Comments on DSM-5 proposals from the Massachusetts CFIDS/ME and FM Association

Comments on DSM-5 proposals from the Massachusetts CFIDS/ME and FM Association

Post #34 Shortlink:


Patient organisations, professionals and advocates submitting comments in the DSM-5 draft proposal review process are invited to provide copies of their submissions for collation on this page:

Massachusetts Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy and Fibromyalgia Association (Mass. CFIDS/ME & FM)


The Board of Directors of the Massachusetts Chronic Fatigue and Immune Dysfunction Syndrome / Myalgic Encephalopathy and Fibromyalgia Association (Mass. CFIDS/ME &FM) has reviewed your proposed revisions of DSM-IV destined for DSM-5. Our special focus has been on your newly proposed category “Complex Somatic Symptom Disorder”. Our concern is not so much about the fact that you want to simplify terms for somatoform disorders but about the particular criteria cited and the potential misuse of the category.

We share the concern, heard from individuals and organizations around the world, that this new category might be too readily misused to include chronic fatigue syndrome (“CFS”, also now known as ME or myalgic encephalopathy) and fibromyalgia as if they are forms of a psychological disorder. Most simply, they are not now psychologically caused illnesses nor have they ever been so. This concern doesn’t come out of the blue. Here in Massachusetts it is based on two and a half decades of seeing mistaken and harmful misdiagnoses based on totally inappropriate and harmful misconceptions of what CFS and fibromyalgia are and what they are caused by.

Our organization, celebrating our 25th year of existence helping patients with these illnesses, has seen firsthand the terrible toll exacted by the trail of misdiagnoses. Patients are tainted, dismissed, not properly treated, and often referred to equally misinformed mental health clinicians who then compound the damage.

In our view, the key problem is not so much the diagnostic nomenclature as it is the wrong and hugely out-of-date conceptions on the part of psychiatrists and non-psychiatric physicians of the very nature and likely causes of both CFS/ME and FM. While it is true that there may be important psychological disturbances following onset, these are secondary.

Over the past fifteen years, increasing numbers of researchers from around the world have pinpointed the likely biological causes, the complex pathophysiology that follows from the initial infectious or toxic triggers, and the interacting and dysfunctional multiple body systems (immune, central and peripheral nervous systems, endocrine, cellular [mitochondrial], etc) involved. Genetic and genomic factors are being elucidated. Certain viruses have long been implicated. Most recently a retrovirus, XMRV, has been implicated and is actively being studied in several centers. While no widely accepted biomarkers are currently available, many key researchers believe that it will not be long before one or more biomarkers will be found. (For example there are many changes in components of immune system functioning.)

While there is no definitive cure as yet, forms of treatment have been developed over the years that can alleviate many of the symptoms. Here is where mental health clinicians can help; sleep disorders are common, and if there are serious secondary psychological symptoms, certain therapies can help.

Dr. Anthony Komaroff, Professor of Medicine at Harvard Medical School and a long-time researcher in the field has said the following: “there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which has waged for twenty years, should now be over”. [1] Four years later there is even more evidence for Dr. Komaroff’s assertion.

The bottom line is that CFS and fibromyalgia are not psychological illnesses. It is then essential that the American Psychiatric Association vigorously help educate graduate and resident psychiatrists on what is now known. While the wording and criteria for “Complex Somatic Symptom Disorder” will matter so as to avoid confusing chronic fatigue syndrome and fibromyalgia with a somatoform disorder, it will be new understanding of the biological nature, proper diagnostic techniques, and appropriate treatments of these illnesses that will matter most. We consider these re-education efforts to be a responsibility of the American Psychiatric Association along with researchers and clinicians expert in the fields of chronic fatigue syndrome and fibromyalgia.

Alan Gurwitt, M.D.
President, Massachusetts CFIDS/ME & FM Association

(Retired adult and child psychiatrist, Distinguished Fellow of the American Psychiatric Association) 4/16/10

[1] Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC press conference on November 3, 2006


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