Showing 100 of 146 comments.
That was my use of that term, Oldhead, not Peter’s.
Based on some of these comments, I think there is some misconception about the nature of this study by Harrow. It was a naturalistic study, and Harrow had nothing to do with the “treatment.”
People who were “psychotic” were treated in the hospital with antipsychotics (conventional treatment.) They were discharged and then Harrow and Thomas Jobe simply followed up with them periodically for the next 20 years (followups were at 2 years, 4.5 years, 7.5 years, 10 years, 15 years and 20 years.) Some people stopped taking antipsychotics during the first two years, and other kept on taking the drugs. All Harrow did at the two year follow-up was report on this medication use, and he did so at each of the follow-ups.
What he found, when he analyzed his followup data at the end of 15 and 20 years, that those patients who, for whatever reason, had taken themselves off antipsychotics by the 2-year follow-up (many may have stopped soon after being discharged from the hospital, and thus only been on antipsychotics for a short time) had by far the best outcomes over the long term, and many who had stopped using antipsychotics by year two never took the drugs again. Among the people who were still taking antipsychotics at year two, many may have taken themselves off the drugs by some later date, at least for a time. But what Harrow found was this: the best outcomes by far were those who had stopped taking the drugs at the two-year followup. So what you see in this naturalistic stud, which means Harrow was simply studying people who were diagnosed with a psychotic disorder and treated conventionally in the hospital by hospital staff and seeing how they fared over the long term.
There was no protocol that called for anyone to go off the drugs by year two. Harrow just observed stark differenced between the long-term outcomes between those who had rejected the antipsychotics by year two, and those who were medication compliant during the study.
Cabrogal, No we are not selecting posts in order to wind up our readers. yes, we have a policy of respecting the voices of lived experience, which of course means that many will express different opinions, including about topics as controversial as Kendra’s Law.
You will note that not long ago we ran a two-part series on AOT, which was our own reporting on the matter, and among other things, we noted how it is not “effective” in achieving its stated goals.
Jenny, thank you for writing this. As the other commenters have written, such an important article. I encourage you to write further posts about this movement, which, in my opinion, should be understood as part of a larger struggle for civil rights in the United States. This history should be taught in U.S. history classes and texts.
That list grew so long it became unusable. Plus we switched how we handled new writers for software reasons.The best way to see an individual’s blogs is just to put their name in our search engine. For instance, I just searched Richard Lewis, and this page turned up: https://www.madinamerica.com/?s=richard+lewis, which has a long list of your writings on MIA
Your browser should give you the option to read in English
See reply above to Cabrogal.
Family and friends may recommend someone to the show, but the show then asks the person if they want to be on the show–the person, as you can see in the piece, is expecting the Fab Five to come and help them “remake” their lives. They give their consent.
We were curious if the transformations depicted on the show were “real” to those who experienced them, and lasted. So we interviewed a number of people and you can read what their thoughts were here. So what the story does is this: It asks people who consented to being on the show what it was like for them (and they could have said it was horrible, but they did not,), and we asked them whether it had changed their lives, and in what way. So we were honoring their experience, whatever it may have been. I would think readers could see that as well and that’s the journalistic ethic on display here: there is a popular tv show that presents transformation in people’s lives, and we wanted to know what it was like for them. If they had said it was miserable and exploitive, we would have reported that. But that’s not what our reporter was told.
That’s the key here, which I think readers could understand: We are seeking to know the experiences of people who have been on the show, and honor them. I would hope readers could read this piece with that understanding in mind.
Listen, arguing over the political response to coronavirus is beyond the scope of this review. There are plenty of internet forums where people can argue the politics, and so I am asking Steve, our moderator, to shut off comments now.
I appreciate these comments/criticisms regarding this post.
First, re Phil Hickey’s blog. We didn’t remove his blog because of its general content. We temporarily removed it because we had put up an image that we felt violated our own standards, and because there was a section of content in it that we also felt violated one of our standards re personal criticisms. We asked Phil if we could then republish with a new image and that one part omitted, and he declined, and so we then forwarded readers to his own blog. We regularly publish Phil’s writings, and any error was on our part prior to its initial posting here.
