Optimal Use of Neuroleptics, Part 3: Duration of Untreated Psychosis


For the past 20 years, there has been a prevailing concern in psychiatry that psychosis is bad for the brain. The notion is that the psychotic process is in and of itself damaging and therefore every effort should be made to curtail this process in order to forestall further damage.  This idea heightened the urgency to initiate drug treatment.  When I read Anatomy of an Epidemic, this was one of my most pressing concerns; If I suggested to my patients that they pursue other treatments before starting drug treatment, was I helping or harming them?

I wondered how this concept could be reconciled with Whitaker’s suggestion that long term exposure to neuroleptics was associated with a worse outcome.  This seemed like an urgent question and it led me to review the literature on this topic. The research into what has been called “duration of untreated psychosis” (DUP) is extensive.  I have tried here to present a fair presentation of the data although I will admit that a full review is beyond the scope of this blog.

In 1991, Richard Jed Wyatt wrote a highly influential paper entitled, “Neuroleptics and the Natural Course of Schizophrenia” (Schizophrenia bulletin 1991, 17 (2): 325 – 351).  Wyatt was the Chief of the Neuropsychiatry Branch of the National Institutes of  Mental Health. In this paper, Wyatt reviewed papers in which patients diagnosed with schizophrenia were treated with and without neuroleptics and then followed for a period of time often after the initial treatment phase ended. In his conclusion, he asks, “Is there something that is toxic to the individual beyond the immediate psychotic episode?”  Although he may not have been the first person to ask this question, his opinion carried much weight in the field.  He answers this question as follows, “The thrust of this article is that some patients are left with a damaging residual if a psychosis is allowed to proceed unmitigated.  While psychosis is undoubtedly demoralizing and stigmatizing, it may also be biologically toxic.”

The paper, however, does not prove this.  In fact there are articles cited that contradict this conclusion (see Schooler, 1967, Carpenter , 1977, Rappaport, 1978).  Wyatt finds flaws in the methodology of those studies that lead him to question their outcomes more than he does those of the studies whose conclusions concur with his hypothesis.   Although Wyatt also reports on at least one study (Falloon,1989) which reports on very good outcomes using low dose short-term neuroleptics in combination with family support, this message – that low dose neuroleptic was as or may be even more effective than higher doses – was quickly lost in the era promoting the safety of the newer neuroleptics.

This paper led to further research on the topic.  It led to the development of early intervention programs.  It also led to studies whose aim was to evaluate whether the outcome is improved if people get into treatment sooner.  In most but not all of these studies, treatment is synonymous with drug treatment.

A Finnish study by Pentilla et al (Schiz Res 143 (1); 3-10,2013) tracked 89 individuals for 20 years after they were given a diagnosis of schizophrenia.  Initially, they found that in the first two years those who had a longer DUP spent more time in the hospital and had a higher re-hospitalization rate.  However, by 10 years, longer DUP associated with decreased risk of disability pension, less time in hospital, more time at work in the long-term outcome.

In another long term study by Hill et al (Schiz Research 141; 215-221, 2012), which followed 170 people for 12 years, longer DUP was associated with greater positive and negative symptoms, lower GAF, lower QLS.  However, longer DUP was not associated with functional impairment (working, living independently).

It appears that fewer studies have examined DUP in a broader sense, i.e., defining treatment as more than neuroleptic treatment. Haan et al (Schizophrenia Bulletin, 29(2):341-348, 2003) did examine this question. A distinction was made between DUP, defined as time between onset of psychotic symptoms and initiation of drug treatment, and delay of intensive psychosocial treatment (DIPT). They did not find that DUP explained poor outcome but they did find that DIPT had a higher probability of negative symptoms at 6 years independent of the influence of DUP, duration of treated psychosis, age at onset, and gender.

In the Open Dialogue system of care, time between developing psychosis and entering treatment is not ignored.  However, although they do not use these terms, they do pay attention to DIPT and they find it to have an negative impact on outcome (Seikkula, J et al Journal of Constructivist Psychology, 14: 4, 267 — 284, 2009). When they examined their outcomes, they found that those who had a longer period of time before entering treatment had worse outcomes  in a paradigm of care in which neuroleptics are not considered first line treatment.  Those with a worse prognosis had significantly greater exposure to drug treatment.

Poor Prognosis Good Prognosis
Hospital days ** 47.5 (56) 9 (19.2)
Ongoing medications (%)** 52.9 19.7
No medicationsUsed (%) 47.1 80.3


Patrick McGorry is probably the psychiatrist who has the most experience with early intervention including early use of neuroleptics.  In his current study (J Clin Psych Nover 27, 2012), however, he has chosen to compare the use of risperidone to cognitive therapy to supportive psychotherapy in individuals considered at ultra high risk of developing psychosis.  At 12 months, he found that there was no advantage to the use of risperidone.

