This month a study of the treatment of young people diagnosed with schizophrenia attracted a good deal of attention. The headlines on my various internet feeds read “Talk therapy helps schizophrenia” and hailed a new treatment that includes listening to young people’s concerns and helping them find their way back to school or work. I often wonder what others make of my profession. What happened to render the notion that talking to people about their experiences and helping them find jobs or go back to school is something novel?
I was a psychiatrist who participated in the Recovery After an Initial Schizophrenia Episode Early Treatment Program (RAISE ETP). Although I welcomed the headlines, the reports left me with mixed feelings. While I celebrate the attention given to this study, I did not find the news reports to be entirely accurate. Several issues were raised, so to speak, that I want to address in this post:
- What is RAISE? How was it funded? What was the experimental design? What was its stated goal?
- What are the assumptions and hypotheses that drove this study?
- What results have and have not yet been released in published reports?
- What does RAISE teach us about science, spin, and politics?
- What are the implications for a post-RAISE world?
What is RAISE?
There are two RAISE studies. Their stated goal was to evaluate what is called coordinated specialty care (CSC), i.e., clinicians with varying expertise who work together as a team. The population of interest was young people who were experiencing their first episodes of psychosis. RAISE Implementation and Evaluation Study (IES) was intended to study the implementation process in several clinical settings. I will not discuss it here but it is important since it influenced the development of On Track New York, a large initiative in that state. Under the direction of Lisa Dixon, M.D., this program is also having significant influence on program development around the country. The one in which I participated is the subject of recent news reports — RAISE ETP. The Principle Investigator is John Kane, M.D. This study was designed to compare the efficacy of CSC as compared to treatment as usual (TAU).
RAISE funding was part of the American Recovery and Reinvestment Act. The late US Senator Arlen Spector allegedly directed money to NIMH for this purpose but I have not been able to confirm that. As you may recall, that was a time when our economy was floundering and the federal government infused it with money to help keep it afloat. Regardless of whether one thinks that funding psychiatric research is a way to save the economy, my sense is that this was a relative windfall to a neglected area of research – clinical trials that include non-medical interventions. An enormous amount of work went into getting this large operation underway quickly. Leading researchers in the fields of family education, individual psychotherapy of psychosis, and psychiatric rehabilitation were brought together to design a protocol. The study was modeled on similar programs that had been developed in other countries and the intent was to integrate treatment approaches that had the best evidence bases. Some of the interventions were designed specifically for RAISE ETP. For instance, the manual for the individual psychotherapy component, Individual Resiliency Training (IRT), while based on existing cognitively based approaches, was written exclusively for this study and clinicians at the participating sites all needed to be trained before the study began. The manual is available on line. A paper has been published that describes the rationale for the particular components of this study .
The experimental treatment was NAVIGATE. It included a number of features: A weekly team meeting including a program coordinator, research assistant, psychiatrist/nurse practitioner, and other clinicians who offered the required treatments. The specific treatments offered were IRT, family psychoeducation, and supported employment. The psychiatrist worked with a program called COMPASS. The study subjects completed an online questionnaire prior to each visit. The answers were available to the psychiatrist when they met. It included questions about voices, mood, unusual thoughts, and a host of possible side effects. Weight and blood pressure were monitored regularly. It also asked about the person’s goals for the meeting. This was intended to foster shared decision-making. Within COMPASS, the psychiatrist had access to suggestions about recommended treatment but there was no fixed treatment algorhythm s/he was forced to follow. For instance, if the person was gaining weight, suggestions would appear for evidenced-based recommendations for next steps. Each individual was followed for two years. An extended study is underway to follow these individual for up to an additional three years but the current reports are on the initial two-year study.
The research team identified 34 sites around the country where investigators were willing to participate. The range of sites provided both geographic and socioeconomic diversity. They were not programs that were affiliated with academic research centers. This was intended to mimic “real life” but it posed an added challenge for the research team, since participants at these sites were not used to following research protocols. Since this was a study intended to compare NAVIGATE to TAU, the researchers needed to assign subjects to one of each treatment. Rather than do this for each person who consented to participate, they randomized the 34 sites, i.e., each site offered only NAVIGATE or TAU to each person who agreed to participate. This had the advantage of only needing to train clinicians at 17 of the sites. I was fortunate to be a participant at a NAVIGATE site.
What were the Assumptions and Hypotheses?
During that same time, I was also studying Open Dialogue (OD). When I finished the RAISE study, I led my clinic in the direction of Open Dialogue. There were several reasons why.
First of all, I no longer am sure I accept the fundamental assumptions inherent in RAISE. Although the model includes a number of important non-medical approaches, the conceptualization of schizophrenia as a medical condition is at the core of the program. In a previous blog, I contrast a medical model approach with a need-adapted approach. In the former, the expert conducts an evaluation and then offers treatments based on the outcome of the evaluation. In need-adapted approaches, the understanding of the problem is derived from the process of meeting together and listening to all perspectives. RAISE adapted a medical model and that was evident in all aspects of the study. For instance, the psychotherapy, Individual Resiliency Training, included modules that address illness management and the emergence of symptoms. This is a decidedly medical formulation: the clinician says to a young person, “You have an illness and I can help you to manage it and cope with its symptoms.” Similarly, the family component is family psychoeducation about the illness.
Secondly, engagement seemed to be our biggest obstacle in working with this group of individuals. Getting people to appointments, even after they went through the rigors of signing an informed consent form, was not easy. There was a lot that we did – drawing mostly on our experience and common sense – that was not captured by RAISE. Open Dialogue, in contrast, is all about engagement. OD has given me a framework that is helpful in many settings but especially when a family is concerned and invites us in but the person at the center of concern does not agree with the way the problem has been defined. These individuals would not come to IRT because they do not think of themselves as having an illness to be managed. This is not to say I have entirely abandoned medical conceptualizations of psychosis. I just am not sure that conceptualization is helpful for everyone.
In RAISE, antipsychotic drugs are considered essential and the recommendation is that they are started early and continued indefinitely, albeit at the lower doses than are typically used. I have written elsewhere why I think this is problematic.
What Are the Results?
There have been several papers published thus far, and undoubtedly there are more to come. The early ones describe the study and offer a description of those who participated. One notable finding is that most study subjects were already on antipsychotic drugs at entry and many were already overweight with elevated lipids (cholesterol and triglycerides). Many were taking antipsychotic drugs – and in some instances more than one – at doses that were above the guidelines established by the RAISE team (based on their review of the available data). This demonstrates that common prescribing practices do not follow expert recommendations.
The paper that caught so much attention was the first to publish outcome results. While the study was touted as showing greater improvement among those in the study group, those effects were decidedly modest. They reported that NAVIGATE participants were more likely to engage in and remain connected to services. As for clinical outcomes, their major measure was the Quality of Life Scale. It is worth noting that in both settings there was overall improvement. The NAVIGATE group fared better on the overall score as well as on the subscales of interpersonal relations and intrapsychic foundations. The NAVIGATE group also showed overall greater improvement on the Positive and Negative Symptom Scale, a standard symptoms rating scale. A major finding was that the NAVIGATE treatment had its impact primarily in the group of subjects who had been symptomatic for less than 74 weeks. The nominal differences between the groups was small. This study was large. That allowed the researchers to detect differences that while statistically significant may not be as clinically meaningful.
