Adventures at the APA

Sandra Steingard, MD
51
34

On May 18, I had the pleasure and privilege of chairing a workshop at the American Psychiatric Association’s annual meeting in Toronto. The pleasure was in getting to meet two psychiatrists I have admired from afar, my co-presenters, Hugh Middleton and Joanna Moncrieff of the Critical Psychiatry Network. The privilege was in sharing the stage not only with my UK colleagues but with our discussant, Stephen Marder, a professor from UCLA who is one of the world’s preeminent schizophrenia researchers, and our co-chair Carl Cohen of the Radical Caucus of the APA.joanna moncrieff and hugh middleton 051815

The topic: Rethinking the Long-Term Use of Antipsychotics in Schizophrenia: For Everyone, No one or Some?

Dr. Moncrieff began the session by reviewing some of the data that has led us to worry that exposure to neuroleptic drugs over many years is associated with a worse long-term outcome. She cited studies familiar to many readers here and elaborated eloquently in her important book, “The Bitterest Pills”: the Harrow and Wunderink studies, Andreasen’s long-term MRI study where brain atrophy was associated with longer exposure to neuroleptic, and the animal studies which found the same thing.

She also discussed the distinction she has made between drug-centered and disease-centered models for thinking about the effects of psychoactive drugs. In a drug-centered model one views these drugs as psychoactive substances with effects that are not on some central mechanism of disease, but rather on diffuse brain functions. For some individuals at some points in their lives, these effects may be warranted and welcome but they are not considered as intrinsic to recovery nor required indefinitely.

In a disease-centered model, the drugs are considered to be acting more directly on a specific disease state. If one considers them to be targeted to a chronic disease, then one would expect them to be required indefinitely and one would be more likely to consider unwanted changes when they are stopped to be due to the reemergence of the underlying condition than to the effects of drug withdrawal. She has argued that for many reasons, the field shifted from a drug-centered to a disease-centered model and this has blinded us to some of the negative aspects of long-term use.

Dr. Middleton, whose new book on critical psychiatry is published this week, spoke eloquently about the notion and nature of placebo. He pointed out that when a drug is given to a person there is more involved in the response to the pill than can be explained solely by the physiologic effects of the molecule ingested. These factors are often hard to understand in each individual but they are nevertheless present and powerful. He argues that it is a mistake to only consider placebo a distraction that might be mitigated by clever study designs. He considers it intrinsic to the act of taking any pill (or treatment, for that matter).

I presented on the results of my four years of following 66 individuals in my clinic who I have invited to slowly taper off the dose of their neuroleptic drugs. I have reported on the first three years of this project and I have now compiled the results of year four. I will report on these results in more detail in another blog but one point I want to make here addresses some of the fear that has been raised when people bring up concerns about these drugs, namely that people will abruptly stop taking them.

I have been keeping track of 66 individuals. At the outset, 41 individuals wanted to try and taper but 25 did not. Over time, there was some movement between the groups – some who started the taper decided to stop (17), some who initially did not want to make a change decided to give it a try (10). The point here is that individuals involved were extremely active in the process.  Many times they made conservative choices about their care.  There were 12 individuals who abruptly stopped the drugs but these were almost entirely people who had done so many times in the past.

There was a higher rate of hospitalization among those who started a taper, but most were ok. Among the seven individuals in the tapering group who were hospitalized during this time, they were hospitalized on average within 5 months of the last dose reduction and all of the relapses occurred with in a year of a dose reduction. So I use this to guide the speed of the taper. I found that abrupt discontinuation was almost invariably associated with a recurrence of psychosis and a very high rate of hospitalization. This allows me to say to people who want to stop the drugs that I will work with them on this but I implore them to go as slowly as they possibly can. It has been common that when people do go into the hospital they come out on a higher dose than before the taper began, so that going slowly and avoiding hospitalization is the best way to insure reaching a goal of being on the lowest dose possible.

Although I can not, at this point, identify a specific benefit of tapering – I tracked rate of employment, which did not differ among the groups – I continue to think this is an important conversation to have with the people I see and I will continue to track their progress in the years to come. I realize I am emphasizing the risk of hospitalization over other untoward effects of tapering. I did not identify specific or even non-specific withdrawal complaints. Some people had trouble with sleep and others reported some vivid nightmares but this tended to be transient and often was not a reason that people chose to stop the taper. Whether this is due to my not asking the right questions or the slowness rate of taper or the general tolerability of the reductions of these drugs is hard for me to say.