So there is consensus that early intervention is a good thing. However,  treatment does not need to be synonymous with neuroleptics.

In my final blog in this series, I will talk about the challenges of so-called “compliance” and I will discuss my conclusions.


Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.


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  1. Dear Sandra,

    Thank you for this discussion.

    I believe that the current psychology paradigm harms mental health by erroneously convincing the community that natural emotional distress is a biological dysfunction. My biggest criticism of most discussions about drug therapies is that they implicitly support this erroneous foundation to popular theories about mental distress. Open Dialogue treatment is the exception; it seems to rightly imply that mental distress is a natural reaction to distressful experiences.

    Best wishes, Steve

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  2. (Australia’s most famous psychiatrist) “Patrick McGorry is probably the psychiatrist who has the most experience with early intervention including early use of neuroleptics.”

    Well of course he is the psychiatrist with the most experience with intervention in young people. He operates in the jurisdiction with the highest use of forced drugging per capita in the world. He has the power, and uses it, to forcibly drug young people in crisis, putting them on home-based forced drugging community commitment, something that is done in Australia without even a court hearing. It must be remembered that McGorry’s insights, if any, came at a cost of enormous human misery inflicted by the most coercive mental health system in the Western world. I liken this to the “research insights” gained by Dr. Mengele in Auschwitz, which provided medical data that is still in use today, for instance data on how long the human body can last before it freezes to death. Any nod to McGorry’s oeuvre should come with an acknowledgment of the massive world record setting coercion that the system he works in carries out, and the massive amount of ethically questionable research consent that colors his research given young people in McGorry’s system know their human rights can stripped from them with the stroke of a pen should they do anything to displease their psychiatric masters.

    Below, mainstream media acknowledges the jurisdiction in which McGorry’s research is conducted is the most coercive environment in the entire world.


    So I think any mention of McGorry, especially on MIA, should be sensitive to this fact that psychiatrists carrying out research in this Australian jurisdiction, hold within their hands the power to do research on people in the most coercive system in the Western world. You’ve heard of blood money, I consider these blood data. Any data coming out of Victoria Australia should be seen as data that piggybacks on world record setting force, compulsion, misery and coercion. McGorry is the Australian version of Torrey.

    It’s also disappointing to hear anybody lend credence to this notion that McGorry can predict who is “at risk” of having a crisis that will be labeled “psychosis”. Even DSM4 kingpin Allen Frances, finds McGorry to be a pusher of indefensible junk prediction.


    You’ve gotta love the quote from the 1991 study…

    “While psychosis is undoubtedly demoralizing and stigmatizing, it may also be biologically toxic.”

    Replace the fraudulent, reifying, pseudomedical, pseudobiological, label “psychosis”, with the word “psychiatry” and the quote would work just as well.

    I applaud any attempt to re-imagine the use of major tranquilizer drugging as a “tonic” and to end the diseasing of people’s experiences, but forced drugging in any form, low-dose, whatever, will always be opposed.

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      • McGorry does not believe one should wait if the person is psychotic. In fact in those cases, one should be forced onto neurolptics the second they show a real sign of psychosis.

        I think you need to look at what McGorry actaully means by Ultra High Risk. The definition is beyond me and any sane person.

        If one has ever been having a conversation with someone and wanted to say something, but could not find the exact word they wanted to say, they do instead come up with another word, so the other person can fully understand what they wanted to say, and the message was very clear, but that not knowing the exact word at the exact time – which EVERYONE has experienced, is seen as a person being at Ultra High Risk of Psychosis. Young people who experience depression, and that is everyone who sits formal final year of high school exams that are the sole determing factor of entering furhter education, are also at Ultra High Risk. Put simply being human is being at Ultra High Risk. The fact that anyone could even consider placing such people on antipsychotics is beyond me.

        McGorry has publically expressed his disgust at the APA refusing to accept Psychosis Risk Syndrome in the DSM 5 and has stated that Australia will not be held back in treating these people who are in urgent need of treatment, just because the rest of the world is willing to allow them to become chronically unwell.

        The sad part is the Australian government has now embarked on compulsory mental health screening of 3 year old children and are publically funding massive psychosis risk treatment programs throughout the country. And yes, the PRIMARY treatment being offered in these centres is drugs, drugs and more drugs. Children as young as 12 are being put on them, while still living at home with parents and the parents are not even being told. The kids are discouraged from telling the parents, saying they are not likely to understand about the brain disease that you are experiencing!!

        McGorry has been critised in the media for wanting to drug up kids who show no signs of psychosis, ie those that HE classifies as Ultra High Risk. He has now reluctantly agreed that drugging them does not reduce the risk!!

