RAISE-ing Some Questions

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All the media hubbub surrounding the recent publication of the RAISE study has been somewhat confusing. A sampler of headlines includes; Game Changer? (HuffPo); New Approach Advised to Treat Schizophrenia (New York Times); New York Times Issues Correction on RAISE Study Report; Landmark Study Recommends More Therapy, etc…

What is one to make of all the fanfare and conflicting commentary? One of the central conclusions from the study is that providing personalized medication management, family education, recovery-oriented talk therapy and supported employment and education produced modestly better outcomes than treatment as usual (TAU) in a two-year period. This is not exactly a hold the phone!, stop the presses! kind of revelation. The deflated response from many providers in psychiatric rehabilitation and Recovery model programs has been; “now we know what we already knew.” Connecting with people experiencing psychosis, helping them to find hope and meaningful roles at work, school, and the community is what we’ve been doing for the past 25 years. It’s nice to be validated and to have research dollars focused on non-medical interventions. The Recovery model has long recognized that symptom-reduction and meds alone seldom result in recovery.

The breathless announcements may also provide a sad perspective on the abysmally low bar for treatment-as-usual (TAU) of psychosis in the U.S. It is disgraceful that the predominant treatment for too many people in extreme distress remains meds only. Perhaps the RAISE findings can be seen as an encouraging step away from the entrenched medical model that reduces so much human suffering into diseases that can be successfully medicated away.

If the RAISE study can begin to alleviate some of the pervasive hopelessness and helplessness regarding this “death sentence” of a psychiatric diagnosis, it will be worthwhile. I’m referring to the hopelessness and helplessness among the youth being diagnosed; among their families and the professional staff hired to help them; and amongst the general public. Recently there has been high levels of fear added to this pernicious stigma, due to the exploitive linkage of mass killings and “untreated mental illness.” When you come to the understanding that psychosis is solely a chronic, relapsing brain disease requiring life-long medications with many adverse side-effects – it is tough to remain optimistic. One can speculate that the high drop-out rates encountered in the RAISE study could be partly due to this approach. Informing youth that they have a chronic brain disease is probably not a winning engagement strategy.

There are several studies that raise significant questions about the RAISE emphasis on youth taking neuroleptic medications indefinitely and consenting to long acting injectables (LAI’s). Studies on the long-term outcomes of people who remain on neuroleptics are exceedingly poor. When Martin Harrow conducted a long-term, naturalistic study (2013) of a group of people who remained on anti-psychotics, he found striking contrasts between the group who continued taking them (5% functional recovery) versus those who discontinued or substantially reduced them (40% functional recovery). In a randomized control trial (RCT), Wunderink (2013) reported a 40.4% recovery rate among med discontinuers vs. 17.6% of those who remained on them after seven years. According to a study by Bola (2003), 40% of people diagnosed with psychosis can be successfully treated without the use of anti-psychotics.

The hope of early intervention efforts is to alter the all-too-common trajectory of youth diagnosed with psychosis from entering a life-time of disability and poverty. There appears to be substantial evidence that indicates that the use of neuroleptics may actually hamper recovery in the long term. (When a participating psychiatrist in the RAISE study (Sandra Steingard) asked “when is a good time to try stopping the meds?” the stark answer she reports was “NEVER.”) Based on the available evidence, shouldn’t there be explicit, planned “exit ramps”? Careful tapers off the neuroleptics to evaluate whether they are still needed and helpful? (Abrupt cessation may induce an intense “psychosis rebound”) For instance, the Early Assessment and Support Alliance (EASA) approach to psychosis  in Oregon recommends an automatic med discontinuation/re-assessment in young people living in one year.

Before the RAISE model becomes firmly enshrined as the best practice for early intervention psychosis in the U.S. (NIMH reports already taking steps to implement RAISE elements) a deeper, longer-term analysis seems in order. The RAISE study will continue for an additional three years, and this would be a crucial variable to investigate further in the coming years. Slowing the rush to premature adoption appears warranted. Researching and reporting on other promising practices, such as EASA and Open Dialogue, should also be supported.

