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CFS Advisory Committee report

The inaugural meeting of the Department of Health and Human Services
(DHHS) Chronic Fatigue Syndrome Advisory Committee (CFSAC) was held Sept. 29, 2003 on the National Institutes of Health (NIH) campus in Bethesda, Maryland. The CFSAC was convened on short notice to meet a commitment to hold the first meeting before the fiscal year ended on Sept. 30.

Although there has been no formal announcement of the committee's membership, as of Monday's meeting this information is now in the public domain. Voting members of the newly formed CFS Advisory Committee are:

David S. Bell, MD – Committee Chairman
Lyndonville, NY
Nancy C. Butler
Dubuque, Iowa
Jane C. Fitzpatrick
Punta Gorda, Fla.
Kenneth Friedman, PhD
Short Hills, NJ
Nelson Gantz, MD, FACP
Boulder, Colo.
Anthony L. Komaroff, MD
Boston, Mass.
Charles W. Lapp, MD
Charlotte, NC
Lyle Lieberman, JD
Miami, Fla.
Nahid Mohagheghpour, PhD
San Francisco, Calif.
Roberto Patarca, MD, PhD
Miami, Fla.
Staci R. Stevens
Ripon, Calif.

Representatives of five federal health agencies are ex-officio members of the CFSAC. Those who participated in Monday's meeting are:

Eleanor Hanna, MD
National Institutes of Health
William Reeves, MD
U.S. Centers for Disease Control & Prevention
Marc Cavaille-Coll, PhD
Food and Drug Administration
William Robinson, MD
Health Resources and Services Administration
William Anderson
Social Security Administration

Dr. Larry Fields, representing DHHS' Office of Public Health and Science, handled formation of the committee and organized its first meeting. He serves as the federal co-chair.

Committee members heard a brief history of the government's CFS efforts and agency reports on CFS research and education activities. Two invited guests, K. Kimberly Kenney, President & CEO of The CFIDS Association of America, and Jill McLaughlin, Executive Director of an association for CFS, addressed the committee to convey their respective organizations' priority requests. Public testimony was provided by Mary Schweizer, PhD and a statement from Pat Fero, executive director of the Wisconsin CFS Association, was read into the record by Dr. Fields.

The CFSAC also heard a report on the work of the Name Change Working Group (NCWG), formed in 2000 by the DHHS CFS Coordinating Committee (CFSCC)*. Carol Lavrich, chairman of the NCWG, made the presentation, highlighting the group's membership, activities and recommendations that evolved over three years of monthly conference call meetings, surveys of the patient, provider and research community, and discussions with CFIDS advocates, agency representatives and thought leaders. Although discussion was tabled after the most charged exchange of the day, the group has been asked to share its data and supporting information with committee chairman Dr. David Bell. He will summarize it for the committee at its next meeting for further consideration.

The committee identified a number of crucial issues it will explore at its next meeting, planned to be held before the end of the calendar year. Among the most frequently discussed needs were: the education of health care professionals; expansion of federally sponsored CFS research; and mechanisms to raise awareness about the serious and disabling nature of CFS. At the next meeting, CFSAC members will adopt a mission statement and agree on priorities to guide its work and recommendations to DHHS. At the request of the CFSAC, Dr. Fields is assessing the possibility of the committee meeting as many as four times per year; committee members expressed the need to meet more frequently as they get under way in order to regain momentum lost while the committee was formed from the CFS Coordinating Committee. The committee will establish an Internet listserv and Web site to facilitate communication with the public.

As Ms. Kenney stated to the committee on Monday, The CFIDS Association strongly supports the work of the CFSAC and sees it as an important catalyst in the fight to conquer CFIDS. This forum provides for discussion and debate of research, policy and human service needs related to CFIDS; the committee gives the CFIDS community a means to be heard and is an important symbol of recognition by the federal government of efforts to end their suffering. The CFSAC also represents an opportunity to strengthen collaborations that will ultimately result in a deeper understanding of CFS, more effective treatments and, ultimately, cure and prevention strategies.

Although the committee's membership does not include any member of the Association's Board of Directors or staff, the Association has long-standing collaborative relationships with many of those now serving. We will continue to actively participate in opportunities to nominate experienced, insightful, thoughtful and action-oriented advocates, researchers, clinicians, disability experts and others to the committee.

DHHS regrets that earlier notice of the meeting was not made. Now that the CFSAC is fully functioning, The CFIDS Association will broadly distribute information about future meetings and opportunities to provide testimony, and we will post regular updates on its progress.

*The DHHS CFS Coordinating Committee (CFSCC) was chartered in 1996 and met two to three meetings per year through 2001. Its last meeting was held on Jan. 30, 2001. The CFSAC replaced it after the General Accounting Office recommended that the structure of the CFSCC be brought into alignment with other advisory committees maintained by DHHS.

Leah Moseley
Public Policy Coordinator
The CFIDS Association of America