Recommendations for Consideration by the Research Subcommittee of the DHHS Chronic Fatigue Syndrome Advisory Committee (CFSAC)

June 2004

The CFIDS Association of America makes the following recommendations for strengthening federally sponsored research on chronic fatigue syndrome (CFS, also known as chronic fatigue and immune dysfunction syndrome, CFIDS , myalgic encephalomyelitis and ME). We fully support ambitious initiatives, such as Centers of Excellence, to dramatically increase funding for research that will improve understanding of the pathophysiology of CFS, identify diagnostic markers and effective treatments, and define risk factors, long-term clinical course and prevention strategies. Additionally, we have included strategies with minimal cost implications that could serve to maximize the positive impact of existing programs.

National Institutes of Health

Strategy 1:  Expedite the issue of a Request for Applications (RFA) with broad institutional support and sufficient set-aside funds to attract senior-level researchers from numerous disciplines to engage in the study of CFS. At the June 2003 conference, “Neuro-Immune Mechanisms and Chronic Fatigue Syndrome: will understanding central mechanisms enhance the search for the causes, consequences and treatment of CFS?” Dr. Vivian Pinn, director of the Office for Research on Women’s Health, announced that a Request for Applications (RFA) would be issued to stimulate research on CFS. A year has passed since this announcement. The existing Program Announcement has generated few quality applications in the recent past and it is set to expire on January 10, 2005. Additionally, the cooperative research centers supported by the National Institutes of Allergy and Infectious Diseases have been closed. Overall NIH funding for CFS research has declined, even with the inclusion of funding for studies that appear to have little direct relevance to CFS. The issue of a well-funded RFA could reverse this downward trend and demonstrate NIH’s commitment to fostering CFS research.

Strategy 2:  Conduct activities to generate greater interest among researchers in the intellectual challenges posed by CFS. Invite CDC to present details of its CFS Research Program to the Trans-NIH Working Group on CFS. Sponsor conferences, like the one on neuro-immune mechanisms, to raise the visibility of CFS and engage researchers working in fields closely related to CFS. Explore other mechanisms by which NIH has helped to stimulate scientific interest in conditions that at one time lacked sufficient funding, research talent, scientific rigor and social cachet. It has been suggested that research on aging and Parkinson’s disease were challenged in these areas not long ago.

Strategy 3:  Make presentations to researchers with interest in CFS about the NIH application process, including characteristics of fundable proposals and existing grant mechanisms to support pilot studies, training opportunities and other initiatives. Actively seek appropriate forums for presentations, such as the International CFS Research Conference hosted by the American Association for Chronic Fatigue Syndrome in Madison , Wisc., October 8-10, 2004 .

Strategy 4:  Continue efforts to interest NIH intramural investigators in the study of CFS, including support for the recently formed group of intramural researchers interested in integrative approaches to research in poorly defined conditions, such as CFS. 

Strategy 5:  Examine the performance of the Special Emphasis Panel that reviews CFS-related grant applications (ZRG-1) to ensure that panels have had appropriate expertise and that the reviews have been fair and balanced, consistent with performance standards set by the Center for Scientific Review.

Centers for Disease Control & Prevention

Strategy 1:  Allocate sufficient funds to the CFS Research Program to ensure maintenance of the broad array of research endeavors made possible by the funding restored to the program following the Inspector General’s report of May 9, 1999. With the imminent exhaustion of the $12.9 million in “scientific emphasis” funds, the program is vulnerable to severe contraction of activities that would jeopardize important population-based, clinical and molecular studies on CFS.  

Strategy 2:  Present a comprehensive report on CDC’s current CFS research activities to the Trans-NIH Working Group on CFS to inform the group’s efforts to stimulate interest in CFS research across the NIH campus. Identify opportunities for interagency collaboration.

Strategy 3:  Raise awareness and elevate visibility of the CFS Research Program within CDC through existing publications and programs that highlight research in areas of emerging interest and priority. Special efforts should be made to inform colleagues in the National Center for Infectious Diseases and the National Center for Chronic Diseases and Health Promotion about the CFS Research Program’s activities.

Strategy 4:  Maximize opportunities to showcase CFS through agency activities generated by Dr. Julie Gerberding’s Futures Initiative.

Strategy 5:  Evaluate the timeliness of a thorough peer review of the CFS program given the growth in program activities and the group’s expansion into clinical and molecular epidemiology studies.

Additional Recommendations for DHHS

Strategy 1:  Invite participation in the CFSAC by representatives of the Department of Defense and the Department of Veterans Affairs given the many similarities that exist between CFS and Gulf War illness and these departments’ considerable support for research that may have strong relevance to CFS. Similarly, invite participation from the National Institute of Disability and Rehabilitation Research (NIDRR), located within the Department of Education, given that NIDRR supports research and has established CFS as a program priority.

Strategy 2:  Regularly review and update CFS information on the federal health agencies’ websites and the CFSAC site ( http://www.hhs.gov/advcomcfs/index.html) to ensure the most accurate information is available to health care providers and the public. Post to the CFSAC and agency websites agency updates soon after each public meeting of the CFSAC .

Strategy 3:  Utilize DHHS, NIH and/or CDC communications offices to disseminate press releases about CFS research publications for all studies supported by federal funds. On the sponsoring agency’s website and the CFSAC website, provide links to, or text of, published research reports.

Respectfully submitted:

K. Kimberly (Kenney) McCleary
President & CEO
The CFIDS Association of America

June 18, 2004