I think the criticisms regarding our publication of this post on Mind Medicine Australia are worth airing and considering. You’ll notice they weren’t moderated, which is evidence of how we think MIA should be open to criticism. After some discussion, and actually a fair amount of editing, I decided we should publish it for the following reasons: it was registered as a charity, there is ongoing research into these medicines (which would seem to make it a worthwhile subject), Mind Medicine is sponsoring research), and it does have an advisory board that includes medical people. We have also received complaints in the past from readers that we have been “hostile” to psychedelic therapies. Thus, we saw this post of some interest within our standard of allowing for posts of disparate perspectives.
That said, criticism of the commercial interests are worth noting, and I appreciate this feedback.
Kindred Spirit: If you were pushed to take Saphris in 2008, it would have been before it was approved for use. What happens is that after a company finishes its actual RCTs for NDA purposes, it then begins doing extension trials, which are unblinded and meant to show that the drug can be taken “safely” for longer periods of times. In this instance, there were so few people who were actually enrolled in placebo controlled trials that there was very little “safety data” with robust numbers of patients exposed to the drugs. So they ran these unblinded studies to get the exposure numbers up, which helps make it seem the drug has been throughly tested. And it meant a drug company payment to the psychiatrist who was trying to get you to take Saphris.
People can identify themselves as they wish on the commenting section. They can participate in this discussion, as most everyone knows, with whatever name they wish.
As for personal stories, their power comes from the fact that the authors stand up and say, this has been my experience, and this is who I am. We want to be a forum that lets society hear and know these stories, and often they are stories that tell of suffering and of loss related to psychiatric care.
Anonymous stories do not have that impact. Readers just don’t know — emotionally — if the stories are real. And people who submit their personal stories are making a decision to tell their story in that public way. As Miranda wrote, we’ve made exceptions to this standard on occasion, but for eight years now, we have published personal stories, and if you go through this archive of stories, I think the authors have created a public voice of truth-telling that, at least in its quantity and breadth, is unequaled.
Sera, if you search for racism on madinamerica you’ll fine like 200 links to articles on our site, and if you search from racism & 2020, you’ll find about 15 to articles that pop up. Most of that is content generated by MIA: reviews of research related to this subject, interviews and so forth.
One added note: If anyone is interested in my personal writings on this subject of systemic racism, please read my non-fiction book On the Laps of Gods. (It was initially titled 12 Condemned to Die, but changed during the publication process.) It is a book about the massacre of sharecroppers in Arkansas in 1919, and the subsequent mass arrest of leaders of a sharecroppers’ union. The legal struggle to free the 12 men condemned to die led to a Supreme Court decision that served as legal foundation for the Civil Rights movement.
There are two issues here, in these comments, re MIA. The first is our mission. We have never had in our stated mission the word “reform.” From the start, MIA was a forum for “rethinking” psychiatry, which opens up many possibilities, and we have always provided a platform for writers who argue for abolition. Think of Bonnie Burstow, for example, who wrote here often. We mourned her loss when she passed. I should note that I also offered Oldhead that he could write a blog post, but he would have to use his real name. He declined.
Here is our stated mission:
Mad in America’s mission is to serve as a catalyst for rethinking psychiatric care in the United States (and abroad). We believe that the current drug-based paradigm of care has failed our society, and that scientific research, as well as the lived experience of those who have been diagnosed with a psychiatric disorder, calls for profound change.
The point is we are not saying what the change should be. We are a forum for a larger community to express their thoughts on what that “rethinking” should lead to. Although I write posts here related to science reports, etc., I never write general “opinion” pieces. In fact, you will see very few opinion pieces that have ever been written by MIA editors in our seven-plus years.
We are also a forum for the “comments” of our readers who can weigh in on this “rethinking” mission. And I should note that it is in this comment section, with some regularity, where readers of MIA are reminded of MIA’s flaws, and my personal shortcomings. We also have posted may blogs that are critical of MIA (such as this one by Sera). I believe that such criticism is evidence of the ‘open-mindedness” of our site, which is a quality that should exist in any forum devoted to “rethinking” psychiatry. Oldhead regularly expresses his disdain for me and MIA, and yet here he is, a regular presence in the commenting section.
The second issue, which I think is a relevant one, is the makeup of our “staff.” The word staff here is actually a bit grandiose. We only have three people who receive a weekly salary (and not even full-time). We also have a “socialist” pay structure, where everyone–the three on “staff” and the others who contribute on an hourly basis–is paid the same (and not particularly well.) For my part, in interests of transparency, I put in funds at the start of MIA and worked without any pay for six years. The other two on staff currently are our blogs editor, Peter Simons, and Miranda Spencer, our personal stories editor.
