Date sent: Wed, 5 Sep 2001 Letter to World Health Organization re: CFS From: Vicki Walker The CFIDS Association of America faxed the following letter to the World Health Organization today regarding the "WHO Guide to Mental Health in Primary Care," which provides incorrect information on CFS. The Association is calling for the immediate removal of the section on CFS from this book. September 5, 2001 Dr. Gro Harlem Brundtland Director-General World Health Organization Avenue Appia 20 1211 Geneva 27 Switzerland Via Fax (+00 41 22) 791 3111 Dear Dr. Brundtland: The CFIDS Association of America, Inc., has recently learned of a booklet titled, WHO Guide to Mental Health in Primary Care. This guide was developed by the World Health Organization's Collaborating Centre for Research and Training for Mental Health at the Institute of Psychiatry, Kings College, London, and is published on the Internet at http://www.whoguidemhpcuk.org/. The CFIDS Association takes grave exception to the section of this booklet on chronic fatigue syndrome (CFS), as the information is inconsistent with current research on CFS as well as with WHO's own International Classification of Diseases, 10th revision. The ICD-10 index codes "chronic fatigue syndrome" at G93.3 in the chapter on the nervous system and the category "other diseases of the brain." However, the Kings College booklet lists CFS at F48.0 in the category "neurasthenia," a designation which specifically excludes code G93.3 illnesses. The diagnostic criteria for CFS in the booklet are not consistent with the internationally accepted criteria published in the Annals of Internal Medicine in 1994. Rather, they reflect relatively loose criteria used only by a small number of researchers and clinicians in the U.K. It is surprising that the 1994 international criteria would not be provided, given that Dr. Simon Wessely, an author of the CFS section of the WHO Guide, is also an author on the 1994 international definition, and the looser criteria predate the international definition, which is considered to replace earlier definitions. CFS is not considered by leading researchers of the illness to be a mental disorder, as indicated by the WHO Guide. Numerous biological abnormalities of the immune, endocrine and circulatory systems have been documented, although the etiology of CFS is not yet known. These abnormalities are not described or referenced in the WHO Guide. Risk and perpetuating factors noted in the accompanying article on CFS at http://cebmh.warne.ox.ac.uk/cebmh/whoguidemhpcuk/leaflets/06-2.html have never been proven to be associated with CFS. In fact, the cause(s), precipitant(s) and perpetuator(s) of CFS are not yet known, therefore the WHO Guide contains misleading information when it states that lifestyle factors are responsible for the development of CFS. Because the information on chronic fatigue syndrome in the WHO Guide to Mental Disorders in Primary Care is inaccurate, incomplete and inconsistent with WHO's own guidance in the ICD-10, The CFIDS Association of America calls for the immediate removal of this section from the booklet. It also appears that WHO has departed from the common requirement of a disclaimer for this booklet, such as the one used in a WHO publication on substance abuse (http://www.who.int/substance_abuse/PDFfiles/needsassessment.pdf): "This document is not a formal publication of the World Health Organization (WHO) and all rights are reserved by the Organization. The views expressed in documents by named authors are solely the responsibility of those authors." Please find attached a CFS Fact Sheet outlining current CFS research findings, most of which are overlooked by the King's College booklet authors. The CFIDS Association of America would be pleased to provide additional supporting documentation to WHO as it addresses this complaint. If you require additional information, please contact me by fax at 704-365-9755, e-mail at kkenney@cfids.org or telephone at 704-364-0466. Sincerely yours, K. Kimberly Kenney President & CEO cc: Ruth Kirschstein, PhD, Director, National Institutes of Health Jeffrey Koplan, MD, MPH, Director, U.S. Centers for Disease Control & Prevention Vivian Pinn, MD, Office of Research on Women's Health, National Institutes of Health William C. Reeves, MD, Chief, VEHB, U.S. Centers for Disease Control & Prevention Tommy Thompson, Secretary, U.S. Department of Health and Human Services Members, DHHS Chronic Fatigue Syndrome Coordinating Committee: Mark Brown, PhD, Department of Veterans Affairs Marc Cavaille-Coll, MD, PhD, Food and Drug Administration Donna J. Dean, PhD, National Institutes of Health Alan F. Doyle, DO, Social Security Administration Charles C. Engel, Jr, MD, MPH, Department of Defense Eleanor Hanna, PhD, National Institutes of Health Harold Jaffe, PhD, Centers for Disease Control and Prevention Leonard A. Jason, PhD, DePaul University Wanda K. Jones, DrPh, Department of Health and Human Services Anthony L. Komaroff, MD, Harvard University Janet Montgomery, Kailua, HI Jeffrey Rabin, Esq., Attorney, Des Plaines, Ill. William Robinson, MD, MPH, Health Resources and Services Administration Peter C. Rowe, MD, Johns Hopkins University David Satcher, M.D., Ph.D., Department of Health and Human Services Jonathan B. Sterling, The CFIDS Association of America The CFIDS Association of America Advocacy, Information, Research and Encouragement for the CFIDS Community PO Box 220398, Charlotte NC 28222-0398 Voice Mail: 800-442-3437 Resource Line: 704-365-2343 Fax: 704-365-9755 Web: www.cfids.org General E-mail: info@cfids.org