The Case Against Excessive Use of Antipsychotics

Robert Whitaker

Robert Whitaker, author of Mad in America, spoke to a full house at the NAMI Conference in San Antonio on Saturday, making his case against the use of antipsychotics.  For many his message was a hard one to hear.  I was among them, a parent, whose son, Max, sat beside me.  He’s been on and off antipsychotics for more than ten years to treat the psychosis that comes with his bipolar episodes.  Whitaker was telling us that might have been a mistake.  The key word being might.   His review of various research studies seems to indicate that a significant percentage of those with schizophrenia who did not receive antipsychotics or took them for a very limited time had better long- term outcomes than those who took them on an ongoing basis.

We all know that for years antipsychotics have been the medications of choice and that most of those with schizophrenia have been told they would need to stay on them forever.  The research seemed to back that up.  Yet Whitaker’s review found that those studies were flawed.  Worse, he says that using antipsychotics long term makes one more vulnerable to future psychosis.  It’s called “oppositional tolerance.”  While antipsychotics initially block the uptake of dopamine (the substance believed to cause problems), our brains eventually find ways to adjust, building new receptors and becoming even more sensitive to dopamine.  So what did I hear?  I heard that the medicine that was supposed to make those with schizophrenia better was making them worse.  Long term use of antipsychotics wasn’t  just ineffective, it was dangerous.

I resisted this message.  Though the studies he cited applied to schizophrenia, I couldn’t help wondering how it applied to my son with bipolar disorder.  I’m pretty sure every parent, family member, and person with mental illness who was taking antipsychotics was asking the same thing.  I’m not going to rehash Whitaker’s findings here.  You can find them elsewhere on the web or at NAMI.org/conference.

As a parent, I wanted to find flaws and I have many questions:

  • Does Whitaker’s review of the research tell the full story?  Are there gaps?  Is there contradictory evidence?
  • Does it apply to illnesses other than schizophrenia?
  • What particular antipsychotics were included in the studies?  Is it necessarily true that all have the same outcomes?
  • If his findings are correct, then what do we do about it?  Should those on antipsychotics be slowly weaned?
  • If there have in fact been brain changes as a result of the medication, can they be reversed?
  • And how on earth do we treat people who are psychotic if not with antipsychotics?

But in the end, his research was compelling.  Even more so when I heard that Finland, which adopted selective-use protocol of antipsychotics in 1992, has the best-documented long-term results in the western world.   I feel that NAMI has the responsibility to support further investigation and open up the discussion for a full airing from all stakeholders.

Whitaker’s findings, if true, would require a new paradigm of treatment, one that might require that someone who is psychotic be given “asylum,” or “refuge,” a place to rest and recover with limited or no antipsychotics, using other effective treatments that include more than just medication.  That seems impossible in our country, where the mental health care system is practically non-existent; where people are hospitalized for 3-5 days and released with a bag of samples and prescriptions; where insurance companies dictate release, arguing that recovery can take place outside of the hospital; and where too many psychiatric units are just holding tanks where little good treatment occurs.  If Whitaker’s findings prove true, it will take decades to address them and it will take money.  How can that happen in a country where we don’t provide even minimal care and where funding continues to be cut?

By the time Whitaker concluded his talk, the room was heavy with anger, despair, and fear.   Some people were angry at Whitaker for presenting studies that could prove inaccurate and yet could have such an impact on so many.  Others were angry at psychiatrists and big pharma for promoting medication that could be harmful.  Most difficult for those with mental illness and their families, me included, was the fear that the medicine we have relied on was damaging and that we had put our trust in the wrong hands.

My son, who as you’ll remember was sitting right beside me during Whitaker’s talk, is angry, very angry about what he heard, angry at doctors and the pharmaceutical industry.  And I am scared that he will decide to quit taking the one antipsychotic he is on, and I’m confused about whether he should.  He’s been stable, healthy, and happy for several years.  What will happen if he stops?  Will he fall back into the pit of mania and psychosis, end up on the streets as has happened so many times before?  He’s agreed he’ll speak with his doctor about what he’s heard, but I find myself wishing that our family could move to Finland.

** I welcome your comments about this difficult and controversial issue.

 


Comments

The Case Against Excessive Use of Antipsychotics — 85 Comments

  1. Hi Kathy – I’m not even sure what to think about this. I worked with persons with severe and persistent mental illness for a few years and I can;t even begin to think what it wb like w/o anti-psychotics. They would all need to be institutionalized. Oh dear…and there are no institutions anymore….

    • Kathy,

      If persons in early psychosis were treated in the way they do at Jaccko Seikulla’s program in Finland we’d have an 80 percent full recovery rate from first-episode psychosis.

      Even with the persons who are chronically mentally ill due to having taken the antipsychotics for long periods of time, they’d be much better off of the drugs but would require lots of support, affirmation, connection and care. At least they wouldn’t be dying 25 years younger than other people.

  2. It’s scary that people walked away from this presentation with these ideas. I thought he was going to tone down his message for NAMI and acknowledge the role of anti-psychotics in treating psychotic disorders. I appreciate hearing what he ended up saying.

    You might like to read Fuller Torrey’s critique of Anatomy of an Epidemic:
    http://www.treatmentadvocacycenter.org/index.php?option=com_content&id=2085

    I wrote about Whitaker’s presentation in Vancouver:
    http://www.huffingtonpost.ca/susan-inman/psychotic-mental-illness-medication_b_2856753.html

    Susan

    • WOW E Fuller Torrey, you know, that guy who has a program to forcibly drug each and every person who doesn’t behave as he wishes.

      While I think that it is perfectly OK to criticize Bob Whitaker’s work, after all this is still a free country, bringing E Fuller Torrey into the picture is about as useful as bringing Josef Mengele’s ideas on so called “mental illness” into the discussion.

      The psychiatric scam is falling apart in front of our own eyes. May 2013 will be remembered as a turning point that freed many of their oppressors. People who genuinely care about the well being of those who go through extreme mental states have a very important choice to make: either help improve their situation by denouncing the psychiatric scam for what it truly is, or continue to be part of the problem.

      • God how I envy clarity and conviction, clear definitions of right and wrong, black and white as I wallow in the uncertainly of myriad shades of gray. All I ask for is integrity and honesty. I ask that all of those who advance their theories and promote their points-of-view put aside political agendas, financial and self-interests, anger, fear, and hurt to find the best answers, the best treatment, knowing full well that every one of us is different and responds differently. I ask that we remember that there are lives at stake, that there are those with mental illness and those who love them floundering to do the right thing, the best thing, in order to find health and happiness and to live and prosper.

        Kathy

        • There are certainly lives at stake, such as mine,

          http://www.madinamerica.com/2013/01/ny-times-invites-readers-to-a-dialogue-on-forced-treatment/#comment-19770

          Psychiatry caused me to lose all contact with my parents and a divorce. My wife left me shortly after I stopped my meds because a psychiatrist scared the hell out of her. Guess what, many years after this thing happened, my standard of living is higher and I have a better job than the one I had then. Only, my social life has become severely limited because very few people know what happened. This has impacted my ability to find a new life partner. So to me, this is very personal indeed: my life has been tainted as if I had been a criminal except I committed no crimes whatsoever.

          In terms of self interest, I think that a very strong case can be made that the unholy alliance Big Pharma, academic psychiatry is the cause of the sad state of affairs. Big Pharma revenues from psychiatric drugs is around 80 billion dollars a year worldwide. To put things in perspective, that is almost twice the revenues of Google. When Chuck Grassley started his investigation into the conflict of interests by medical researchers receiving NIH money he didn’t intend to target psychiatry. It just turned out that all the most egregious scandals uncovered concerned psychiatrists,

          http://www.nature.com/news/2009/090916/full/461330a.html

          One would think that this would have put a limit to the practice of bribing psychiatrist? WRONG,

          http://www.medscape.com/viewarticle/780835_3

          “Psychiatrists Top List of Big Pharma Payments Again”

          Even more, Charles Nemeroff continues to cash in, despite having been expelled from Emory University as a result of the scandal,

          http://1boringoldman.com/index.php/2013/07/02/just-endure/

          This is not Scientology propaganda, but information that comes from reputable sources such as Nature.

          Another of the things that Chuck Grassley uncovered is that NAMI is basically a front group of Big Pharma. So indeed, they continue to promote meds and forced drugging as the solution to everything.

    • Here is the link to Whitaker’s response to Torrey’s review just so everyone here can get both sides. http://www.madinamerica.com/2012/05/e-fuller-torreys-review-of-anatomy-of-an-epidemic-what-does-it-reveal-about-the-rationale-for-forced-treatment/
      I understand Susan Inman’s concern and fear regarding Whitaker’s conclusions but that shouldn’t mean endorsing mainstream paradigms of care in mental health just because that’s the way it’s been for years. There is a lot to learn about what antipsychotics and antidepressants do to people over the long term. I truly believe that possibly they have a role in short term emergencies but that there are better ways to treat — and yes, heal — people over the long term.

  3. Kathy, you might be interested in other articles of mine which are also trying to sort out ‘big picture’ issues. The archive of my articles for Huffington Post Canada is: http://www.huffingtonpost.ca/susan-inman/

    I don’t think any kind of talk therapy would have brought my daughter out of psychosis. And apparently is also doesn’t work for the 20% of people in the Open Dialogue project in Finland – a tiny project. Be sure to read the theories informing OD – repackaging of family blaming.

    • Thanks for your input Susan and I’ll be checking the links you’ve provided. I believe that we need to be having an open and honest dialogue about this issue and I very much hope that NAMI will lead the way in supporting further research. Clearly, we need to know a lot more and further studies need to be conducted. I hope others will comment here as well. It’s a very emotional issue for those of us who have family members and for those who suffer from mental illness.

      I agree that talk therapy is just impossible when someone is psychotic. However, I’m willing to consider the fact that people who are psychotic may be able to recover with selective use of antipsychotics along with other forms of therapy, both medication and other. But the key is “willing to consider.” I want to know more.

      I do think Whitaker probably toned down his message at the NAMI Convention. He ultimately said “we need to allow for the possibility.”

      Again I welcome discussion here.

      • Kathy and Susan, I don’t necessarily agree about saying that talk therapy is not for someone who is psychotic. First of all, what do we mean by talk therapy? Just small talk or no talk, or Cognitive Behavioral Therapy? IMO, CBT is not appropriate for psychotic episodes. (It can be useful for when people are further along in their recovery process.) CBT in essence tells the person that he/she is the problem and here’s what you can do to fix yourself. This is a bad premise to engage a person who is already hyper anxious, scared, and feeling unworthy. When someone is floridly psychotic, the first need is to calm them down. That’s what antipsychotics do, but without the human touch. Human beings undergoing psychosis need someone to understand them, to reassure them that all will be well, to empathize. The best “talk therapy” at this stage is being there, being quiet, and striving to understand without making the person feel hopeless, stupid, weird, etc. Knowing what I know now, I would not have left my son in hospital for three months and only visited him for one week at the beginning of his stay and when we came to bring him home. He was lonely, freaked out, and couldn’t understand what was happening to him. He narrowly avoided ECT, and you know why? It was because the university chaplain literally held his hand and let him cry. Didn’t say much, just was there for him and could discuss his religious preoccupations with him if asked. My son had stopped eating and just wanted to die. The next day, after the chaplain left, the decision to give him ECT was withdrawn. No longer needed.

        • I thnk that anything that results in the person feeling slightly better is theraputic. Any contact with another human being that results in a person who is distressed becoming less distressed could be called psychotherapy.

          There is a lot of mystifying talk about therapy and counselling. I believe the basic job of a counsellor, or anyone who wants to help someone who is distressed, is to try to form a trusting relationship. Sometimes that is all you need to do. Sometimes you then need to help the person confront their problems.