Dr. Marder’s comments were supportive but he clearly approached this with a different perspective. While he agrees that it is important and valuable to try to achieve the lowest dose of the drug he also believes they will continue to be necessary for most individuals. For instance, he noted that all individuals should be treated with neuroleptics and although “it is plausible and inescapable that some people will do well without drugs, it is not probable.” We were fortunate to have someone of his stature as our discussant. He enjoyed the workshop and seemed open to doing this again but also he told me he was surprised at the level of interest.

But he was not the only one who was unprepared for the level of interest. The most remarkable thing about this workshop was who attended. The room was full by the time we started and shortly into the session it was standing-room-only, and people were turned away. The audience was extremely engaged and we remained in the room for another 30 minutes after answering questions. We were approached about presenting again at another meeting, and were heard from a reporter who wanted to learn more.

I want to once again thank my co-presenters. It was an honor to be among you and I am grateful for what you have taught me.

Support MIA

Enjoyed what you just read? Consider a donation to help us continue to produce content, provide up-to-date research news, offer continuing education courses, and continue building a community for exploring alternatives to the current paradigm of mental health. All donations are tax deductible.

$
Select Payment Method
Loading...
Personal Info

Credit Card Info
This is a secure SSL encrypted payment.

Donation Total: $20.00

51 COMMENTS

  1. Hi Sandy-great news and glad their was a receptive audience. Was there any discussion of other ways to target NMDA receptors-sarcosine, N-acetylcysteine, omega-3s, anti-inflammatories? What about checking for systemic infections? I always wonder why there are no monotherapy studies with these new approaches with first episode patients.

    • Jill,

      I’m not a doctor so am not familiar with how the NMDA receptors-sarcosine relates to odd dreams and thoughts, but your question seems to imply that anti-inflamatories also affect this receptor. Is that correct? I ask because I’m trying to medically explain exactly what happened to me. And I had the common symptoms 0f antidepressant discontinuation syndrome, likely worsened with a NSAI, Voltaren, and a synthetic opioid, Ultram misdiagnosed (according to the DSM-IV-TR at the time) as “bipolar.” By chance, do you have any insights?

      Sandy,

      I am so glad you and your partners were well received, and thank you all for the work you are doing. I believe it’s very important to present data on moderating the use of the neuroleptics, since many people do not react well to this class of drugs, myself being one. I went through a terrifying first ever “psychosis,” just two weeks after being put on a child’s dose of Risperdal, .5mg.

      And I’ve found the medical evidence that the neuroleptics do cause both the positive and negative symptoms of “schizophrenia.”

      “Neuroleptic induced deficit syndrome is principally characterized by the same symptoms that constitute the negative symptoms of schizophrenia—emotional blunting, apathy, hypobulia, difficulty in thinking, difficulty or total inability in concentrating, attention deficits, and desocialization. This can easily lead to misdiagnosis and mistreatment. Instead of decreasing the antipsychotic, the doctor may increase their dose to try to ‘improve’ what he perceives to be negative symptoms of schizophrenia, rather than antipsychotic side effects.”

      “neuroleptics … may result in … the anticholinergic intoxication syndrome … Central symptoms may include memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures.”

      Plus, given John Read’s research, which has found that most schizophrenics suffered from adverse childhood experiences or child abuse. It is my theory that most schizophrenia is likely doctors misdiagnosing adverse childhood experiences, child abuse, or in my case, concerns of the abuse of my child, as “psychosis.” Then inappropriately treating a crime, as a brain disease in the patient, and prescribing a neuroleptic. And then actually creating the symptoms of schizophrenia in these crime victims with the neuroleptics. Based upon Read’s research, and my experience with the psychiatric industry, I’m guessing this is the most common cause of schizophrenia.

      All of my psychiatric practitioners adamantly denied the reality that the neuroleptics can and do cause the symptoms of schizophrenia, contrary to the actual medical evidence. Is this something being discussed within the psychiatric community yet to your knowledge?