The largest number of “staff” you see are the science writers, which is a team of contributors that originated a Ph.D. psychology program at UMASS Boston. We have had, and still do have, a few members of the team who are “non-white.” That said, it doesn’t negate the criticism voiced here about the lack of diversity at MIA.
I do think in terms of our content, you will find a number of articles, interviews, and blogs that focus on racism in our society, and particularly how such racism intersects with psychiatric practices. It is not a subject, as meremortal writes, that we have ignored.
However, the bottom line is this: I think MIA’s failure to have diversity in its board and its staff, with the exception of several of our contributing science writers, is indeed exactly that . . . a failure, and I am glad that it was publicly pointed out. We can always strive to remake our organization too.
The Goldwater Rule is rooted in an understanding that a psychiatrist can speak out if they have made a personal examination (and have consent.) It is rooted in an assertion that psychiatric diagnoses are in fact valid. The Goldwater Rule is an instance of a guild asserting its medical authority (in my opinion).
Kindred Spirit: There have been thousands of opinions expressed about Trump that have no “objective measure.” The New York Times is free not to publish anything written by Lee, and so is the rest of the press. They are free to ignore her. But I don’t think the public is served when the press supports the suppression of opinion by a guild. The guild can criticize Lee if it wants, but you shouldn’t have the press taking its walking orders from the American Psychiatric Association. Why should the press care about what rule a guild makes regarding who can and can not offer opinions about a public figure? It’s okay for Lieberman to write in the New York Times that Trump is a jerk, but not okay for Lee to write that Trump is dangerous?
Also, I don’t think the Goldwater rule even applies here — they weren’t diagnosing him with a mental illness.
I find it a bit hard to understand why a community whose voices have so long been unheard, silenced by psychiatry, with people said to be unreliable witnesses to their own lives, would now welcome a guild seeking to silence others for expressing their opinions about Trump. I repeat myself, but I personally am against powerful institutions seeking to curb public debate about such a topic as a president’s fitness. I don’t think the media should be doing the wishes of the American Psychiatric Association in regard to public debate about the president’s fitness.
Do you really want a guild that prevents criticisms of a president? Really? It’s not about whether Trump is dangerous or not. The public can weigh in on that. The authors here also weren’t diagnosing Trump with the DSM. Nor are they weighing in on dangerousness in a legal setting. And they weren’t weighing in on whether Trump is sane or insane. It’s about the assertion of power that limits public debate.
Indeed, this article is about the New York Times throwing its prestige and weight behind a power play that does silence one group seeking to weigh in. Should columnists be silenced? Should ethicists be silenced? Nobody has to agree with what Lee and colleagues wrote; but to think that psychiatrists can’t weigh in with their thoughts about whether a president is dangerous?
If you think psychiatrists should be muzzled, then you believe in muzzling criticism of a president.
The APA and psychiatry as an institution have successfully “muzzled” critiques of psychiatry within the mainstream media, e.g. critiques regularly voiced in these pages. Is this a good thing? Maybe we should commission a piece that congratulates psychiatry, as an institution–and yes Lieberman too–for being so successful in keeping critiques of psychiatry out of the mainstream media.
This was unbelievable, and yet all too common. We decided to make it an Around the Web because it was notable that the Times ran an obit. But then to solicit a comment from Ed Shorter, who in his history of psychiatry likened the arrival of antipsychotics to the arrival of antibiotics in infectious medicine, and then print his hateful comments was just such bad journalism. And of course revealing; you can be sure that if E. Fuller Torrey were to pass, the Times wouldn’t solicit comments from say David Oaks about Torrey’s work (or from anyone associated with Mad in America.)
I was personally sickened by this, and intend to write a short piece about it, as soon as I get time. Hopefully later today or tomorrow morning.
As you know, your original draft was quite long, and it went through several iterations with our editors. We didn’t change your title, as you can see. The piece is called “The Day I Became Schizophrenic.” In an early edit, there was a slight change made for clarity purposes in a sentence, which was the addition of “I don’t” in the sentence below:
Assuming, of course, that you believe in “schizophrenia” at all.
I don’t. Schizophrenia, to me, is nothing more than a word…
Moreover, that edit was made in an early draft, and you okayed the publication of this piece. You wrote go ahead and publish if I said it was okay, and I thought it had ended up quite good.