          This is possible with people who are florridly psychotic. It’s hard work, but it is possible. It doesn’t matter to me whether you call the person doing the helping a friend, therapist, counsellor, chaplin or Open Dialogue worker.

      • As someone who heard Robert Whitiker over 2 years ago I also left in shock. Diagnosed and “treated with drugs” for over 30 years I had trusted doctors, therapists, and family members who all repeated that I had ” a chemical imbalance” and was “like a diabetic needing insulin”.

        I did research for over 6 months, approached my doctors and supports. I found numerous other literature supporting and explaining Robert Whitiker. His books “Anatomy of an Epidemic” and ” Mad in America” have bibliographies documenting his assertions.

        After over 30 years of drugs I was worse not better. I wanted to see if some physical and mental problems could be drug related. No one would help me and at the time I had no other resources. I detoxed. It was hard yet within 9 days my mania stopped. I did online research and found support. Peter Breggin has been advocating for decades, is a doctor, and has testified in court and found research at drug companies proving they knew about damaging side effects. His 2012 book ” Psychiatric Drug Withdrawal” is a huge reference.

        Will Hall also has a guide for free. Mindfreedom.org, madinamerica.com, beyondmeds (blog)…all have a lot of info.

        No one suggests or tells anyone to just stop psych drugs. There is danger. But finding help and support in person is almost impossible.

        I am slowly recovering. My health WAS adversely impacted. I used to think the drugs could be a cause. The side effects are brutal and life shortening. I would rather feel and learn to heal than to continue to not feel and suffer anyway just to profit others.

        Speaking of profit, at one time I was involved with NAMI and attended a local convention. As I considered organizations supporting the Recovery Model of care, used in Finland and growing in the US, I found disturbing info. NAMI is heavily tied to Drug Companies and relies on them for much of its funding. NAMI strongly promotes drug use as the MAIN support (i.e. without drugs there is no symptom reduction and other treatment can’t work) and drug company booths at the NAMI Walks outnumbered all others. Of course NAMI believes drug company marketing. You cannot afford to question the drug treatment Medical Model. You will lose $$$.

        I also was shocked, angry, hurt after months of research. I am one of a growing group questioning the “drug us up and shut us up” medical model. I refuse to be “compliant” without being fully informed. We have all been mislead by the APA and Big Pharma. Now you can choose- NAMI members you can research too. You do care…I know that. Listen, learn, support, and trust us. We are our best experts. Alternatives can and do exist and work. Help us, really help us this time. WE ARE YOU.

      • Good morning Admin,

        You wrote: “I agree that talk therapy is just impossible when someone is psychotic.”

        May I nuance as follows: talk therapy has to be adapted to the acuteness of the psychosis. The more acute the psychosis, the less talk to start, but the more the presence, the presence of someone not traumatising the psychotic. Then evolve from just presence to presence + talk.

        As is so often the case in other issues, the more talk therapy “seems” impossible, the longer it takes, the more patience it requires for the psychosis “to heal”.

        An excellent exemple of that fact is to see in Daniel Mackler’s DVD: “TAKE THOSE BROKEN WINGS”. It is about people testifying how they got out of the depth of their psychosis, even out of the most acute levels, hence paving the way for others, including for my family and my son.

        So, not any talk therapy, but well talk therapy adapted to psychosis acuteness makes healing possible.

        See also the other DVD of Daniel Mackler, “OPEN DIALOGUE”: it is about how the health carers achieve that in Lapland, and why it works.

        These two DVDs, respectively from the health carers side and from the psychotics side, plus our visit to Lapland, turned our family upsided-down, and our son is now healing. Family love is the best medicine. (smile)

        From sunny Belgium, have a nice weekend, Luc

    • Susan, I’ve had the good fortune to spend 4 days with Jaakko.Seikkula, one of the key people behind the Open Dialogue project, and I would have to say that “family blaming” is about as far from an accurate description of his attitude as I could think of! He is an amazingly humane man, seeing good in everyone, and humble as well. The Open Dialogue approach is to see psychosis as being about relationships, which means we are probably have things to learn (not just the “identified patient”) – but that doesn’t mean anyone is being “blamed” as the “bad ones.”
      As for your characterization of Open Dialogue as “tiny” – it may be only in one community, but it is the treatment everyone in that community gets in the last 20 some years, and in that period of time, the rate of people staying psychotic long enough to get a diagnosis of schizophrenia has declined by 90%, which is awesome. It’s hard to characterize all this as just being a fluke. Instead, we should be wondering how to make treatment like that more available to more people.

      • Hi Ron,

        Visiting Lapland and Finland last month, I also met with prof. Jaakko Seikkula for 3 days and even have a picture of hom standing next to my son.

        Hence I am happy to confirm the compliments that you stated.

        OPEN DIALOGUE is more than “tiny”: it is like the place where a stone fell into a lake, and the consequential waves are now spreading all around that “tiny” place. Ultimately, the waves will have spread throughout the entire lake.

        Back in Belgium, I am now contributing to spread the OPEN DIALOGUE wave, first in my own village, second in the SIMILES organisation, Belgian equivalent of NAMI, so that other families and their children can work and benefit to heal more wings. (smile)

        From sunny belgium, have a nice weekend, Luc

    • It is not talk therapy that helps people in first-episode psychosis. It is being in a place that is safe both physically and psychologically and in which they can be helped to go through the experience. Psychosis is essentially a move by a wounded and desperately scared psyche to heal itself. Read John Weir Perry. If you want to learn how to help people in first-episode psychosis, learn about the Soteria House that operated in the San Francisco Bay area from 1971-1983. It helped people in first-episode psychosis by helping them to go through the experience in a safe place. Typically, people became more stable after about a month and were able to leave after three or four months. There was no pressure on them to get better or to go back to where they were. Rather they were helped through caring and engaged relationshps to go through the experience and get to the other side. Not very medical but it works and it is the only thing that will work.

      • Hi Al,

        Your wrote: “Rather they were helped through caring and engaged relationshps to go through the experience and get to the other side. Not very medical but it works and it is the only thing that will work.”

        As a 58 years old father of a third child on four, now psychotic at his 20s, I have been looking for information: “what is happening, how do we cope, how do we solve that unexpected and never-heard-before-problem?”

        Sometime later, right here at Brussels, Belgium, Europe, a young colleague, 26 years old, with whom I was sharing a coffee during a break said to me: “it looks like that your son is experiencing what happened to my best friend, i.e. sensory hallucinations, anosognosia, etc.

        The difference is that my best friend did not go to psychiatrist. We are muslims and his parents took him to an Imam, working a stone-throw from the NATO Headquarter, here at Brussels. In that “safe” place”, where he was taken care, he felt better and better. He stayed there for two months, then went back to his family. He is happy again (N.O.T.E., i.e. “healed”), just like me, he got a full-time job, and during our free time, we go to fitness and chase girls together… (smile)

        Afterwards, I wondered: how did that Imam achieved such a result? – A few weeks later, while in Lapland, Finland, I realized that that Imam of Brussels is simply applying “love principles” as highlighted by the OPEN DIALOGUE method of Finland.

        The major difference between them is that the Imam is applying “oral-transmitted-tradition”, whereas, for the first time in Human History, the Finnish took to record and to publish how it works and why “love” works.

        Of course, due to discrimination, what that Muslim Imam keeps doing successfully is not well viewed… let us then remember that the Coran and the Bible share the same Old Testament.

        Most muslims still pray and go the Mosq, whereas fewer and fewer Western Christians go to Church. hence, the former still remember the value of love to solve the problem, whereas the patters tend to forget and to rely more and more on pills…

        So is Life: things balance from one end to the other and then back. And fortunately, people in the third world and in the Western world do not that in a synchrone way. hence, we can observe and measure differences…;-)

  4. Kathy,
    You have done an excellent job capturing the fears that all of us parents feel about Whitaker’s talk. I’d like to reprint your blog on my webpage.
    Thanks for writing it.
    Pete

    • Thank you Pete! I’d be honored to have you reprint the blog on your website. So many of us who just want to do the right thing for our kids are struggling with Whitaker’s findings and the whole issue of medication.

  5. Thanks for the update of his talk. I had heard that he toned down his message but probably not. I’ve done two Huffington Post columns on Whitaker and the Mad in America people and have been quite critical of what seems to be rather selective interpretations of the research. These are the links http://www.huffingtonpost.ca/marvin-ross/treating-schizophrenia-_b_2948969.html
    http://www.huffingtonpost.ca/marvin-ross/schizophrenia-treatment-medication_b_2217887.html

    And this is my current blog on the need for science: http://www.huffingtonpost.ca/marvin-ross/mental-illness-canada_b_3491511.html

    You should also look at the blogs written by Erin Hawkes who is a neuroscientist with schizoprhenia at
    http://www.huffingtonpost.ca/erin-hawkes/

    The Finland experience seems to be overblown. This is the most recent publication that I can find at https://docs.google.com/file/d/0B4s9BiGlRUCzRm1rRUlCMV9IZXM/edit

    What they do is not much different from what other early intervention programs do in other countries. In their data, they only have 95 patients of whom only 36 had schizophrenia

    • Thanks Marvin for your comments and the links to other blogs, research studies, and opinion. I’ll be reading them all and hope others will do the same.

      Kathy

    • Hi Marvin

      Just back from Lapland, Finland, where I visited Keropudas Hospital at Tornio, before going to the DIALOGIC congress at Hameenlinna, some 110 km North of Helsinki and where 300 (mainly Scandinavian) participants gathered to learn more about the OPEN DIALOGUE Method and to spread its use and benefits across Scandinavia.

      As both a father of a son diagnosed as psychotic, who is totally unhappy because of heavy dose of medical drugs and their perverse secondary effects, and as a scientist perceiving lots of flaws in the way psychiatry is interpreted and applied, I wanted to see by myself and to learn directly, i.e. first hand, from the Innovators how do they do and achieve the “healing” of psychosis.

      Therefore, once I became aware of this innovative approch and results, I have been to Lapland.

      Nothing overblown there: you cite only one paper, one study published in 2011. There are many, many more. Including in the Finnish language. They are worth reading too.

      Their work started some 30 years ago. It took trials and errors and lots of persistence to see the first results emerging. After 12 years, they organized the first yearly congress on the Healing of Psychosis. They are now busy with the organisation of their 18th yearly congress. the eighteenth…

      Thus, the European and American Pyschiatry are lagging some 30 years behind Lapland…

      Furthermore, although all medical doctors, psychiatrists included have the duty to learn about new and better methods to help their patients, there are now 18 years that 99.99% of the pyschiatrists do not bother to learn, hence failing to respect their duty…

      Just go and see for yourself:

      http://www.scandinavian-network.com/

      The 18th. Congress is being organised for end of August 2013 at Tromso, Norway.

      As you observed, in other countries there may be some new early intervention programs. In Lapland, Finland, they have better: they have results. Years of results, efficient results.

      In conclusion, from my own visit, I can confirm: a team of researchers in Lapland have succeeded at developing a shift in paradigm. As usual, such a shift in paradigm triggers two kinds of reactions, resistance to the change versus happiness resulting from the change.

      As far as I am concerned, I see that my now healing son and our family, we are back on the side of happiness, we are grateful to Lapland and we encourage others to learn.

      Have a nice weekend, luc

  6. Kathy,
    I didn’t attend Whitaker’s presentation probably because I dismissed his message. Why? Because our lives returned to a new normalcy once our son accepted his illness and started medication. Justin endured an 18 month first psychotic episode. I am worried that this time period may have been detrimental to his brain. He experimented with reducing his dose after 6 months and it was clear that his symtoms were returning. As we know about this illness, there is no one-size-fits-all answer, but for us, we are grateful for the medication that returned our son to us–fractured, but slowly returned to wholeness.

