IACFS/ ME Statement on DSM-5 Somatic Symptom Disorder
June 11, 2011
The International Association for Chronic Fatigue Syndrome/ME (IACFS/ME) Statement on DSM-5 Somatic Symptom Disorder
Post #89 Shortlink: http://wp.me/pKrrB-1b6
The closing date for comments in the second DSM-5 public review is June 15.
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Copies of last year’s submissions here: http://tinyurl.com/DSM5submissions
Copies of this year’s submissions here: http://tinyurl.com/DSM5submissions2011
Dear Members and Colleagues:
I have submitted the comments below to the DSM-5 Work Group on Somatic Symptom Disorders. We are very concerned about the proposed new diagnosis, Complex Somatic Symptom Disorder, and its potential influence on physicians who see patients with CFS/ME.
Fred Friedberg, PhD
To the DSM-5 Somatic Symptoms Disorders Work Group:
On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACFS/ME), I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.
The Work Group’s well-reasoned points about DSM-IV somatoform disorders – that they are little used, confusing, and pejorative – do call for a re-evaluation. The question is: What should replace them? The new inclusive CSSD category attempts to offer a simplified and more inclusive diagnosis that may be more user-friendly to physicians and other health practitioners.
Our major concern is that the logic behind the new CSSD category is not informed by empirical data that directly examines the utility of this diagnosis in medical practice.
As stated by your Work Group: “A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably. …Predictive validity of most of the diagnostic proposals has not yet been investigated.”
Given the absence of scientific validation of the CSSD diagnosis, the potential for unintended consequences is a serious concern. One such consequence is the possibility of over-diagnosis that may selectively affect patients with illnesses that are already not well understood such as CFS/ME. If the treating practitioner is skeptical about the severity or even existence of CFS/ME, then the new criteria can be used to diagnose CSSD without reference to an underlying illness.
For instance, the CSSD criteria of (2) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms and (3) Excessive time and energy devoted to these symptoms or health concerns, would allow practitioners skeptical of CFS/ME to diagnosis the illness as an Axis I psychiatric disorder. This new psychological diagnosis may then narrow the physician’s focus and reduce the possibility of more effective management of the CFS/ME illness. Furthermore, the CSSD diagnosis may result in additional stigma for already marginalized patients with CFS/ME.
Over-diagnosis with CSSD may also arise from the broad generality of the new criteria and the absence of clear thresholds for patients to meet the criteria. As with somatization/somatoform disorders, when different criteria are used population prevalence varies from less than 1% for somatization disorder to an astonishing 79% for undifferentiated somatoform disorder (cited from Work Group online document). Arguably, the generality of the criteria for both undifferentiated somatoform disorder and CSSD suggests that CSSD may become a much more common (and potentially misapplied) diagnosis than the somatic symptom disorders that it replaces.
Finally, the CSSD diagnosis will not inform the clinician of CFS/ME-specific issues such as adverse reactions to treatment that are more likely in this hypersensitive population. By contrast, the CFS/ME diagnosis is useful for an array of illness related concerns that will assist the clinician in providing care for these medically under-served patients.
Given the above considerations, we ask that the CSSD diagnosis be omitted from DSM-5. Only when the proper validation studies are done that consider vulnerable populations such as CFS/ME can we know if the use of the CSSD diagnosis has clinical value. In its current form, we believe that the new diagnosis will do more harm than good.
Fred Friedberg, PhD
27 N. Wacker Drive, #416
Chicage, Illinois 60606