In 1996, Secretary for Health Donna Shalala chartered a special committee to advise the Department of Health and Human Services (DHHS) on policy regarding chronic fatigue syndrome (CFS, also known as chronic fatigue and immune dysfunction syndrome or CFIDS. This committee, known as the DHHS Chronic Fatigue Syndrome Coordinating Committee (CFSCC), brought together officials representing various health agencies together with seven appointed members of the public to improve coordination of federal CFS programs. A year 2000 review of federal activities on CFS conducted by the General Accounting Office prompted several changes. Among them was the replacement of the CFSCC with a new committee, the CFS Advisory Committee (CFSAC), whose structure more closely matched other DHHS advisory bodies. There was a long delay between the last meeting of the CFSCC (January 2001) and the first meeting of the CFSAC (September 2003). This was largely due to the change in presidential administrations, 9-11 and other consuming world events. The charter was most recently renewed on August 30, 2006 by Secretary Michael Leavitt.

Committee Membership
The federal charter for the CFSAC dictates the participation of five federal agencies and the appointment of 11 members of the public , chosen from two categories of membership.

Members of the public provide the following representation. Each member has one vote on matters before the committee:

Biomedical researchers (7 appointees)
Disability or clinical care expertise and/or patient advocates (4 appointees)

The following health agencies select representatives to participate in committee meetings, but cannot vote on matters before the committee:

National Institutes of Health (NIH)
Centers for Disease Control and Prevention (CDC)
Food and Drug Administration (FDA)
Health Resources and Services Administration (HRSA)
Social Security Administration (SSA)

Each public appointee to the committee serves for a limited term of one, two or three years. The 11 members of the public are nominated by the public, selected by DHHS staff, and appointed by the Secretary for Health. Nomination periods are announced periodically in the Federal Register. The Secretary selects one of the public appointees to serve as chairman of the committee. A federal employee is assigned to be the Executive Secretary, serving as a contact point and helping to plan meetings, facilitate discussion and manage the selection of new appointees.

Communicating With the CFSAC
The CFSAC communicates with the public through two mechanisms: an Internet listserv and a Web site. You can subscribe to the listserv at http://list.nih.gov/, The web site - http://www.hhs.gov/advcomcfs/index.html houses a committee roster, minutes of past meetings, the committee charter and other documents of interest.

Meetings
By law, all meetings of the full committee are open to the public and must be announced with ample advance notice in the Federal Register. Meetings generally last one full day, occur twice a year, and are usually held in Washington, D.C. Opportunities to testify before the CFSAC are usually provided to members of the public. At times, public testimony will be requested on specific topics to assist the committee in its work. Members of the Association's Grassroots Action Committee Listserv are notified of meetings and the opportunity to present to the CFSAC.

The CFIDS Association of America participates in all CFSAC meetings and regularly presents testimony. Association reports on past meetings are sent out through our listserv and are included in CFIDSLink, our monthly e-newsletter.

Activities
The CFSAC (and before it, the CFSCC) has addressed the expansion of CFS biomedical research, the name change, pediatric CFS, disability and health care provider education. Working groups may extend the committee's ability to gather information, develop proposals, and plan other activities. On August 23, 2004, the committee sent a set of 11 recommendations to the department, urging action on several of these issues. Assistant Secretary for Health John Agwunobi attended the July 17, 2006 CFSAC meeting and pledged to make a written response to these recommendations and other submitted by the committee.

Learn More About the CFSAC
The CFIDS Chronicle, mailed quarterly to Association members, reports on CFSAC meetings and other committee-related activities. You can find these reports in the "DC Dispatch" feature and on our Website.