Many of you will have read a previous blog prepared by Suzy Chapman and me that contained alarming information about the new DSM-5 diagnosis "somatic symptom disorder" (SSD).
DSM-5 defines SSD so over-inclusively that it will mislabel one in six people with cancer and heart disease, one in four with irritable bowel syndrom and fibromyalgia, and one in 14 who are not even medically ill.
I hoped to be able to influence the DSM-5 work group to correct this in two ways: 1) by suggesting improvements in the wording of the SSD criteria set that would reduce mislabeling, and 2) by letting them know how much opposition they would face from concerned professionals and an outraged public if DSM-5 failed to slam on the brakes while there was still time.
And many of you tried to help by making clear just how important this issue is in people's lives. The blog post got many tens of thousands of views, was reposted on 70 additional sites, was widely tweeted and posted on Facebook, and elicited more than 400 extremely well-informed and often passionate comments, unanimously in strong opposition.
We have failed, and DSM-5 has failed us. For reasons that I can't begin to fathom, DSM-5 has decided to proceed on its mindless and irresponsible course. The sad result will be the mislabeling of potentially millions of people with a fake mental disorder that is unsupported by science and flies in the face of common sense.
I suggested simple wording changes in the DSM-5 definition of SSD that would have tightened it significantly and reduced confusion at the difficult boundary between medical and mental illness. Naïvely I thought that my suggestions were so obviously necessary that DSM-5 would find them easy to accept and impossible to refuse.
The new criteria set would have made it much clearer that the person's concern about physical symptoms had to be "excessive, maladaptive, pervasive, persistent, intrusive, extremely anxiety-provoking, disproportionate and consuming enough time to cause significant disruption and impairment in daily life."
- "If a diagnosed medical condition is present, the thoughts, feelings and behaviors must be grossly in excess of what would be expected given the nature of the medical condition."
- "If no medical diagnosis has yet been made, a thorough medical work-up should be performed and be repeated again at suitable intervals to uncover possible medical conditions that may declare themselves with the passage of time."
- "The concern about physical symptoms should not be not better accounted for by another mental disorder (e.g., anxiety, depressive or psychotic disorder)."
Many of you would argue that I didn't go nearly far enough, that there should be no "somatic symptom disorder" at all in DSM-5 because there is no substantial body of evidence to support either its reliability or its validity. People who are concerned about medical problems would either not be diagnosed with any mental disorder or, when necessary, would get a much more benign and nonspecific diagnosis of "adjustment disorder."
I am sympathetic to this view, but I realized that it would have no traction with the work group, so I chose instead to lobby for what seemed to be clearly essential and relatively easy changes that would solve most, if not all, of the problem.
My goal was to make it almost impossible for DSM-5 to say "no" to what are obviously needed improvements. My suggestions were no more than standard stuff, just the typical exclusionary wording that has always been used in DSM criteria sets to encourage careful differential diagnosis and to reduce inaccurate overdiagnosis. Making the changes so easy was intended to be the carrot.
- "Clearly you have paid close attention only to the need to reduce false negatives but have not protected sufficiently against the serious problem of creating false positives. You are not alone in this blind spot; in my experience, inattention to false positive risk is an endemic problem for all experts in any field. But your prior oversight needs urgent correction before you go to press with a criteria set that is so unbalanced that it will cause grave harms."
- "When psychiatric problems are misdiagnosed in the medically ill, the patients are stigmatized as 'crocks,' and the possible underlying medical causes of their problems are much more likely to be missed."
- "Continuing with your current loose wording will be bad for the patients who are mislabeled and will also be extremely harmful to DSM-5, to APA and to your own professional reputations."
I also raised the point that this could lead to a boycott of DSM-5. Pretty strong stuff, I thought. But it was totally ineffective. DSM-5 remained blind to dangers and deaf to entreaties. Its startling failure to correct this obvious and harmful mistake is breathtakingly wrongheaded and exceeds even my most pessimistic expectations about DSM-5's lack of competence and credibility.
Suzy Chapman is not surprised. For three years she has been engaged in a determined effort to educate professionals and the public about the problems in DSM-5 and has been doing her best to help correct them. Her website provides the most complete documentation of everything related to DSM-5 and ICD-11.
Ms Chapman writes:
Unfortunately, the DSM 5 invitation for comments from the field turned out to be no more than an empty public relations show. For the second stakeholder review of DSM 5 draft criteria, the SSD disorder section attracted more submissions than almost any other section. Yet still the Work Group barreled blindly on with suggestions that were roundly opposed as hurtful to the medically ill -- shrugging off criticism from professionals and remaining completely unreceptive to advocacy organization and patient concern.
For its third draft, rather than revise in favor of less inclusive criteria, the Work Group's response was to lower the threshold even further -- reducing the requirement for "at least two from the B type criteria" to just one -- placing even more medical patients at risk of attracting an inappropriate mental health diagnosis.
Many years ago, the late Thomas Szasz said: "In the days of the Malleus, if the physician could find no evidence of natural illness, he was expected to find evidence of witchcraft: today, if he cannot diagnose organic illness, he is expected to diagnose mental illness." DSM 5's loosely defined Somatic Symptom Disorder is Szasz worst fear come true.
Thank you, Ms Chapman. I think Szasz' general critique of psychiatry was far too broad, but he certainly did hit the nail right on the head when it comes to DSM-5 and its cavalier treatment of the medically ill. The DSM-5 debacle is a sad moment in the history of psychiatry. Patients deserve better, and so does the profession of psychiatry.
The American Psychiatric Association has proven itself incompetent to produce a safe and scientifically sound diagnostic system. Psychiatric diagnosis has become too important in people's lives to be left in the hands of one small and insulated professional organization. It is time for a change. Toni Bernhard has interesting thoughts on this.
My heart goes out to all those who will be mislabeled with this misbegotten diagnosis. And I regret and apologize for my failure to be more effective.
Allen Frances is a professor emeritus at Duke University and was the chairman of the DSM-IV task force.
For an update on this issue see Allen Frances' blog, "Mislabeling Medical Illness As Mental Disorder: The Eleventh DSM-5 Mistake" (published 12/11/12).