Our editors spent a lot of time on this piece. But given that you have written this comment that trashes one of our editors, I think it is appropriate to correct the record.
Look up the hospital on the website, and contact them through there. They have had patients from outside Norway, but of course those patients are private pay. https://incita.no/
Thanks for these comments. Rosalee, Re diagnosis: The “patients” may arrive with a diagnosis, because they are arriving from a public mental health system. But they aren’t being viewed through a diagnostic lens.
Also, the user movement thrives in Norway, and We Shall Overcome is one of the oldest psychiatric survivor groups in Europe, and perhaps the oldest of any group still active today. One of their members works there now, and as I wrote, this is the place that when one of their own members had need for a respite/hospital, this is the one she fought to come to.
My point is that the User Voice, which includes the psychiatric survivor voice, is very much present at this place. White Eagle is a small user group that also very much has a psychiatric survivor perspective.
Thank you all for your comments, your encouragement, and for your support of MIA. At a community level, this is a David and Goliath struggle, but David, so to speak, is making progress.
Oldhead, you know you are deliberately misreading what I wrote. This is how psychiatry, as an institution, responds to criticisms . . . it’s a rhetorical device they use to delegitimize criticism by saying it arises from a biased perspective. It’s a point about how psychiatry avoids dealing with legitimate criticisms.
Beyond that, I am not going to respond. This is such a gross mischaracterization of what I wrote, and you know it to be so. And then, having grossly mischaracterized what I wrote, you then call it offensive.
I am tired of this, I have to say.
Our Media Watch should not be confused with the politics of Trump’s “fake news” comments.
The problem here, with the media’s interviewing of Williamson, is that this shows how psychiatry, as a guild, together with the pharmaceutical company, told to the press a false story about chemical imbalances and so forth, which by and large the media bought. Our goal here in this particular report was to assess whether the media, in its interviews with Marianne Williamson, displayed a knowledge of the science that exists within the research literature, or whether they had been informed by the false story that has been peddled to the media and to the public.
I hope this distinction is clear.
Trump on Thursday called for putting the “mentally ill” back into asylums. In other words, “lock them up”, whoever the “them” may be. This is where hate speech leads–you stir prejudice and fear toward some group of people, and then you propose actions that take away their freedom. https://www.huffpost.com/entry/trump-mental-illness-gun-violence_n_5d55e6fae4b0d8840ff08db3
Right now we have weaponry of all sorts circulating in American society. If you ban private ownership of assault weapons, and make it illegal, i would think it would make it much more difficult for any potential mass murderer to obtain one. And I would think that difficulty would extend to obtaining such weaponry with 3d printing technology.
I don’t think banning assault weapons will eliminate all mass killings. But I do think that it would sharply reduce the frequency of such killings. It doesn’t go to the root causes at all. But it would go to the ease of acquiring weaponry of this sort, and that would be a help.
Someone else: This brings up a good question: Is there a Second Amendment Right for individuals to own an assault weapon?
Wikipedia has a good history of U.S. Supreme Court decisions regarding the Second Amendment. It was only recently that the U.S.Supreme Court said it gave the right for the individual to own a gun for self-protection in the home, and the Court, it is clear, has historically given states the license to limit access to certain types of weaponry, as the right of the individual to bear arms is not an unlimited one.
While psychiatric drugs can stir homicidal behavior, there have been plenty of instances where psychiatric drugs haven’t been involved. Personally, I think we as a society can ban assault weapons while not intruding on a Second Amendment right, as interpreted by the Court, to maintain a firearm in the home for purposes of self-defense.
That National Review article is linked to a Heritage Foundation report that is quite long, and so I don’t know where there original citations come from. The 20 times homicide rate cited for people diagnosed with schizophrenia doesn’t line up with any study I have ever seen (and the cited report is from the Heritage Foundation, and I can tell you that the claim in that report, which I did see, that says there is little relationship between gun ownership and suicide rates is just dead wrong. See the MIA report, Suicide in the Prozac ERa for data on this.
If you read The Case Against AOT, you’ll find some discussion about this issue of violence by discharged patients from mental hospitals. Although such studies vary in their findings, in a study where the discharged cohort was matched to a similar general population cohort for education, income, and substance abuse, the violence disparities disappear. In such studies, the increased rate of violence by the discharged patients comes from those with a substance abuse problem..
