The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 08 January 2016 08 January 2016
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 for patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM).
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 or IACFS/ME) is a proposed new psychiatric category titled: Somatic Symptom Disorder (SSD) (created by combining Simple Symatic Symptom Disorder and Complex Somatic Symptom Disorder which appeared in the earlier revision) to be included in the new DSM-V. More specifically, the way SSD is defined makes it possible to either mistakenly or intentionally diagnose ME/CFS (also known as CFS) 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 SSD.
The crux of the issue is that a person can be psychiatrically diagnosed as having Somatic Symptom Disorder if he or she has all of the following:
a. somatic symptoms that are distressing or significantly disrupt life
b. an excessive concern with the medical seriousness of his or her symptoms
c. experienced persistent symptoms, typically for at least 6 months
Why this matters
Does this diagnosis sound like it could easily be misused to diagnose ME/CFS, 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 ME/CFS 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 somatic symptom disorder just because they are pushing doctors for answers to many symptoms.
For patients with diseases that are poorly understood and misdiagnosed by the medical community, like ME/CFS, this will be disastrous. Once diagnosed inappropriately with SSD, the implications for diagnosis, treatment, disability and insurance will be profound.
SSD can be applied to patients regardless of whether the symptoms are considered to be medically unexplainable or not. Severity is rated by the count and frequency of somatic symptoms. The "Justification for Criteria – Somatic Symptoms," issued in May 2011, states that Cognitive Behavioral Therapy (CBT), focused on “the identification and modification of dysfunctional and maladaptive beliefs,” is one of the most promising treatments.
The misuse of SSD is a major concern for patients suffering from any disease. This proposal would effectively turn a patient’s justified concern for his or her physical health into a mental illness. This is appallingly bad health policy.
But this proposal is especially problematic for patients who suffer from diseases that are not well understood. ME/CFS is characterized by many of these somatic symptoms. Despite advances in understanding the biological pathologies behind ME/CFS, there are still many in the medical community who consider this illness to be ‘all in the patient’s head.’ Combining this lack of physician understanding with the proposal’s lack of objective, reliable criteria will be disastrous for ME/CFS patients and could directly affect the types of testing and treatment provided to the patient and severely impact insurance payments. It could also cause a parent to be wrongfully accused of 'maintaining' their child’s 'sick role behavior.'
How Patient-Advocates have responded
This proposed revision has galvanized patient associations around the country to protest any misuse of the new SSD category. This was accomplished by submitting strong letters on behalf of the illnesses to the APA during the first comment period, which closed on April 20, 2010, and also during the second comment period which closed on June 15, 2012.
Comments were submitted on behalf of the Massachusetts CFIDS/ME & FM Association by Dr. Alan Gurwitt, a retired psychiatrist and Distinguished Fellow of the APA and the immediate past President of the Massachusetts CFIDS/ME & FM Association. Dr. Gurwitt highlighted the possibility of misdiagnosing patients with ME/CFS with a psychiatric illness and directed the revision’s authors to the “ME/CFS Primer for Clinical Practitioners,” published in May 2012 by the International Association for Chronic Fatigue Syndrome/ME (IACFS/ME). He briefly described the contents of the IACFS/ME Primer (and provided a link) to demonstrate why ME/CFS is a medical illness, not a psychiatric disorder. Dr. Gurwitt stated “There is no reason to make use of DSM-IV or -V for diagnostic labeling unless in addition to the ICD-9 or 10 for the main medical diagnosis there is need to categorize secondary psychological phenomena.” He also called for the APA to “get busy re-educating psychiatrists.”
In 2010 two letters were written to the APA on behalf of the Massachusetts CFIDS/ME & FM Association and the community it serves. The first letter was submitted by Dr. Gurwitt. His letter 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 also a past President of the Association. It reviewed in detail how the new SSD diagnosis would make it more difficult to separate physical from psychiatric illnesses, and how the new diagnosis could be mistakenly or intentionally misused.
Help us by joining our Association since there is strength in numbers. Our organization advocates on behalf of patients and the impact these illnesses have on their lives. Together our voice and our actions will be stronger.
With thanks to Patient-Advocate and Massachusetts CFIDS/ME & FM Association member Mary Dimmock for material used in this article.
Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.