CFSCC Statement from Jon Sterling and Kim Kenney

Advocacy Alert:  5/21/2002

We join other advocates in expressing great frustration with regard to the dormant status of the Department of Health and Human Services committee on chronic fatigue syndrome. The most recent meeting of the DHHS CFS Coordinating Committee (CFSCC) was January 30, 2001, 17 months ago. At that meeting the Department stated its intention to form a CFS Advisory Committee, consistent with recommendations made by the General Accounting Office. To date, the new committee has not been formed and members of the CFSCC have not received any formal communication about a continuing role with the Department's activities on CFS.

All but one of the seven federal representatives to the CFSCC have either left government service or have taken new positions within their respective agencies. Terms for four of the seven public members of the CFSCC have now expired. So, it is unclear whether it is even possible to convene the CFSCC while we press for DHHS to convene the new advisory committee.

Inquiries from several members of Congress have been made of Secretary for Health Tommy Thompson regarding the status of the new committee, largely as a result of the Association's March 22, 2002 Lobby Day meetings with legislators. We have made repeated requests to DHHS over the past year to move this matter forward. We also remain in regular contact with department staff working to facilitate the formation of the CFS advisory body and encourage others to do the same.

Jon B. Sterling
Chairman, The CFIDS Association of America
Member, DHHS CFS Coordinating Committee

K. Kimberly Kenney
President & CEO, The CFIDS Association of America
Member, DHHS CFS Coordinating Committee (term expired)