There was a high dropout rate and its impact on the analysis remains unclear to me. The NAVIGATE group started out with 223 individuals, of whom 104 (47%) had full or partial 24-month assessments with no gaps. Forty-three (19%) had partial 24-month assessments with gaps, and 76 (34%) left the study early. In the TAU group, 181 entered the study, 59 (33%) completed the 24-month assessment with no gaps, 25 (14%) completed it with gaps, and 95 (52%) left the study early. This is a reflection of the challenges inherent to this kind of study but it has important implications for how we understand the results. It also bolsters my impression that engagement was a challenge in both settings.
There has been some discussion about the use of medications since in some of the initial press reports John Kane was quoted as saying that the subjects in NAVIGATE were on 20-50% lower doses than in the TAU group but these results were not reported in the initial papers. I suspect these data are available and will be included in future reports.
Science, Spin, and Politics
The RAISE study has been celebrated since its inception. I was surprised to find NIMH touting the presumed efficacy of NAVIGATE even before the study was fully analyzed. For an organization that prides itself on scientific rigor, that struck me as strange. Spin dominates so much public discourse that we seem not even to notice it anymore. Those who fail to spin their results or programs risk losing out on funding and I suspect this was the main driver of the hype in this instance. It is no secret that NIMH has decidedly deemphasized research that is not aimed primarily at elucidating brain function. The researchers on this study have had to fight their way to get funding, especially those among them who study psychosocial treatment approaches. This was a huge windfall and opportunity for them. It was a lot of money and perhaps it was too big to fail.
While I welcome the attention this study has received, there is risk in the hype. Rather than understand what might have been done better, we focus on why this study was so good. I have come to the conclusion that Open Dialogue offers something that is missing in NAVIGATE. But leaders of my field, and this likely includes the leaders of RAISE, would suggest there are inadequate data to make this conclusion. I agree. But I would argue that the results of RAISE are inadequate to conclude that NAVIGATE is the best model. What I am calling for here is to slow any rush to judgment.
I have another concern that relates to conflicts of interest. COMPASS, the decision making tool that guided prescribing decisions, leaned toward the newer antipsychotic drugs. Studies cited to support the use of the newer antipsychotics over the older ones were industry-sponsored studies. The history in this area is not good and suggests that our current evidence base provides a distorted picture of drug efficacy.
The lead author of RAISE is currently promoting the use of the new patented antipsychotic drugs that are given by injection on a monthly basis, including among those who have experienced single episodes of psychosis. He likely does this with the sincere belief that this is the best approach. However, his list of industry associations is long. He is a man with a significant stature in psychiatry and this study, and the attention it has received, only enhances that. What he says has impact whether he is talking about a government-funded study or a pharmaceutical study. If the Wunderink study on intermittent drug use is correct, then we may be making a tragic error with many young lives when we encourage patients to take long-acting injectable antipsychotic medicines. When I asked the RAISE leaders when was a good time to try to stop the drugs, the emphatic answer was “Never.”
A Post-RAISE World
In the U.S., there is currently much attention given to reform of the mental health care system. One area of focus has to do with early intervention with young people who are experiencing psychosis. RAISE is held up as a model. The outcomes from this study are not good enough to support the notion that we have all of the answers.
While we do not yet know if the outcomes from Finland can be replicated in other settings, there are enough positive data to suggest that we continue to evaluate that program. There are projects underway in the US and elsewhere and reports are forthcoming. But RAISE and Open Dialogue are not the only models. Oregon has implemented a wonderful program called Early Assessment and Support Alliance (EASA). It is a person-centered, flexible approach to working with young people that warrants broad attention. Questions regarding the roles of antipsychotic drugs and optimizing engagement are far from settled. There may be reason to celebrate the RAISE study, but while the results favored the experimental protocol, they did so only modestly. We can do better. I hope we remain open to exploring other promising models of care.
Thanks Sandy for taking the time to share your perspective, in this case from “inside” the RAISE study! Your thinking all makes sense to me.
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Thanks for the detailed breakdown! It’ll make it easier for me & others to wade through the Kane article.
One thing worried me about the advance publicity for this study a couple of weeks ago: the authors proudly proclaimed that their model could be implemented right now and be practical under current funding conditions at community mental health centers. Would love to know if you think that’s true, or if you’re as skeptical as I tend to be …
First of all these centers are all underfunded and stretched to the max! In many of them meds are doled out by a “telepsychiatrist” in a remote location – or by a nurse-practitioner who is probably supervised by a telepsychiatrist. As far as therapy, peer support, activities, job training etc. they are often either non-existent or skimpy as hell and provided by low-wage, high-turnover staff. I’m betting your clinic spent more than the current skimpy Medicaid allotment in working with each NAVIGATE client, Sandy. Am I right?
Second, and worse yet, most CMHCs are considered “Safety Net” facilities (because they serve largely poor folks on Medicaid) and so are eligible for the “Section 340B” drug program. This lets them buy drugs at a discount, charge patients’ insurance the regular price, and pocket the difference. The more expensive the drug, the more the facility makes by prescribing it.
That provides an awful incentive for cash-strapped hospitals and clinics to put as many patients as possible on expensive drugs – and monthly injections are the most expensive (Invega Sustenna and Abilify Maintena go for about $1500 a pop). There’s a growing trend for CMHC’s to have their own pharmacies inside the clinic, and a whole cottage industry of consultants teaching them how to use 340B. Worst of all, monthly injections are handled on the buy-and-bill system wherein the clinic gets a fee for performing the injection – based on a percentage of the price of the drug! In other words they make ten times as much from a $1500 injection as a $150 injection.
Is this how Dr. Kane is gonna make his model program “scalable” at current Medicaid funding levels? By compelling patients to submit to the highest-priced drug regime they can stand … for the good of the clinic? It sounds gruesome but nothing is too gruesome for the world of for-profit medicine these days. After all, Dr. Kane is now a 10% owner of the Contract Research Organization that Otsuka has hired to test Abilify Maintena in first-episode psychosis. Betcha he knows how to keep the customer satisfied too.
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Hi Joanna,
Thanks for your comments. That is very interesting information about Dr. Kane. How this kind of obvious COI became acceptable is beyond me.
It is hard for me to answer your question other than to address implementation in our clinic. The kind of care you describe has no resemblance to our clinic. We do not buy drugs and resell them. We have psychiatrists in the offices meeting with people directly. Although we are busy, we have not gone in the direction of the 15 minute visit.
We already had a robust supported employment program so that was not new for us. What we added was a case manager but some clinics had a case manager who was trained in IRT. Overall, I am proud of what we are able to do.
Since states are all funded differently, I can’t speak to challenges in other programs. But this is where RAISE is helpful and important. We now have highly influential voices who are telling everyone that we need to provide more than what you describe above.
But the business model for CMHC’s is tenuous even in Vermont so I am not sure what the future will hold.Where I see a major challenge in implementation is in the training of clinicians who can offer IRT or any other treatment. The turnover in our clinic is high in part because those Medicaid reimbursement rates force us to keep our salaries are low. We recruit some very fine people but many move on for this reason. Most of the people who were trained by RAISE no longer work for us. This kind of work requires experience and practice.
I am trying to implement Open Dialogue but no insurer will reimburse for more than one clinician to be in a room. So yes, the financing of this will be an ongoing challenge.
This may be where people backing RAISE needed to emphasize its benefits. If we can convince people that these early intervention program improve long term outcomes, then an economic argument in favor of these programs can be made.
