate. But what is so important–and why I highlighted it–is that their discussion was published in the Schziophrenia Bulletin. As you may know, there are many critics of Anatomy who have said that this is a nonsensical idea, or that I miscited Harrow, etc., But the fact that the Schizophrenia Bulletin editors published this is evidence that this story–of antipsychotics worsening long-term outcomes–has scientific merit and needs to be discussed. That is what is so important about this publication.

  • Maria,

    I don’t think the open dialogue model of care, or the Soteria model, in any way precludes looking for environmental causes of psychosis (viruses, toxins, other medications, illicit drugs, etc.) In fact, I believe that good medical care would start by assessing whether such triggers could be present and causing the symptoms, and if triggers were found, then you would incorporate into any treatment plan. The reason that I may seem to be “advocating” for an open dialogue approach is simply because they have the best reported outcomes in the western world, and I would think we could all agree that a paradigm of care that helped a greater percentage of people get back to work and school., and do so in the absence of antipsychotic drugs, with all their possible adverse effects, is one worthy of knowing about.

    There is also no reason that an open dialogue approach would preclude an in-depth physical and assessment for the type of factors you mention. In general medicine, that used to be called taking a case history (which was a starting point for all types of medical care), and then somehow it often got lost in modern psychiatric practice.

    So I surely am not advocating for a paradigm of care that would ignore such assessment, and response to it.

  • Yes, Philroy is correct here. I really wasn’t focused on prevalence of mental disorders at all, and in that sense, the title is imprecise. I was looking at the soaring number of people on disability due to mental illness (that’s the epidemic), and then looking at why that is so. And that leads to two questions:

    a) how do medications shape the long-term course of major mental disorders (science shows that they increase the chronicity of disorders)

    b) Is it possible that use of psychiatric drugs is creating an epidemic of bipolar illness (i.e. transforming depressive episodes into chronic states, etc.) The answer again, which we can see from a review of the science, is yes, that is clearly the case.

    So Philroy is right: that’s the real crux of the book, and not prevalance numbers.

  • I remember I was startled by this relative lack of even short-term efficacy when, in 1998, I used a Freedom of INformation Request to get the FDA reviews of the clinical trials for olanzapine and risperidone. The drugs’ advantage over placebo was small on these scales, and that was so even though the placebo group wasn’t a true placebo group at all, but rather patients who had been on neuroleptics and then were abruptly withdrawn from them.

    Another question that needs to be asked: When do neuroleptics show even this limited efficacy in these short-term trials? At two weeks, four weeks, or six weeks? I remember one report that studied this concluded that it all depended on the length of the short-term trial. If it was two weeks, then the researchers concluded that the efficacy showed up at that time. If it was four weeks, then there wasn’t much efficacy over placebo at two weeks, but there was at the trial endpoint (at four weeks.) And so on. At least in that report, the conclusion seemed to be this: When researchers running a drug trial wrapped up the study, and were making their endpoint observation, that was when they were most likely to see that the drug worked.

    Also, in these studies, the researchers of course can pretty easily tell who is on a neuroleptic and who isn’t, and so they aren’t really double-blind either.

    Finally, that was one of the key findings in Loren Mosher’s Soteria study. At the end of six weeks, psychotic symptoms had abated as much in his Soteria subjects, many of whom hadn’t been placed on neuroleptics, as those treated conventionally in the hospital with the drugs.

  • I have the same question, of whether they were treated with SSRIs. This seems like a low conversion rate from depression to bipolar, compared to other studies of conversion rates for depressed patients. It would be interesting to see the medication usage.

  • Let me see if I can respond to the comments here.

    First, in response to Michael and others, yes, there is other data that is relevant to this question of: Are the drugs to blame. Bola’s work focuses on randomized studies that followed patients for at least a year or so, and his findings shows that the medications–in those randomized studies–do not improve outcomes (and if anything the outcomes favor the unmedicated patients.) Those studies were one to three years, if I remember, and so at least they in a small way support the data showing up in Harrow’s much longer study.

    There is other evidence that can be found, including data from the WHO studies, animal studies, etc. This in fact is why I think the data is so compelling: If you understand this history of research, bringing in all the different types of data you can find, you would expect that the medicated patients would do worse overa 20-year period.

    As for the way Harrow’s data has been attempted to be explained, that this is just a matter of patients with a better prognosis, his own data belies that explanation. As I mentioned, in every subgroup of patients, those who got off did better. Bad prognosis patients off meds did better than bad prognosis on meds; good prognosis off meds did better than good prognosis on meds; those with milder disorders off meds did better than those with milder disorders on meds; and most notably of all, those with schizophrenia off meds did better than milder disorders on meds. So in fact his data shows that those with A WORSE PROGNOSIS at initial entry into the study who then got off antipsychotics had a better outcomes than those with a BETTER PROGNOSIS who stayed on the drugs.

    Finally, most of those off meds did in fact leave the system and got no mental health treatment. And it would be interesting to see if that process itself, just getting out of the system, can lead to a positive outcome for some, as the people no longer accept the “patient” role.

  • This is in response to SMG’s comment above. As we move forward, we expect to have bloggers writing about innovative programs they are involved in that do offer alternatives to present-day treatment options. So that is certainly on the drawing board, and I hope, that as people write about such options and programs, they will detail documented outcomes, etc. The Recovery Stories section is also designed to be a place where people can tell what has helped them, and those that have found medications to be helpful, can write there too. But ultimately that is the goal, to discuss and bring forth information that can tell of a better way.