    • Hi Alison,

      Just like you, at the beginning, we were grateful for the medications. But not any more: psychiatrist kept increasing the doses and passed the point where our son’s health became even worse than when he was admitted to hospital.

      So, a simple a recommandation: last month, I learnt in lapland, Finland that, BEFORE starting to reduce doses, in order to prevent the return of symptoms, it is best to start with the family psychotherapy using and applying the Finnish OPEN DIALOGUE method.

      It is important to have the family to do its part of the work: when the family environment improves sufficiently, that family members learn to listen better, to respect better that psychotic family members, then the healing of traumas becomes possible and the psychosis does not return.

      It is a family-learning curve indeed.

      From sunny Belgium, have a nice weekend, Luc

  7. Kathy,

    As I said at the end of Robert Whitaker’s presentation, my wife and I made the decision to use anti-psychotic medication with full awareness of the potential side-effects, just as people who are administered radiation and chemotherapy for cancer choose treatments that are known to have risky side-effects. As I said at the convention, we did it because we had no other choice. It wasn’t because we were too lazy to do the hard work of parenting, but because our son was suicidal and living in an alternative universe–tapping on his bedroom wall to communicate with creatures who lived inside, pointing to empty space and asking who was standing there, fashioning a tomahawk and trying to attack a group of Frisbee golfers because they were trespassing on his territory, talking about the portals he could open at school to go places where others could not, and believing he was half cat.

    It bothers me when people who appear far more extreme than Whitaker use words like quackery and equate psychiatrists with terrorists–it is impossible to have an intelligent discussion with those who use such inflammatory rhetoric. They cherry pick information that supports their argument, ignore everything else, and may be too polarized to even realize they have lost their ability to be objective. Some of them even question the reality of psychiatric disorders, seemingly believing the brain is the one organ in the human body that is incapable of illness. Yet, strangely, they never seem to question the reality of epilepsy or amyotrophic lateral sclerosis which also have no biological tests–maybe it is because those disorders have profound physical symptoms that resemble something other than bad behavior, which can be blamed instead on bad parenting or poor morals. They insult my intelligence and are terribly judgmental.

    Those of us who are parenting children with psychotic disorders have to balance the good and the bad of medications. My wife and I would absolutely love for our son to quit taking anti-psychotic medication so that we could quit worrying about movement disorders, weight gain, and diabetes. But, that is not a possibility. Our son takes his medications so that he can function in a way that resembles the behavior of other healthy human beings, not step out in front of a car, not jump off a cliff, and not do something that causes a police officer to shoot him in self defense. Those are reasons why he takes anti-psychotic medication. I won’t expect those who would condemn me for giving him such medication to explain why they take whatever medications they have been prescribed.

    • I would gladly debate you but alas, I am moderated. In particular you answer yourself the question of

      “they never seem to question the reality of epilepsy or amyotrophic lateral sclerosis which also have no biological test”

      By saying,

      “maybe it is because those disorders have profound physical symptoms that resemble something other than bad behavior, which can be blamed instead on bad parenting or poor morals. They insult my intelligence and are terribly judgmental.”

      EXACTLY! Psychiatry pathologizes BEHAVIOR that psychiatrists do not like, not PHYSICAL SYMPTOMS.

      As Tom Insel said, and later David Kupfer agreed, DSM labels are created by consensus of BEHAVIOR DSM committee members do not like. This is why until the early 1970s homosexuality was a mental illness and now it is not. Or why according to DSM-IIII being sad after the death of a loved one beyond one year was clinical depression but DSM-IV lowered that to 2 months and now DSM-5 has lowered it again to 2 weeks. How convenient that each “lowering of the threshold” makes more people eligible for prescription of antidepressants. Same thing with binge eating or caffeine withdrawal.

      Where I differ with those two is with the notion that biomarkers will ever be found for psychiatry’s invented diseases. Since these are not genuine diseases but only metaphors for behaviors that psychiatry doesn’t like, it is impossible that a biomarker for a mind that doesn’t comply with the mores of the day will ever be found. The history of many religions is full of people that this day and age would be labelled as psychotic schizophrenic.

      • I agree with you that psychiatry labels too many behaviors as pathological. Such labeling does create a lot of skepticism about the profession, but I am unwilling to condemn the whole field of psychiatry as bogus. The prescription of anti-depressants to healthy people as a result of a lowered threshold for diagnosis is a reason why some studies show anti-depressants to be little better than a placebo. But, I still think anti-depressants save lives. A 2010 study published in the Journal of the American Medical Association concluded “for patients with very severe depression, the benefit of medications over placebo is substantial.” Many people apparently think I’m an irresponsible parent for giving my child an anti-psychotic to control behavior that I don’t like. And, I guess they’re right that I don’t like psychotic behavior. But, my critics are unqualified to assess my son’s need for anti-psychotic medication. As far as the lack of biomarkers for psychiatric disorders is concerned, I think a rudimentary understanding of the brain and genetics is a plausible explanation. It seems like you’re saying that symptoms of real disease must be manifested as something more than behavior, but I would argue we are biological machines and that highly atypical behavior is a symptom of a brain disorder–if our behavior is unrelated to our brains, where does it originate? Don’t say in the mind or soul, because there is certainly no empirical evidence for such things.

        As the parent of a child with a severe mental illnesses, the liberal diagnosis of psychiatric disorders and use of medications does creates problems for me and my child too! Strangers who know nothing of my child question the veracity of his illness and many conclude that his odd behavior is a moral failing, probably related to poor parenting–if only his parents had been more strict; if only they hadn’t been so strict; if only his mother had been more loving; if only his dad hadn’t spoiled him. Highly religious people are particularly good at making the connection between behavior and morality (i.e., being judgmental), which is why we rely on the criminal justice system to treat mental illness in the United States! Maybe fewer people would blame me or my son for his illness, or question his treatment, if psychiatric diagnoses were limited to severe symptoms.

        Your rhetoric on Pete Earley’s site of calling NAMI people crooks who should be jailed from their crimes, referring to psychiatry as quackery, and so forth is what I’ve seen frequently from contributors to Robert Whitaker’s blog site. You might want to ask Tom Insel if he adopted CCHR’s talking points, because I doubt that he would characterize his statements in such a way.
        I believe people have been misdiagnosed and abused by the psychiatric profession, but do not see a conspiracy. I’m sure that I would greatly resent experiencing such mistreatment if it had happened to me, but think it results mostly from ignorance rather than malice. I also believe that anti-psychotic medications have awful side effects, but they’re all we’ve got and better than nothing in cases where severe psychosis is present–I’ve heard more than one parent say they can’t worry so much about side effects when they are focused mainly on keeping their child alive. Finally, I believe that doctors in every medical profession have conflicts of interest with pharmaceutical companies that are motivated by profit, but also think most parents and doctors are doing the best they can to treat poorly understood illnesses.

        • Joseph,

          I must say that I appreciate your less condescending tone. I am not speaking out of ignorance but out of having researched the matter thoroughly after my own life was destroyed by psychiatry. Unlike the average survivor of psychiatry, I have the scientific background to make unequivocally the case that psychiatry is a scam in the sense that it doesn’t pass the test required to be a scientific discipline: the ability to make falsifiable predictions that are verified by empirical experiments. Psychiatry is closer to astrology, in fact to homeopathy, than to oncology or other scientific areas of medicine.

          With that said, let me address the points where I disagree with you,

          “But, I still think anti-depressants save lives. A 2010 study published in the Journal of the American Medical Association concluded “for patients with very severe depression, the benefit of medications over placebo is substantial.” ”

          Actually this is the type of faulty reasoning that psychiatry is used to get a pass with. These are the facts that have been established already by analyzing clinical trial data:

          – When all the data on the efficacy of antidepressants is combined, by considering both published and unpublished data obtained directly from the FDA through freedom of information act requests, antidepressants are shown to be not better than placebos overall. On the cases of severely depressed people, as measured by the Hamilton Rating Scale for Depression, the advantage of antidepressants over placebo is statistically significant but minimal. Rather than pretending that antidepressants have an effect, it is more reasonable to conclude that the placebo response of SSRIs is higher because of the side effects (ie, SSRIs behave basically as active placebos whose efficacy is being compared to non active placebos or sugar pills). This conclusion was reached independently by two different metastudies published by EH Turner and Irving Kirsch at the New England Journal of Medicine and PLOS medicine respectively in 2008.

          – SSRIs are known to increase the risk of suicide on people taking them. In fact, the FDA has forced manufacturers of antidepressant to include a black box warning on the matter since 2004 specific to young people. But Elli Lilly knew before the approval of Prozac that it caused people to become suicidal or violent http://edition.cnn.com/2005/HEALTH/01/03/prozac.documents/

          “An internal document purportedly from Eli Lilly and Co. made public Monday appears to show that the drug maker had data more than 15 years ago showing that patients on its antidepressant Prozac were far more likely to attempt suicide and show hostility than were patients on other antidepressants and that the company attempted to minimize public awareness of the side effects.”

          – In May 2013 the CDC published that between 1999 and 2009, the rate of suicide had increased by 30%, a time that was coincident with more Americans being on antidepressants than any other time in history.

          While these point taken individually do not prove anything, taken together make a great case that far from helping anybody, SSRIs have been responsible for the deaths of many innocent people who took their own lives under their influence.

          “But, my critics are unqualified to assess my son’s need for anti-psychotic medication.”

          All I can tell you is that my parents lost a son for having done the same thing to me. I was not psychotic, only not willing to go to certain places with higher than average rates of HIV positive people nor I was willing to shake hands with people that looked creepy. I was forcibly drugged for that, escaped my tormentors and the different legal frameworks in the US vs totalitarian (as far as psychiatry is concerned) Europe is what allows me to have a very comfortable life away from SSRIs and antipsychotics, both of which are prescribed for OCD. In Europe, its European Court of Human rights has repeatedly sanctioned the type of abuses that have been banned by our SCOTUS but that NAMI is continuously promoting http://egov.ufsc.br/portal/sites/default/files/anexos/33124-41808-1-PB.pdf “As for the appropriateness of the medical treatment provided, various cases such Grare v. France (18835/91) or Warren v. United Kingdom (36982/97) show that the ECHR always trusts the psychiatric medical evaluation, as far as it satisfies the criteria of usual practice”

          “As far as the lack of biomarkers for psychiatric disorders is concerned, I think a rudimentary understanding of the brain and genetics is a plausible explanation. It seems like you’re saying that symptoms of real disease must be manifested as something more than behavior, but I would argue we are biological machines and that highly atypical behavior is a symptom of a brain disorder–if our behavior is unrelated to our brains, where does it originate? Don’t say in the mind or soul, because there is certainly no empirical evidence for such things.”

          This touches the dogma that the mind doesn’t exist as an independent abstraction. You don’t have to believe in God to realize that “the mind” is a very useful abstraction to talk about problems in behavior. In computer science the equivalent is the difference between software and hardware. If I give you a computer, all you can see is the hardware, the software is nowhere to be seen. Now, to pretend to deal with all software problems as if they were hardware problems, just because you don’t see the hardware, is preposterous. Yet, this is the lie that is perpetrated by the psychiatric establishment. And to prove that this abstraction is useful I can go no further than to the numerous examples of people who recovered from their extreme mental states with no hardware (ie biological) interventions whatsoever. From the better known (John Nash who is very adamant that the movie A Beautiful Mind distorted this part of the story) to the lesser known http://openparadigmproject.com/ .

          “Highly religious people are particularly good at making the connection between behavior and morality (i.e., being judgmental), which is why we rely on the criminal justice system to treat mental illness in the United States! Maybe fewer people would blame me or my son for his illness, or question his treatment, if psychiatric diagnoses were limited to severe symptoms.”

