NJCFSA Opposes Reclassification of CFS/ME by APA:

The American Psychiatric Association proposes to change the classification of CFS/ME to a Somatoform Disorder in the upcoming publication of the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in May 2013. Here is the text of the response submitted by NJCFSA opposing the change.

The New Jersey Chronic Fatigue Syndrome Association (NJCFSA) is deeply concerned by the American Psychiatric Association’s possible reclassification of CFS as a somatoform disorder in DSM-5. Researchers at both the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) have documented the physiological and pathophysiological underpinnings of this disease.  The CDC, under the leadership of Julie Gerberding, launched a multi-million-dollar campaign within the past few years to underscore that CFS is a multi-system disease which can and should be treated as such. 

 Based upon the numerous, peer-reviewed studies that have linked CFS to infection and multiple organ systems abnormalities, the reclassification of CFS as a Complex Somatic Symptom Disorder would be contrary to these scientific studies and, therefore, unwarranted and incorrect. In fact, the evidence of infection with one or more pathogenic organisms in CFS patients is so strong, that CFS patients are advised to refrain from blood donation so as not to contaminate the blood supply.

 As estimated and communicated to you by the International Association for Chronic Fatigue Syndrome/ME (IACFS/ME), “Over the past 25 years, 2,000 peer -reviewed CFS studies have been published. The data support a multifactorial condition characterized by disturbances in HPA function, upregulated antiviral pathways in the immune system, and genetic abnormalities. Unlike clinical anxiety and depression, psychotropics are generally ineffective for CFS and standard medical advice to exercise and rest or resume activities often lead to symptom worsening.  In contrast to clinical depression, motivation is much less affected in CFS and the desire to be active remains intact.”

 In the past, the absence of a documentable, medical explanation has relegated other illnesses to a psychiatric diagnosis.  Illnesses given psychiatric diagnoses out of ignorance are later given more accurate, medical diagnoses with additional scientific research.  Surely, you do not wish to diminish the validity of the DSM-5 during its many years of use by repeating the errors of psychiatry’s past.  Multiple sclerosis was considered a psychosomatic illness for decades until a unique biomarker was found for it.

 The NJCFSA is further concerned that the reclassification of CFS as a somatoform disorder in the DSM-5 will result in decreased care of CFS patients.  The CDC’s Chronic Fatigue Syndrome educational programs for physicians explicitly suggest the management of CFS by primary care physicians with the suggestion of a psychiatric consult if the patient manifests appropriate symptoms.  The reclassification of CFS as a somatoform disorder in the DSM-5 will create confusion for many practitioners.  The confusion thereby created will demean the disease, reduce the willingness of some practitioners to treat it, and result in psychiatric treatments being prescribed for a well characterized physical disease.  Moreover, the listing of CFS as a somatoform disorder will impact the ability of CFS patients to receive reimbursement of their treatment costs and may result in a loss of treatment and disability insurance benefits.

 The NJCFSA is an internationally recognized, statewide patient advocacy organization representing over 330 members of the State of New Jersey and the Greater New York Metropolitan Area.  We have programs that assist patients in identifying healthcare providers, hold yearly physician and patient conferences that provide continuing medical education courses for physicians, and have produced the Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome endorsed by the Department of Health and Senior Services of the State of New Jersey, and the Department of Health of the State of Vermont.  Our manual is available online, and has been translated into Japanese and Spanish for worldwide distribution.  We are the first patient advocacy organization to mount both college and medical school scholarship programs.  Our medical school scholarship program serves as the model for similar programs in Vermont, Wisconsin and Florida.

 NJCFSA is committed to improving the lives of, and healthcare for, patients with CFS.  We view the suggested inclusion of CFS in the DSM-5 as a somatoform disorder contrary to both our efforts and scientific evidence.

 Thank you for your attention.

Sincerely,

Peg Walk,

NJCFSA

President

 

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