National advocacy efforts state concerns about revisions to DSM-V

The Massachusetts CFIDS/ME & FM Association has joined with other U.S. patient organizations to advocate against the potential misuse of a proposed new psychiatric diagnostic category in the diagnosis of CFIDS/ME and Fibromyalgia.

The revision of the current Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV ) is at the core of our concerns. This Manual, published by the American Psychiatric Association (APA), contains the major listings, definitions, and explanations of different psychiatric and psychological disorders. It is important to note these classifications are used by insurance companies, Medicaid and Medicare for patient billing purposes.

Currently DSM-IV is undergoing a major revision - the new DSM-V Manual is scheduled to be published in 2013. The issue which has raised the serious concern of both U.S. patient associations and of the international CFIDS/ME researchers (the International Association of CFS/ME - IACFS-ME) is a proposed new psychiatric category titled the:

Complex Somatic Symptom Disorder (CSSD)

to be included in the new DSM-V. More specifically, the way CSSD is defined makes it possible to either mistakenly or intentionally diagnose CFIDS/ME or Fibromyalgia in this psychiatric category. Moreover, the greater concern is whether this change could potentially lead to the reclassification of these illnesses as psychiatric conditions under CSSD.

The crux of the issue is that a person can be psychiatrically diagnosed as having complex somatic symptom disorder if he or she has all of the following:

a) multiple somatic (physical) symptoms, or one severe symptom that have been chronic fatigue for at least six months, and

b) which create a high level of health anxiety and which establish a central role in the patient's life for health concerns.

Does this diagnosis sound like it could easily be misused to diagnose CFIDS/ME, fibromyalgia, or even many other chronic physical illnesses? U.S. patients have already experienced the problematic history of The Centers of Disease Control and Prevention (CDC), The National Institutes of Health (NIH), and the many physicians and researchers discounting CFIDS/ME as a psychiatric illness, maladaptive behavior, or inability to cope with stress. If this new diagnostic code were to be accepted, then patients potentially could be labeled with complex somatic symptom disorder just because they are pushing doctors for answers to many symptoms.

In their explanation of the CSSD diagnosis, the American Psychiatric Association (APA) Committee states: "Some patients, for instance, with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptom disorder diagnosis."

As a result, this development galvanized patient associations around the country, as well as the IACFS/ME, to protest any misuse of the new CSSD category. This was accomplished by submitting strong letters on behalf of the illnesses to the APA during the comment period, which closed on April 20, 2010.

On behalf of the Massachusetts CFIDS/ME & FM Association and the community it serves, several poignant letters were written to the APA. The first letter was submitted by Dr. Alan Gurwitt, MASS CFIDS/ME & FM Association's President. It focused particularly on the incontrovertible medical research clearly demonstrating the biological and physiological bases of the illnesses. A second letter was submitted by Ken Casanova, a Board member and past President. It reviewed in detail how the new CSSD diagnosis would make it more difficult to separate physical from psychiatric illnesses, and how the new diagnosis could be mistakenly or intentionally misused.

The International Classification of Diseases-Clinical Modification 9 (ICD-CM-9) used by the CDC is different than the version used by WHO. The CDC is planning to update the ICD-CM- 9 to the ICD-CM-10 in 2013. However, the International WHO Code is being updated to version ICD-11 in 2014. This means the code the CDC will be using is still behind the WHO. The CFIDS and FM communities' concern is that the new CSSD classification could influence how CFIDS/ME and FM are listed in both the CDC and WHO classifications.

20+ years after first naming the illness Chronic Fatigue Syndrome, the CDC is now wanting to update its classification. The serious concern is that the new CSDD diagnosis could negatively influence any new CDC listing of CFIDS/ME. Any new psychiatric bias toward CFIDS/ME and/or FM in the new code could make it more difficult for patients to obtain insurance payments for their treatments. There is also, of course, concern about the effect of CSSD on the WHO code.

There is strength in numbers and our organization advocates on behalf of patients and the impact these illnesses have on their lives. Consider joining our Association so that together our voice and our actions will be stronger.

Click here to read Dr. Alan Gurwitt's letter to APA.

Click here to read Kenneth Casanova's letter to APA.