Thank you for all of the fine work you do!
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Psychiatry sometimes reminds me of industrial agriculture where a profit is made out of every portion of the animal and the suffering is lifelong and dreadful.
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While reading about Kane et al’s insistence on the illness model and the need for lifelong neuroleptics, I was running through my mind all the studies that show that long-term drug use cause harm and that many formerly psychotic people have tapered off completely:
– Martin Harrow’s 20 year study in which many (more) clients off drugs than on became functional.
– Lex Wunderink’s randomized study in which clients coming off drugs did significantly better over 7 years.
– Courtenay Harding and the Vermont study in which the best outcomes occurred in those who had stopped drugs.
– The World Health Organization study of 1000+ including the many hundreds of recovered functional people in developing nations who were off drugs or never took them.
– Gottdiener’s metaanalysis of psychotherapy for schizophrenia in 2,600 clients in which drugs or no drugs made no difference to client outcomes.
– The 388 program’s long-term work with several hundred psychotic people most of whom return to functionality without neuroleptics.
– The many, many accounts of recovery from psychosis without neuroleptics in such books as Paris Williams’ Rethinking Madness, Murray Jackson’s Weathering the Storms, Ira Steinman’s Treating the Untreatable, and dozens of others I’ve read.
– p.
If Kane is aware of some of these, then he has essentially decided, “I’m going to ignore the likely reality that keeping my clients on long-term drugs is doing severe harm because making hundreds of thousands of dollars a year is more important than people’s wellbeing.”
If he’s not aware of these studies, perhaps he is simply a product of a decontextualized approach to human suffering so bizarre and impersonal, so detached from the individual nature of people’s psychoses, that he simply cannot comprehend that the diagnosing-drugging model could be wrong and harmful. I would guess it’s the latter. Probably any contradictory data showing the likely “truth” – that drug use has no long-term studies supporting its efficacy and more than likely causes long-term harm – is simply filtered out of his mind.
Psychiatrists like John Kane are therefore essentially pathological liars who don’t even know that they are constantly misrepresenting the truth to their clients about (false) diagnoses, (damaging) drugs, and harmful predictions of lifelong illness. What a sad reality for poor uneducated people who psychiatrists like Kane take advantage to sustain their status and incomes.
The details shared by Johanna Ryan above about how Kane can profit from promoting long-acting injections are truly disturbing. Sandra was right that such a conflict of interest for the author of a major study on treating such people is absolutely horrible.
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Hi BPD,
It’s the medical approach isn’t it.
I don’t see any reason why psychotherapy wouldn’t work. I think it’s not the breakdown that matters (once a person can get to a safe place) but the underlying problems that cause the breakdown.
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Dr Steingard:
Thank you for this sobering and insightful piece. My dad gleefully called me when the article broke in the NYT, exclaiming: “This validates what you have been saying about pumping kids full of meds!” I didn’t share his enthusiasm, however and sure enough, others raised red flags about the article. Now, with your sobering piece, my heart is heavier than ever. It there any reason to be optimistic? Since the seventies when Dr. Mosher failed to get any major coverage for his early Soteria research, it has been clear that non Pharma approaches to psychosis will never receive a fair trial in the US, let alone be covered in the media. Big Pharma will always dictate the flow of research dollars as well as information. Forty percent of all news is written by public relations employees who work for large corporations. I am devastated by this reality.
On another point, I thought the RAISE study was funded by the Robert Woods Foundation or was this just EASA? Where does EASA fit in? I would trust the RWF funded studies more than I would the funders you mentioned in this piece. Foudations have less invested in the outcomes of the studies.
The only solution is philanthropy. Anyone know Warren Buffet or Bill Gates? We have to raise billions for independent scientific research. It’s the only way that that we can fight this colossal corporate juggernaut. Still, some say there is enough evidence to change clinical practice today. It’s just that the media and NAMI is controlling what consumers know about mental health.
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Indeed Mad Mom, there is a mini mountain of evidence pointing to the facts that psych drugs cause long term worse outcomes and that psychotic people can recover without or after tapering off neuroleptics. So in principle absolutely there is enough evidence to change clinical practice. Other regions like Scandinavia and Britain have already moved in that direction, albeit tentatively.
But American mental health care policy is so powerfully under the sway of the pharmaceutical lobby that the studies I wrote about in my comment above have not been widely disseminated. American psychiatry today exists in a similar state to the tobacco industry before the health risks of tobacco were widely known.
Your idea of appealing to philanthropists is a good one. I have calculated that it would require “only” 3-5 million dollars to run a study of long-term psychotherapy for 50-100 psychotic people. Perhaps it would be a good idea to write a position paper laying out the facts about current treatment and outcomes for psychotic individuals, the financial burden their disability puts on society, and contrasting that grim picture with the Open Dialogue results. To these could be added other data showing efficacy of psychotherapy such as Gottdiener’s and Mojtabai’s metaanalyses, both of which supported increased research into psychosocial approaches to psychosis.
With backing from budding dissidents within the psychiatric field, perhaps such a document could be convincing to wealthy philanthropists looking to fund mental health care research. I wonder if such philanthropists have already funded research into “schizophrenia” along biological or genetic lines. If so, perhaps they would be shocked, and disappointed to know how little results have come from pouring money into biological research. And how they have been misled.
And perhaps I should take it upon myself to write such a position paper 🙂 At this point I am almost a walking encyclopedia of information about psychological approaches to psychosis, so I think I could do a good job with it.
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And madmom, the ultimate target for such an appeal to philanthrophy might be a wealthy individual with a personal interest in the subject; i.e. some wealthy person whose family member had severe emotional issues and did not get better under conventional approaches. I wonder if such an individual is out there, either in America or China or in another country which has many billionaires.
Also, if you care to look through it here is Gottdiener’s metaanalysis.
http://psychrights.org/Research/Digest/Effective/BGSchizophreniaMeta-Analysis.htm
It’s pretty clear from this that medication makes virtually no positive long term different from a functional standpoint over years, but psychotherapy makes a large difference. Ironically that is probably what helped in the RAISE study – the attempts of the RAISE psychiatrists to show empathic interest in the people they worked with, rather than the drugs or the illness model. That is what I read into Sandra’s comments about doing a lot of necessary things for clients based on experience outside of the guidelines.
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Hi Madmom,
I am sorry you were so disappointed by this post. It was not my intention. I think there are positive aspects of RAISE both in its content and in the associated hype. If you read Joanna’s post above, you can see that there is so much room for improvement and the RAISE study has the ability to garner support.
I did, however, want to point out my own areas of disagreement while admitting that there is much to learn. With further study, I am likely to continue to revise my own thinking.
I will continue to write and think about how we use the drugs. While I currently believe there is a role for them (and I disagree that everyone can come safely through psychosis without them), I worry about any initiative, even those based on Open Dialogue, that ignores how the doctors are prescribing the drugs. I worry that we will not replicate the findings of Finland, even if outstanding therapeutic services are offered, if the drugs are prescribed early, at too high doses, and maintained indefinitely for everyone. This remains a contentious issue in my field. I hear from psychiatrists who generally support what I write but, on this issue, they think I have gone too far. Some think I am so wrong about this, that this is a subject not even worthy of study. For them, the issue is settled and research on this topic is considered unethical.
