Date sent: Thu, 27 Jun 2002 From: "Vicki Walker Advocacy Alert - CFS advisory committee status The CFIDS Association of America remains deeply concerned about the status of the Department of Health and Human Services (DHHS) advisory committee on CFIDS. The Association held meetings last week with top DHHS officials, but they have not yet indicated a timeline for the formation of the committee or the anticipated date of the first meeting. The last meeting of the CFS Coordinating Committee (CFSCC) took place in January 2001, 18 months ago. A new advisory committee is being created to address criticisms reported by the General Accounting Office in May 2000 about the structure of the committee. We recognize that the change of administration and events following the September 11 terrorist attacks on New York City and Washington, DC have consumed considerable time and resources at DHHS. However, time and patience are wearing thin with regard to the CFIDS committee's status. The latest information indicates that the charter for the CFIDS committee is being held up by the White House as part of a Government Services Administration review of hundreds of federal advisory committees. This review follows a department-wide review of advisory committees conducted six months ago. The Association has enlisted help from members of Congress to dislodge the CFIDS committee charter from the backlog and to speed formation of the committee. Regrettably, so far Congressional contacts urging Secretary for Health Tommy Thompson to launch the committee have been disregarded. We continue to maintain steady pressure on DHHS. It appears that the three remaining public members of the CFSCC, Jon Sterling (Chairman of The CFIDS Association of America and treasurer of the New Jersey CFS Association), Dr. Leonard Jason (DePaul University) and attorney Jeff Rabin (Chicago, Ill.), will continue their service on the new committee. A public call for nominations in the Federal Register will be published once the charter clears the final stages of review. It is expected that Committee members whose terms have expired may have to meet a break-in-service requirement before they can be nominated to serve on the new committee. The CFIDS Association of America will continue to push for the immediate launch of this new committee. We wish to thank other organizations and individuals whose actions are also directed at effectively establishing this important forum for policy recommendations that strengthen the government's response to CFIDS. Interested advocates should contact their members of Congress, asking them to write or call Secretary Thompson about speeding progress on forming the committee. For more information about how to participate in grassroots advocacy, visit The CFIDS Association's Web site at www.cfids.org/advocacy/default.asp The CFIDS Association of America Advocacy, Information, Research and Encouragement for the CFIDS Community PO Box 220398, Charlotte NC 28222-0398 Voice Mail: 800-442-3437 Resource Line: 704-365-2343 Fax: 704-365-9755 Web: www.cfids.org General E-mail: info@cfids.org