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References:

  1. Bola, J., Lehtinen, K., Cullberg, J., & Ciompi, L. (n.d.). Psychosocial treatment, antipsychotic postponement, and low‐dose medication strategies in first‐episode psychosis: A review of the literature. Psychosis, Feb 2009; 1(1) 4-18.
  2. Bola, J., & Mosher, L. (n.d.). Treatment of Acute Psychosis Without Neuroleptics: Two-Year Outcomes From the Soteria Project. The Journal of Nervous and Mental Disease, 191(4) 219-229.
  3. Harrow, M., & Jobe, T. (2013). Does Long-Term Treatment of Schizophrenia With Antipsychotic Medications Facilitate Recovery? Schizophrenia Bulletin, 962-965.
  4. The Recovery After an Initial Schizophrenia Episode (RAISE) Study: Notes from the Trenches. MadinAmerica.com, Nov 4 2015; Retrieved November 9, 2015.
  5. Wunderink, L., Nieboer, R., Wiersma, D., Sytema, S., & Nienhuis, F. Recovery In Remitted First-Episode Psychosis At 7 Years Of Follow-Up Of An Early Dose Reduction/discontinuation Or Maintenance Treatment Strategy. JAMA Psychiatry. Sep 2013; 70(9) 913-20
  6. Wunderink, L., & Sytema, S. Early Medication Discontinuation on Long-term Recovery Outcome in First-Episode Psychosis—Reply. JAMA Psychiatry, Feb 2014; 71(2) 208-9

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22 COMMENTS

  1. Open Dialogue worked well for my son. 16 months later he is in college, in therapy, took minimal meds for a few days during the crisis for sleep and is now doing well. Dialogue works! My hope is that there will be funding for research on Open Dialogue and Need Adapted Treatment. Open Dialogue does not support the interests of the profit driven, medical model approach for early episode mental health services. Thus, industry money will not be supporting research on these approaches. But, they work.

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    • Hi Truth in Psychiatry,

      You say your son was helped by Open Dialogue — which doesn’t surprise me, by the way. What does surprise me is the apparent lack of interest in it on the part of people and agencies that you would think are in favor of more effective, and cost-effective, treatment. Or maybe they just haven’t heard of it. Anyway, I’d love to know where you found this treatment, if you don’t mind telling. I know there’s the Parachute project in NYC, and a couple of programs in California, and at least one practitioner in Michigan and — where else? If you’d rather, write me privately at marysc11 “at” yahoo.com.

      Best regards,
      Mary Newton

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    • ” Informing youth that they have a chronic brain disease is probably not a winning engagement strategy.”

      So true, such behavior is quite disempowering, thus shameful.

      And it should be noted that the neuroleptics themselves can cause both the negative and positive symptoms of “schizophrenia,”including psychosis. The negative symptoms can be created by neuroleptic induced deficit disorder and the positive symptoms, including psychosis, can be created by neuroleptic or poly pharmacy induced anticholinergic toxidrome. In fact, today’s “gold standard” treatment recommendations for “bipolar” are a recipe for how to create anticholinergic intoxication syndrome, which may be why we’re seeing such bad outcomes for those stigmatized as “bipolar” today.

      And from personal experience I’d like to add, that even when slowly weaned off the neuroleptics over a couple years, one can still suffer from a drug withdrawal induced super sensitivity manic psychosis.

      Since the neuroleptics can result in psychosis, both as an adverse side effect, and as a withdrawal symptom, it’s possible their use at all is unwise.

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  2. ” Informing youth that they have a chronic brain disease is probably not a winning engagement strategy.”

    Exactly. It cannot be underestimated how much damage this lie does to young people’s sense of hope and self-esteem.

    It is pathetic to see American psychiatrists used by Big Pharma (which funds the NIMH, funders of the RAISE study) again and again as little Trojan horses for the same tired, destructive misrepresentations about psychosis being a disease for which one has to take neuroleptics for life. One has to wonder if RAISE psychiatrists are just ignorant, or if they are willfully misrepresenting what is known and not known about psychotic diagnoses and neuroleptic drugs to their clients.

    This is why I previously asserted that RAISE participants should consider lawsuits against the psychiatrists leading the study. Given the range of data indicating that many once-psychotic people successfully come off neuroleptics and perhaps do better without, it is absolutely unethical to represent to young people that they have an illness requiring indefinite use of drugs. The representation should have been one of much less certainty: that psychosis (so-called “schizophrenia”) is not one unitary illness and may not be lifelong, and that many once-psychotic people do use drugs for a period and then come off (or never use them period). Given this data most clients should have had an informed choice about whether or not to continue taking drugs long-term, at the very least.

    I hope the message will get out to the clients in this study about how RAISE psychiatrists misrepresented the real picture. I think that only legal repercussions will work; as long as psychiatrists can lie with impunity to people that schizophrenia is a valid brain disease and neuroleptics are a required lifelong treatment, nothing will change. There has been a trend of recent lawsuits against psychiatrists and drug makers and I hope that families of people labeled “schizophrenic” will not hesitate to take legal action against the RAISE psychiatrists such as John Kane, and against the government and Big Pharma agencies backing this work.