        PLEASE understand that Ultra High Risk is not someone who is displaying ANY symptoms of psychosis. It is simply a young person, who according to McGorry MIGHT in the future, and the fact is anyone might in the future.

        McGorry does not and never will suggust waiting before iniating Neuroleptic treatment in those who have actually EVER shown any real symptoms of psychosis. Those people need to be drugged up for LIFE, no questions asked. He truly believes that these drugs have antipsychotic properties in them. But then again when you are paid a couple of million a year in drug company money personally and more for your research efforts, is it any wonder that you say such things. And one cannot forget that they must be the lastest edition to the drugs on the market, as the newer ones apparently have significantly less side effects, are tolerted at very high levels, even in very high doses, and are also more effective overall!!!

        McGorry is Australia’s Torrey and it so nice to see that someone else can see him for that!!! Most of the population here worships the ground he walks on, and politicans and media are the worst examples of it.

        Ultra High Risk is not psychotic, and NEVER will be.

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    • For the recond McGorry does not actaully recommend low dose, but one would not know that by how he talks. What he recommends is the MAXIMUM recommended dose of the TGA/FDA. Which in Victoria’s system of forced drugging is low in comparison to the average doses that people are put on. But they are not low dose in comparison to what is used in other countries, or the general understanding of it, around the world. It is Victoria’s defintion of low dose, which is maximum recommended dose. And when that does not work, one just add’s another medication to the mix, the more the merrier!!!

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  3. Sandra,

    Thank you so much for your honest, thoughtful discussion of this issue. I am appalled at the lack of awareness in mainstream psychiatry about the studies you mention suggesting that “less or not at all may be better” when it comes to using neuroleptic meds for first-time psychosis. I’m glad you mention the studies cited in support of early and aggressive use of neuroleptics in treating initial episode psychosis. Unfortunately, these studies seem to have had an undue influence on standard practice–particularly in acute psychiatric units in the U.S. Why is it that mainstream psychiatry has not kept pace with more recent research and modified it’s standard practices accordingly? I find it maddening that despite all the talk of multimodal approaches, when mainstream psychiatry speaks of “treatment” they almost always mean medication. Kudos to the folks in Finland and elsewhere who are placing emphasis on the value of intensive human support in dealing with emotional crises and extreme mental/emotional states.

    This is a very real issue and dilemma to my family, as we have been navigating the ongoing saga of a member diagnosed with severe mental illness involving multiple lengthy, traumatic hospitalizations and various medications (including several nueroleptics). Her most serious difficulties did not begin until after psych meds were introduced. Although her initial response to a neuroleptic (Seroquel) prescribed by her outpatient psychiatrist appeared positive, based on what has transpired since i believe she would have been much better off to have “weathered” the difficulty with intensive but non-medication alternatives. When speaking with one of her in-hospital psychiatrists about my concerns about the terrible side effects she’s suffered from various psych meds and my concerns about further damage, he mentioned there were studies suggesting that untreated mania results in brain damage.

    I remain very concerned about the issue of brain damage and the possibility of deleterious brain chemistry changes possibly caused by the neuroleptics she’s taking (i.e., “supersensitivity psychosis”), which i suspect may have been behind her last hospitalization (since she relapsed into a manic/psychotic state even though regularly taking prescribed meds). On the other hand, she experienced a prior relapse while in the process of tapering her neuroleptic (and maintaining mood stabilizer, lithium). So either way she goes, there is danger of relapse and re-hospitalization. I am more and more strongly seeing the need for carefully crafted and implemented detox programs for people like my loved one who have suffered terribly from these drugs and would like the chance of at least trying to get safely off!

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    • “he mentioned there were studies suggesting that untreated mania results in brain damage.”

      Could it be that most psychiatrists are nothing but regurgitators of psychiatry’s endless array of invalid research? That there is a difference between people who think for themselves and people who just line up, rote memorize textbooks and pass exams? That the social status afforded psychiatrists for simply jumping through a series of hoops and possessing “training” is dying on the vine now that every single thing a doctor knows can be found with a 3 second Google search?

      And when coupled with the legal power to forcibly enter the bodies of citizens against their will, could it be that such “trained” labelers and druggers represent a clear and present danger to the public?

      On the topic of so called supersensitivity psychosis, as the former head of the NIMH has recently stated… “Another important lesson is that even effective drugs may not prove to be useful keys to understanding disease mechanisms. Even if drugs that block dopamine receptors treat psychotic symptoms, it does not follow that the fundamental problem is excess dopamine any more than pain relief in response to morphine suggests that the original problem is a deficiency of endogenous opiates. ”


      I don’t buy the claims that the molecules in drugs “cause” people to have a particular series of problematic thoughts that get labeled “psychosis”. I buy that mood can be altered, sure, but directly blaming drugs for someone believing they are Jesus, for instance, just isn’t something I buy. Anymore than I would buy someone claiming that painkillers cause pain, to extend the former NIMH guy’s quote.