As for philanthropy, I will use this opportunity to mention the Foundation for Excellence in Mental Health Care (full disclosure- I am on their board). This is a foundation that is trying to raise money to support research and promising approaches. This includes Open Dialogue, Hearing Voices, Mad In America Continuing Education, and Rxisk. We agree that there needs to be funding from other sources so please check us out.
http://www.mentalhealthexcellence.org/
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Sandra,
Before I got into my normal broadsides against psychiatric diagnosing and drugging, I meant to commend you on this article. It is an excellently written piece and I am impressed by how you can hold different viewpoints in mind as you write it. Also, impressed that you have the courage to take the positions you take from within the system. I encourage you to continue with this type of writing and to get other professionals to join with you in questioning their beliefs.
It is still incredible that many psychiatrists can willfully hold on to the belief that lifelong drugging is necessary and that not to recommend it is unethical. I guess the power of money, greed, and drug companies over them is just much stronger than their impulses to be open minded and do the right thing. Or perhaps they are simply ignorant and uncurious.
The studies you know of by Harding, Wunderink, Harrow, World Health Organization, Gottdiener, etc. are pretty clear that many thousands of once-psychotic people have recovered off drugs and that the long-term trend is toward people doing better off or without drugs. By contrast, no long term studies that I’m aware of support psychotic people on neuroleptics functioning better than those off over periods of 5-10+ years. If there are any, please share them. But I don’t think there are.. I’ve already asked a lot of people to provide such studies with none found… that’s why Lieberman couldn’t answer the question about them.
So again the psychiatrists you reference are willfully holding on to a harmful false ideology, either out of ignorance or closemindedness or via the use of psychological defenses of the kind mentioned in books like How We Know What Isn’t So. They’re half the way to being diagnosable as schizophrenic: holding delusional beliefs about indefinite drug use for which there are no valid supports in research or practice! Now all your psychiatrist colleagues need is to start hallucinating images of psychotic people functioning well on long-term drugging, and then they can be subjects in the next RAISE study, being helped to manage their illness! Remember this the next time you speak to these people: they’re half way to being diagnosable schizophrenics.
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By the way this Mental Health Excellence group you are involved of looks great. I am going to get involved with it. I will try to moderate myself a little but can’t promise anything!
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Sandra,
I have to agree w/ @bpdtransformation, there is more evidence of pathology amongst your colleagues revealed in this study, than any useful information about treating individuals experiencing their *first episode psychosis*. This is just another example of manipulating results from another confirmation bias field study– what a waste of money! I cannot fathom how the obvious tainting of the population you are so eager to study has not occurred to you
It seems like a good time to consider the reasons psychiatry has for stacking the deck to favor the result that they want to believe– because establishing the clear motive, financial gain, (no surprise, right?) also establishes the practice of psychiatry as anauthority based tradition rife with irrational conclusions, or rather, simply, the signature *science* of psychiatrists.
I strongly disagree with this statement from your comment above:
” (and I disagree that everyone can come safely through psychosis without them),”–
Not only is it possible for everyone to come safely through psychosis without brain disabling drugs, BUT, the likelihood that this can be rightly observed and studied is almost zero. The shame of this is the needless suffering of vulnerable people due to the *thinking* of psychiatrists who have failed to take a proper history of the treatment guidelines established in the mid 90’s, good ‘ol TMAP– There is a big error in the premise for drugs as first line treatment — and worse, having established this classic Market Based Medicine protocol 20 years ago, there is an ice cube’s change in hell that any *patients* who have not been drugged for psychotic symptoms, will avail themselves for psychiatrists to study them. Kind of a slam dunk for hanging on to the drugs, don’t you think? I was hoping you would raise this issue with Allen Frances at the Gala finale of the MIA film Festival last year. Sitting next to him on stage for the psychiatrist panel event, you had the perfect opportunity to jolt his memory 🙂
Not every psychiatrist, certainly, and not every therapist or licensed MH professional CAN support a person experiencing severe mental states without drugs– That should be noted well before saying that *not everyone* can come through psychosis safely w/o drugs– . The important message for the public is that seeking psychiatric treatment for first episode psychosis means you will not likely get the chance to come through safely without drugs–.
The current standard of care is a guarantee that a steady stream of psychiatric survivors will add their narratives to support what we already know about harmful effects of psych drugs, locked ward *treatment*, and the MH system in general — Why won’t someone (preferably a board certified psychiatrist) kindly inform the APA, NIMH and any psychiatrist you happen to know, that their error driven practice IS the problem? –Again and again and again– until it is heard!
~Katie
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Katie and BPD,
While you are of course entitled to your opinion, I am uncomfortable with the personal attacks in these last few comments. I think this kind of discourse hurts ourselves and hinders what we are trying to achieve. Let’s stick to the data. We do not enjoy it when others try to undermine our arguments by speculating on what type of psychopathology might be driving us.
Katie,
If you are convinced that everyone can come through psychosis with some form of support that does not include ever using drugs, please provide the data. I would like to see this done in a system that has no exclusions. In Soteria and Open Dialogue, not everyone was helped by their approach.
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My statements re: psychiatrists holding delusional beliefs about schizophrenia being a brain disease and lifelong neuroleptics being a required treatment are not personal attacks. Rather they are uncomfortable facts about what the RAISE psychiatrists are actually communicating to clients…. representations that are completely out of line with the nuanced and often disturbing information we have available about the validity and chronicity of psychiatric diagnosis and the potential harms and benefits of drugging. Specifically, saying that schizophrenia is a lifelong brain disease and that drugs have to be taken for life really is pretty delusional, as the sources I’ve elaborated on in my other comments make clear. I know you don’t believe those things for sure Sandra, so my comments aren’t directed at you. Maybe I could be a little bit nicer in the way I say things, but I I doubt the RAISE psychiatrists apart from you are reading this anyway.
I was excited about this research, but now that I see how it has been corrupted and distorted by the disease model and the drug companies, it is disturbing. What is really going on should be exposed even if it’s harsh and uncomfortable.
I still meant what I said about this being a good article. It’s fortunate that an open-minded psychiatrist like you is questioning long-held tenets of the field and I wish there were more people like you writing about these issues. The good thing about the RAISE study is that it’s showing American psychiatry that psychological / systemic / relational help really makes a difference to psychotic people – i.e. the job training, therapy, and family support that RAISE involved. This is obvious to most people, but it’s news to the psychiatric field, holding negative beliefs as many psychiatrists do about chronicity and poor outcomes of psychotic conditions. RAISE can hopefully be a starting point and a driver for future research that will be gradually more detached from the medical model.
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Sandy,
I think I should start this response by clearing up a semantics issue I have had since my first exposure to acute, inpatient psychiatry (1992- Johns Hopkins Child Psychiatry). It seems to me that the terms so frequently used to make an argument for or against psychiatric treatment approaches, reflect entirely different meanings than their original definition and intent. I could say that the claim to employ scientific language is as error laden as the chemical imbalance theory of mental illness and that both reflect a claim to *medical* authority by virtue of title alone; that both of these practices (deceptive use of language) apply only to psychiatry-, and thus make the argument that disagreements about psychiatric interventions and treatment approaches cannot be settled by *data*. alone. I would be obligated to offer some type of proof, in any case.