          Religion has nothing to do with this. The preeminent critic of psychiatry, the late Thomas Szasz, was an atheist awarded with the Humanist of the Year Award by one of America’s most prominent atheist societies. http://www.youtube.com/watch?v=10qCZATR4PQ

          “Your rhetoric on Pete Earley’s site of calling NAMI people crooks who should be jailed from their crimes, referring to psychiatry as quackery, and so forth is what I’ve seen frequently from contributors to Robert Whitaker’s blog site. You might want to ask Tom Insel if he adopted CCHR’s talking points, because I doubt that he would characterize his statements in such a way.”

          NAMI people, and those who support its program, are indeed crooks. Thanks to the investigation by Chuck Grassley we do know that NAMI is nothing more than a front group for Big Pharma. With respect to Tom Insel, this is what he said,

          http://www.nimh.nih.gov/about/director/2013/transforming-diagnosis.shtml

          “While DSM has been described as a “Bible” for the field, it is, at best, a dictionary, creating a set of labels and defining each. The strength of each of the editions of DSM has been “reliability” – each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity. Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure. In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever”

          That has been a CCHR talking point since its founding. There is no workaround to that. A few days later, David Kupfer, the chairman of the DSM-5 task force, agreed,

          http://www.madinamerica.com/wp-content/uploads/2013/05/Statement-from-dsm-chair-david-kupfer-md.pdf

          “The promise of the science of mental disorders is great. In the future, we hope to be able to identify disorders using biological and genetic markers that provide precise diagnoses that can be delivered with complete reliability and validity. Yet this promise, which we have anticipated since the 1970s, remains disappointingly distant.We’ve been telling patients for several decades that we are waiting for biomarkers.We’re still waiting”

          “I believe people have been misdiagnosed and abused by the psychiatric profession, but do not see a conspiracy.”

          I do not believe in conspiracy theories either! All the information that I have provided is public and comes from reputable sources (Nature, CNN, the NIMH, the FDA, etc). Let’s say that something as old as greed (on the part of Big Pharma and the psychiatric profession) will do. It’s like saying that there is a vast conspiracy by Americans to slave Chinese factory workers when in fact what happens is that the desire of Americans for cheap electronic gadgets together with the Chinese government desire for economic growth is responsible for the situation of these workers.

          “I’m sure that I would greatly resent experiencing such mistreatment if it had happened to me, but think it results mostly from ignorance rather than malice.”

          Believe me, you have absolutely no clue of what is like to be treated as a criminal without being one, just because some psychiatric crooks have the legal power to impose their invented labels onto you. In my particular case, my American citizenship is the difference between freedom and incarceration by psychiatric crooks.

          “Finally, I believe that doctors in every medical profession have conflicts of interest with pharmaceutical companies that are motivated by profit, but also think most parents and doctors are doing the best they can to treat poorly understood illnesses.”

          Only, as the links I provided above show, the conflict of interests are more pervasive in psychiatry. And that is because psychiatry is not a scientific endeavor. After all you cannot be subjective about whether your cancer has been cured: either you die or you don’t. The lack of falsifiable predictions in psychiatry is what makes the field a quackery that can be then abused by Big Pharma more than other fields of medicine.

        • Joseph, I am a mother of 3 sons who have experienced psychoses, as I have. It seems to ‘run’ in our family but that doesn’t mean it’s genetic. We have also all experienced recovery from psychiatric diagnoses and treatment. Other family members have also experienced psychoses and hospitalisation.

          I didn’t like being on anti-psychotics, they depressed me and took away my decision making abilities. And so I aimed to get off them within the year after a psychotic episode (in 1978, 1984 and 2002 – the first two postnatal, the later menopausal). I made a full recovery after every episode which involved forced psychiatric treatment, grabbing and jagging I call it. Therefore when my sons experienced psychoses, between youth and adulthood, on leaving rural home to live in the big city, I advocated for them, gave peer support along with the caring role.

          Although I don’t like psychiatric drugs unfortunately we have no other alternatives, at present, for treating/helping people in psychoses. I live in Fife, Scotland, UK. So when my sons were psychotic I knew there was no option but to get them psychiatric ‘care’. I use the word ‘care’ euphemistically as I think that psychiatric treatment is at times barbaric. Especially if a person is non-conformist or non-compliant. And all my family are of this persuasion. We are independent characters, free thinking, leaders rather than followers. So we resist authority and totalitarian states which psychiatry is, being a patriarchal institution. They force treatment on the ‘non-compliant’ even when the patient isn’t a danger to self or others.

          I’d like to see alternative ways of working with people in mental distress or psychosis, choices, so that people aren’t forced to comply or to swallow psychiatric drugs if they don’t want to. I’ve been forced and I didn’t like it. I call it psychiatric abuse. It can be very traumatising, to be held down and forcibly medicated or threatened with it, which I think is the same thing.

          I call myself a survivor, of mental illness and psychiatry, having resisted the schizoaffective disorder label by taking charge of my own mental health, tapering the drugs, and making a complete recovery, in 2003/4. Aged 60 I’m now a writer, activist and campaigner in mental health matters, taking part in many Scottish national mental health groups from the survivor and carer perspective. I really do want to see choices, alternatives and better ways of working with psychoses, mental distress that don’t always have to involve forced drugging.
          Regards, Chrys

          • Hi Chrys,

            First I want to thank Kathy again for her blog. Over a weekend time, I found here very useful information and interaction and a “jumping-board” to more information and interaction, that I had been seeking for about two years now. I am very grateful.

            Second, as you wrote: “I really do want to see choices, alternatives and better ways of working with psychoses, mental distress that don’t always have to involve forced drugging.”

            Living across the North Sea in another Kingdom, for the past two months, I came across better ways not really “of working with psychoses”, but more importantly, more efficiently, better ways “of successfully “healing” psychoses”.

            HEALING is different than “curing”!

            The choice, the alternative, the way, that you seem to want, is called the OPEN DIALOGUE Method. When applied properly, it proved so efficient that (1) 70% of the patients do not need any medical drug at all, (2) 81% go (back) to full employment and, last but not least, (3) there are 0% relapse, i.e. no relapse at all.

            The research and Development that led to the OPEN DIALOGUE method was started some 30 years in Western Lapland, Finland. As usual, and they recognize this, they made early trials and errors. With persistence, they progressively improved and improved their method and optimized their results.

            Today, first in the world, the Keropudas Hospital, a psychiatric hospital, at Tornio, Lapland, on the border with Sweden and on the shore of the Baltic Sea, is empty!

            Having just read that information new to you, did you say/think “unbelievable”?

            When I read that, I thought so too: “unbelievable!” – Then, I checked the references, cross-checked them, etc… Then again, I decided to go there with my son, and to go and see by ourselves, to meet the innovators, and to learn directly from them how do they do.

            To see an empty psychiatric hospital, what a wonderful view!

            So Chrys, on your way “to heal” psychoses, I recommend you to start here, with Daniel Mackler’s own visit report, which triggered mine:

            http://beyondmeds.com/2011/03/21/finnishopendialogue/

            Afterwards, in order to learn more, get and see the following two DVDs of Daniel Mackler:

            * OPEN DIALOGUE: it is by the team of Lapland researchers who developed the method. They explain themselves how it works and why it works. While in Finland, my son and myself were very fortunate to meet some of them for several days. Sometime, they participate to a congress in the USA, the UK, etc.

            * TAKE THESE BROKEN WINGS: it is by people who tell how they succeeded to get out of their psychos, how did they heal. Indeed, a psychos is not a disease to be cured by drugs, it is a wound, an injury requiring “healing”. That important nuance between “healing” and “curing” makes the difference to help people and their family to get out of present psychiatrico-medical confusion towards a successful recovery.

            You can find Daniel Mackler’s DVDs here:

            http://wildtruth.net/dvd/

            Thank to Lapland’s results, we now have a choice between a non-ending-cure-with-drug and a drug-free-healing-method.

            Next Step: to diffuse Lapland and Finland results out of Finland to the rest of the world.

            Today, I am in The Netherlands. It is a sunny day.

            So, Chrys, and Kathy, from the Kingdom of The Netherlands, have a terrific Monday!

            Luc

    • Joseph,
      You must be describing ME! LOL. I have been known to use words like quackery and equate psychiatrists with terrorists (more like legalized drug pushers), but I’ll bet you could have an intellgent, non-inflammatory conversation with me, if you, too, are game. We all cherry pick information that supports our argument, ignore everything else. The sad fact is that the medications have polarized us. Introducing psych medications were like dropping a bomb into our household. What do they call those bombs that scatter debris everywhere? We were the side effects of the meds. My husband and I fought about them. My son diappeared under layers of fat and his self-esteem plummeted. I just want to point out that the DSM listsm and psychiatry treats, “mental” disorders, not brain disorders. The mind and the brain are not the same. If they wer, my son would be were,

    • That we don’t have alternatives such as Soteria and Open Dialogue is tragic. There is a Soteria House in Anchorage, Alaska and it is doing well. We should have access to Soteria houses and Open Dialogue approaches in every community in the United States. Tragic that Medicaid and other payers will spend billions of dollars on the drugs but not one dime on Soteria or Open Dialogue.

  8. Great perspective, Kathy. I think it raises and challenges new thinking but I also believe scientific review by peers is always needed.

  9. thank you for sharing your thoughts Kathy,

    I am someone who got my life back when I freed myself from antipsychotics…the harm they’ve done me was and continues to be great. I want to share two pieces I wrote about my path.

    Monica’s story: the aftermath of polypsychopharmacology
    http://wp.rxisk.org/monicas-story-the-aftermath-of-polypsychopharmacology/

    and

    Everything Matters: a Memoir From Before, During and After Psychiatric Drugs
    http://www.madinamerica.com/2013/05/before-during-after-psychdrugs/

    I’ve been an activist throughout this whole journey and wrote even while bedridden due to the extreme iatrogenic damage caused by the drugs to help others find safer and gentler ways through this terrain and to therefore avoid what turned out to be for me extremely neurotoxic drugs. Thousands have now been responding to such gentle care. I’ve seen the transformation in so many…it’s been a wonderful blessing that’s come from the great harm I’ve endured.

    On my website Beyond Meds that I refer to in the above two pieces there is a navigation menu at the top of the page where there are 100s of posts that help people find whatever their unique combination of healing modalities might be. Among those posts are also dozens of recovery stories of folks…just like me that found that psychiatry had been sorely wrong about their prognosis…people who now thrive drug free.

    Coming off drugs should not be done precipitously. It can indeed be dangerous as withdrawal syndromes are very real. It needs to be done with great care and planning. I have pages of resources on that too on the blog.

    • Thank you Monica, for your thoughts and for posting over on your site, Beyond Meds. Thank you especially for your plea for civility as we discuss these issues. I add my own request to yours. When things get heated and voices harsh, people don’t listen. We need reasoned conversation not accusations or research that is “cherry picked” to make our own points. We need honestly and integrity.

      My son, Max, and I also recently co-authored and published our memoir, Walks on the Margins” A Story of Bipolar Illness. In it, we alternate chapters and tell our story from each of our points-of-view. For me, it’s a narration of the painful years trying to find help–the failed treatment, the fights with insurance, the issues of commitment and medication, and the fear, the huge fear, that my son would not make it out alive. For Max, it’s the story of his experiences inside the illness and the coming to terms with what it means, an on-going process. Today, he’s doing well, still taking a low dose antipsychotic and seeing his therapist, who is a psychologist and prescribing nurse. They’ve spend many hours talking and respect one another. But it’s his art that is redeeming for him. His piece is on the cover of the book.