      Blaming major tranquilizer drugs, the pulling, adding, stacking, initiating, ending of tranquilizer drugging for the totality of the extreme states of mind that get labeled “psychosis”, is like ascribing 100% of the credit for the Beatles album Sgt. Pepper’s Lonely Hearts Club Band to Lysergic acid diethylamide (LSD).

      Nowhere to be found in a drug based explanation for that Beatles album is the billions of decisions that the Fab Four made in their lives up to that point, their choice to master their musical instruments, nurture their talent, the myriad factors around the financial freedom millionaire artists have to focus their creative energies and produce great art…etc.

      Speaking only for myself, as one only can, I’d never reduce any of the complexity of my extreme states of mind to whether I was drugged one day, a little less drugged another month, not drugged at all at some other point, sure, meddling with my thinking organ was a factor in how I experienced the world, but I was always still a infinitely complex human being, as we all are. Whatever trains of thought and narratives I wound up in, are not just some chemical soup, they were part of my life, labeled a “pathological” part of life by psychiatric quacks, sure, but all of our lives are emergent interactions with the human world, and contain everything we’ve ever learned, pondered or felt about anything humankind has ever been, known or believed. The “storm” of racing assocations and the unique to each person content of people’s thoughts when they are mentally overwhelmed with life, attest to this complexity.

      The process of achieving a solid state of mind that is acceptable to society with a minimum of unusual thoughts, feelings and behaviors, is something the individual must be ready to achieve. If a person’s original stressors and life situation and worldview have not evolved to a more bearable situation, it should not surprise that tinkering with their brain, by pushing or pulling various levers, has mixed results. It shouldn’t surprise that fluctuations in the level of tranquilization drugging allow people more or less scope to *THINK*, depending on more or less tranquilization impairing their brain.

      If someone has been busy working all their lives and after retirement finds that having the time to read and expand their mind enables them to form thought on various things they’d never considered, to have new experiences that they didn’t have while they were in the rat race, then a young person who had a mental crisis and had a tranquilizing “cork” of drugs stuck in their thinking organ by psychiatry, is sometimes gonna return to the type of thinking that got the cork jammed in them in the first place. If the cork is pulled, out of nowhere, with no preparation and readiness, maturity, insight into their previous experiences etc, expect the revolving door.

      What thoughts a person labeled mentally ill has, at various times in their life, are colored by much more than what’s going on with that day’s dose of brain disabling psych drugs. I’m sure part of what allows the Rolling Stones in their 70s to go out on stage with complete ease and comfort and no stage fright is the fact they’ve performed live thousands of times, before millions of people, and know they are acknowledged and loved worldwide for their artistry and talent. They have no reason to doubt themselves.

      When a person with a psychiatric label, destroyed social identity from psychiatry imposed stigma, a person with a tranquilized, drugged brain, indoctrinated into fear and learned helplessness, a person led to believe their future is one of hopelessness, can’t even look someone in the eyes, doesn’t want to leave their apartment, psychiatrists as we see above, label such things “negative symptoms”. As though a “disease” caused them.

      The medicalization is relentless, and the reason is, society has completely misplaced where the expertise in these matters is. Society believes there is more insight to be found on the topic of extreme mental states in “trained professionals” than in the very people who have first hand experience of such states. Society literally believes the rote memorization of textbooks, the passing of medical exams, the slicing up of cadavers, the sorts of things that med school training provides, is the key to producing professionals who understand the extremes of life. I don’t know what happens on day one of a psychiatrist’s education, but they seem to get told certain thoughts are a brain disease, and then they proceed to base their entire careers on that false foundation.

      The fact that psychiatrists say things like “there were studies suggesting that untreated mania results in brain damage.” tells you psychiatry as a whole stopped listening to human beings long ago, and a piece of paper called a “study” has much more success in getting a psychiatrist’s attention and listening ear than the human beings they claim to “treat”. If only we were all pieces of paper, maybe we’d get listened to.

      The internet is not even two decades old. For over 90% of psychiatry’s history, when the false “knowledge” contained in psychiatry’s papers and texts was only available to the rarefied strata of society with a medical education, those labeled as “patients”, and parents, government officials, investors, concerned citizens of all stripes, could only blindly trust the holders of the “knowledge”.

      In just 17 short years of the internet breaking this monopoly stranglehold on information, we’ve seen psychiatry’s credibility take a nosedive. With the internet, anyone can peek behind the curtain and see psychiatrists are not the wizards of science they’ve been made out to be. Hopefully psychiatry’s edifice continues to crumble at a precipitous rate, and without a doubt, information exchanges such as websites like this one, and many more, will continue to shovel soil onto its zyprexa logo covered casket.