I had 14 years of medicine behind me, 5 years in critical care, and was very familiar with the scientific method as it applied to diagnosing and treating patients with signs and symptoms that were quantifiable and reliable indicators of disease and recovery, by the time I encountered bio-medical model psychiatry. After more than 20 years on the front lines in several inpatient psych units, I was never able to correlate any aspect of psychiatric diagnosis and treatment with medical applications of the scientific method, and was therefore, blessed with a completely open mind with regard to the adverse effects of psych drugs. I was not biased/influenced by the lack of data to support the reported and witnessed adverse effects; not biased toward accepting the view that these were *new* symptoms; nor was I convinced based on (now considered completely unreliable) data that demonstrated efficacy and/or safety of any psych drug. I was, however, convinced by the data I was collecting as a nurse trained to closely observe and monitor people in distress, that published studies in our professional journals were worthless at best and potentially dangerous– decades before scientific investigation provided a basis for my convictions.
So, while my more than two decades in close quarters with psychiatrists and MH clinicians, even a few prominent academics, has convinced me that psychiatry believes itself to be both medical and science based, I have yet to see any scientific process, in clinical practice or in industry funded clinical trials. I couldn’t disagree with you more regarding the significance of *data* ( a term associated with scientific inquiry) with regard to the efficacy of psychiatric treatment approaches.
In psychiatry, data is a subjectively contrived measure of the challenge to put forth whatever a psychiatrist would have us believe. Meanwhile the scientific evidence of jury rigged RCTs and harmful effects of both drugs and treatment are virtually ignored by mainstream psychiatrists. This data is, imo, the most significant measure of psychiatry as a medical specialty.
With regard to documented approaches to supporting people who are experiencing severe mental states, that are labeled *psychosis*, within the context of a psychiatric study, the limits are set in terms of what constitutes an intervention and the drugs available for additional support. For those who believe all mental/emotional crises are embedded in the human condition, human responses to support someone safely through *psychosis* without psych drugs, are infinite in number and kind. You cite two studies conducted within the context of Western bio-psychiatry, with all the constraints of our culturally biased perceptions of *psychosis* and *treatment approaches*-. Though novel, Soteria and Open Dialogue are operating under the Western bio-psychiatry umbrella;studied through its lens, limited by criteria ( for diagnosis and successful treatment outcomes) imposed by the very model they are trying to breach. To their credit, their goals are based on humanistic principles, and their progress has been breathtaking.
I am convinced that the drugs you say are indicated when other approaches fail, are never required to support someone safely through *psychosis*. I am convinced these drugs are inherently harmful, and that there is no benefit that justifies the risk of administering them, especially to children and the elderly– and never by force to anyone. Not implying banning them is even feasible, but honest and full disclosure about their spurious history and their potential for damage should be mandatory, along with a strongly encouraged, medically supervised, programs for safely supporting people through tapering and withdrawal to the lowest dose they can tolerate if unable to come off of all of them completely .
My psychiatric nursing practice was based on humanistic principles, which grounded my convictions regarding force, coercion and dismal prognostic claims that continue to exist despite the lack of scientific evidence for these routine practices in the field of psychiatry. I have found that when I took these options off the table, I was free to develop in myriad ways as both a nurse and a human being. I am convinced of the unlimited nature of human potential that has proven to be more valid than data from studies designed to perpetuate the authority of psychiatry as a medical specialty.
My strong opinions regarding the topics you raise in this blog, are based on professional lived experience that connects me more to the human element than the academic discourse that I personally believe is not applicable to psychiatry. I do not say this to insult you, demean or attack you, personally. By the same token, your inference that my convictions are invalid until I provide data , is not personally offensive to me. I hope you will consider that both bpd and I have employed the standard definitions of the terms established by the scientific community and where applicable used the terms specific to psychiatry to support our criticisms of this study and its impact on those designated to benefit from it.
Best,
Katie
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Sandra,
I noticed that this phrase, “Katie, If you are convinced that everyone can come through psychosis with some form of support that does not include ever using drugs, please provide the data. ”
is kind of a fallacious argument. It can never be proven one way or another that “everyone” can “come through” “psychosis” with “some form of support” not including neuroleptics. In this phrasing there are many vague terms and suppositions that would require all or nothing arguments or biased definitions. Ironically what you said goes a long way toward explaining why psychiatry is not a genuine field of science/medicine, if you think about how vague and contested and difficult to pin down all these terms in quotations are. No wonder many people don’t respect such a field when it attempts to claim it is a real science. Psychiatrists need to admit how much they do NOT know.
Data has to be combined with think common sense and experience, resources which cannot be broken down to raw data components. Not everything that counts can be counted; sometimes relying on raw data is brittle and misleading. My experience and intuition tell me that pretty much anyone, given sufficient love, understanding, safety, insight, over time, can make progress and get better to varying degrees from “psychosis”, whatever that is for the person. Many of these terms and experiences are non-quantifiable and not measurable in the Western paradigm of science and precise knowledge. This is similar to how on a relativistic level some things are not exactly measurable or observable that are easy to measure on Newtonian levels.
Drugs are one possible tool to reduce overwhelming distress in the short term, but clearly not a prerequisite. Imagine if you went back in time to the 1940s and worked as a healer then, before the advent of psych drugging. Would you think that any one of the psychotic people you saw in that time period, not having access to the wonders – or perhaps nightmares – of modern psych drugs – would be able to recover given sufficient social support? People did get better back then from psychotic states – actually, more frequently than they do now in modern countries, which it itself a damning indictment of psychiatric drugging and the medical model! If you want some data for that, look at Jaaskelainen’s metaanalysis covering 100+ years of psychosis recovery.
These strong opinions may be unsettling, but if everyone agreed with you and just communicated like computers using raw data, it would be boring and you wouldn’t learn much. I feel that you find this discussion interesting and provocative even when you don’t agree with all of it and that’s one reason why I continue to engage with your writing.
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“Not every psychiatrist, certainly, and not every therapist or licensed MH professional CAN support a person experiencing severe mental states without drugs– That should be noted well before saying that *not everyone* can come through psychosis safely w/o drugs– . The important message for the public is that seeking psychiatric treatment for first episode psychosis means you will not likely get the chance to come through safely without drugs–.”
This rings true to me. The discrepancy in the perspectives here is regarding who is the one limited–the client who is deemed as the one “needing” drugs or the psychiatrist who is unable to relate to a client who is not on psych drugs. Personally, on an intuitive level, I’d say the latter would be most likely be true. I think often, the limitations and confusion of the clinician are easily projected onto the client. This is where things get stuck and go downhill, imo, because of these false and stigmatizing projections. Narcissistic abuse is very real for the client, and quite prevalent in 1:1 private practice. Please let’s not forget that, I think it’s a vital issue here, and why psych drugs are so often the crutch for psychiatrists.
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Just a quick note from 35 years of direct experience; For many individuals who are in emotional crisis and by this I mean certain rather specific “criteria” that I go by) that they are extremely paranoid and not letting anyone near them, they become agitated upon approach, they are incoherently yelling and hearing voices, they are unable to answer questions such as “What can I do for you?” this kind of person cannot be reached out to, held in an empathic embrace, made more comfortable with a cup of milk or a sandwich or being in a quiet place for awhile with no pressure. I see this every day in the ER and the “leap” to medication after everything has been tried is the only way to calm or numb the troubled soul and mind. I am not defending my actions, I believe that first a real period of calm, compassionate reaching out and comforting is necessary and I do that always, but there are times when one cannot get through. Believe me that the sheer numbers of such suffering people being brought into the ERs is under reported because no one is keeping count. In most other cases the reaching out can be met with accepting signs from the person and that is the most gratifying experience I have ever had professionally.