      As I said in my blog, Whitaker’s talk was confusing for both Max and me. The angst of those with mental illness and their parents was so apparent during the talk and in the comments here as well. For us or at least for me, it’s not a matter of which side I’m on. It’s a matter of the concern we feel for those we love so much and the desire for the best outcome–happy, fully-realized lives in communities that value all people.

      • Hi Kathy,

        Art is redeeming my son too. (smile)

        You wrote: “It’s a matter of the concern we feel for those we love so much and the desire for the best outcome–happy, fully-realized lives in communities that value all people.”

        This is precisely why we decided to go to Lapland, Finland, last month, to see by ourselves and to learn, and then to share.

        In Will Hall’s “Harm Reduction Guide to Coming Off Psychiatric Drugs”, he stated that 44% of the people who have been between 6 months and 5 years on medications have succeeded to come off.

        As our son falls in that range now, we want him to succeed. In Lapland, we learnd that the number of 44% success could be increased, probably up to 85-90%, given due consideration to family psychotherapy done at the same time than the reduction.

        Once again, that combination is a family learning-curve: to look at our child on his/her own when reducing doses and then wait is not enough. To undergo the family healing process is important.

        What will happen next? – I guess that the more the OPEN DIALOGUE method and its beneficial results will diffuse, the less people will go to psychiatrists and on drugs, and some day, without fighting it, that expensive system will collapse on its own.

        From sunny Belgium, have a nice weekend, Luc

  10. I was diagnosed with bipolar disorder at the ripe age of 45. It runs in my family. Now I suspect it was kindled by antidepressant use. I was really a success story with meds, I guess. About a year ago I was feeling so well I asked my dr. If I was really getting $10/day value from Zyprexa, and under his direction started weaning. I got physically and emotionally sick. I started reading alternative websites, and I got mad and determined. I stopped Zyprexa the end of December. I got manic. I realized it might be the Wellbutrin, I started weaning. I will be off probably in the next week. I haven’t had any mania issues once I got below a therapeutic dose of Wellbutrin. I am still on lithium and undecided what to do with it. My levels are very low as my (now former) doctor did not raise the dose as I gained weight.

    Although I have worked (3days/week) since the turbulence of the first 6 months, I now realize the Zyprexa put my soul on ice. I call those years the Zyprexa Bubble. I don’t know of anything that would make me go back.

    I don’t usually post to things like this, but my family has made all the difference to me, both my husband and my mom and sisters. That said, I know you are facing much, much more complicated situations, but realize that you are the best things that have ever happened to your children. I also think that looking at physiological contributors is very, very important.

    The two websites that have helped me the most are theicarusproject.net (Harm Reduction under Resources) and survivingantidepressants.com. Good luck to each of you parents and your precious children!

  11. Hi Kathy,

    Thank you very much for your post. Living far away in Europe, I could not attend Dr. Whitaker’s oral presentation at the NAMI conference at San Antonio, TX. But I do what 99.99% of the psychiatrists of Europe do not do: I am reading his book.

    As both a father and a scientific researcher with a B.Sc. in Biological Sciences, an M.Sc. in Physiology and a Ph.D. in Genetics and Biochemistry, I find it a good book, a good book challenging today’s Western psychiatrists dangerous dogma, i.e. that pyschosis and schizophrenia are diseases that cannot be cured and that sufferers are condemned, by the pyschiatrists sponsored by the pharmaceutical industry, to medication, i.e. drugs, for life

    Reading BeyondMeds.com, I heard that he mentioned the results obtained in Lapland, in Northern Finland, at the Keropudas Hospital of Tornio, a little town on the border with Sweden and on the shores of the Baltic Sea. The key result is that psychiatric hospital is now empty. Why is that so?, how is such a result possible?

    Simply, after years of research efforts, the Finnish team of researcher has managed to identify the cause of psychosis, hence they worked at solving the problem and developed a “SHIFT in PARADIGM”:

    * On the one hand, they realized that psychosis and schizophrenia are not a disease. It is a WOUND, a family wound, a social wound, an environmental wound. In that wound, sensory hallucinations, depression and suicidal thoughts are signals that or child needs a change in his/her life.
    * On the other hand, they learn to treat psychosis preventively, i.e., before that it becomes acute, hence no need for medication. So, they developed the Art of “HEALING” mental wounds, which is completely different than curing. They called their psychotherapy method OPEN DIALOGUE.

    As a scientist, I can apply the simple statistical “test of difference”:

    * when psychosis and schizophrenia are treated as disease, there is never a cure. Furthermore, sufferers, i.e. guilty, are sentenced to be “medically” drugged for life;
    * whereas when psychosis and schizophrenia are treated as wounds, then sufferers do heal and after about a couple of months, they can live drug-free and go back to their studies, jobs, families and loves.

    Reading the highly valuable information compiled on BeyondMeds by Fairy Monica with her magic keyboard, I became aware of the results of Keropudas Hospital two months ago, on May 5th 2013. After a week of checking, controlling, cross-referencing, studying relevant peer-reviewed publications, re-calculating myself some of the stats, I fetched my son at the hospital, brought him home for the evening as usual, and I said to him: “well, i do not want to raise false hope, I checked and re-checked this for a week now, so have a look.”

    So, in his turn, he read the relevant webpage of BeyondMeds, the one with Daniel Mackler’s report of his own visit to Keropudas Hospital in Lapland, Finland. Two minutes later, with tiny sparks in his eyes which I had not seen anymore for over two years, he asked me: “do you think that I will ever have a chance to come out of this too?”

    I smiled and answered: “I believe in this innovation, and I promise you that you will.”

    Some more sparks litted in his eyes, and he asked: “how?”

    “Good question! – Tornio in Finland is about 3.5 hours flying. So, let us fly to Lapland, see by ourselves, visit Keropudas Hospital and learn directly from the innovators how do they do?”

    A month later, we landed at Kemi/Tornio Airport and we have seen by ourselves: an empty psychiatric hospital, what a wonderful sight, what a marvellous visit, and how charming are the Finnish innovators!

    Moreover, coincidence, during the same week, there was a scientific conference with 300 participants who gathered at Hämeenlinna, some 110 km North of Helsinki, to learn more about the OPEN DIALOGUE method. On our way back from Lapland, we also participated to that conference.

    For 5 weeks now, back home, combining family psychotherapy enriched by the Finnish method and careful medical drugs desintoxication, our son feels better and better, much less dizzy, hand-trilling reduced down now to a level that he can play good music and piano again, eating in a healthier way, doing sports again, etc, etc, and even making plans to re-start his studies that psychiatrists had ordered him to stop and to write the music that will tell the story of the Finnish shift in paradigm from drugs failure and harm to successful healing.

    CONCLUSION:

    1) Looking back in time, to 1908 when the word “schizophrenia” was coined, the etymology says that it comes from the old Greek, “phren” which means “mind”, and “schizein”, which means “wound/split/slot/injury”.

    How is it possible that psychiatrists, who are medical doctors, have confused a “wound” with a “disease” and derived to such an abuse of so-called “medical” drugs? Only in psychiatry? Who is profiting?

    2) Healing is different than curing, and when healing is applied to psychosis and schizophrenia, it works: sufferers can “heal their wings and then fly free again. As always, love, family love in this case, is the best medicine. Once again, results of the OPEN DIALOGUE Method of the Finnish Innovators emphasise this fact.

    NEXT STEP: to contribute to spread the news and the results of the OPEN DIALOGUE Method to the Families who are concerned.

    So Kathy, on the way to help healing the wings of your beloved ones,

    My best wishes for success,

    Luc

    🙂

      • The Beyondmeds blog does us all a major service. It’s nice to see a specific example of how someone was helped by it. Since, we all can’t go to Finland, nor do we have the time to wait for Open Dialogue to come to our communities, some people may wish to consider taking the Families Healing Together online course that begins July 16th. *online family mental health education designed to help families and individuals transform the experience of emotional distress, psychosis and other challenges that may have psychiatric diagnoses. Our strengths-based recovery approach helps families move from distress, fear and confusion to a greater sense of wellbeing, wholeness and connection.* The course offers links to many resources, including references to Open Dialogue.
        http://practicerecovery.com/2013/03/pilot/

        • Waow!, Excellent initiative. Thank you Rossa.

          We do not need to wait for Open Dialogue to come to our communities any more. With such an initiative, you are speeding up the process.

          Just my guess then: with more similar initiatives promoting the value of family love to solve psychoses, the present pharmaceutic-psychiatric system will collapse on its own. We do not even need to fight them: we by-pass them, and we leave them behind…:-)

          As always, love, and more specifically, family love in this case, is the best medicine, isn’t it?

          Many thanks to all the Participants, and many thanks again to Kathy: you made my weekend, now you are making my Monday.

          Do not take care.
          Take Love!

          Luc

          (from the little Kingdom of Belgium)

  12. Post-Scriptum:

    By the way Kathy, you do not need to move to Finland. On a fairly frequent basis, the innovators of Finland fly to the USA to participate to some congress.

    Furthermore, you can also use that marvel of modern technology called “Skype”.

    Back home, what we found most difficult was not to move out of the psychiatric hospital and to cancel appointments with psychiatrists, but to identify, especially in this time of end of schools and departure to summer holidays, a psychotherapist willing to learn and to enrich him-/herself with the OPEN DIALOGUE Method.

    In order to make a self-start, I recommend two of the DVDs of Daniel Mackler, the one entitled OPEN DIALOGUE, where the innovators explain their discovery and how heir method works, and “Take those Broken Wings”, where ex-psychotic tell why they fell into psychosis and how did they heal.

    Very instructive DVDs: it turned our family a bit upside-down which was exactly the kind of potion that we needed.

  13. Kathy,
    Thank you for writing so thoughtfully about your experience attending Robert Whitaker’s talk. This is a long comment, but you have raised lots of important issues that I care about and have some experience with as a mother. I am quite familiar with the dilemmas you are facing. Ten years ago my son had a psychotic break that was brewing for a couple of years before that. Fear and denial was a big factor in my hesitating to seek help for him at first, but fear was also a factor when I began to question the current mental health treatment for psychosis several years before Whitaker’s book came out. When I began to question the value of what I was seeing happen to my son I was fearmongered into submission by the doctors. To address your question, I actually don’t distinguish bipolar from schizophrenia, as they are both treated with the same antipsychotics and depending on the state you are in when you arrive at the emergency room, you may get a different diagnosis. The doctors couldn’t decide at first whether my son was bipolar or schizophrenic, so I guess they voted LOL. IMO, both are energy imbalances.

    Not only was my hope being ground down on a daily basis by the doctors, but ten years ago, try finding any information that deviated from the standard line that schizophrenia is a brain disease (just like diabetes) and that antipsychotics were for life. That’s why I am delighted that NAMI is opening up to differences of opinion on a subject (medications) that dramatically impacts families.

    I always fought to keep my son on the lowest dose of meds, although, I since come to understand that the lowest recommended dose is usually way, way higher than the lowest effective dose. I can personally attest to seeing my son do very well on a fraction of the lowest recommended dose of two different drugs. (One doctor shouted at me that 25 mg of clozapine wasn’t even therapeutic! But he did fine at that level, and eventually got off clozapine altogether.) My observations have been validated by this recent Canadian study. http://tinyurl.com/c3zyer4

    But more often than not, McCormack said, the dosage is too high. A phenomenon he calls the “unintentional medication overdosing” of Canadians is due to a systemic flaw in the drug regulatory process, he said. To prove that a medication works in clinical trials, drug companies select a dose high enough to generate a response in the majority of patients. The studied dose becomes the marketed dose – and the dose that most health professionals choose, he explained.