  2. I read this with great interest. Let me share some thoughts from reading:

    – When reading about someone like Marder – i.e. a person who thinks that most people labeled schizophrenic need to stay on anti-psychotics long-term – I get this feeling of alien-ness and wonder what they would think if they 1) Worked with psychotic people in intensive long-term psychotherapy (first of course; they’d have to believe this would be possible and beneficial), or 2) Read cases of schizophrenics who were successfully helped by such relationships. I’m thinking of the cases in books like Bryce Boyer’s Regressed Patient, Vamik Volkan’s Infantile Psychotic Self, Ira Steinman’s Treating the Untreatable, Andrew Lotterman’s Psychotherapy for People Diagnosed with Schizophrenia, Murray Jackson’s Weathering the Storms, Harold Searles’ Collected Papers, Paris Williams’ Rethinking Madness etc. I would guess that this area of experience – getting to know a psychotic person as an individual, or rather loving them so that they can become an individual – is so far and remote from the experience of a research psychiatrist like Marder, that they cannot comprehend that there is another way of working with these severely distressed people that is transformative, rather than merely “treating a brain disease.”

    – I would add to your listing of studies like Wunderink and Harrow, the long-term findings of Courtenay Harding in her Vermont study. The vast majority of the people labeled schizophrenic in that study who did well, as measured by a high GAF rating correlating to ability to work and have good social relationships, came off their medication completely, at different times over the 25-30 year study period. Also, I’d add the 5-year outcomes of Open Dialogue study reported by Seikkula, in which not all but the majority of good outcomes for (formerly) psychotic people were achieved with minimal or no medication use. Also, the correlation between much lower antipsychotic use in poorer countries and much better outcomes in those countries, e.g. as shown in the WHO studies. These studies on their own show that, at least in India, Columbia, Nigeria, etc most “schizophrenics” can and do socially recover without long-term medication use.

    – I suggest that Marder and others like him cannot face the possibility that their area of “expertise”, schizophrenia, is actually a nonexistent label, one that hypothesizes a syndrome that doesn’t exist in any organized way in nature. If this were widely known, he might have to resign from his professor-ship! Sandra, you should give him Mary Boyle, Richard Bentall, and associated reading at your next conference! Or perhaps invite John Read and Richard Bentall to come ask Marder questions. Then again, we wouldn’t want him to be out on the street and unable to pay his mortgage… (it occurs to me that it may be a good thing I’m not asking questions at these conferences; these imaginary faceoffds are starting to make me think of the old MTV show celebrity deathmatch).

    I have recently been in contact with a therapist here in Washington DC, Gary van den Bos, and he has told me how he has worked with about 50 schizophrenic-labeled people over a 40 year career; according to him, over 80% of them were able to return to full-time work and achieve a satisfying level of social adaptation (meaning self-reported satisfaction at new relationships with friends and family), if they could stay in 2-3x weekly therapy for at least 2-3 years. This was the kind of intensive work that Van den Bos did, so rarely available to the people in psychiatry’s studies (and also, rarely possible, due to long-term high medication use precluding feeling feelings).

    There were many variables in VDB’s work, but he found consistently that when the family/financial resources allowed a longer-term positive relationship to develop with a patient, they usually did quite well, were able to come off medication gradually, and were able to function at work normally. In his view, the issue of medication became peripheral as a better relationship developed in therapy and the ability to handle feelings with progressively lower doses of medication grew; the key factors were building a supportive relationship and understanding what happened in a person’s life that brought them to the distress they are in. This depth understanding tends to get lost in these sometimes superficial discussions of medication vs. no medication, I fear…

    If any one is interested, Van den Bos was the coauthor of Psychotherapy of Schizophrenia with Bert Karon, and he also supervised over 150 schizophrenic cases in therapy with other therapists, with similarly good results. In all these cases, he focused on gradually tapering off medications as a positive thing that enabled people to work on difficult feelings better; he found that most (former) schizophrenics could successfully stop medication over the long-term with sufficient psychological support…. VDB also happens to be the head publisher of the American Psychological Association! ( http://www.apa.org/about/apa/senior-staff/vandenbos-bio.aspx )

    I wanted to share this because I think long-term outcomes for “schizophrenia” tend to be reported for mainly the sickest people with the least resources who are mostly heavily medicated, frequently hospitalized, etc. There are much more hopeful results achieved by different therapists and non-hospital treatment approaches, much as (some) psychiatrists might like to deny it. These outcomes are not perfectly recorded scientifically, but taking all the sources I listed together; they are suggestive that with better help, “schizophrenic” people can do way better than some psychiatric studies imply.

