Tag: Schizophrenia

The wait has been exhausting, but it is possible that a flicker of light may finally shine on the dark recent history of psychiatric research at the University of Minnesota. Given these upcoming investigations of psychiatric research at the University of Minnesota, the time is right to look back at some of the disturbing, unanswered questions that have emerged over the past several years.

As we struggle to invent a humane approach to the extreme states that get called “psychosis” or “madness” or “schizophrenia,” it may be helpful to investigate some of the better approaches developed in the past. While these approaches are not without their flaws, they are often surprisingly insightful. (It can also of course be depressing to notice how truths once more widely known were so easily “forgotten” as compassionate approaches got ditched in favor of the latest coercive innovations.)

We live in a culture bombarded by media and sped up by rapid-fire social interactions. It's definitely useful to grab hold of a simple, short, sound-bite term, to quickly describe what we are feeling or suffering. "Depression" is such a word - it evokes and encapsulates, conjures the images of that ugly pit of despair that can drive so many to madness and suicide. Yet at the same time the words we use, strangely, become like those pens deposited in medical offices and waiting rooms around the world: ready at hand, easily found, familiar -- and tied to associations, marketing and meanings we were only dimly aware were shaping how we think.

In many respects it is difficult to fault the report Understanding Psychosis and Schizophrenia, recently published by the British Psychological Society (BPS) and the Division of Clinical Psychology (DCP)[i]; indeed, as recent posts on Mad in America have observed, there is much to admire in it. Whilst not overtly attacking biomedical interpretations of psychosis, it rightly draws attention to the limitations and problems of this model, and points instead to the importance of contexts of adversity, oppression and abuse in understanding psychosis. But the report makes only scant, fleeting references to the role of cultural differences and the complex relationships that are apparent between such differences and individual experiences of psychosis.

With a diagnosis of schizophrenia, if internalized, comes the erosion of personhood, lowered self-esteem, shattered dreams, and a sense of disenchantment. The psychiatrist Richard Warner has even suggested that those who reject the diagnosis of severe mental illness may have better outcomes as they retain the right to construct their own narrative of personhood and define what really matters for them. Despite public education campaigns (or perhaps because of them), the stigma of mental illness is as enduring as it was 50 years ago.

If human beings were meant to be entirely stable entities, then “stabilizing” them would be an entirely good thing; a target for mental health treatment that all could agree on. But it’s way more complex than that: healthy humans are constantly moving and changing. They have a complex mix of stability and instability that is hard to pin down. All this relates to one of my favorite subjects, the intersection of creativity and madness.

As we develop critical awareness about the mental health “treatments” that don’t work and that often make things much worse, the question inevitably comes up, what can those who want to be helpful be doing instead?

Professor Leigh Turner of the University of Minnesota Center for Bioethics blasts the Board of Regents for ignoring psychiatric research abuse.

I received the following question from a reader regarding the controversial CAFÉ – Comparisons of Atypicals in First Episode of Psychosis - study. (This was the study in which Dan Markingson committed suicide.) "It appears that there was no head-to-head with a control group taking a placebo pill. Nor was there a control group featuring 'old' types of 'antipsychotic'. If that was the case then it is very poor study . . . what on earth can you hope to show from the data?" I started to write a response, but the subject is complex, and my response became the following article.

Responding to a letter signed by 175 scholars asking for an inquiry into the death of Dan Markingson at the University of Minnesota, the Faculty Senate voted to investigate clinical research at the university. But the university president says the Markingson case will not be part of the investigation. What is he trying to hide?

For a scathing, 11-minute overview of the death of Dan Markingson at the University of Minnesota, and new allegations of coercion into psychiatric clinical trials, you can't do much better than this excellent investigative report by Jeff Baillon.

The core of Acceptance and Commitment Therapy, or ACT, is the idea of simply accepting, rather than trying to get rid of, disturbing or unwanted inner experiences like anxiety or voices, and then refocusing on a commitment to take action toward personally chosen values regardless of whether that seems to make the unwanted experiences increase or decrease. This idea is consistent with the emphasis in the recovery movement of finding a way to live a valued life despite any ongoing problems, but ACT has value because of the unique and effective strategies it offers to help people make this shift.