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Alex, this is a brilliant articulation of the hot button that, though grounded in a purely psychological framework, is completely disregarded by psychiatrists and most MH professionals. In fact, disregarding this fundamental cause of so much of the damage done to vulnerable people via forced psych treatment and drugging, also holds a key to the resistance to meaningful, realistic reforms or eradication of these barbaric practices.. It is predicated on the unspoken premise that the *MH clinician* is outside of, external to , and witness only, to the pathological state of another person.
Never recognizing negative feedback to the threatening vibes they (clinicians) exude; never owning their own personal judgement of the *patient* as central to the disintegrating phenomenon that supports their choosing to control rather than support a *patient*– .
This, BTW is the same narcissistic demeanor of surgeons who refused to consider their *dirty* hands could be causing fatal post op infections– despite compelling evidence for aseptic technique as the first line prevention of post op infections.
This is my major criticism of any psych study– as well., come to think of it– the variables are always unlimited, and impossible to standardize. The instrument that measures, observes and records data cannot be calibrated. And one cannot discount the myriad ways the data collector corrupts the results with his/her mere presence. Just human nature– universal and unchanging. And the very last thing considered– even by the so-called experts on psychological pathology.
But, the mere mention of it—
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Exactly spot on what I see, too, Katie. This is why I say that the stigma is actually what is causing all the messiness, here, because it is inherent. I don’t see stigma as being altogether eradicated any time soon, but for sure, we can all own that we perceive through filters, that is human. And when we find ourselves judging, best to own it rather to be in denial of it, otherwise the universe will humble us, one way or another, and that can smite a bit. I think it’s a matter of self-awareness and owning our energy graciously.
“Never recognizing negative feedback to the threatening vibes they (clinicians) exude; never owning their own personal judgement of the *patient* as central to the disintegrating phenomenon that supports their choosing to control rather than support a *patient*– .”
The way I was trained by energy healers, we are taught that when there is something violent outside ourselves, that means there is something violent inside ourselves, for us to address within our own self-introspection. That is basic energy consciousness and simple self-responsibility. Boundaries for safety and peace of mind are totally reasonable and healthy, of course, but still, I firmly believe that what is inside of us is created outside of us. When we actually take this in and get it, that shifts the power in these clinical relationships.
When a client becomes angry with me, which is perfectly allowed as long as we can still dialogue about it without power struggling and draining all energy, I know right away that they are responding to my energy, even though I may feel as though I’m being completely clear and reasonable.
But clients come to me with issues, and I know I’m going to trigger than at one point or another, maybe right away. When that happens, that is MY opportunity for healing, as well as theirs if they choose to own their anger. But what is entirely in my control is ME, not them. Were I to make it all about them, I’d be scapegoating them and not taking any responsibility for myself.
That is reinforcing trauma by overburdening a client with my issues. For most people, that’s simply a repeat of childhood family dysfunction. As a result, we grow up with a lot of confusion about to whom we are actually most responsible, when, in reality, I think it should be to ourselves. I don’t expect a client to behave in a way that keeps me comfortable, what on earth would be the point of that? There’s no healing or change without rocking the boat a bit. Healers need to know how to be present, grounded, and mindful in chaos, that’s called for in healing. It’s a practice, we’re all human. But a healing space is sacred, there is a contract here.
This perspective works well for me because I think it is most respectful to any and all clients, while keeping my own boundaries clear; and it also brings me better and better experiences, because I’m healing and growing as I go along, taking full responsibility for what I’m feeling, and not making the client responsible for my comfort level.
Although I do practice boundaries and am extremely respectful of others in this regard, which I feel is a healthy model of self-compassion.
This was the biggest difference between the psychology world and the energy healing world, and how to work with clients. I preferred learning about how my energy influences my own experience, while others have their own experience. This gives a client permission to grow through their process, and not some medicated version of it. That’s my preference and opinion, in any event.
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Margie, I’d have to know their side of the story, too, to form an opinion about what you say. Often, the two stories conflict quite a it, and the client was not really quite as out of it as has been described by staff.
And in fact, there is something to which they are responding in the moment, which feels very unsafe, threatening, and oppressively dehumanizing, and which is not a delusion, as Katie implies.
It’s impossible to tell simply from your testimonial. I’d have to actually witness the scene. I have, many times, and it is the staff version which is highly distorted. Just to be fair to the client, ya know?
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typo–‘conflict quite a bit’ (not ‘it’).
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Hi, madmom,
There is lots to be optimistic about but my background as a parent of a young adult experiencing psychosis, is that these recovery programs, while appearing cutting edge, often greatly miss the mark, to which my son’s presence in one such program attests. Two years of daily attendance at an early intervention program did not do a lot to lift him out of his troubles (but it did keep him occupied during the day, which greatly eased his parents’ minds). He gained a lot of weight from the drugs which were a core component of treatment. I agree with Dr. Steingard when she writes that the conceptualization of schizophrenia as a medical condition is at the core of these programs, and that may be a big reason why people don’t really recover. I suspect that Open Dialogue is the way to go, but obviously, replicating OD in a public health system like in the US or Canada, has it challenges. My solution was to wrest the care of my son away from the professionals as much as possible, ditch the idea that schizophrenia was a medical condition, and explore some really intriguing alternative healing modalities. We can all do our own Open Dialogues or our own Soterias if we have an inner dialogue with ourselves and reach out to our relatives with love and a sense of discovery. I consider that the time he spent in a fancy recovery program actually delayed his recovery.
Do not get discouraged. Real healing lies outside of a most of these early intervention programs. And, it’s wonderful to see it when it happens.
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This sounds so similar to what we are doing. I would love to hear more details – is there any way I could contact you in a non public way?
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Hi, sa,
You can either ‘friend’ me on Facebook or send me a message through my blog. I’m sure we have lots of common ground.
http://rossaforbes.com/about-this-blog/
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Thank you so much both for this article and your previous article on “Slow Psychiatry’.
As our family believes that the course of our loved one’s illness was made much, much worse by the introduction of psych meds, I feel a small kernel of hope when when I hear psychiatrists such as yourself point out that there are big ‘assumptions’ that underlie what is considered by other psychiatrists to be ‘best practice’ for the treatment of psychosis.
I am particularly grateful for the following comments:
“In RAISE, antipsychotic drugs are considered essential and the recommendation is that they are started early and continued indefinitely, albeit at the lower doses than are typically used. I have written elsewhere why I think this is problematic.”
“In the U.S., there is currently much attention given to reform of the mental health care system. One area of focus has to do with early intervention with young people who are experiencing psychosis. RAISE is held up as a model. The outcomes from this study are not good enough to support the notion that we have all of the answers.”
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One more point to make about this study. It was ironic when Sandra noted that some of the RAISE psychiatrists consider research on short-term or non-use of neuroleptics as unethical and malpractice.
The irony is that a strong case could be made to bring lawsuits against the RAISE psychiatrists for medical malpractice for two related reasons:
1) The RAISE psychiatrists misrepresented to clients that they have a brain disease, “schizophrenia”, that has never been validated by biomarkers. The researchers could have represented to clients that psychosis is a syndrome of unknown etiology, strongly correlated to trauma and interpersonal stress, and possibly but not definitely related to biological or genetic factors. But they lacked the integrity to do this and therefore lied to their clients about their definitely having a life long illness. In other medical fields – which psychiatry of course is not – such mirepresentations could and have resulted in lawsuits.