    I actually think that acknowledging these types of data – i.e. the books I referenced, Van den Bos, etc. – is a mortal danger to most psychiatrists. Because the good outcomes described from these sources are far superior and far more frequent than those in people who only get medication and brief hospitalization. If it were made widely known that so-called “schizophrenia” is entirely reversible and curable, and that human love and understanding in a long-term close relationship are far superior to pills, then billions of dollars in profit would be lost and the prestige of thousands of psychiatrists would be irreparably undermined. Many psychiatrists would lose their Cadillacs and McMansions. I hope that is what will happen.

      • Thanks John. What you’re referring to is the Michigan Study of Psychotherapy for Schizophrenia (could be off by a few words), the randomized trial of “schizophrenics” who 70 sessions of psychodynamic psychotherapy (plus medication and hospitalization as needed) vs. “schizophrenics” who got “treatment as usual” (medication, hospitalization, but not psychotherapy). This study’s results indicated that those who did best were those in psychotherapy who didn’t take medication for long.

        My reporting of Van den Bos’ outcomes for his 40 patients was something different; it was the results of his work in private practice psychotherapy with “schizophrenics” outside of the study reported in Psychotherapy of Schizophrenia. These were people who on average would have received about 200+ sessions of psychotherapy (twice a week for at least two years). It’s not surprising, to me at least, that many of these people would do quite well; VdB is a very caring and hopeful person, but also, perhaps they are already people with some strength and ability to want to understand what is going on that led them to seek or accept help. It’s too bad this type of “study”, even if not formally reported, is not widely known.

  3. fascinating. I’m on a little cocktail that I’d like to reduce. Are some drugs easier to taper than others? I’ve been stuck on high dose Abilify for a while, and I’d like to reduce, maybe one day discontinue.

    What’s your experience with atypicals in mood disorders w/psychosis? Its weird…this area is so class conscious. Back when I was down and out, I was schizo and everybody wanted me on Thorazine. Now, I have somewhat affluent people behind me, and I’m suddenly “Bipolar I, in recovery.” Who knew?

    But..yeah…I’m not anti-meds, I’m really just pro-brain cells, so…have you ever been able to stabilize that sort of disorder on just anticonvulsants (not depakote, please) ? I’m not asking for advice, not really–I have a doc–just…ideas, I suppose.

    • yeah_i_survived,

      I like your name. And yeah, I am a survivor, too. But I did successfully get off the neuroleptics. I agree with Sandy’s suggestions. But want to warn you that it is highly likely you will suffer from a drug withdrawal induced super sensitivity manic psychosis. I was slowly weaned off the neuroleptics over about a two year period, then a year later taken off lithium. And six months after that I was hospitalized, so even a slow taper doesn’t safeguard you from a withdrawal induced manic psychosis.

      My suggestion to you, if you choose to completely taper, is to make sure you inform your loved ones about the likelihood of a drug withdrawal induced super sensitivity manic psychosis. My husband and I had not been forewarned of this, so he sent me to the hospital. And the hospitals misdiagnose super sensitivity psychosis as a return of bipolar or schizophrenia, and whack you out of your mind, which is quite counterproductive.

      I’d suggest you try to set up a safe place with loving friends where you can work through this possible psychosis. And if you have to be hospitalized, make sure you have a loved one go with you and explain that you’re suffering from drug withdrawal induced super sensitivity manic psychosis, so lower doses, and another taper is your personal treatment choice.

      But the good news is, you can heal and be drug free. And you’ll be able to think again, which is a wonderful thing. Best of luck to you on your healing journey.

        • Hi Sa,

          Well, for me the drug withdrawal induced manic psychosis occurred about 6 months after I’d been weaned off the drugs. I misstated above, I wasn’t actually hospitalized until about 9 months after I’d been weaned off the lithium.

          The symptoms for me weren’t that bad, it was more of an incredible tale of being awoken to the story of my dreams. I would wake up in the mornings listening to the radio, and I learned that I could tell the story of my relationships with others and dreams in the lyrics of music.

          I would get up and dance, for about two hours, so I was manic. I also spent too much money, but I had just won a lawsuit due to negligence of a restaurant resulting in a “bad fix” on my ankle, so could thankfully afford to do so at the time. I was dealing with doctors who were paranoid of a potential malpractice suit, which is why I was railroaded into the system.