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      • Anonymous

        I hope I speak for many people here at MIA that are thrilled that you have come out of retirement. Your voice and critical analysis of Biological Psychiatry is so vital to our movement.

        I never skim your postings and find your overall critiques very compelling and educational.

        During one of your retirement periods last year I posted my first blog entry titled “Addiction, Biological Psychiatry, and the Disease Model” Part 1 (this can be accessed by going to the writers section at the top of the blog heading). At the time I felt deprived that you were not participating and did not (or could not) respond with a critique or any particular feedback.

        If you have the time to review especially Part 1, I would very much appreciate your feedback on the analysis presented.


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      • Thank you for your very articulate, passionate and insightful reply. I admit that some of what you wrote stung a bit, even if that wasn’t the intent. I realize that those of us struggling with the observed terrible effects of psych meds on ourselves or a loved one may fall into an error that is almost as bad as the myth that an ingested chemical can “correct” a distressing altered state of mind; which is that getting rid of the offending chemical(s) will “correct” the distressing altered state that originally prompted taking the drug in the first place! I agree that such thinking is far too simplistic–it is, in fact, a very pernicious form of reductionism that basically denies the wonder, uniqueness and complexity of the human experience.

        Having said this, however, it seems to me you are in some denial about what seems like obvious effects of drugs (whether they are street or prescription drugs) on the behavior and thinking of human beings. When someone takes a hallucinogenic drug like LSD, for instance, of course the particular content of their hallucinations or delusions will be unique to their personality, experiences, cognitive and creative abilities, spiritual status, etc. But to think the LSD was not the major precipitant to these altered states of mind/emotion seems naive to me. If such altered states of mind were problematic, hopefully this could be “corrected” by stopping the LSD (although it may not be so simple, since the LSD may have permanently altered the person’s brain chemistry or structure). By the same token, i think you would agree that a person living within the “cloud” of a prescribed psychotropic drug (or, more commonly, a cocktail of such drugs)would be better off dealing with whatever problems and issues they had if this “cloud” could be removed. Don’t you think it’s possible that the prescription drug could also be a precipitant to extreme states of mind/emotion? It seems very clear to me that this is so in some cases.

        Some of what you wrote makes me wonder if you have some specific knowledge of my personal situation. I’ve been fairly open in various blogs and usually use the same user name. I’ve also had contact and conversations about this with a number of people in the “psychiatric alternatives movement” (is that the correct term?)–and i’ve greatly appreciated the accessibility and support of these people. My loved one is fairly transparent and has always given me permission to share things about her experience. However, i realize such openness can have a “down side” and perhaps i should re-evaluate this. At any rate,if you do have such knowledge, please be aware that there is a great deal you don’t know about her/our situation. Of course, there’s a good chance i’ve just revealed my own paranoid tendency!

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      • Anonymous, you offer an eloquent and measured argument here for the avoidance of biological reductionism. You and I have gone back and forth about this a little in the past, and I want to warmly offer one small critique of your thesis for review and reflection.

        “Anymore than I would buy someone claiming that painkillers cause pain, to extend the former NIMH guy’s quote.”

        I want to ask you to buy it! Opiate use is well documented in humans and animals to correlate with increased sensitivity to pain and new experiences of pain in response to previously unpainful stimuli. We might also consider the intense experiences of flu-like pain commonly associated with opiate withdrawal.

        I am in agreement that these phenomena, too, are uniquely determined by the fullness of a person’s life. How much drugs it takes for this to happen to me, how much pain changes for me, what kind of pain, and how I respond to the pain have to do with factors completely unrelated to taking opiates – but the existence of a mechanism there does seem well evidenced.

        The reason I bring this up, is simply to suggest a refinement to your argument — that drug-altered mental processes are more than just “moods.” Like Rutherford, above, I submit that changes to the homeostasis of chemicals in the body may have certain common qualities based on what drug is being taken and whether the use is an isolated ingestion, maintaining a tolerance, or withdrawing. From my exchanges with you I do not think you fundamentally disagree with this. Perhaps you would agree that LSD had a particular effect on the Beatles that contributed to a very different album than, say, if their LSD had been swapped out with methamphetamine or neuroleptics – or sand.

        I personally believe that labeling people “mentally ill” or “manic” or “psychotic” is demeaning and destructive, regardless of the cause of their presentation. I mean only to suggest a minor tempering of you anti-reductionist viewpoint to include, without compromising the integrity of the very good points you make, acknowledgement of the significant, and in some broad ways predictable, impact that drug-use has on peoples behavior and reported experiences.

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        • “Perhaps you would agree that LSD had a particular effect on the Beatles that contributed to a very different album than, say, if their LSD had been swapped out with methamphetamine or neuroleptics – or sand.”

