HHS Advisory Committee Status

Advocacy Alert:  8/2/2002

The CFIDS Association of America is pleased to share information from the Secretary for Health and Human Services (HHS), Tommy Thompson, regarding the status of the HHS advisory committee on chronic fatigue syndrome (CFS). The following letter received by Rep. Rodney Frelinghuysen (D-N.J.) from Secretary Thompson confirms other reports the Association has received from HHS staff working to re-establish this committee. We are grateful to Rep. Frelinghuysen for his persistence in urging HHS to resume the advisory committee's activities, and we applaud HHS's efforts to complete the chartering of the committee, expedite the nominations process and convene the committee before Dec. 31, 2002. The Association will continue to work with HHS and Congress to ensure that these commitments are met.

The advisory committee serves many important functions and has been dormant since it last met on Jan. 31, 2001. The CFIDS Association will continue to provide updates so that all interested parties can participate in the open nominations process when it is announced.

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July 26, 2002

The Honorable Rodney P. Frelinghuysen
House of Representatives
Washington, D.C. 20515

Dear Mr. Frelinghuysen:

Thank you for your letter expressing interest in the status of the Chronic Fatigue Syndrome Coordinating Committee (CFSCC). I can assure you that the Department of Health and Human Services (HHS) recognizes the important role that the CFSCC has played in addressing issues related to Chronic Fatigue Syndrome (CFS). Coordination and communication regarding CFS research and other issues between HHS agencies, the biomedical community, and voluntary organizations are vital to the many individuals affected by CFS.

As you are aware, the Department is in the process of reviewing its advisory committees, including the CFSCC. We have worked to bring the CFSCC into conformance with the methods and structure used for the Federal Advisory Committee Act (FACA), as recommended in the GAO report, Chronic Fatigue Syndrome: CDC and NIH Research Activities Are Diverse, but Agency Coordination Is Limited (GAO/HEHS-00-98). The revised charter is in the final stages of development, and we expect to complete the restructuring process soon. Once this task is finalized, we will expedite the nomination process for Committee members.

With this transition, the Committee will be under the direction of the Office of the Secretary (OS). The Committee's Executive Secretary function will be located within the Office of Public Health and Science, with appropriate federal agencies continuing to provide support via memoranda of agreement. One representative from each of four HHS agencies will be invited to serve as ex officio members of the Committee. They will include the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Health Resources and Services Administration (HRSA), and the National Institutes of Health (NIH). The Social Security Administration (SSA) will also be invited to serve as an ex officio member. As with other advisory committees, these five Federal ex officio members will be non-voting members.

We believe that these changes are responsive to both the GAO's recommendations and the greater needs of HHS to seek continuing advice and counsel from the public. A date for the next Committee meeting has yet to be determined, but we anticipate meeting at least once this calendar year.

I appreciate hearing your views on this important issue. Please call me if you have any further thoughts or questions.

Sincerely,
Tommy G. Thompson
The Secretary of Health and Human Services
Washington, D.C.