          I would also drive around and my thoughts would coordinate with songs on the radio, and even people’s vanity license plates would coordinate with my thoughts and the music (I had a little “Chasing Cars” problem in late 2006, that song didn’t come out until 2007, though). It is actually a really bizarre story, which I’m trying to piece together now. Unfortunately, when you’re manic, you can’t take good notes. The good thing was I lost about 10 lbs.

          The manic awakening to my dreams did last until I was hospitalized, so for about three months, but my husband and I were NOT told to expect this by doctors, nor given any accurate information by doctors at all actually. And the hospitals do misdiagnose drug withdrawal induced super sensitivity manic psychosis as either bipolar or schizophrenia, and “snow” patients.

          At least that was my experience with V R Kuchipudi, whose now been arrested by the FBI for having lots of patients medically unnecessarily shipped to him (google his name for the arrest complaint).

          And I was actually illegally dragged out of my own bed due to a sleep walking / talking problem one night ever in my life, which is what resulted in the hospitalization – one of the paramedics told the other five that since I was neither a danger to myself nor anyone else, since I’d awoken and agreed to just go back to bed, dragging me out of my bed was actually illegal. So, in actuality, had that not happened, I’m not certain how long the manic psychosis would have lasted.

          But the manic psychosis did not prevent me from being productive, the hospitalization did, but the mania basically just made me very productive. And I hope I can get the story written, I’m reading through my old journals and writings now.

          Our society has not had a good story about someone being gas lighted since 1940, and it strikes me the psychiatric industry is actually nothing but an industry that gas lights people, largely to cover up child abuse, a situation I was also dealing with, so I’m trying to write my story.

          If you’re forewarned of the drug withdrawal induced super sensitivity manic psychosis problem, and have a good support system, the way I was weaned off drugs is probably not a bad way to go. It may take a brief reintroduction to a neuroleptic to end the super sensitivity psychosis, although I’m not certain that’s true. I think it’s likely a good support system would be better. But I know you can heal and become completely drug free.

          And I’m sorry I’m still at the point my story is “Unwritten,” it took a lot of medical research to get where I currently am:

          “I am unwritten, can’t read my mind, I’m undefined
          I’m just beginning, the pen’s in my hand, ending unplanned

          Staring at the blank page before you
          Open up the dirty window
          Let the sun illuminate the words that you could not find

          Reaching for something in the distance
          So close you can almost taste it
          Release your inhibitions
          Feel the rain on your skin
          No one else can feel it for you
          Only you can let it in
          No one else, no one else
          Can speak the words on your lips
          Drench yourself in words unspoken
          Live your life with arms wide open
          Today is where your book begins
          The rest is still unwritten

          Oh, oh, oh

          I break tradition, sometimes my tries, are outside the lines
          We’ve been conditioned to not make mistakes, but I can’t live that way

          Staring at the blank page before you
          Open up the dirty window
          Let the sun illuminate the words that you could not find …”

          According to my dreams, I’m not only Someone Else, but No One Else, and I truly believe Everyone Else can also heal heal from the iatrogenic illnesses the psychiatric drugs cause.

  4. Thank you for participating in this research and sharing your APA experiences here…I feel that the tide is turning, ever so slowly, but in all my years in the field, I feel that a shift is finally gaining momentum. I give tremendous thanks and credit to people like you, Rob Whitaker, Dr. Moncrieff, Dr Middleton and hundreds of others here on this site…

  5. Thank you Sandy, I am happy to hear that your workshop was full of people!!! It is indeed important to talk about how to provide support for people who want to taper. As you write in your blog it is many things to take into consideration, not at least the relationship between the professional and the one called patient and each of their “abilty” to hold hard situations like fear and feelings of hopelessness.

  6. Thank you for the community service of challenging the erroneous disease-centered model; it is harmful to community mental health to consider natural emotional suffering to be a disease.

    However, my experiences with extreme emotional suffering taught me two things about the painful irrationality of mental distress that are difficult to understand without experiencing them. First, the painfulness of extreme mental trauma is beyond description; people experiencing similar pain from physical trauma are commonly prescribed morphine. Second, the irrational symptoms of extreme mental distress are the natural, normal neurobiology of distressful experiences; they are not symptoms of a disease. Before experiencing extreme emotional suffering, I would have assumed that my presented symptoms were symptoms of a disease because they contradicted common (albeit ambiguous) assumptions about how the brain works.