What would happen if professionals opened their minds about the nature of madness?  What new possibilities might be created if they questioned labels such...

Of all the beliefs that I have had about my experiences, the belief that I was ‘schizophrenic’ was the most damaging. In adopting the story that others told about me, and abandoning my own sense-making process, I held on to a belief that both hid my traumatic life experiences and rendered them irrelevant. Does it matter if we sometimes slip into the language of illness when we all agree that these experiences are meaningful, personal and have value? Yes. It does.

While a 2-year outcome study by Wunderink, et al. has been cited as evidence that guided discontinuation of antipsychotics for people whose psychosis has remitted results in twice as much “relapse,” a not-yet-published followup of that study, extending it to 7 years using a naturalistic followup, finds that the guided discontinuation group had twice the recovery rates, and no greater overall relapse rate (with a trend toward the medication group having more relapse.)

At the University of Minnesota, the answer is apparently $1,446. If harmless clerical errors were to blame for oddities like this, that fact should be easy to clarify simply by looking at the relevant documents.  But if there are systematic issues with the administration of clinical trials that makes it possible to bill for a visit with a dead subject, those issues would be important for other universities and private trial sites as well. 

The label of schizophrenia has a chilling ring. It carries with it the suggestion of a wrecked and wretched life. It is also a diagnosis that is notoriously difficult to shed. For this reason, the diagnosis of schizophrenia should not be applied lightly and not without a thorough understanding of the patient’s family and wider circumstances.

In the business of clinical trials, the most valuable commodities are the research subjects. Filling clinical trials is hard, and filling them quickly is even harder. That’s why in 2000 a clinical investigator told the HHS Office of the Inspector General that research sponsors were looking for three things from research sites: “No. 1—rapid enrollment. No. 2 — rapid enrollment. No. 3 — rapid enrollment.”

In early 2009, antipsychotic fraud was making headlines.  Eli Lilly had announced in January that it would plead guilty to charges that it had...

The vast disconnect between prognosis (as predicted by mental health providers) and actual outcome (as reported by psychiatric survivors) forces us to ask the question: Why send messages of hopelessness when they are so often untrue?

The recent research scandals out of the University of Minnesota’s Department of Psychiatry may be alarming, but they are not new. Back in the 1990s, when the university was working its way towards a crippling probation by the National Institutes of Health (for yet another episode of misconduct (this time in the Department of Surgery), the Department of Psychiatry hosted two spectacular cases of research wrongdoing, both of which resulted in faculty members being disqualified from conducting research by the FDA.

The suicide of Dan Markingson at the University of Minnesota has brought notoriety to the CAFÉ study and its site investigators, Stephen Olson and Charles Schulz. But the “corrective action” recently issued by the Minnesota Board of Social Work against the CAFÉ study coordinator, Jean Kenney, has raised another disturbing question.

Ever since critics began asking questions about the death of Dan Markinson in a clinical trial at the University of Minnesota, the General Counsel for the university, Mark Rotenberg, has responded with a uniform message: the case has already been investigated many times, and no wrongdoing has ever been found. That's how Rotenberg responded to my article about the case in Mother Jones, and that's how he responded last week to the news that the Board of Social Work had issued a “corrective action” to the study coordinator for the clinical trial in which Markingson died.

The suicide of Dan Markingson at the University of Minnesota has brought notoriety to the CAFÉ study and its site investigators, Stephen Olson and Charles Schulz. But the “corrective action” recently issued by the Minnesota Board of Social Work against the CAFÉ study coordinator, Jean Kenney, has raised another disturbing question.

In the "agreement for corrective action" against CAFE study coordinator Jean Kenney last week, the Board of Social Work cited Kenney's failure to respond to "alarming voicemail messages" from family members of Dan Markingson. Presumably, the Board is referring to a message left by his mother, Mary Weiss, which warned, "Do we have to wait until he kills himself or someone else before anyone else does anything?" The failure of Kenney and Stephen Olson to take the warnings of Mary Weiss seriously has been one of the most disturbing aspects of this case. In a deposition for the lawsuit filed by Weiss, Kenney was questioned about her response. Here is an excerpt. (The initial questions come from Gale Pearson, an attorney for Mary Weiss.)