Date sent: Thu, 18 Jul 2002 From: "Vicki Walker Subject: HHS Advisory Committee Status Officials at the Department of Health and Human Services (HHS) still have not confirmed details on the planned transformation of the Chronic Fatigue Syndrome Coordinating Committee (CFSCC) into a full-fledged federal advisory committee for CFS. The committee was announced 18 months ago but stalled due to the change in presidential administrations and competing national priorities following Sept. 11. Most recently, it has been caught up in the restructuring of the 260-plus advisory committees that report to Department of Health and Human Services (HHS) Secretary Tommy Thompson. HHS has in the past expressed strong commitment to creating a full CFS advisory committee, which would provide CFIDS advocates with more power than they had under the CFSCC. Advisory committee status for CFS was initially recommended by the General Accounting Office in 2000. Secretary for Health Tommy Thompson expressed his support for the advisory committee in a January 11, 2002 letter to Representative Rodney Frelinghuysen (D-NJ). The CFIDS Association has forcefully expressed patients' outrage about the serious delay in action on the committee. As far as we can determine, there is no reason that the transformation cannot take place despite the cap on the number of advisory committees, as the CFSCC is still being counted as one of the 260 HHS advisory committees in existence. Despite this, HHS officials have requested suggestions for alternative, less formal group structures, since the administration is working to open up advisory committee slots for bioterrorism and domestic security, as authorized by Congress. The Association will continue to push hard for the promised CFS advisory committee, but has responded to HHS' request for alternative suggestions. Our priorities are to ensure that any new CFS body formed has the appropriate authority to advance CFS policy, gain top-level HHS leadership and secure adequate representation of related agencies and community stakeholders - particularly patient advocates. Also important is ensuring that the group has the necessary support to continue beyond personnel and other changes within the administration. We are determined not to allow this restructuring effort derail important progress made by the CFSCC, and will continue to work with DHHS staff and others whose efforts are constructive to secure a body that will strengthen federal efforts to address CFS. 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