    Drug therapies have a sedative affect that can be helpful/comforting short-term but harmful long-term; this is difficult to quantify. Only reducing distressful experiences and promoting therapeutic experiences of wellbeing promotes mental health. Long-term drug therapies are counterproductive because their sedative affect reduces the physical energy and mental acuity necessary to desensitize traumatic experiences and promote experiences of wellbeing.

    The problem returns to common assumptions about how the brain works; experiencing emotional trauma gave me an uncommon perspective that explained mental distress (and all human psychology) with elemental empirical neuroscience. The pseudoscience of popular psychology/psychiatry theory is founded on anomalies of four basic principles of science; solving these four scientific failings explains human psychology. Please consider the real science of human psychology at NaturalPsychology.org; criticism is greatly appreciated.

    Best wishes, Steve

  7. I know there is vast difference of diagnostics by individual psychiatrists and wondered if your group of schizophrenics would all be diagnosed the same? The reason I’m asking is I my diagnoses kept changing as neuroleptic drugs were introduced and later was told I had never been mentally ill. I believe from my own experience that psychiatric drugs make the situation worse. It’s fascinating to me how psychiatry views it’s diagnostics and prescribing. I want to thank you for speaking out about how psychiatric/neuroleptics drugs can make a person worse.

    Wanted to add to bpdtransformation’s post that a therapist must believe in their client and that in some way they can/will improve. Whether it happens is another thing but hope can be conveyed. I was so poly drugged I had no idea who I was except a mental patient who would never improve (by psychiatrist and therapist)) and and when I was tapering realized my therapist had no hope or feelings of good will towards me.

  8. Thanks again, Sandra, for your honest, candid, caring approach, and for co-presenting this extremely important workshop to some of those who most need to hear it. It is encouraging to hear of the high interest level.

    I see some references to Open Dialogue in the comments. bpdtransformation raised these questions/issues very articulately in the second comment above, so I won’t try to reiterate them. But I would like to ask, is Dr. Marder aware of the work in Northern Finland, and if so, what does he think of it? Does he believe they’re lying, or distorting the results in a self-deluded manner? Of course, first-episode psychosis cannot be equated with schizophrenia, notwithstanding the issue that “schizophrenia” is a rather ill-defined and far from unitary state of mind/being. So is that his “out”–that the success reported with Open Dialogue is because they are dealing with first episode psychosis, which may be transient anyway? If that is his position, would he be in support of refraining from use of neuroleptics, if at all possible, when treating first-episode psychosis? I seriously doubt it!

  9. “Dr. Marder knows Elyn Saks who was the recipient of long term high quality psychotherapy yet, as she writes in her memoir, when she finally agreed to use neuroleptics, she felt much better. I think we can no more discount her story than discount the story of Joanna Greenberg or many others who recovered without using drugs. ” [I’ll add Laura Delano, David Oaks, Will Hall, a few personal friends (anonymous, since i don’t have their permission to mention their names)…as well as those who only use them only on a self-directed “as needed” basis, like Keris Myrick, Jim Gottstein, and another anonymous personal friend]

    I was just looking back at your response to bpdtransformation, and i do appreciate this comment.

    It resonated with me in terms of what I’ll call “real world balance” (something i see in all of your articles)–meaning it avoids posturing in a dogmatic way that essentially denies the real life experiences of some in order to maintain “purity” of an ideological viewpoint. I am incensed by the degree to which i see this kind of one-sided posturing happening by the promoters of the “chemical imbalance” theory of mental illness–those who, unfortunately still hold most of the power in the mental health industry despite the lack of valid scientific support for their ideology. I think those of us who are very critical of mainstream psychiatry (justifiably) need to scrupulously avoid that same error. While we rightly bring to light those who have successfully come off of debilitating psych meds, to deny the experience of someone whose life has been improved by use of these same meds is wrong, and detracts from our overall credibility.