More to the point, an article appeared in the New YOrk Times yesterday, citing studies of mass killers. Only 20% had a psychiatric diagnosis, which is the percentage of people in society with a diagnosis. https://www.nytimes.com/2019/08/08/opinion/mass-shootings-mental-health.html?searchResultPosition=1
In other words, there is no higher rate of mass killers emerging from that segment of the population than from the rest of the population.
And remember, let’s say that 5% of the mass killers have a psychotic diagnosis. If there are 20 mass killings a year, that would mean one would be due to someone with a psychotic diagnosis. Are you going to restrict the citizien rights of several million people for the acts of one person?
I appreciate your comment.
I know you have linked to an article by the National Review, which of course is a publication that regularly puts forth Republican talking points, and I think this article is doing that.
Now, in regard to this blog:
Do you see the same rate of mass murders in countries that don’t allow access to assault weapons (but still have people said to be “mentally ill?” No.
Do you see that it is people on disability due to mental illness who are the ones who are buying assault weapons and committing mass murders? I know of no evidence for that.
Do you see that it is people who have been in a mental hospital and aren’t taking medications are the ones who are committing most of these mass murders? No.
Is there evidence that forcing people to take antipsychotics, which is what Torrey urges, reduces the likelihood that they will commit mass murder? There is nothing in the AOT literature that shows that to be so.
Is there any evidence that our expanded psychiatric enterprise, which sees more and more people getting diagnosed and treated, has reduced the frequency of mass murder? No.
Of course people who commit mass murder are “disturbed” in some way. I don’t think you plan to bring an assault weapon into a public space and start shooting people if you are not “disturbed.” But what are the paths that these mass murderers are on before they act? They may have gotten psychiatric treatment. They may not have gotten psychiatric treatment. They may be on psychiatric drugs. They may not be on psychiatric drugs. And so on.
So now, three questions.
1) If you are going to “blame” mental illness, what is the legislative action that should follow? More screening for psychiatric disorders? Forced treatment? Banning all those with a psychiatric diagnosis from owning guns? Can you point to any evidence that “blaming mental illness” will lead to a societal change that will reduce the frequency of mass murder?
2) Do you think that banning all assault weapons would reduce the frequency of mass murders? If so, that would be a more effective choice of action.
3) In terms of numbers, there are a tiny number of disturbed people, including some who may have been psychotic, who commit mass murders. Do you think it is right to cast societal aspersion on the millions of people who have a psychiatric diagnosis, and limit their citizenship rights in some way (including subjecting them to forced treatment), for that reason? Do you tar the millions based on the actions of a few?
There is a 2016 publication, by the American Psychiatric Association, titled Mass Shootings and Mental Illness. It states that people with “serious mental illness” commit about 3% of the violent crimes in our country each year. The percentage of people said to be seriously mentally ill in our country is higher than that. So why would we blame mass murder on that 3%, and target that group with legislation that curtailed their rights?
I am listening to all these comments, and will write a blog in a couple of days to present MIA’s stance on this (and thus my editorial decision.) I don’t think it is being particularly well understood through this reflective prism here. But for now, I just am going to listen to the comments.
It was the publication of DSM III, when the APA adopted its so called “medical model,” that soon led to the frequent diagnosing of children and adolescents with a psychiatric disorder, and their being told that they had a chemical imbalance in the brain. That was not happening to children and adolescents on a frequent basis prior to 1980 (and that is Laura’s story.) I didn’t know any school-age person who was diagnosed with a psychiatric disorder when I was growing up.
Yes, the profession adopted regular use of neuroleptics after they arrived on the market in 1955, and at heavy doses, for those in mental hospitals. But the huge expansion of the mental health enterprise began in 1980, with the APA adopting its disease model, and that is the enterprise that swept Laura into its midst.
To Sam: You write that there are “rare times” I visit this website, but just for the record, I run madinamerica.com. My first book was titled Mad in America, and after I published Anatomy of an Epidemic, I and others turned what had been my personal website, madinamerica.com, into this webzine, and I have led this effort ever since (for better or worse, whatever you think.) Just an FYI.
Thank you all for these comments. There are numerous critical comments now on the STAT article, and the Lown Institute published an article today that echoed our criticisms of the STAT opinion piece as well.
This is a really interesting thought.