    Studies to determine the lowest effective dose are rarely conducted. Nevertheless, many drugs work in much smaller doses, with fewer side effects, he said. For example, when the antidepressant Sinequan was introduced as a sleeping aid, the studied dose was 25 to 50 milligrams. Years later, however, a follow-up study found that 1 milligram of Sinequan “was effective for sleep,” McCormack said.

    Unless a condition is severe or life-threatening, he said, patients should ask their doctor about starting with one-quarter to one-half of the marketed dose, and then increasing the dose as needed.

    Monica Cassani says that the lowest effective dose can be much, much lower that the examples cited in this study.

    I would like to see my son get off his current “lowest recommended dose” med for good. In the past, he has tried, but sooner or later went back on one. There are many ways of looking at, many possible explanations (beyond the claim that relapse invariably proves the need for meds) for, why he began exhibiting the anxiety and peculiarity that landed him back on medication. My goal over the past ten years has been to build resilience in him (and in me) so that eventually, he will have developed better coping mechanisms. Getting well is not just a question of getting off the drugs. Resilience comes through experience, growing self-confidence, psychotherapy, positive messaging from family and friends, and taking ownership of one’s life. My son has done all of these things (and more) and he’s in a pretty good place right now to try again to get off the meds.

  14. In my opinion, the issue is having a fully informed choice regarding the use of antipsychotics. People might want to read a 4 part blog entry by Sandra Steingard, a psychiatrist who writes on the Mad In America Site. She takes issues with some common perceptions such as a person with schizophrenia needing to be on meds for life.

    http://www.madinamerica.com/2013/03/optimal-use-of-neuroleptic-drugs-introduction/
    http://www.madinamerica.com/2013/03/optimal-use-of-neuroleptic-drugs-part-2/
    http://www.madinamerica.com/2013/04/optimla-use-of-neuroleptics-part-3-duration-of-untreated-psychosis/
    http://www.madinamerica.com/2013/04/optimal-use-of-neuroleptic-drugs-finale/

    Mr. Meyer, you make some good points but please remember that many people have been severely abused in the mental health system and have equated inpatient forced injections, restraints, and forced stripping to chemical rape. Asking them to show restraint would be like asking someone who was raped to not be angry. Perhaps with that understanding, it might easier to understand why people feel extreme anger at psychiatry.

    Finally, as someone who slowly successfully tapered off of 4 psych meds over 4 years, I would strongly advise anyone who is considering going off of meds or has a loved one who is wants to do this to make sure the taper is done very slowly. As a nurse explained to me, since psych meds make changes throughout the whole body, the system needs time to adjust to having less meds in the body. Tapering too quickly would be like putting the brakes on the car at 60 miles per hour and leads to withdrawal symptoms that can look like a relapse but aren’t.

    I thank Kathy for her blog entry and for allowing a diversity of opinions. Even though I feel psych meds were bad news for me big time, I definitely understand that everyone’s experience is different.

    • Hello AA,

      First, congratulations on your success at coming off 4 psych drugs. As 4 years seems long, congratulations also for your persistence.

      As a father of a son suffering psychosis and prescribed 3 drugs, and as a scientist, I am looking for information relevant to tappering time, environment and method required for success.

      From my present understanding:

      * to tapper WITHOUT any family psychotherapy support, especially at too fast a pace, might indeed lead to a next disaster, a relapse, a crash into the wall of ignorance;

      * to tapper ONCE the family psychotherapy support is started, using love principles as highlighted by efficient results of the OPEN DIALOGUE method of Lapland, then tappering time can be optimised and hence shortened, with the further advantage that the risk of relapse will be down to zero.

      By our much optimized and shortened is what I am working on presently collecting evidences and data from the literature, both psych-peer-reviewed and from successful ex-psychotics. With a sufficient number of data (free of psych-drug industry sponsorships and bribes), then it will be possible to come up with an equation. Once the equation will be robust enough, then each sufferer will be able to enter his own personal parameters and “to predict” how long it will take him/her to come off psych-drugs safely.

      In the pharmaceutical-psychiatric peer-reviewed literature of the last 60 years, i.e. since psych-drugs were introduced onto the markets, I see plenty of data, plenty of clinical and statistical confusion, but no equation, no mathematics.

      As a scientist, the absence of predictive equations and of relevant sound mathematics to explain why there is no predictive equation in the pharmaco-psychiatric literature as yet bothers me. Mathematics is what makes the difference between pseudo-science and science indeed. As we say in scientific research: “when it happens once, it is coincidence; whereas when it happens twice, it is science!” (Anon.)

      Furthermore, this morning, a simple search on PubMed (Publication Medicine), with the keywords “tapering antipsychotics” delivered zero results. With the keywords “tapering antidepressant”, then 105 publications came up, mostly dating back to the 1990s.

      More useful are the thousands of testimonies of sufferers and their own trials and errors to come off psych-drugs and their input on relevant North-American and European fora on the Internet over the last 10 years. There are a few consistent trends, the two major ones being their cry: “I want to come off psych-drugs, I tried but failed, and, I want to try, but I am scared; please help!”

      So, let us imagine them in Apollo XIII. Suddenly, there is that “bang”. They are not in position to make a U-turn and come back to Earth directly. They first have to go around that Moon, i.e. to take the time to come-off psych-drugs safely. Where are the equations to help them to do just that: to come back home safely? In a short time?

      Let us work on that!

      Fom the sunny Lowland Countries, have a fantastic Monday,

      luc

  15. I too, am a parent of an adult son who has been diagnosed psychotic with schizo-affective disorder; caused, ten years ago, by a car accident. I too, have experienced relief when my son returned from the hospital and some sibilance of order returned to our life together. However, I also felt sadness at the diminished quality of his life and the concern for his physical health as time goes on. Thus rejoicing, just a week ago, my new found blog site: beyondmeds.

    My understanding of Mr. Whitaker’s observations, is not to just go off meds; but to enact a healing plan with the patient an active participant in the decisions of what will be done. The self-help remedies are the same for any human dis-ease and for any human to live happy, and healthy: exercise, appropriate nutrition, meditation (or other anxiety reducer),and a loving, supportive environment. A dedication to make positive “way of life” changes.

    After reading some of the “Open Dialog” messages from Finland, I have first-hand experience of how it works. It said that psychosis is caused by a person not being able to express their fears, because no one would listen. I am guilty; when my son begins ranting, foul language, etc it has been my habit to walk away because I find the behavior very disturbing. The other day, I told my son, “it is my understanding that what makes you sick is that you are unable to speak about your fears, please tell me I will listen.” My son began ranting, and cursing and I just sat there enduring his words. Then a miracle happened: he became lucid and told me his (very valid) concerns, and then thanked me for listening.

    I too, have thought, “to move to Finland.” However, I think it much more practical, with many more people and their families benefit, and would be more enduring if we were to do our homework, learn why it works, and bring it here. People banning together with a common cause can achieve important things. My passion, in the past ten years, has become the well-being and quality of life for my son, and now for those others who suffer from the current mental health policies of our country. I am very interested in being involved in such an endeavor.

    • Good morning Charlene,

      You wrote: “I too, have thought, “to move to Finland.” However, I think it much more practical, with many more people and their families benefit, and would be more enduring if we were to do our homework, learn why it works, and bring it here. People banning together with a common cause can achieve important things.”

      Well, I thought so too, and then, with all our family encouragements, living “only” 3.5 flying from Lapland, Finland, last month, I took my son with me to go and see, and learn directly, first hand, from the innovators themselves.

      In addition, we crossed the Polar Circle, visited the village of Santa Claus, shaked hands, caressed his raindeers, and enjoyed temperatures above 25°C and sun 24h/24.

      Upon our return, highly motivated by the perspective of a drug-free and healthy life again, our son cancelled his next appointments with the psychiatrists, got the contribution of a local pharmacist to grind pills of the three meds down to power and weigh to the hundredth of a milligram the capsules that he now takes for coming off drugs surely but safely.

      Last but not least, SIMILES, the Belgian equivalent of NAMI has requested a full report of my involvement as a father and as a scientist, including our discoveries in Lapland and what do I recommend for Belgium to benefit.

      As the Belgian mental health policies are a 85% copy and paste of the US policies (our social security and health care is a bit more advanced), as already promised to Monica of BeyondMeds, I’ll translate it into English too for yours and NAMI’s information.

      From sunny Belgium, have a nice weekend, luc

    • Charlene,

      God bless you for your willingness to change, to try a different way of responding to see what happened.

  16. Hi! My life returned when I stopped psychiatric drugs i talk about it here http://www.youtube.com/watch?v=PnsCyR59Hd8&feature=youtube_gdata_player
    It takes time to process this kind of information as for many years access to the dangers was not available. I know NAMI has traditionally been very pro psychiatry and psychiatric drugs and therefore I think it is very brave of you to welcome what must have been very frightening, the message that not all is as it seems. Many people will continue to dismiss what Whitaker and others are saying and therefore my message will not be for them but there are alternatives.
    The Hearing Voices Network has helped many and has tools to help psychosis working holitistically. Please may I respectfully suggest if anyone is interested in learning more about the hearing voices network and seeking knowledge to contact HVN’s directly as many purport to know about us using that as a cover for personal opinions. A good source is http://www.intervoiceonline.org. Another good source of knowledge is the Critical psychiatry network http://www.criticalpsychiatry.co.uk/ and then there is of course the Mad in America website with blogs from people all over the world http://www.madinamerica.com/
    There is another knowledge out there and it is worth studying. It is only by daring to challenge ones beliefs that one can truly make a choice. Most of us we stick to our guns refusing to address the opposites as this will sometimes threaten to shake the foundation of our very selves.I was no different as a psychiatric nurse i believed in psychiatry and that what I did was right but was forced to challenge my belief in psychiatry and today see psychiatry through the same lens as Whitaker. Seek knowledge not just that which supports ones own beliefs and see where it takes you you may be surprised!

  17. As a post graduate Social Worker with training from Smith College I worked on a well run psychiatric unit but was also aware from the beginning of graduate school in Washington D C. there was a segment of professioanals who questioned the use of anti-psychotics. I was also aware of the the psych survivor movement but thought they were on the radical and fringe side of things though need to be listened to. After running into my own Mental Health issues that now I find were a result of an abusive husband and multiple stressors not a biological disease I have completely changed my perspective. The units I was treated in were purely prisons. There was no therapeutic milieu and it was horrific. I think at times medication is needed for full blown psychosis but long term maintenance is questionable for many but not all. We just don’t know enough. I am all for Soteria type treatment with wise use of medication. Please talk to those in the hospitals. Parents and family members have no idea what is like unless you want to try a couple days on the unit to experience it. I have children who all qualify for ADD/ADHD dx some use drugs some don’t . I let them choose as they are now over 18.The system is broken and needs to be changed in fighting and working at cross purposes only hurts those who are ill. It is not helping that NAMI has been close minded to the psych survivor movement. WE all need to talk together and be open to new and different ideas. You don’t know what seclusion is like until it happens to you!

  18. Kathy,
    Thank you for your post on this, and for allowing a dialogue about the issue on your blog. I happen to be one of those people who does not buy into Robert Whitaker’s claims, as antipsychotics have made me able to function and prevented me from living in full-on psychotic hell like I did for seven years before I was on them. I am afraid that people who buy into the entire “antipsychiatry” side of things are not getting a full glimpse of facts and science. It’s so easy to blame medications for causing the illness to worsen. What we need is more research on the illness itself. We also need more funding for therapeutic care like CBT and respite services.

    • Hi Jen,

      For your information,

      In the OPEN DIALOGUE method developed in Lapland, Finland, today, 70% of the psychotics get no medication at all. Consistently, that is because the intervention team is called very soon when the psychosis starts to express that something is going wrong.