    People’s lives, relationships, and wellbeing are at stake and continually representing to vulnerable people that schizophrenia is a brain disease requiring indefinite drugging should no longer be allowed given the range of data we now have.

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    • Thanks for weighing in bpd – your comment; “(so-called “schizophrenia”) is not one unitary illness and may not be lifelong,” is an important one. I think there is substantial indications that what gets lumped together under the invalid label of psychosis – is actually several different etiologies and issues. Why psychiatry persists in acting as if they are unitary is beyond me. So much for personalized medications.

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      • I think you know this Wayne, but the reason for pretending that psychotic experiences are a unitary illness is that if Big Pharma companies and their psychiatrist-minions admitted that they do not actually know whether or not schizophrenia is one valid coherent condition, the consequences could be devastating to them financially. It would undermine the whole basis for neuroleptic treatment of “schizophrenia” and threaten billions of dollars in profit for companies like Eli Lilly and Janssen. It would also chip away at a large proportion of some psychiatrists’ caseloads and income; keeping clients on long-term antipsychotics is a large segment of returning clients which help psychiatrists make an average of about $181,000 a year (Payscale.com statistics).

        Drugmakers and the mini-Trojan horses who deliver their poisoned offerings, i.e. the psychiatrists, therefore have no interest in admitting that schizophrenia is a scientific sham, let alone exploring how neuroleptics may cause far much more harm than good over the long term. Ruining people’s lives and costing millions of psychotic people the chance to feel truly well, have friends, work, have families etc is just “collateral damage” for these predatory corporations and their psychiatrist lackeys. It’s just business.

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  3. The words “personalized medication management” make me dismiss this “study” as more of the same and relegate it to the “don’t pay no mind” department of my brain on it’s way to the recycle bin.

    When we accept narratives which refer to “schizophrenia,” even in quotes, as an “it,” even when arguing for alternate explanations of what “it” is, it validates the notion that there is an “it.”

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    • Right Oldhead, not sure what personalized meds means either (there has been lots of talk of low-dosage, but not reported) They’re also apparently really pushing long acting injectables and that seems pretty impersonal. What’s a young person supposed to do once it’s in ’em?

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      • Oldhead’s argument is correct: there is no illness called schizophrenia. Psychotic states are far too complex, individual, and multi-determined for there to be one illness called schizophrenia behind them. Proponents of schizophrenia are thinking in Newtonian terms in a world of brain-environment problems that is relativistic, complex and nonlinear.

        In one article I read (don’t remember the source), there was talk that antipsychotics would be “personalized” to your individual gene makeup and your particular brain chemistry. It made me laugh; another bright idea doomed to failure. I almost don’t have to read these articles about new innovations in psych drug treatments to know they are going to fail to help people.

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        • Yeah, but I have a similar problem with “psychotic.” It’s a subjective, “I know it when I see it” determination masquerading as objective and scientific. Even if we think we all know what we mean when using it, there must be a better way of referring to extreme states of thought, feeling and behavior. And of dealing with them. I’d rather have people call me psycho than psychotic incidentally. Slurs are more easily seen for what they are than “diagnoses.”

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          • Yeah I agree with this. When I use or hear the word psychotic, I understand it to mean something vague, uncertain, variable, individual, occurring along many spectrums, etc.

            If you haven’t read Lawrence Hedges and his way of conceptualizing schizophrenia / psychosis as organizing states, maybe check that out. You can find his book Relational Interventions on freepsychotherapybooks.org

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  4. Hi Wayne
    Thanks for raising the questions.

    I think there’s more to Recovery, in present day terms, than (just) halting the ‘neuroleptics’.

    ‘Psychosis’ can mean different things. But I think that a person developing ‘psychosis’ due to ‘problems’ would probably need to find some way through these problems to remain safe and well.

    Also, coming off medication even through careful taper can still result in problems, and I think its important to know how to deal with the symptoms of this ‘withdrawal syndrome’ – to avoid falling into the hands of the services again.

    My own experience of psychiatry is that psychosis or “illness” can mean anything; that neuroleptics are physically disabiling and cause longterm “mental illness”; and that it’s possible to overcome original problems and withdrawal syndrome with non non drug help.

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    • Thanks for your comments Fiachra – I do think there’s a growing recognition of the importance of employment & education support which I think is key to recovery. Working on some way for the young person to access the life they wanted, and escape the MH system and disabled identity.
      As you say, help in finding a way through problems (and believing that’s possible) is crucial as well.

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  5. I wanted to post this here too… 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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