I think there are many factors contributing to the rise of adolescent anxiety and depression, starting with the push by psychiatry and the drug industry to get all of us, starting with youth, to be constantly on the lookout for such feelings within us. Then there is the competition to get into good colleges, and as Steve says, there is also the lack of a good path to economic independence for our youth today (particularly given the debt they may run up getting a college degree and pursuing a graduate degree.)
But the “zealous overprotection of children and adolescents”, as you say, an obvious possible contributing factor, and one that I have actually wanted to write about. Children develop resilience and self-confidence by being out in nature and in social situations where they see themselves as learning to copy with those environments, and yes, ultimately on their own.
I appreciate that there are two new books helping bring attention to this question.
I thought about writing about this too. This is a little noticed fact, that suicides increased dramatically following the introduction of neuroleptics. I may write about this soon in an MIA report that looks at claims that antipsychotics reduce mortality.
Thank you all for these comments. It’s clear many feel quite passionate about MIA, even those who write with some disparagement toward us. We’ll take all of this into consideration as we move ahead as an organization.
One note on now having to click the comments button. Frankly, this just makes the whole page cleaner in appearance, and that means the comments page displays in a cleaner fashion too. Virtually every site does this. And I don’t think it takes too much effort to click on the comments button. We should have done this long ago for aesthetics reasons. And it doesn’t do anything negative in terms of limiting discussions, comments or so forth. In my opinion, it actually highlights them better, because they no longer appear stretched out at the bottom of the article.
We are going to close this commentary now, as I think everyone has had their say and we have heard your feedback.
After reading these comments, and seeing new information brought into the discussion, including the study conducted by pfluft, I am reminded anew by how there is, within the page of papers published by mainstream psychiatry, so often a lack of effort by the authors to really explore the data, and set it forth in detail, but rather you see a discussion of data and reasoning that really is meant to confirm the conventional thinking. It’s good to see this discussion here.
The TADS study is a case in point. I saw that in one of the studies I reviewed cited as evidence that antidepressants didn’t increase the risk of suicide in youth! The initial corruption is just incorporated into later statistical reviews.
This is the same with the Gibbon’s piece claiming that suicide in youth went up after the black box warning was put on the drugs. A corrupt bit of science, and pfluft’s study helps reminds us of that. And yet, you see Gibbon’s research still cited all the time as ecological evidence that antidepressants actually prevent suicide in youth.
But just wanted to say I appreciated the discussion here.
I should have weighed in on this before. (I posted this same comment on James Moore’s survey blog.)
First off, since its inception six years ago,MIA has provided a forum for psychiatric survivors to tell their personal stories in blog posts that are featured on the front page, and thus get read by a larger audience. This has been one of the goals of MIA from the start, and the way you can make it possible for that survivor voice to be heard more widely is to create a site that isn’t hostile in tone and kind. So it rather irks me when I read of how we are somehow silencing the psychiatric survivor voice, etc. If you just want psychiatric survivors telling their stories to each other, that’s fine and understandable. But our goal was to give that voice a place in a wider societal discussion, and to reach beyond the choir.
However, if we have a commenting section that is seen as hostile and always ready to attack those who have different views, that becomes a force that is helping to silence the survivor voice, because it diminishes the audience that is going to hear it and consider it.
Moreover, we have lost any number of bloggers, including those who identify as psychiatric survivors, who stopped writing for us because of some of the responses by commenters (they felt personally attacked in some way or another.)
And so what really are the changes we are proposing?
One, we are trying to re-emphasize the need to be civil–both in tone and thought. We understand that there are many people who have been hurt by psychiatry as an institution, had their liberty taken away, and have felt betrayed by the stories that psychiatry has told the public. There should be a place for people to voice their rage, their anger, and so forth on the web. But because of what we are trying to do here, which is be a forum for a wider discussion about how to “rethink psychiatry” — and by the way, we have writers who are abolitionists, read Bonnie Burstow, for example–we are trying to say to all, park that emotional rage at the door, and engage in an intellectual fashion, and with a civility in tone and in thought.
And the second change really is this: We are going to set up the comments section–as nearly all web sites have done–where readers will click on the comments and make a choice to enter that world of commentary. That will create a sense of choice by readers, and thus when readers complain that they have stopped coming because of the comments, we can say that it is up to them to decide whether to engage with the comments. The changes will also make our comments section more user friendly, and accessible . . . these changes should invite more readers to engage with the discussions.