  10. I agree with this whole-heartedly. I feel Elyn Saks experience should be completely validated, and this in no way discredits non med approaches and successes. Indeed it reminds me of the idea of ‘subsets’ of psychosis that Whitaker and others talk about. It is also why I wonder if Elyn Sacs might one day adapt some of the things she says in order to support a more ‘informed choice’ type of position that takes into account the research that show non-medical successes, and particularly to protect the people whose condition worsens with medication.

  11. I’m looking to your new post. I’ve looked at all this push for LAIs and related talk about importance of “adherence” in first psychosis during the last years. I find it quite worrisome. I haven’t read that book from Whitaker and Cosgrove, so I’m also looking forward to the point of view they make concerning schizophrenia as a chronic disease. I think it’s a messy topic.

    I’ve been trying to figure out what happened to me when I got diagnosed with bipolar, then schizophrenia, then when I had quit all drugs and returned to work, the diagnoses was that I had had “severe depression with psychotic symptoms” when I had arrived to that psychiatric unit two year before, though their own check-in test at the time implicated to them that I did not have depression at that time. I don’t think I had any notable type of psychosis at the time, but of course no one believes that because they know people with psychosis are paranoid towards treatment, not adherent, have lack of insight, are treatment resistant and so on.

    I do think there’s biology behind much of what counts as mental illness, and diagnoses do have some validity or use. At the same time, in clinical practice psychiatric diagnoses and descriptions are somewhat hazy and cannot be proved to be strictly right or wrong, psychiatrist have plenty of power over their patients and so on. The diagnoses, words and descriptions are sometimes used as kind of tools in things such as behaviour control and self-justification.

    On my hiking and trail running sessions I’m currently listening to audiobook “Mistakes Were Made (But Not By Me)” which deals with the self-justification angle. It’s not a specialty of psychiatrist to try to find explanations to prove self-worthness, being a respectable citizen, etc. Most of us do it. Psychiatry is not the only place where it happens, but it’s one place where this self-justification can have particularly nasty consequences. Other places this kind of behaviour can have unfortunate consequences include forensic system, juridical system, psychological interventions and relationships. It happens everywhere.

    In my particular case I was rendered unable to work by the treatment. After two or three months of the treatment with neuroleptic drugs (and SSRI), I was sleeping 14-16 hours a day, my speech was very slow and I often answered with just “yes” and “no”. Just months before I was fully employed in a good job which required clear and logical thinking. My relatives and other people around me got very worried for my health at that point, after I was being treated for some months with neuroleptic drugs. My mental and physical health kept getting worse during the next months, and the descriptions I read from their notes show how self-justification may cause psychiatrists or psychologists to wrangle already loose diagnostic labels and descriptions so that it looks like they were doing great job and are respectable citizens.

    For instance, when at the two or three month mark I complained about the actual severe reaction to neuroleptic medication (Ability and quetiapine), they wrote in their papers “patient had paranoid though concerning current medication”. I never had any paranoid thoughts, but that’s a nice place to use that word, since it knocks out my criticism. After two years from starting the treatment, I was out of all meds and back to work, but the final report which they wrote and sent to public Finnish health care units said “patient had paranoid thinking when he arrived here”. No. Their own actual records say falsely that “patient had paranoid thoughts concerning his medications” two or three months after I arrived there, at a point when it was evident to almost anyone else that I was rendered disabled by their treatment.

    Confirmation bias is “the tendency to search for, interpret, or recall information in a way that confirms one’s beliefs or hypotheses”. In my case, it seems that the psychiatrist and psychologist had decided early on that I maybe had bipolar or psychosis of some kind. After that point, they started to interpret everything I said through that lens. When I told about the effects of the drugs on my brain, philosophy, etc, they were dismissed in their official notes in terms such as “patient claimed he prefers to think in scientific way, but his use of words was illogical”. When I objected to this treatment, the self-justification perhaps on both parts just escalated the situation. When I started to resist the treatment that I felt was destroying my health, that resistance itself became to them more proof of mental illness. If I disagreed with them, they interpreted that as more of delusional thinking and proof of their original hypothesis. And then I disagreed more.

  12. Doctor Sandra Steingard, I thank you for the work you are doing , researching, increasing the quality of life of the S.M.I. by reducing or stopping the amount of neuroleptics.

    Normal people calm their fears and worry with drugs like alcohol and cocaine. These same fears and worries are in the seriously mentally ill, when they have a fully functioning brain.