2) The RAISE psychiatrists misrepresented to clients that indefinite neuroleptic drug use was necessary and beneficial over the long term. There are no long-term studies showing clear benefits of antipsychotics vs no antipsychotics; thus this uncertainty should have been communicated. Moreover, there are a number of studies, including the 5-6 I noted above, which shows that many formerly psychotic people do stop using drugs eventually and maintain their recovery, or even recover without ever using drugs. This broad spectrum of information should have been presented to clients to give them a full picture and a choice. The fact that the psychiatrists of RAISE did not do this is unethical and exposes the RAISE initiative as biased, corrupt, and lacking in integrity.
I hope that lawsuits brought by participants in the study will eventually come against the psychiatrists who ran it, because without consequences, Big Pharma and its minions will not learn to honestly represent to clients what is known and more importantly what is NOT known about psychosis and neuroleptics.
I hesitate a little to say these things because Sandra is a good person and had her reasons for participating in this study. But a good person can be part of a biased, corrupt, unethical initiative.
Of course, the invectives above are really directed at John Kane and the other front line authors of the paper. I hope that Sandra will have success in moving her clinic in the direction of an Open Dialogue approach and I would look forward very much to reading about any results from that sort of initiative.
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Thanks for raising this red flag, @bpd. TMAP
” It was ironic when Sandra noted that some of the RAISE psychiatrists consider research on short-term or non-use of neuroleptics as unethical and malpractice.”…
It is also bizarre that the sacred, carved in stone treatment guidelines, a mad marketing campaign that went viral, is kept in the closet along with Allen Frances’, whose unethical conduct is never RAISED.
Move along– no psychopathology to see here…..
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Here’s another example of long-term psychotherapy leading to sustained improvement in psychotic clients who came off medication completely:
http://www.transpersonalstudies.org/ImagesRepository/ijts/Downloads/IJTS_33-1-07_pp_57-76_Mehl-Madrona_et_al_2014_Results_of_a_Transpersonal_Narrative_and_Phenomenological_Psychotherapy_for_Psychosis.pdf
About 38 of these 51 initially (but no longer) psychotic clients eventually stopped medication completely, and their results measured on the PNSS, BPRS, and associated scales are probably better than the average of the RAISE clients. Most of them functioned fine off
This article also mentions earlier Finnish work by Alanen, Aaltonen, and others, covering several other studies in which a large proportion of psychotic clients came off or never used neuroleptics.
Another study of 50 schizophrenic clients treated in long-term psychotherapy is in the book Psychotherapy of Schizophrenia by Benedetti. In this series, 40 clients started on medication, but by the end of 5 years only about 20 remained on neuroleptics, and most of these were doing quite well. Then there’s Soteria, and the other studies I linked above like the WHO, Gottdiener, and so on, collectively including many hundreds of people who have recovered from psychotic experience without or after coming off drugs.
This all points again to the fact that what the RAISE psychiatrists are doing in representing to clients that they have an illness requiring lifelong medication is nothing short of self-serving deception. You can’t mince words with these fraudsters.
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Thank you for this analysis and your call for both humility and more research. As someone who is familiar with RAISE and with OnTrack NY and as a mother of an adult son who came through what could be considered a psychotic episode about 16 months ago using an Open Dialogue informed approach, I can attest to the fact that these two models are quite different. Open Dialogue does not presume to know what we do not. I am concerned that the acceptance of the medical model by most first episode initiatives is driven by politics and industry sponsored science and will limit what is possible. I am thankful that my son had the opportunity to be treated by a psychiatrist trained in Open Dialogue and that he was able to move through his experience with very minimal and temporary use of medications, in his case just to help him re-establish his sleep cycle. Sandy, as always, thank you for your clear analysis and courage.
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Dr. Steingard,
Thank you for your insightful post. I had been wondering about the background on the RAISE project and your post here is very informative. I guess, to no surprise, there is nothing new here. Same-old-same-old with a fancy new brand name. I can’t believe in 2015, the vanguard of science is “talk therapy”.
Also, as there has been so much talk about Open Dialogue here on MIA, personally, I’m not so optimistic about the results of that program either. Having visited Finland twice in the past two years, I can assure MIA readers that the Open Dialogue program has has zero impact there. The Finnish system is just as conservative as anywhere else, if not moreso. Open Dialogue is restricted to one hospital north of the Arctic Circle, and, ironically, they are not very “Open” about how their program is doing. A contact of mine recently requested to visit this hospital to do a documentary there, and was declined.
In my opinion, real change will not arrive until one man’s work is given much more noteriety, and that man is Dr. Stanislav Grof. Once Grof’s work is accepted, the very concept of “mental illness” will disappear.
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Hi Sean,
I’ve heard of Dr. Stanislav Grofs
work being very sucessful – and I’ve wondered about Open Dialogue, but obviously it works.
I can definitely identify though, with UK psychologist Rufus Mays approaches:
http://www.rufusmay.com/
I’ve also known people in 12 Step Fellowship who have been madder than anyone I’ve ever known in psychiatry that have gotten completely well (I’m telling the truth).
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Thanks Fiachra,
I’ve never heard of the 12 Step Fellowship, so I’ll look into that. Don’t get me wrong, I think Open Dialogue and Rufus May are taking steps in the right direction. Grof’s work, however, is so far ahead of anything else out there. To give an analogy from physics, if Freud is the Isaac Newton of psychology, then Grof is its Einstein.
Thanks!
Sean
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“Grof’s work, however, is so far ahead of anything else out there.”
This is an interesting statement to me, Sean. I went to CIIS and Grof was certainly considered a ‘guru’ by a lot of people. Yet, no one was able to apply his work in a grounded and practical way. I understand your work is to do just that, which makes me interested to know more.
In addition, I was able to heal fully from a long period of disabling mental illness, taking a spiritual and energetic perspective, by combining a variety of schools of thought and applying these specifically to my personal issues, as related to the universality of our being-ness, a network of energies converging into my own internal emotional guidance toward personal internal shifts which ended up changing my outer reality into something copacetic to who I am. That was the healing, to become in synch with my reality and environment, in a way that is real and authentic to me, no compromise of fitting into a ‘box.’ I simply gave myself permission ‘to be’ as I naturally am. That’s inner guidance and self-respect.
What I discovered was that my ‘mental illness’ was the result of being in the ‘wrong’ community, at least for me it was not copacetic–that is, a community which did not speak to my soul, but instead, which resisted it. That drives people to insanity, until they realize through awakening that it is not them who are crazy, but the world around them is making them feel that way. It is a crazy-making world we live in.
Shift that reality with consciousness, and you’re in a different game, one where the playing field is level, because it is based on conscious choice, and not victimization.
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Hi Sandy-thanks so much for the post. I have not yet read the article, but I did read the material in the New York Times. What caught my interest was that they claimed early treatment makes a difference implying that early treatment could impact the course of the phenomenon. Your post suggests was what they found was that only early on in the course of the phenomena (I won’t use the term disease) does psychological intervention make a difference. This is a very different conclusion. Again, we spin.
I hope you’re going to present at the annual American Psychiatric Association again. With regard to defining the problem according to the view of the individual, there is a whole literature on therapeutic alliance. For major depression and substance abuse (see Project Match), outcomes are better when therapist and client agree on the definition of the problem and the strategy for resolving the problem.