One of the things we realized from the survey is that so many people just avoid the comments altogether because of a sense that it can be a hostile place. We are TRYING TO ENLARGE THE AUDIENCE for those contributing through their comments, not diminish the audience. We are just asking everyone to engage in a way that help create an environment where people can listen to each other.
And please, if you want to voice your displeasure, tell it to me. You can even write me at [email protected]. I am the one driving these changes, and so if you have a complaint, you don’t need to get mad at James Moore or Steve McRea.
I should have weighed in on this before. (I also posted this comment on Steve McRea’s blog.)
And the second change really is this: We are going to set up the comments section–as nearly all web sites have done–where readers will click on the comments and make a choice to enter that world of commentary. That will create a sense of choice by readers, and thus when readers complain that they have stopped coming because of the comments, we can say that it is up to them to decide whether to engage with the comments. The changes to the comments section also make it more user friendly, and accessible . . . these changes should invite more readers to engage with the discussions.
Pfluft, I looked up the abstract. Very interesting. I could only read the abstract, but will get the full article from the library. We can feature this in our science news as well. Thanks for the note.
Auntie Psychiatry you are exactly right. The media coverage reflected what the psychiatrists told them, and was included in the press release. The general media isn’t going to try to interpret the study; they let the “experts” do that for them. The blaming of the media for the hyping of the study by psychiatrists and the researchers themselves — see Cipriani’s quote in your comment–is ridiculous. And BMJ should be commenting about that, not about how the media failed. The mainstream media did just what you would expect, quote the press release and experts in depression.
Thanks for these comments. Marie, on the high NNT of other drug interventions–I think this is the point of why NNTs should be the focus for informed consent for medical interventions of all types. They allow the individual to assess the “odds” of having a better outcome than they would without the intervention (regarding the target symptom or problem), versus the “harms” that might come from the treatment.
This leads to Duncan’s comment about the “harms” being a separate matter. Well, in this piece, I am using “harm” to describe being exposed to the adverse effects of a psychotropic without benefitting from the treatment on the “target symptom.” Then the question is what are those adverse effects, how common are they, and so forth. I don’t think these are properly identified at all, leaving people contemplating taking a psychiatric drug really in the dark when assessing the potential harms, particularly when initial use of a drug proves to be a gateway to long-term use. Trying to better understand the short-term and long-term risks/harms that can come from taking a psychiatric drug is the other half of providing informed consent, and this too is missing in terms of what people are told.
This is in reply to Oldhead and others questioning why we wrote this MIA Editors post.
We were originally going to simply put up an Around the Web about this flagging of Julia’s talk. But then I thought it deserved more attention for this reason: It is yet another example of how challenges to the conventional narrative in psychiatry are shut down, or at least flagged as suspicious, in more general media forums.
That is a theme that I have often written about, and in some ways is central to what I have written about in Mad in America, Anatomy of an Epidemic, and in Psychiatry Under the Influence (the last book co-authored with Lisa Cosgrove.) The powers that be-pharma, and psychiatry as an institution-have sold a false narrative to the public for at least the last 35 years, and one of the key ways they have defended that narrative is to delegitimize critics in the eyes of the conventional media (and TED talks is part of that conventional media.) The powers that be wrap themselves in the cloak of science, and they present those who would criticize their narrative, or challenge it in some way, as “flat-earthers,” and so forth.
Given that enduring interest of mine, in how the media is manipulated, I thought it would be good, in the manner of news, to feature this flagging of Julia’s TED talk. It was news of a form of censorship.
I decided that it would be best to have the “author” of this blog be MIA editors for two reasons.
First, it was James Moore, who runs our MIA Radio Podcasts and is now contributing to our editorial content in various ways, who first noticed this and prepared an Around the Web. I then just added a bit of content to turn it into a blog post. So it was in fact a collaborative “authorship.”
Second, TED’s flagging of Julia’s talk also represents an arrow that could be said to be directed at MIA too. Julia writes for us within a very particular context: She writes as a researcher who has done studies on the use of micronutrients as treatments for diagnoses that exist within the DSM, and on nutrition in general as it may contribute to mental wellness. And our point, in writing this post, is that Julia’s presentations — whether it be for a TED talk or for us — follow good scientific protocols. She tells of her study designs, and she accurately reports what other studies have found. And since her blogs are posted by MIA editors, the most appropriate authorship for this post was in fact MIA editors. We were defending the way Julia Rucklidge writes about these matters for MIA as well.