          Of course, that’s why I used words like “totality” and “100%”. Drugs are a factor. A factor.

          It’s also why I don’t like to see juries led to believe a drug caused 100% of a suicide or a crime.

          Hi Rutherford, I’ve never seen anything from you before. I wish you the best with helping your family member.

          “The precise mechanisms underlying opioid-induced hyperalgesia are poorly understood.” From that wiki page. There are all sorts of confounds. When access to a drug is behind a government licensed gatekeeper and the only way to get more of a drug is to verbally report more pain, there are confounds. I am sure messing around with opioid receptors can mess things up for a while in the long run. Pain or not painful is a world away from make thousands of decisions and plan a shooting spree.

          Pain is a hornet’s nest of hard to study stuff, and I probably shouldn’t have extended the NIMH guy’s quote using pain, but the mechanisms not being well understood still applies to any of the paradoxical effects floated across the board.

          Say no to drugs kids.

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    • Russerford,
      Thanks for your comments. There are now at least two studies of which I am aware that point to particular risks associated with quetiapine. One of them was mentioned in my last blog which looked at 4 neuroleptics in people over 40. the quetiapine arm had to be stopped early due to high levels of side effects with this drug.
      I do not have an answer for your relative. I struggle with this in my own practice. All I can say is that there are many people who eventually find ways to reduce or minimize the dose. I would look at Will Hall’s Harm Reduction Guide to Reducing Psychiatric Medications (free online). Daniel Mackler just put out a new documentary on this topic which I would recommend.
      I wish you all the best.

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  4. I appreciate the homework you’ve been doing, Sandra. The issue is serious and complex, because in the absence of Open Dialogue, most of us have fallen into a medication trap that we can’t seem to get out of. I feel quite sick about this if I allow myself to dwell on it. However, burnout on the part of family members is a real problem when the task of caring for a person sliding into psychosis is too big. I tried to tough it out with my son for a period of six months after he got off his meds and started sliding again. He upped his visits with his psychiatrist, he got lots of TLC on the part of the family, etc. but without a place to put him to give us a break, it was almost inevitable that he went back to the hospital, and therefore back on drugs. The early psychosis program that he attended for two years was a problem, putting aside the issue of the medication, because the staff had a negative, fatalistic view of psychosis, which of course, spread to patients and family alike. This is my long winded way of saying that yes, you can have additional support in terms of therapy, but the challenge is HUGE when the person begins to destabilize. Had the problem been approached early a la Open Dialogue, things probably would have been different. The damage inflicted by the disease model goes well beyond just the drugs. I know you understand that, too.

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    • Rossa-
      Thanks for your comments. You bring up such an important point about the challenges of helping someone in the midst of an extreme state. We are trying to develop a model first episode program. I am intrigued and excited by Open Dialogue but I also want to be cautious not to reify it prematurely. We need to see how this model can be transalted to other settings. I also continue to be worried about those individuals who want nothing from us. That is stressful to their families when they do not seem to be doing very well and challenging to their communities when their behaviors are disruptive. I do not want to be an apologist for a system that I want to improve but at the same time I do not think we can blame all of this on the drugs we prescribe or our treatments since the individuals I have in mind reject them all before they are even tried.

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      • Sandra, i am so glad to see you honestly address this last point. While my heart is strongly with survivors of psychiatry, and i have no doubt that many (including my relative) have been greatly harmed by “psychiatric treatment” as it is currently practiced, i get the sense that some do not grasp (or perhaps choose not to acknowledge) the very real dilemma of trying to “save” a loved one who has slipped into a life-threatening extreme mental/emotional state.

        I would love to see more open and honest dialogue between outspoken proponents on both sides of this issue, who have “skin in the game”. For example, David Oaks (a psychiatric survivor and Founder/Director of Mind Freedom International) and Pete Early, a journalist who wrote about his son’s saga with mental illness from the perspective of a parent who was horrified at the system’s treatment of his son. To his credit, David Oaks (who i greatly admire and respect) suggested such a dialogue after Pete Early came out with a sharp criticism of the conference in California at which David was a keynote speaker a couple years ago (sponsored by SAMHSA). The “powers that be” had tried to bar David from speaking, but thankfully he was reinstated after an outcry of protest from many of the attendees. While Pete’s position (i believe he’s in support of “assisted outpatient treatment) is anathema to many MIA bloggers and readers (including me), i still think such a dialogue would be helpful and might reduce the polarization among folks who have legitimate and honest concerns.

