ME/CFS Primer/Education Newsletters Summary of CFSAC Meeting Ken Friedman, Ph.D.

The Chronic Fatigue Syndrome Federal Advisory Committee held its semi-annual meeting in Washington, D.C. (U.S.A.) on October 29 and 30th. The meeting was ostensibly scheduled to discuss these issues: the Department of Health and Human Services agencies response to CFS, progress in research and understanding of CFS, changes in Committee members, and status of Advisory Committee recommendations. However, the meeting took a different course due to the publication in Science magazine of an article concerning the finding of the XMRV retrovirus in a large percentage of CFS patients (67 percent) as compared to finding XMRV in approximately 3 percent of controls.

The finding was reported by the newly formed Whittemore-Peterson Institute (WPI) of Reno, Nevada (U.S.A.) in collaboration with the (United States’) National Cancer Institute (NCI) and the Cleveland Clinic (U.S.A). The finding represents approximately 2 years’ work at a cost of $2 million dollars (U.S.). Patients, clinicians, and researchers who attended the meeting believe that the finding is exciting and of significance. While the relationship between XMRV and CFS needs to be explored, the finding reported in Science magazine will rekindle interest and research into the role of viruses in general, and retrovirus in particular, in contributing to CFS. XMRV may represent the most prevalent virus found to date to in CFS patients. Regardless of its actual role in CFS, XMRV is significant and raises the question as to why the Centers for Disease Control and Prevention (CDC) of the U.S. has not made such a significant find despite 25 years of research and spending many times over (> $100 million) the research investment of the WPI.

The highlights of this meeting were three presentations. Dr. Dan Peterson, Medical Director of the WPI, delivered an invited presentation about finding the XMRV in CFS patients. Dr. John Coffin discussed the relationship of the XMRV finding to other retroviruses and its impact on CFS and retroviral research. The third, uninvited but permitted, presentation was given by Annette Whittemore who, along with her husband Harvey, founded the WPI. Mrs. Whittemore pleaded for more money to be spent on CFS research and for those funds to be more precisely targeted for CFS research than they have in the past.

Several members of the IACFS/ME presented testimony during the public comment portion of the meeting. Summaries of those presentations are provided elsewhere in this Newsletter. As the world’s only professional organization for researchers and clinicians involved in CFS/ME research and patient care, members felt it was important to use this Advisory Committee meeting to underscore the importance and significance of the XMRV finding as a new direction of CFS research – a direction not taken in 25 years of disappointing CDC research.

This CFSAC meeting was web cast and drew an audience of 800 hits on the first day. The meeting is currently available as pod casts at: (for day 1) and at: (for day 2). A full transcript of the meeting proceedings, as well as a listing of the meeting’s recommendations to the U.S. Secretary of Health will be placed on the CFSAC website:

The CFSAC is a federal advisory committee of the U.S. government housed in the Office of the U.S. Secretary of Health and Human Services. It serves to provide advice and recommendations to the Secretary of Health through one of the Assistant Secretaries. The Committee provides advice on the science and definition of CFS, on CFS biomedical research and clinical care, on health care provider education, on general health care issues created by CFS, and on other factors that affect CFS patients and their access to care. Ex-officio, participating, Department of Health and Human Services agencies are: the National Institutes of Health, the Centers for Disease Control and Prevention, the Food and Drug Administration, the Social Security Administration, and the Health Resources and Services Administration.

The next scheduled CFSAC meeting should occur in the Spring of 2010.

Back to IACFS/ME Newsletter, December 2009