Now, this post by MIA editors is different than writing an “editorial,” which would express an organizational opinion on some matter or another. We didn’t run an MIA editorial regarding the Murphy bill for the simple reason there was no need for us to do so, and in fact, in my opinion, doing so would have just served as a bit of a distraction. We have numerous very able writers, who are active in the trenches of advocacy work and peer-centered work, who wrote on MIA about their objections to the Murphy bill. Our proper role in that political effort was to provide a forum for their voices and for their arguments. Their voices needed to be front and center (and heard), and not ours as an editorial team.
Two more points in response to the comments here.
First, as an organization, we do not embrace any alternative therapies — such as micronutrient therapy — as a preferred form of care. We want to provide a forum for scientific reports about such therapies, and a forum for researchers and others to write about alternative therapies in blogs. But our editorial position — and this comes first and foremost from me — is very simple: While I am quite sure that our current paradigm of psychiatric care has failed, the task of creating a new narrative of mental health is one that must be taken up collectively. Our job is to help foster that collective discussion, but we, as an organization, do not have the “answers” that tell of what should be done.
Second, regarding the use of quotations around psychiatric diagnoses, we have run plenty of blogs questioning the validity of DSM diagnoses. Lisa Cosgrove and I wrote about this at some length in Psychiatry Under the Influence. And when bloggers for MIA write posts about questioning those diagnoses, they may put quotations around the particular diagnosis.
However, in blogs that are talking about research related to a particular diagnosis that exists in the DSM, it would be a self-serving distraction to put the diagnosis in quotes. Doing so would suddenly direct the readers’ attention to the questioning of the diagnosis, as opposed to keeping it focused on what can we learn about a therapy for people so diagnosed. I want MIA to have a voice, or an impact, within that larger societal discussion, and if we decide that we can’t even enter the world of that conventional narrative, with its DSM constructs, without always putting quotes around such words to remind readers that they are indeed constructs, as opposed to validated diseases, then we might as well shut down, for it would be signaling that only people with a certain belief are welcome here.
Oldhead, MIA is not “teaching Mad Studies.” The people presenting the seminars are those who are involved in “Mad Studies” as academics, and as people with lived experience. We are simply hosting the webinar (and Emily organized it by recruiting the presenters.). MIA never “teaches” anything in its Continuing Ed courses; we simply host the courses and recruit the presenters.
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.
Concerned Carer: Can you tell me where they report that it was 18% of the patients who had a “response?” I have been trying to find that in their paper and supplementary appendix, but can’t find it.
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.
Thank you for this update. That is a big step forward for the Soteria network, getting HMO funding. Perhaps you would like to provide MIA readers with further updates of the Soteria home in Kibbutz Harduf.
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.
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,
This is such an excellent idea. We have been talking about doing something like this –100 stories of recovery from a diagnosis of schizophrenia without medications–for a long time. We need to do this.
Write me on my email, and let’s discuss how to do this.
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.
Just to say, that it is great you are teaching your students this “counter-narrative, and also to say that to change the hold that “biological psychiatry” has on our society is to change society, and as you say, that is going to take a grass roots rebellion.
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.
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 so much for writing this wonderful tribute to Dorothea Buck. So richly deserved, and it is so nice that you have introduced her to MIA readers.
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.
Oldhead and others,
We have some “debugging” to do with the redesign. One is what you have identified here. It isn’t that the comments are scrambled, but rather that the newest is going first. We need to reverse this. We hope to have these bugs fixed asap.
Thanks Steve. I’ll be curious to what you hear back from Psychiatric Times.
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.
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.)
Thanks for the heads up on the typo. There were actually a couple of typos I have caught, and I will be posting a corrected version momentarily.
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 had just published a blog on the “Case Against Antipscyhotics,” 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.
The excuse given by the Royal College for not accepting Joanna’s proposed symposium is just appalling. The “institution” of psychiatry, as represented by the Royal College, clearly wants to avoid a discussion of evidence that challenges its conventional wisdom.
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’
I am an idiot. Yes, I meant congestive heart failure. Thank you for catching this.
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.
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.
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.
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.
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.
As Kayla said, Allen Frances posted a response to this article. https://www.psychologytoday.com/blog/saving-normal/201602/do-antipsychotics-help-or-harm-psychotic-symptoms
I am not going to comment, as I think it speaks for itself.
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.
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.