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    • Russerford-
      I had a chance to read those links. They are very interesting. It is a funny thing – the dialogue you wish for is really an ongoing internal dialogue I have with myself. Although I write on this website, I do understand the other perspective. As I note above (and I wrote an earlier post on this – http://www.madinamerica.com/2012/05/coercion/), I am part of the system of coercio that so many on this site understandably abore. In reading this, I continue to believe that critics of Whitaker tend to pick up on the edges of his argument (so-called “chemical imbalance”, disability data) and do not address the core question of the long term outcome and it correlation with drug use.
      Anyway, this extended series of blogs, is my personal attempt to recon with this.
      Thanks for reading and sharing this.

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  5. I am not going to read all the comments because i have a simple response to your looking into this. In effect what you have said was on both sides of the fence and that you gave to very different types of what doctors say will work. They have been finding long term use is not as good as it was touted before. It is in the best interest of the patient i think we need to remember if they are having more trouble maybe they should lower the med and see if it helps more, then decide if it is worthy to take them down more and to get therapy involved as well. I was dosed highly with meds for years and do believe i could have fared better with them being lowered a lot and maybe they should have listened to me when I said it was worse at higher levels. I have a sensitivity that I do not ignore anymore and try because they feel it is best for me. Simply put the patient should be heard along with at least having more then one way to help us as patients. sometimes yes more is not better. Thanks for reading

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  6. Sandy,

    I want to join others and say I greatly admire your hard work in giving these very challenging problems so much thought, effort and research in order to do your best for those in extreme emotional distress that you encounter regularly.

    I find it very good news that those not immediately drugged have better long term outcomes while those having the type of therapy provided by such practices as Open Dialogue at the outset of their crisis do fair better than those for whom it is delayed per your research. The former point is in keeping with what Bob Whitaker found.

    I agree with you that for McGorry to admit neuroleptics were not helpful in the above situation is a major plus and backing off from his original desire to subject even children to these problematic drugs for supposed tendencies for future psychosis.

    Do you have peer workers where you work? Perhaps that might help with those problematic people who resist all efforts to help them? Or your counselors familiar with trauma? I’m sure you’ve thought of that!

    I look forward to reading your conclusions.

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  7. Thanks, Donna.
    We do have peer workers and in the past year we have increased this part of our program. It has bee a great addition on many levels. The peers have done a good job. They have become role models in our community. It has been inspiring to my colleagues and me to see people – some of whom we have known for a long time – take on this role. There is nothing like seeing recovery in action to drive the point home that recovery is possible.
    I hope you saw that the Journal, Early Intervention in Psychiatry, featured an editorial and an article on the relationship between trauma and psychosis. https://www.madinamerica.com/2013/04/early-intervention-in-psychiatry-features-articles-linking-childhood-trauma-and-psychosis/
    I know that you have written eloquently abut the need to recognize this link.

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  8. Hi Sandy,

    Thanks for your response. I am glad to know that you are having success with peer workers who are modeling recovery for others.

    I appreciate your pointing out the article on the relationship between trauma and psychosis. The problem is that the medical model of psychiatry only sees such trauma or social stressors as mere “triggers” that brought out the victims’ existing mental illness, so it’s somewhat of a no win.

    However, the type of trauma, extreme stress/distress I have experienced with loved ones had nothing to do with psychosis or so called “mental illness.”

    I cited an article by Dr. Carole Warshaw on your last post and an excerpt from the ENCYCLOPEDIA OF DOMESTIC VIOLENCE to name only a couple I’ve read/seen that exposes the huge harm done by biopsychiatry when they falsely stigmatize the stress and trauma symptoms of abused women and children experiencing domestic violence as bipolar, ADHD, delusional disorder, paranoia and others while refusing to acknowledge the abuse at all leading to the women and children being destroyed while aiding and abetting the abusers. Dr. Warshaw admits that psychiatrists are trained to only focus on symptoms and are not trained to deal with domestic abuse, so they cause much harm in these cases when they should be screening for domestic violence and validate, support the victims since this is so common. The same is true for victims of work/school/community bullying and mobbing. Dr. Heinz Leymann did a great deal of work on this, which is covered online in THE MOBBING ENCYCLOPEDIA and he too points out that psychiatry does much harm to the victims of work bullying/mobbing by failing to acknowledge the cause of work abuse and stigmatizing the victims suffering abuse related PTSD with bipolar, paranoia and other harmful labels that destroy the victims and aid and abet the bully/mobbers often leading to suicide. There are now many books, websites and articles about school/work and other bullying and mobbing that can devastate many lives permanently.

    That’s why I asked you if you encounter this type of thing in your work. Or, do you tend to mostly deal with what is called psychosis or schizophrenia?

    Though I certainly empathize with those suffering from these emotional crises called psychosis and their families, I don’t think this is comparable to what I have encountered.

    The reason is that the abusive situations Dr. Leymann calls psychological terror are routinely misdiagnosed because psychiatry only focuses on symptoms and not the cause. The solution is not psychiatric labels and drugs, but for the victims to be validated to help them escape the abuse and call the abusers, bullies and mobbers to account to serve ethics and justice rather than helping to destroy the victims.

