Inside the Battle to Define Mental Illness.

From Wired: Inside the Battle to Define Mental Illness.

See also: “Saving Normal” by Allen Frances , Anatomy of an Epidemic by Robert Whitaker

Every so often Al Frances says something that seems to surprise even him. Just now, for instance, in the predawn darkness of his comfortable, rambling home in Carmel, California, he has broken off his exercise routine to declare that “there is no definition of a mental disorder. It’s bullshit. I mean, you just can’t define it.” Then an odd, reflective look crosses his face, as if he’s taking in the strangeness of this scene: Allen Frances, lead editor of the fourth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (universally known as the DSM-IV), the guy who wrote the book on mental illness, confessing that “these concepts are virtually impossible to define precisely with bright lines at the boundaries.” For the first time in two days, the conversation comes to an awkward halt.

But he recovers quickly, and back in the living room he finishes explaining why he came out of a seemingly contented retirement to launch a bitter and protracted battle with the people, some of them friends, who are creating the next edition of the DSM. And to criticize them not just once, and not in professional mumbo jumbo that would keep the fight inside the professional family, but repeatedly and in plain English, in newspapers and magazines and blogs. And to accuse his colleagues not just of bad science but of bad faith, hubris, and blindness, of making diseases out of everyday suffering and, as a result, padding the bottom lines of drug companies. These aren’t new accusations to level at psychiatry, but Frances used to be their target, not their source. He’s hurling grenades into the bunker where he spent his entire career…..

“We made mistakes that had terrible consequences,” he says. Diagnoses of autism, attention-deficit hyperactivity disorder, and bipolar disorder skyrocketed, and Frances thinks his manual inadvertently facilitated these epidemics—and, in the bargain, fostered an increasing tendency to chalk up life’s difficulties to mental illness and then treat them with psychiatric drugs.

The insurgency against the DSM-5 (the APA has decided to shed the Roman numerals) has now spread far beyond just Allen Frances. Psychiatrists at the top of their specialties, clinicians at prominent hospitals, and even some contributors to the new edition have expressed deep reservations about it. Dissidents complain that the revision process is in disarray and that the preliminary results, made public for the first time in February 2010, are filled with potential clinical and public relations nightmares. Although most of the dissenters are squeamish about making their concerns public—especially because of a surprisingly restrictive nondisclosure agreement that all insiders were required to sign—they are becoming increasingly restive, and some are beginning to agree with Frances that public pressure may be the only way to derail a train that he fears will “take psychiatry off a cliff.”

At stake in the fight between Frances and the APA is more than professional turf, more than careers and reputations, more than the $6.5 million in sales that the DSM averages each year. The book is the basis of psychiatrists’ authority to pronounce upon our mental health, to command health care dollars from insurance companies for treatment and from government agencies for research. It is as important to psychiatrists as the Constitution is to the US government or the Bible is to Christians. Outside the profession, too, the DSM rules, serving as the authoritative text for psychologists, social workers, and other mental health workers; it is invoked by lawyers in arguing over the culpability of criminal defendants and by parents seeking school services for their children. If, as Frances warns, the new volume is an “absolute disaster,” it could cause a seismic shift in the way mental health care is practiced in this country. It could cause the APA to lose its franchise on our psychic suffering, the naming rights to our pain.

Photo: Garry Mcleod; Origami: Robert LangAllen Frances is worried that the DSM-5 will “take psychiatry off a cliff.”
Photo: Susanna Howe; photographed at Café Sabarsky, Neue Galerie, NYC

The authority of any doctor depends on their ability to name a patient’s suffering. For patients to accept a diagnosis, they must believe that doctors know—in the same way that physicists know about gravity or biologists about mitosis—that their disease exists and that they have it. But this kind of certainty has eluded psychiatry, and every fight over nomenclature threatens to undermine the legitimacy of the profession by revealing its dirty secret: that for all their confident pronouncements, psychiatrists can’t rigorously differentiate illness from everyday suffering. This is why, as one psychiatrist wrote after the APA voted homosexuality out of the DSM, “there is a terrible sense of shame among psychiatrists, always wanting to show that our diagnoses are as good as the scientific ones used in real medicine.”

Since 1980, when the DSM-III was published, psychiatrists have tried to solve this problem by using what is called descriptive diagnosis: a checklist approach, whereby illnesses are defined wholly by the symptoms patients present. The main virtue of descriptive psychiatry is that it doesn’t rely on unprovable notions about the nature and causes of mental illness, as the Freudian theories behind all those “neuroses” had done. Two doctors who observe a patient carefully and consult the DSM‘s criteria lists usually won’t disagree on the diagnosis—something that was embarrassingly common before 1980. But descriptive psychiatry also has a major problem: Its diagnoses are nothing more than groupings of symptoms. If, during a two-week period, you have five of the nine symptoms of depression listed in the DSM, then you have “major depression,” no matter your circumstances or your own perception of your troubles. “No one should be proud that we have a descriptive system,” Frances tells me. “The fact that we do only reveals our limitations.” Instead of curing the profession’s own malady, descriptive psychiatry has just covered it up.

