Letter To the DSM-5 Task Force:
On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACSF/ME), I would like to express my deep concern about the possible reclassification of CFS as a somatoform disorder in DSM-5. Although the proposed new category of Complex Somatic Symptom Disorder (CSSD) appears reasonable, we are concerned about CFS, a complex illness condition, becoming a subtype of CSSD or a distinct stand alone psychiatric diagnosis. We base our concern on comments by Dr Simon Wessely (DSM-5 Work Group; September 6-8, 2006) who concluded that we should accept the existence of functional somatic symptoms/ syndromes [apart from depression and anxiety] and respect the integrity of fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome, and their cultural variants. This comment suggests the possibility of a new DSM-5 somatoform diagnosis that subsumes CFS as one manifestation or subcategory.
It is the position of the IACFS/ME that placing CFS in the new category of CSSD would not be reasonable based upon the body of scientific evidence and the current understanding of this disease.
The classification of CFS as a psychiatric disorder in the DSM-5 ignores the accumulating biomedical evidence for the underpinnings of CFS in the domains of immunology, virology, genetics, and neuroendocrinology. Over the past 25 years, 2,000 peer review 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 leads to symptom worsening. In contrast to clinical depression, motivation is much less affected in CFS and the desire to be active remains intact. Furthermore, large differences in gene expression have been recently found between CFS and endogenous depression (Zhang et al., 2009)
Although biomedical research to elucidate the mechanisms of CFS is a work in progress, the medical uncertainties surrounding CFS should not be used as justification to classify it as a psychiatric illness. As stated by Ricardo Araya MD: The absence of a medical explanation [for an illness] should not confer automatic psychiatric labeling (Sept.6-8, 2006; Somatic Presentations of Mental Disorders; DSM-5 Work Group).
With respect to DSM-5, we support a recent editorial in the British Medical Journal by Dr. Allen Francis (2010), chair of the DSM-IV task force, who stated that any new DSM diagnosis should be based on a careful risk-benefit analysis that includes .a consideration of all the potential unintended consequences (p. 492). The likely unintended consequences of a CFS diagnosis in the new DSM will be increased stigmatization and even lower levels of recognition by primary care physicians and the medical community in general. As a result, we believe such an action would be counterproductive to our ongoing efforts to educate physicians about the assessment and clinical care of these patients.
The IACFS/ME is an organization of more than 500 biomedical and behavioral professionals whose mission is to promote, stimulate, and coordinate the exchange of ideas related to CFS research, patient care, and treatment. We support scientific advocacy efforts for increased research funding. We also support public health policy initiatives to increase the recognition and reduce the stigmatization that continues to plague these debilitated and medically underserved patients.
Thank you for your attention.
Sincerely,
Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org
