The Recovery After an Initial Schizophrenia Episode (RAISE) Study: Notes from the Trenches

Sandra Steingard, MD
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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:

  1. What is RAISE? How was it funded? What was the experimental design? What was its stated goal?
  2. What are the assumptions and hypotheses that drove this study?
  3. What results have and have not yet been released in published reports?
  4. What does RAISE teach us about science, spin, and politics?
  5. 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.

* * * * *

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43 COMMENTS

  1. 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.

  2. 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.

  3. 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.

    • 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.

      • 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.

    • 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.

  4. 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.”

  5. 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.

    • 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…..

    • 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.

  6. 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.

  7. 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.

  8. 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).

    • 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

      • “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.

  9. 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.

  10. 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?

  11. 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’.

    • 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.

    • “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.

  12. 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.