    From a psychiatrists point of view which patient is easier to manage and control, the drugged or undrugged? Obviously the drugged.

    I am a diagnosed “schizophrenic” who does not take “medice”. Tricky word play on medicine.

  13. Dear Sandra,

    Before taper, learning evidence-based psychological flexibility skills to better handle the broader range of emotions and possible difficult thoughts and other experiences which may arise as major tranquilizers are decreased, they also be extremely helpful in assisting patients to wean. Please see the following articles which increasingly demonstrate efficacy of ACT in this process.

    http://www.actmindfully.com.au/upimages/bach%26hayes-_act_schizophrenia.pdf

    http://actskills.com/wp-content/uploads/Long-Term-Effects-of-Brief-Acceptance-and-Commitment-Therapy-for-Psychosis.pdf – A LONG-TERM FOLLOW-UP OF THE INITIAL STUDY

    http://www.scattergoodfoundation.org/sites/default/files/innovation-submissions/Gaudiano-BRAT.pdf

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3673289/ – A MEDIATION STUDY

    http://www.tandfonline.com/doi/abs/10.1080/17522439.2012.671349 – A MORE SOPHISTICATED MEDIATION STUDY

    http://www.amazon.co.uk/Acceptance-Commitment-Therapy-Mindfulness-Psychosis/dp/1119950791/ref=sr_1_1?s=books&ie=UTF8&qid=1432638636&sr=1-1&keywords=Acceptance+and+Mindfulness+psychosis – A BOOK LENGTH REVIEW OF THIS AREA

    http://www.amazon.co.uk/Incorporating-Acceptance-Mindfulness-Treatment-Psychosis/dp/0199997217/ref=sr_1_1?s=books&ie=UTF8&qid=1432638624&sr=1-1&keywords=Incorporating+Acceptance+and+Mindfulness+Into+the – ANOTHER BOOK LENGTH REVIEW OF THIS AREA

    Please email me if requiring full PDF of any of the above,
    Warm wishes, Rob Purssey

  14. How does Dr. Marder account for the large numbers of people who did recover and go on with their lives, some with only one other hospitalization and many with no other contact with the system for the rest of their lives, before the advent of the major tranquilizers? From all of the information that I’ve seen almost 60% of people moved on with their lives fairly well after their initial experience of emotional and psychological distress. Only about one-third of people remained in the wards of hospitals for most of their lives. Robert even talks about this information in one of his major presentations.

    • I know that recovery and going on with one’s life did happen because I experienced my mother doing so. She had one and only one hospitalization when I was a small child and she never went back again. She led a very productive and important life, raising three other kids besides me and being a very successful woman whom most people highly respected. I know that recovery with nothing is possible because I saw my mother accomplish it.

  15. Interesting that Dr. Marder gets away with making his statements of what “he believes” about most “schizophrenics” requiring long-term neuroleptics in contradiction to all that Johanna and Hugh presented, and in contradiction to the WHO cross-cultural studies, without having to provide any evidence on his own behalf. Or did he come up with something other than his personal clinical experience? Did anyone call him out on ignoring or minimizing the hard data that had been presented?

    —- Steve

  16. There is so much to explain that only experience after experience you have not had can help you to understand . If there is no interest in thorough studying new information why should one even get started explaining it ? If no RCT’s exist which means less cash payment who are the “professionals” who can generate interest ? If none , who needs their coercion? We appreciate your efforts and that of the other few efforting psychiatrists and the weight of the limiting brick wall of the guild. Yes there are better ways to free the captives or better, to enable them to free themselves . Of course each persons journey is unique. Applying Yuen Method , biology, psychology, Traditional Naturopathy, Homeopathy, holistic dentistry, non coercively individualized. and whatever tests to be needed or not needed and how much energetically , with the focus on what strengthens the individual neutralizing what weakens them , all supported by the individual at a subconscious level. It is all done with persons permission and if they prefer to reject feeling better they can bring back their former state as their free will is never violated . Psychiatric drugs for slow weaning “titration “into a liquid by a compounded pharmacy may be needed . Phsychiatrists role in this as they have access to the drugs ,would be temporary with them needing to understand to play their role in the back seat for the slow weaning off period deferring to everyone else and understanding in actuality what is anti -psychiatry and why. A Sotera like safe non coercive environment would be good . This type of effort should funded by insurance and payable with a Rewards card.