      The 30% who get medication, is most of the time when the intervention team was called very late, and that the psychosis had evolved to an acute level.

      Research in Lapland, that was started some 30 years, has shown that psychosis is not an illness, an illness that could perhaps be cured when the pharmaceutical industry will perhaps come up with new drugs.

      In fact, psychosis is a wound, an injury that can be “healed” with appropriate healing treatment, most notably family psychotherapy.

      In Lapland, 85-90% of the psychosis are now “healed” by the OPEN DIALOGUE Method. People can go back to their studies, jobs, familes, fiends and loves and are all drug-free, enjoying a healthy life.

      For the remaining 10%, i.e. the acute psychosis, they are now working on to improve the results, with the aim of getting them healed, drug-free and healthy again as well.

      In Lapland, the empyting of the pyshiatric hospital freed the funding for research on the “wound”, the “injury”…;-)

      From sunny Belgium, have a nice weekend, Luc

  19. Thank you for your honesty. I cannot imagine the fear and anger you must be feeling. My anger comes from a different place – grief. We lost our 21-year old son to suicide after 7-weeks on Effexor XR, Seroquel and Restoril. His initial diagnosis was MDD but this was quickly changed to BPII when he experienced an immediate deterioration upon beginning to take all 3 medications. After his death, I began to research the medications he was given. I was totally unaware of these drugs before he began to see a psychologist in May 2003 and then a psychiatrist in July 2003. His downward spiral was so severe that we believed his doctor when he said that his condition was out of control and he would likely end up unable to function. We did not know about the data that indicated SSRI/SNRI medications increase the risk of suicide. My son had not been suicidal before he sought treatment. He had a temper problem and was distraught over the loss of a job which forced him to move back home from college. I hope that you take this spark of knowledge and delve into researching the truth about all psychotropic medications. There is a lot of evidence that conflict-of-interest, pay-to-prescribe, and other unethical actions have prevented the industry from focusing on providing real solutions for people with mental health issues. We need family members of consumers of these medications to demand real answers from the pharmaceutical industry. These medications are being prescribed to far too many people who are clearly not psychotic. For pain. As an adjunct to an antidepressant. For too many off-label uses. Perhaps if the pharmaceutical industry focused on their core patients more than expanding their markets, we wouldn’t need to have this conversation. Best wishes to you and your family as you face this issue. I would love to share information with you that I and others have gathered through the years, if you would like to contact me.

    • Terry,

      The story of your 21 year old son’s suicide is heartbreaking. Please accept my deepest sympathy. As a mother I can’t imagine anything worse than the unnecessary death of a child in the hands of trusted professionals. We teach our children to fear snakes, the poison symbol on bottles, crossing the road without looking, and strangers offering candy. Now we have to add psychiatrists and their cookbook diagnoses and prescriptions to the list.

  20. Anyone who wants to read Torrey’s refutation of Whitaker’s work should also read Whitaker’s response, http://www.madinamerica.com/2012/10/dear-dr-torrey-please-stop-the-lies/. It’s worth wondering why Torrey has to distort things in order to attempt to make Whitaker look bad.
    Just a few days ago, a new research article came out showing that a group randomized to get help in reducing or getting off antipsychotics, a group that used quite a bit less antipsychotics on the whole over the 7 year period of the study, had twice the recovery rate of the people who got “treatment as usual. See http://archpsyc.jamanetwork.com/article.aspx?articleid=1707650 It’s time to quit ignoring what the long term studies are telling us and to instead work on finding ways to help people with less use of antipsychotics. I know this is tricky – but many people have found a way to avoid both psychosis and the use of antipsychotics, and if our system had this as a defined goal, we would help people accomplish it much more frequently.

  21. Kathy,

    You’re realization that, if Whitaker’s findings are true and valid, we need to develop a new paradigm of care is right on the mark. And your concerns about how we are going to do that, how much time it will take and how much change in the conventional wisdom are also right on. If Whitaker’s finding are true – and I, a licensed psychologist in Colorado, am convinced that they are – the best way to treat a person who is experiencing the first episode of psychosis is to provide him or her with a safe place, safe both physically and psychologically, in which s/he can be helped to go through the experience and come out the other end more able to deal with in the the real world in a satisfying way. As you know, there were places like that in the San Francis

  22. I’ve read Torrey Fuller’s book and newsletters for years and I’ve read both of Robert Whitakers books about mental health. As a researcher I found that Whitaker painstakingly presented documentation, citing numerous scientifically rigorous studies in a non-accusatory manner. There is no hate mongering or fear mongering rhetoric that I could discern. And while the investigative journalist aspect still comes out I don’t see a twisting the facts with an agenda to fit a preconceived notion as I see in Fullers work.

    I also do not see what Whittaker really has to gain by challenging the sacred cow of medicating people with mental illnesses to death in this country. Whitaker was far more credible to me than Torrey Fuller whose inflammatory fear mongering plays on the fears of those who are either family members or policy makers. He dehumanizes his subjects by saying they are not like us, if they resist treatment they have broken brains. I cannot imagine what it would be like to go to my medical doctor complain the new antibiotic hurts my stomach and have him tell me “you don’t like it because your brain is broken”.

    Every opportunity he gets Fuller plays up an inaccurate connection between violence and mental illness and runs with it making broad generalizations. The sensationalism always seemed like a cheap trick used to support an agenda. When I found out about Fuller’s drug company ties before I ever read Whitakers work I began to suspect a lack of objectivity and a reason to have ulterior motives. It is disturbing that he created a new term and concept that those who resist the standard and non evidence based way of doing things have broken brains. This renders those who might resist for good medical reason voiceless because Fuller would have them forcibly medicated

    I worked in State government mental health management for a time. In that capacity I was appalled at the lack of accountability and transparency in the mental health profession. Every State would tell the story Whitaker presented if we documented the horrible decline in mental patients lives when engaged in our standard system of mental health care. Lastly, this debates reminds me of a story I heard in graduate school regarding the resistance to new thought even when it evidence is presented. Semmelweis, the father of germ theory proposed that doctors wash their hands between delivering babies and doing post mortem exams. He was deeply pained by the death rate of women in maternity hospitals. One hospital in Paris lost every mother that delivered there in a year. Semmelweis had a theory and in his own hospital insisted all wash their hands which dramatically improved the outcome. He presented the documentation to his peers. They refused to believe their practices were deadly. They wanted Semmelweis to recant, he would not and was put in a mental hospital where he died of an infection after being beaten by the guards.

    Fortunately, Whitaker will not be locked away, unless Fuller convinces the world questioning a deadly mental health system makes one insane.

    • Katie,
      You mirror my feelings and thoughts about E. Fuller Torrey. When my son was first hospitalized at the age of 19, my sister bought my Torrey’s book. I got partway though chapter one, and put it down, never to pick it up again. This was the only book on schizophrenia that the hospital recommended. Appalling. I felt that Torrey considered people diagnosed with schizophrenia as sub human. What message does that give to parents, patients and family members? Hope flies out the window. When I found out about his work with the Treatment Advocacy Center, it confirmed my feelings that he considers people with schizophrenia sub human and uses fear mongering to make his point (schizophrenics are dangerous people because their brain chemistry is seriously out of whack and need to be locked up.) New ideas meet stiff resistance from those who have the most to gain under the old system.

  23. I have to say that I am cautiously optimistic regarding Mr. Whitaker’s presentation at the NAMI convention in San Antonio. What is important I think is the fact that treatment or not there must not be a “cookie cutter” approach. Since our mental health system is broken severely, we can’t keep turning out mistakes that lead to tragedy even on the treatment side of things. My 37 year old son and I attended Whitaker’s presentation and in fact we travelled from Chicago expressly to do so. I had been an extremely active NAMI leader in my county and served 6 years on the state board culminating in bringing CIT to my county in 2003. It was the only thing that kept me sane as he ran away repeatedly always tossing his medications and ending up in state mental hospitals in many states severely manic and psychotic… rebound psychosis! For him it was no life at all… medication for life was unacceptable.

    It was always apparent to me and to my son now that he had “anasognosia”for 15 years. Early on he fought treatment so hard that his refusal to take either food, liquid or medication put him into severe mania, psychosis and catatonia such that IV’s were used to keep him alive. He was fortunate to be in the hospital or he would be dead long ago. I understand the fears family members have on medication issues. We had to take him to court strapped to a gurney unable to speak in his catatonic state. The judge ordered forced medication. He did finally improve and go back to college finishing his master’s degree not having to be hospitalized even one time in five years.

    The bottom fell out again as his affect was not good and his appearance was unprofessional with a classic unkept beard, dreadlocks and tunic with sandals. Without a job prospect he lost his way and became hopeless. Finally he hit bottom in an asylum in Chicago and he really got it for the first time. It was my bottom too… there had to be a better way. Again I mention there is no “cookie cutter” that is right for everyone. He choose Orthomoelecular supplements and 15mg of Zyprexa which is the only anti-psychotic that ever worked. In 6 months he showed no sign of the OCD that made all our lives miserable seemingly forever. I believe for him the nourished brain healed to a new normal such that he wanted to see what NAMI had to offer, his clothing choices greatly improved along with a shaved head and trimmed beard (no dreads). He has accepted that he is one of the 20% Whitaker says need some medication and hopefully less in the future. He is looking for a day job as he starts his own web-based business. He carries an extra 60 pounds of weight from the need for anti-psychotics and with it the prospect of a shorter life by 15- 25 years. Really, is that the best we can do?

    Robert Whitaker does sound the alarm for us all to look at our system of care in a different way. I have read two of his books and I personally feel horrible about the history of drug pushing by the pharmaceutical companies. They have deluded us all including doctors many times over. I have a love hate relationship there. I am against just any type of doctor handing out anti-depressants like they were happy pills. What do GP’s really know about these drugs? I see them as doing harm to many who end up bipolar due to improper and over prescribing. Professionals notably, Dr. Frederick Goodwin have admitted and research supports the fact that long-term outcomes are proving some drugs are not better than placebo and shorten lives drastically… profits have often driven their use. Yet I do admit we need newer, more effective drugs and a system of nurturing wellness. I’m not against AOT. What kind of life is homelessness? And, yes parents have been made the scapegoats!

    • Hi Judy,

      You are right:

      * “the pharmaceutical industry has deluded us all including doctors many times over”;
      * “… profits have driven the use of psychaitric drugs”;
      * “And, yes parents have been made the scapegoats!”

      More than scapegoats, ultimately, parents are the bill-payers: they pay the bills of the psychiatrists, they pay the bill of the pharmacists, they pay the bills of the hospitals, they pay the bills of the insurances, they pay all the bills of the “system”…:-(

      Lapland in Finland is not a rich region, and the Region State supporting 100% of the health care could no longer afford the rising costs of the psychiatric system.

      So, they remembered Thomas Edison (1847 – 1931) quote: “There must be a better way to do it. Find it!”

      And they found. As a result, in Lapland, families and their healed psychotics enjoy now a higher life quality at lower costs than in the rest of the Western world.

      Higher Life Quality, at Lower Costs! – Isn’t that nice?

      From sunny Belgium, have a nice weekend, Luc

  24. I have to thank you for writing this (as have many of the others who posted before me). I am a naturopathic doctor whose practice is focused on the safe, effective, natural treatment of serious mental illness, but I am also a patient, a member of NAMI, and soon to be speaker for Ending the Silence with my local chapter here in California. I have experience in every realm – conventional and natural therapies, patient and provider, family member, concerned citizen – you name it. I can say from my personal experience that there are far better ways that lead to a far better life than the strict adherence to anti-psychotics and mood stabilizers. Our current system needs renovating to include less harsh interventions aimed at healing the person as a whole before using suppressive therapies that have terrible side effects (including recurring and worsening psychosis as you mentioned above), and it will take advocacy for ourselves, our loved ones, our patients, and our community in order to make that happen.

