The Chronic Fatigue Syndrome Advisory Committee (CFSAC) 5th meeting Monday September 27, 2004 in Washington DC. A month before this September 27, 2004 meeting, David S. Bell MD, CFSAC Chairman sent a letter of eleven "Recommendations of the Chronic Fatigue Syndrome Advisory Committee" to the Secretary of Health and Human Services (HHS) Tommy Thompson on August 23, 2004 (letter included below). Before the December 8, 2003 CFSAC meeting, David S. Bell MD, CFSAC Chairman released an unexpected "Position Statement Concerning the Name" (letter included below) dismissing the hope of a name change before the meeting. © by Sean and Leslee Dudley) * * * * * * * * * * * * * * * * * * * * * * * * * * * Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee August 23, 2004 Christina Beato, MD Principal Deputy Assistant Secretary for Health Department of Health and Human Services 200 Independence Avenue, S.W. Room 716-G Washington, DC 20201 Dear Dr. Beato, The Chronic Fatigue Syndrome Advisory Committee has met on four occasions to consider how best to improve the care of persons with chronic fatigue syndrome (CFS) and to make recommendations to Secretary Thompson and the Department of Health and Human Services (DHHS). CFS is a chronic, disabling condition estimated to affect 800,000 Americans. A recent CDC study has estimated an annual economic impact of CFS of $9.1 billion dollars, not including medical costs. The most serious current problems regarding CFS are as follows: 1) There is no known cause, and no biologic marker to diagnose CFS. 2) There is only limited knowledge of the pathophysiology of CFS. 3) From 70% to 90% of patients with CFS in the population are not diagnosed. 4) There is limited knowledge regarding effective treatment. 5) Disability from CFS has created a large national economic burden. 6) There is difficulty in determining disability. Recommendations of the Chronic Fatigue Syndrome Advisory Committee: Primary Recommendations In the opinion of the CFSAC, the greatest priority for the DHHS is to substantially increase research efforts and funding. Future research efforts must apply an integrative approach because CFS is characterized by dysregulation of a number of highly integrated body systems, particularly the immune and nervous systems. Forming multidisciplinary research teams would provide a platform to conduct well controlled, methodologically sound, longitudinal studies to clarify the pathophysiology of this syndrome, and to develop effective treatment modalities. Serum and tissue banks for future investigations should be established. 1. We would urge the DHHS to direct the NIH to establish five Centers of Excellence within the United States that would effectively utilize state of the art knowledge concerning the diagnosis, clinical management, treatment and clinical research of persons with CFS. These Centers should be modeled after the existing Centers of Excellence program, with funding in the range of $1.5 million per center per year for five years. 2. We would urge the DHHS, through the NIH, expedite the issue of an RFA with sufficient set aside funds to attract senior level researchers to engage in the study of CFS. DHHS should fund extramural grants, reviewed by a special emphasis panel knowledgeable in CFS, through RO1, RO3, R21, and Directors Pioneer Award mechanisms. 3. The DHHS should provide funds to develop an international Network of Collaborators that would allow for multidisciplinary CFS-related research using standardized criteria accepted by the international CFS research community. Such a network would pool a large number of patients from around the world, and would require investigators to develop and employ common protocols. 4. DHHS should provide support and funding for an intramural staffed laboratory committed to CFS research. Secondary Recommendations 5. The DHHS should promote, encourage and fund research directed toward the diagnosis, epidemiology, and treatment of CFS in children and adolescents. 6. The DHHS, through the CDC and NIH, should continue to sponsor, even accelerate, focused workshops in specific areas of CFS and to invite investigators not currently working on CFS who have been identified as having an interest in the illness. 7. The DHHS should pursue making CFS a topic of training for health care providers, wherever appropriate at regional and national conferences sponsored by the Department. 8. The DHHS should encourage continuing education for Social Security reviewers and adjudicators. The secretary of DHHS should recommend that adjudicators follow the Social Security Policy ruling 99-2P which specifically clarifies policies regarding CFS. 9. The DHHS should increase public education on CFS through a public awareness campaign. Discrimination in health care, education and the workplace should be actively confronted. 10. We would encourage the classification of CFS as a 'Nervous System Disease' as worded in the ICD-10 G93.3. 