The DSM-5 battle comes at a time when psychiatry’s authority seems more tenuous than ever. In terms of both research dollars and public attention, molecular biology—neuroscience and genetics—has come to dominate inquiries into what makes us tick. And indeed, a few tantalizing results from these disciplines have cast serious doubt on long-held psychiatric ideas. Take schizophrenia and bipolar disorder: For more than a century, those two illnesses have occupied separate branches of the psychiatric taxonomy. But research suggests that the same genetic factors predispose people to both illnesses, a discovery that casts doubt on whether this fundamental division exists in nature or only in the minds of psychiatrists. Other results suggest new diagnostic criteria for diseases: Depressed patients, for example, tend to have cell loss in the hippocampal regions, areas normally rich in serotonin. Certain mental illnesses are alleviated by brain therapies, such as transcranial magnetic stimulation, even as the reasons why are not entirely understood.

Allen Frances’ revolt against the DSM-5 was spurred by another unlikely revolutionary: Robert Spitzer, lead editor of the DSM-III and a man believed by many to have saved the profession by spearheading the shift to descriptive psychiatry. As the DSM-5 task force began its work, Spitzer was “dumbfounded” when Darrel Regier, the APA’s director of research and vice chair of the task force, refused his request to see the minutes of its meetings. Soon thereafter, he was appalled, he says, to discover that the APA had required psychiatrists involved with the revision to sign a paper promising they would never talk about what they were doing, except when necessary for their jobs. “The intent seemed to be not to let anyone know what the hell was going on,” Spitzer says.

In July 2008, Spitzer wrote a letter to Psychiatric News, an APA newsletter, complaining that the secrecy was at odds with scientific process, which “benefits from the very exchange of information that is prohibited by the confidentiality agreement.” He asked Frances to sign onto his letter, but Frances declined; a decade into his retirement from Duke University Medical School, he had mostly stayed on the sidelines since planning for the DSM-5 began in 1999, and he intended to keep it that way. “I told him I completely agreed that this was a disastrous way for DSM-5 to start, but I didn’t want to get involved at all. I wished him luck and went back to the beach.”

But that was before Frances found out about a new illness proposed for the DSM-5. In May 2009, during a party at the APA’s annual convention in San Francisco, he struck up a conversation with Will Carpenter, a psychiatrist at the University of Maryland. Carpenter is chair of the Psychotic Disorders work group, one of 13 DSM-5 panels that have been holding meetings since 2008 to consider revisions. These panels, each comprising 10 or so psychiatrists and other mental health professionals, report to the supervising task force, which consists of the work-group chairs and a dozen other experts. The task force will turn the work groups’ proposals into a rough draft to be field-tested, revised, and then ratified—first by the APA’s trustees and then by its 39,000 members.

This new disease reminded Frances of one of his keenest regrets about the DSM-IV: its role, as he perceives it, in the epidemic of bipolar diagnoses in children over the past decade. Shortly after the book came out, doctors began to declare children bipolar even if they had never had a manic episode and were too young to have shown the pattern of mood change associated with the disease. Within a dozen years, bipolar diagnoses among children had increased 40-fold. Many of these kids were put on antipsychotic drugs, whose effects on the developing brain are poorly understood but which are known to cause obesity and diabetes. In 2007, a series of investigative reports revealed that an influential advocate for diagnosing bipolar disorder in kids, the Harvard psychiatrist Joseph Biederman, failed to disclose money he’d received from Johnson & Johnson, makers of the bipolar drug Risperdal, or risperidone. (The New York Times reported that Biederman told the company his proposed trial of Risperdal in young children “will support the safety and effectiveness of risperidone in this age group.”) Frances believes this bipolar “fad” would not have occurred had the DSM-IV committee not rejected a move to limit the diagnosis to adults.

Frances found psychosis risk syndrome particularly troubling in light of research suggesting that only about a quarter of its sufferers would go on to develop full-blown psychoses. He worried that those numbers would not stop drug companies from seizing on the new diagnosis and sparking a new treatment fad—a danger that Frances thought Carpenter was grievously underestimating. He already regretted having remained silent when, in the 1980s, he watched the pharmaceutical industry insinuate itself into the APA’s training programs. (Annual drug company contributions to those programs reached as much as $3 million before the organization decided, in 2008, to phase out industry-supported education.) Frances didn’t want to be “a crusader for the world,” he says. But the idea of more “kids getting unneeded antipsychotics that would make them gain 12 pounds in 12 weeks hit me in the gut. It was uniquely my job and my duty to protect them. If not me to correct it, who? I was stuck without an excuse to convince myself.”

At the party, he found Bob Spitzer’s wife and asked her to tell her husband (who had been prevented from traveling due to illness) that he was going to join him in protesting the DSM-5.

Throughout 2009, Spitzer and Frances carried out their assault. That June, Frances published a broadside on the website of Psychiatric Times, an independent industry newsletter. Among the numerous alarms the piece sounded, Frances warned that the new DSM, with its emphasis on early intervention, would cause a “wholesale imperial medicalization of normality” and “a bonanza for the pharmaceutical industry,” for which patients would pay the “high price [of] adverse effects, dollars, and stigma.” Two weeks later, the two men wrote a letter to the APA’s trustees, urging them to consider forming an oversight committee and postponing publication, in order to avoid an “embarrassing DSM-5.” Such a committee was convened, and it did recommend a delay, because—as its chair, a former APA president, later put it—”the revision process hadn’t begun to coalesce as much as it should have.” In December 2009, the APA announced a one-year postponement, pushing publication back to 2013. (The organization insists that Frances “did not have an impact” on the rescheduling of the revision.)

Read More: Inside the Battle to Define Mental Illness.

 

 

 

 

 

 

 

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