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Hi Jill,
I am not sure what difference you are seeing there. People were included into the study if they met criteria fo schizophreniform disorder, schizophrenia, or schizoaffective disorder. This was not a prevention study. When they looked at outcomes among those who had symptoms for less than 74 weeks and more than 74 weeks, they found that NAVIGATE had a much greater separation from TAU in those who had symptopms for less than 74 weeks.
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Sandy-I’m sure you’ve heard the claim that early treatment is better because we can change the long term trajectory. In the discussions on NPR the claim was once again resurrected as a conclusion from this study. To make such a claim, one would have to randomly assign first episodes to immediate treatment or delayed treatment and then follow out 8 years to see if the groups differed on number of episode, severity of episode, etc. What apparently the study did find was that those who had only been symptomatic for a short period of time, exhibited a better response. This generate two competing hypotheses for me: (1) once you start drugging people (you indicated that many had been drugged prior to study entry), nothing will help very much; or (2) the psychotic phenomenon will proceed along some ineluctable path such that people become refractory to treatment. What did I miss?
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I agree with you about the way a study would need to be set up but I do not agree with your hypotheses. We do not know what it means for someone to be out there for more than 74 weeks with psychosis before encountering the mental health care system. This was not a randomized group. For some reason, this group benefitted less form the NAVIGATER intervention than those who had symptoms for less than 74 weeks.
There are other studies that suggest early intervention helps but one always needs to be aware that the earlier one intervenes, the more likely one is to find people who would have gotten well with no intervention. I address this duration of untreated psychosis issue here:
https://www.madinamerica.com/2013/04/optimla-use-of-neuroleptics-part-3-duration-of-untreated-psychosis/
This study does not tell us if the elements of Navigate independent of the drugs were helpful since that was not tested.
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You often wonder what others make of your profession? Don’t wonder anymore. Here’s what I think: You are Orwell’s thought police. Psychiatric diagnoses are based on the subjective interpretation of behavior by third parties and are in reality a load of crap. The schizophrenia diagnosis gets put on anyone who is not “normal” enough. It’s entirely subjective and can be abused to violate people’s rights. It is often “used as a weapon by physicians or the legal or political system against individuals who are different, sound strange, or are nonconforming.”
Losing Your Rights: Complications of Misdiagnosis by Richard G. Rappaport, MD in J Am Acad Psychiatry Law 34:4:436-438 (December 2006).
J Ment Health. 2010 Aug;19(4):337-51. doi: 10.3109/09638237.2010.492418.
Misdiagnosing normality: Psychiatry’s failure to address the problem of false positive diagnoses of mental disorder in a changing professional environment.
Allen Frances said that “psychiatric diagnosis still relies exclusively on fallible subjective judgments rather than objective biological tests”
The New Crisis in Confidence in Psychiatric Diagnosis”. Annals of Internal Medicine.
Here’s a recent case of a man misdiagnosed by psychiatrist after psychiatrist for 20 YEARS.
Misdiagnosed Man Sues After 20 Years in a Psych Hospital
Why did John Maxwell Montin spend 20 years in psychiatric hospital?
Posted Jul 21, 2014
https://www.psychologytoday.com/blog/media-spotlight/201407/misdiagnosed-man-sues-after-20-years-in-psych-hospital
At best it’s all a big scam. Shrinks misdiagnose someone has having a severe schizo-whatever disorder by exaggerating symptoms then lie and say they have helped the patient return to health after giving bogus ‘treatment’.
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Radames,
This is essentially correct – on one level, the RAISE study is scientific nonsense because there is no validity and little reliability behind the schizophrenia label. Writers like Mary Boyle, Richard Bentall, Jeffrey Poland, and Thomas Szasz have brutally exposed the lack of any scientific basis for the psychotic labels such as those used in RAISE. It’s so arbitrary.
The most that can be learned from these type of studies are general trends about what helps or harms troubled people. This study appears to show that more therapy and perhaps less medication are helpful. It’s amusing because these things are so obvious to people who read up on mental health. More human help and less drugging will help people with almost any label. The RAISE study isn’t needed to tell us that, and doesn’t reveal anything new or insightful about “schizophrenia”, whatever that is.
Another day, another diatribe against psychiatric diagnosing.
I recommend anyone considering wasting more time on research like RAISE to instead read qualitative works by Paris Williams, Ira Steinman, Pamela Fuller, Murray Jackson, and others who report long case studies of people recovering from psychosis in their own words. Find them at http://www.isps.org or by searching for ISPS authors on Amazon. So much more can be learned from these qualitative person-centered approaches than from the pure unadulerated pseudo-science that is American psychiatric research. It are so much more human and hopeful.
In 10 years psychiatrists will still be searching for the biomarkers of supposed schizophrenia and will be no closer to finding any clear genetic or biological cause for “the illness”. I have $100 bucks to bet against anyone who wants to lose money betting that NIMH/psychiatry will succeed in validating schizophrenia as an illness. Contact me at bpdtransformation (at) gmail (dot) com and we can see how the NIMH is doing in 2026. Or I’ll extend it out to 2036, 2056, or 2075. Ain’t gonna happen.
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“The schizophrenia diagnosis gets put on anyone who is not “normal” enough. It’s entirely subjective and can be abused to violate people’s rights. It is often “used as a weapon by physicians or the legal or political system against individuals who are different, sound strange, or are nonconforming.”
I agree with this statement entirely.
And furthermore, I’d say that those who are deemed ‘different’ in this way are perhaps in some manner, through their own process, guiding society at large to change, and pretty radically, from what it seems. Status quo would naturally resist, because it calls for a new belief system.
I’ve known a lot of people who have had all sorts of diagnoses and have lived really frustrated and feeling stuck because of these labels and all that goes with them. Whereas I’ve found some of the most brilliant minds and kind, empathic hearts among this group–and not only that, also quite tuned in and awake.
The suffering inevitably comes from the stigma attached to these labels, and the maltreatment people receive as a result, medically and socially. Trauma, purely, and it internalizes until addressed in healing. So much mountainous frustration happens here, makes one’s head spin and heart sink into utter despair.
Were it not for this, and we were to accept people and their process for whom and what they are while taking responsibility for our own experience of that, without generalizing it outwardly projected onto others as a ‘malady’ or ‘disorder’ of some kind, then I believe that not only would suffering be greatly reduced, but also, we’d evolve into a much more tolerant, diverse, and truly multi-dimensional society.
Those we marginalize bring a lot of sorely needed gifts to society, without a doubt. It is a vital perspective to know and be heard. Deep understanding, I think.
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For the record, here is a powerful response to the RAISE psychiatrists who insist that neuroleptic drug use should never be stopped in people labeled schizophrenic:
http://psychrights.org/Research/Digest/Effective/MIrwinSxReversalNoDrugs.pdf
As this collection of studies shows, almost all available long-term studies of schizophrenia outcome contain a large subgroup of formerly psychotic people who function well off-medications. More insidiously, the clear trend in the large majority of these studies is that people not taking neuroleptics are doing better than those still on the drugs. For the RAISE psychiatrists to deny evidence of this breadth is medical malpractice, and to not present their clients the full picture of the risks associated with neuroleptics is the reason why I feel that lawsuits against John Kane et al should be seriously considered.
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