11. The DHHS should consider participation of the Department of Defense, Department of Veterans Affairs, Agency for Health care Research and Quality, and the National Institute of Disability and Rehabilitation Research (NIDRR) as ex-officio members of the CFSAC for future deliberations of recommendations. Respectfully submitted, David S. Bell MD, Chairman Chronic Fatigue Syndrome Advisory Committee * * * * * * * * * * * * * * * * * * * * * * * * * * * Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee December 8, 2003 Position Statement Concerning the Name Change Proposal Background: The term "Chronic Fatigue Syndrome" Became widespread following the publication of the first CDC diagnostic criteria in 1988, revised in 1994. Despite the advances gained by having a term recognized by the Centers for Disease Control and the development and subsequent research stemming from specific diagnostic criteria, there has been a widespread dissatisfaction with the name of this illness. In 2001 the Department of Health and Human Services Chronic Fatigue Syndrome coordinating Committee (CFSCC) established a workgroup to study the many issues involved in changing the name 'Chronic Fatigue Syndrome' to a more suitable name. The CFSCC was dissolved prior to submitting its recommendations, but written recommendations of this workgroup were presented to the current CFSAC at the meeting of September 29, 2003. It was decided at that time that the current committee would review this issue for decision at the December 2003 meeting. The name change Workgroup of the CFSCC noted that the vast majority of patients and physicians believe that the current name focuses too narrowly on the poorly defined symptom of fatigue, and because of this, has promoted misunderstanding of the illness. They further noted that the name 'CFS' contributes to the disrespectful view of persons affected with the illness by the general public and medical community. They reviewed research showing that the adverse perception of the illness is, in part, due to the name of the illness. They recommend a new umbrella term, "Neuroendocrineimmune Dysfunction Syndrome", along the suggestions for sub grouping the illness. The current CFSAC has studied the issue of name change and has agreed on the following points: 1) In retrospect, the name 'Chronic Fatigue Syndrome', chosen for this illness in 1988, was an unfortunate choice. 2) It is inappropriate that the illness be associated solely with the symptom of fatigue, and the misunderstanding from this point has encouraged trivializing of the illness. 3) The patient community has been injured by disrespect, apathy and ignorance of the medical community, and this, in part, has been due to the inappropriate name of the illness. 4) The committee members feel that a more suitable name for this illness should replace the name 'chronic fatigue syndrome' and we are optimistic that a better name will replace 'CFS'. 5) However, the present committee feels that a change to a more appropriate name should not occur at the present time for the following reasons: a)There is growing acceptance by the medical community of CFS, and this process would be hampered by a name change at the present time. b)The term "Neuroendocrineimmune Dysfunction Syndrome" Is nearly as CFS, and a change at this time will not prevent the future change to a term or terms that more accurately represent the specific pathophysiology or pathophysiologies of the illness. c) The current research criteria, flawed though they may be, are currently used in nearly every country and are responsible for a large body of knowledge gathered in an orderly manner. To change the name at this time would require new diagnostic criteria and disrupt this process prematurely. d) Current funding through the NIH and CDC would be disrupted at this time when both organizations have announced a commitment to the scientific study of the illness. e) Renaming the illness at the present time would require renaming education materials, professional organizations, committees, journals, funding announcements and websites. It would also make data retrieval in the medical literature more difficult. f) The efforts involved in effecting a name change at the present time would detract from more pressing needs, such as the accurate identification and characterizations of illness subtypes, and the identification and subsequent management of pressing patient population needs. g) The 'trivialization' and disrespect for persons suffering from chronic fatigue syndrome will not be corrected solely by changing the name of the illness; there is a critical need for education of medical care professionals and increasing research. In summary, the CFSAC agrees that the name "Chronic Fatigue Syndrome" is a poor name. However, we feel that a change of this name to another name should occur only when there is a better understanding of the pathophysiology of the illness. Current efforts should be increased in the area of understanding illness subtypes which in itself may lead to a more appropriate name. Furthermore, the disrespect experienced by patients from both general public and medical community should be aggressively addressed. Respectfully submitted, David S. Bell MD, Chairman.