    As I said elsewhere, given that there has been such rampant over diagnosis of ADHD, bipolar and other DSM labels for abuse related trauma especially, I feel frustrated that this devastating crisis is not dealt with more on MIA.

    I would imagine your Community Mental Health Center must encounter various types of abuse causing extreme stress or trauma symptoms, which was why I asked you about that. I realize that now you are focusing on a very critical, necessary area of neuroleptics that is all the more important now that these dangerous drugs are being prescribed for everything including insomnia, depression, anxiety, etc.

    So, I don’t want to seem like I am pressuring you, but I would like to hear more about your encounters with the types of above abuse and related stress/trauma symptoms and how you handle it after you address the topics you planned to cover here.

    Again, I truly admire your hard work on behalf of the people you encounter in your work.

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  9. Hi Donna,
    I have had a different inmpression of the attentiveness to trauma as an etiologic factor in many types of emotional distress. It seems that people are increasingly attuned to the effects of truama on people. However, I do agree that the labeling we use implies that trauma leads to some of types of problem (PTSD type symptoms, anxiety and depression, for example) and that other conditions (mania, inattentiveness, psychosis ) are more “biological” and are not caused by environmental stress. I think this is a false dichotomy. I do not think we really understand much about etiology and these distinctions (which also lead to assumptions about appropriate treatment) can be terribly misleading.
    That is one reason why I think the articles to which I referred are important. It seems that trauma is associated with a wide variety of problems.
    I hope ths helps to clarify my thinking on this.

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  10. Sandra,

    Thanks for putting together this review on outcomes of DUP. The long term outcome profiles of neuroleptics are well established through Harrow’s studies and others including those you have cited. The question I’d like to know the answer to though is what are their impacts on short term (first episode) outcomes, and more particularly their impacts on self injury and suicide?

    For the problem that clinicians (and patients/families) face immediately is how to protect the patient in the short term, because if they are unable to do that, there will be no ‘long term outcomes’ to worry about!

    One psychiatrist explained to me the heavy reliance on neuroleptics in the first episode as a technique of risk management. Since there are no other options like Soteria (or even hospitalization past about a 21 day window) available for schizophrenia (which by definition lasts six months or longer in duration) the only option currently to try to manage safety is medication. He also explained that medication has to be used in some patients to ‘improve insight’ enough so that the patient can participate in CBT and start learning coping skills.

    The issue of insight and outcomes though, is an interesting one all in itself. There was one study in the British Journal of Psychiatry that looked at this issue that is worth reviewing:

    It notes several paradoxical effects, looking at issues with insight (which neuroleptics are supposed to improve by lessening the effects of delusions and command hallucinations) and outcomes of first episode patients with regards to self mutilations and suicide attempts.

    Having been through a first episode without medication and subsequent episode later on with it, I have seen first- hand that there is no ‘easy solution’ to the paradoxes these medications pose. I read Harrow first, before I read the first episode studies, and decided to place my bets on what was going to give me the best long term outcome. But then I realized I was playing a dangerous game of Russian roulette with my life by doing that, and decided to try a neuroleptic in my next episode – which improved my ‘insight’ dramatically during the episode and then backfired in the same way they described in this paper.

    So, I understand what you are saying when you say you don’t know whether you are helping or harming patients by directing them to try something else first. I spent the last few years reading these studies too, convinced I could find the ‘right’ answer to this question of whether to use neuroleptics. I am starting to realize now, there may not be a right answer to find.


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    • Hi Alexa-
      Thanks for your comments and the link. You and I agree – there is no right answer for everyone. I offer my conclusions in the next (and last) post in this series but there is no absolute answer embedded there.
      I appreciate your sharing your experiences here. This is an important part of this discussion.

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  11. Sandy, thanks for your thoughtful post!

    One of the factors I have never seen addressed in studies about the supposed problems resulting for longer “durations of untreated psychosis” (DUP)is the problem of un-equivalent groups.

    That is, when we catch people early on in psychosis, we may be seeing a group which contains a number of people who are likely to recover if simply left alone. When we look at people who have had a longer duration of psychosis, we are looking only at people who failed to recover, a sub group that may have less positive an average prognosis.

    I believe I could have been diagnosed with psychosis when I was a young man and yet I got through it fine without psychiatric help: my friend and fellow MIA blogger Michael Cornwall, and many others, have had similar experiences. Too often, mental health professionals think professional help is required for any kind of recovery, and fail to notice that many people manage recoveries without its help and that many kinds of professional intervention may be more likely to get in the way than to help.

    Anyway, I think it is curious that the possibility of the short and long duration of untreated psychosis groups being different doesn’t get addressed, when it may play a key role in how the statistics come out.

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