    • More precisely, after minute 25.

      On Minute 26, John Nash states: “most of the time, I did not take medicines”.

      We are fortunate to have that testimony from a highly respected man.

  25. Kathy and all,

    I have to say that I am cautiously optimistic regarding Mr. Whitaker’s presentation at the NAMI convention in San Antonio. What is important I think is the fact that treatment or not there must not be a “cookie cutter” approach. Since our mental health system is broken severely, we must find help for those who suffer severely from the effects of these drugs. My son and I attended Whitaker’s presentation and in fact we traveled from Chicago expressly to do so. I had been an extremely active NAMI leader in my county and served 6 years on the state board culminating in bringing CIT to my county in 2003. It was the only thing that kept me sane as my son ran away repeatedly always tossing his medications and ending up in state mental hospitals in many states severely manic and psychotic… rebound psychosis! Why was he/me not told that would happen? For him it was no life at all… medication for life was unacceptable.

    It was always apparent to me and to my son now that he had “anasognosia”for 15 years. Early on he fought treatment so hard that his refusal to take either food, liquid or medication put him into severe mania, psychosis and catatonia such that IV’s were used to keep him alive. He was fortunate to be in the hospital or he would be dead long ago. I understand the fears family members have on medication issues. We had to take him to court strapped to a gurney unable to speak in his catatonic state. The judge ordered forced medication. He did finally improve and go back to college finishing his master’s degree not having to be hospitalized even one time in five years.

    The bottom fell out again as his affect was not good and his appearance was unprofessional with a classic unkept beard, dreadlocks and tunic with sandals. Without a job prospect he lost his way and became hopeless. Finally he hit bottom in an “asylum” in Chicago and he really got it for the first time. It was my bottom too… there had to be a better way. Again, I mention there is no “cookie cutter” that is right for everyone. He choose Orthomoelecular supplements (they do blood tests for that) along with Zyprexa which is the only anti-psychotic that ever worked for him. In 6 months he showed no sign of the OCD that made all our lives miserable seemingly forever. He manages far better without Depakote ever vigilant to keep his sleep patterns regulated. When he gets low he recognizes the problem and recently saw an herb specialist originally from China. I believe for him the nourished brain healed to a new normal such that he wanted to see what NAMI had to offer (blew me away). He has accepted that he is one of the 20% Whitaker says need some medication and hopefully less in the future. He is looking for a day job as he starts his own web-based business. He carries an extra 60 pounds of weight from the need for anti-psychotics and with it the prospect of a shorter life by 15- 25 years. Really, is that the best we can do?

    Robert Whitaker does sound the alarm for us all to look at our system of care in a different way. I have read two of his books and I personally feel horrible about the history of drug pushing by the pharmaceutical companies. They have deluded us all including doctors many times over. I have a love hate relationship there. I am against just any type of doctor handing out anti-depressants/anti-psychotics/benzos like they were really fixing a chemical imbalance. Our brains are smarter than that! What do GP’s really know about these drugs? I see them as doing harm to many who end up bipolar or worse due to improper and over prescribing. Professionals notably, Dr. Frederick Goodwin have admitted and research supports the fact that long-term outcomes are proving some drugs are not better than placebo and shorten lives drastically… profits have often driven their use. Yet I do admit we need newer effective drugs, along with control for weight gain and a system for nurturing wellness. I’m not against medications, but could we treat these folks with kindness like every other illness is treated? I believe parents have been made the scapegoats and it’s time to get real and start the open dialogue we so desperately need.

  26. Hi All,

    Kathy Brandt here, blog author and administrator. I’m simply amazed and overwhelmed by all the comments and good discussion about the use of antipsychotics. I’m learning more each day as I read your posts and check out the links you’ve recommended. Thanks to everyone of you and I hope the conversation continues.

    You may be interested to know that a study just published (July 3, 2013) in the Journal of the American Medical Association (JAMA) indicate that patients whose antipsychotic treatment was reduced or discontinued experienced a recovery rate twice that of patients maintained on antipsychotics. Here’s the link to the abstract: http://archpsyc.jamanetwork.com/article.aspx?articleid=1707650

    Best wishes,

    Kathy

    • Hi Sandy,

      Many thanks for your input that made me sit and think.

      In your blog, you wrote: ““Relapse” is a construct that varies from individual to individual. The risk, therefore, needs to be considered on an individual basis.”

      As a scientist, allow me to bring a nuance to that statement: Out there, on various fora and in many countries and languages, many individuals looking for solution have made plenty of data available.

      One of the thousands data that I recently screened moved me more than all the others. It is a a real-world “outlier”. On a Dutch-speaking forum, a young man, ± 35 years old wrote: “I want to come off Leponex, i.e. the Novartis trade mark for Clozapine. I tried, but failed. Anybody with experience out there? Please help!”

      One mother answered: “Yes, I do have experience: I lost my 17 years old son due to Leponex, 400mg a day, heart-attack.”

      As my own just 21 years old son, not feeling well was on 400 mg Leponex, I got scared. So, upon his next bi-monthly visit to the psychiatrist, my son asked me to accompany him, to help him to push the issue towards a dose reduction. The psychiatrist reaction was: “(1) I do not want you my patient, and your son, to resume suicidal thoughts and sensory hallucinations; (2) I have no reason to modify the treatment that my boss recommended you before your file and you were transferred to me; and (3) I am off on holidays to Portugal. Here is your new prescription. See you next month.”

      Since then, while he was in Portugal, we were in Finland. Why in Finland? – See above interactions with Kathy and others for more information.

      Back to Science. – At first compilation of all these data out there, as a scientist with some expertise and connections in consumer research and market research, it is possible to distinguish trends. Imagine a 3-D graph: Put an the Y axis “dose”, on the X axis “individual response and on the Z axis “recovery”, and you will get a bell-shape 3D-graph, i.e. a MAP.

      Knowing the position of each individual on such a MAP, then you will be able to optimize and to target the best possible treatment for each individual.

      So is science: once you manage to compile data properly, and that you identify primary parameters (secondary parameters are just confusing the issue), then you get the right equation and you can solve the problem, the psychosis problem in this case.

      Simple, isn’t it? (smile)

      The good news: In Finland, at the DIALOGIC conference, we met good psychiatrists, aware of dose effect. Since then, using an hopefully “safe” dose-decrease-plan, my sons’s Leponex dose is now down from 400mg/Day to 200mg/day, which looks to be just under the heart-attack dose. For the other two psych-drugs, he is also down by 50%. And instead of living through sleepless nights, my wife and me, we sleep again…

      What about the next 50% in dose reduction? Good question!

      While in Lapland, Northern Finland, we also visited the Santa Claus village and we shook hands. He asked, “what would you like as Christmas gift?”

      My answer destabilized him: “a psych-drug-free life for my son”…

      (smile)

      So, just a “cryptic” Question to you Sandy: “what can/will you do to help Santa Claus?”

      You now have just under six months to answer.

      Please, feel free to call if you want hints, especially towards preventing both withdrawal syndromes as well as the onset of so-called iatrogenic diseases. (wink)

      From the little Kingdom of Belgium, I wish you to be able “to heal” many patients around you,

      Many thanks again for your input that made me sit and think.

      Do not take care,
      Take love!

      Luc

      🙂

      • Hi Luc-
        I am just seeing these comments now. thank you for your reply. I have seen your posts on Open Dialogue and will just share that I am also familiar and interested in this paradigm of care.
        Sandy

  27. Hi Kathy,

    Answering your second question: “Does it apply to illnesses other than schizophrenia?”

    I believe that application can stretch from “autism” of young infants and all the way through each age that can experience traumas and depression of one form or another, up to “dementia” when ageing. For instance, I just read data from Denmark: with their combined social and health care, although people age keep increasing, dementia cases among them are decreasing.

    And answering your last question: “Can he find better ways to stay healthy and continue his journey to fuller recovery?”

    I believe that your son too can find better ways to live. Since the trauma that caused his depression, things have changed. One of the change is improvement in family psychotherapy to heal traumas.

    For instance, to get information and to open his and your choice, have a look at this useful webpage:

    http://www.helpguide.org/mental/emotional_psychological_trauma.htm

    And when you wrote, “I’ve realized I’d been lazy, taking the word of doctors and other professionals”, well, I do not think that you have been lazy. You have been through a world where doctors and other professionals are “pavlovly-conditioned” (from the psychologist Pavlov) to say the words they keep saying. They learn these words as students at University Hospitals and when they say these words to their professors, then they succeed at their exams.

    Had you been lazy, had you given up as many others did, then you and your son would not have attended that lecture, would you?

    So, from a father in the Lowland Countries to a mother in the Colorado Mountains,

    Keep up the good love!

    Luc

    🙂

  28. I can appreciate your fears about discontinuing long-term treatment with anti-psychotics. I shared them. I received a bipolar diagnosis in 1982 and was treated with anti-psychotics until 2007. At that time, I was worried about the continued cost of the drug and instability at my place of employment. I discontinued the drug (Abilify) on my own by tapering it off gradually. Nothing bad happened, but good things did. Both of my parents died in 2005. I was not able to cry until the Abilify was out of my system. You can’t imagine what a relief that was. It was surprising and a blessing to experience my emotions again in an unfiltered state. I started sleeping longer and having dreams. I could not remember having any dreams while taking Abilify. I lost weight. I began to trust my own mind. My self-confidence increased. I am still doing fine. Life is bumpy and I have my ups and downs, but overall, I feel better about myself and my life.

  29. Hi Kristen and Hi Kathy,

    We are now some three months later, and just a good news to share with you and your readers: throughout the summer, we helped our son both to heal and to taper from the 3 high dose of psych-drugs prescribed to him by a series of 9 irresponsible psychiatrists trained to poison teens and young people.

    Just as you described, Kristen, “Nothing bad happened, but good things did.”

    Down at minus 70% of the high dosage, he started to enjoy again a life rich of emotions and with the stopping of his hands shaking because of over-medications, he started to play piano and guitar again, with lots of musicality.

    For almost two months now, he is free of these poisons and he is now back to College, enjoying student life and the company of boys and girls of his age. He also lost weight and is bicycle-riding, jogging and doing fitness again everyday.

    Now, I understand why the Keropudas Hospital of Lapland in North Finland has become the first psychiatric hospital of the world to become empty: over here, in our hospitals, we have plenty of psych-doctors who graduated to apply the Law of “Murphy”, whereas over there, in Lapland, they have “Santa Claus”.

    (smile)

    Our family is very, very grateful to the team of Lapland who developed the OPEN DIALOGUE Method: they are Santa Claus!

    FSo, keep up the hope, and from the presently sunny Kingdom of Belgium, best wishes to Colorado for the same happiness,

    Luc

    P.S.:

    1) the law of Murphy says: “if something can go wrong, it will, and preferably at the worst moment!”

    2) Santa Claus is about love, i.e. the best medicine!

    …:-)

    • Hi Luc,

      It’s so good to hear from you again and wonderful to hear that your son is doing so well. It gives us all hope.

      All the best to you and your family,

      Kathy

  30. I live in Gainesville Florida and need someone here who could help with son (28) currently on too much antipsychotic. It has been necessary, so I have believed, to bring him out of psychotic state but then depression sets in. When antipsychotic is reduced he functions well. He has been diagnosed bipolar for 5 years starting last semester of senior year in college. Has been incredible journey with numerous hospitalizations (12). He resisted taking medicine but has been on antipsychotic and lithium full time since last year. He was doing well on very low amount of antipsychotic until several months ago when psychosis occurred even on low levels of meds. Now doctor has on lots of antipsychotic and reluctant to reduce.

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