April 8, 2014

CFSAC: Chronic Fatigue Syndrome Advisory Committee

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 September 5, 2010; several revisions were made at that time.

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)
Agency for Health Care Research and Quality (AHCRQ)
Centers for Medicare and Medicade (CMS)

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 according to the Federal Advisory Committee Act (FACA). 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 its web site at you can find the committee roster, minutes of past meetings, the committee charter and other documents of interest.

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 two days, occur twice a year and are 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.

The Solve ME/CFS Initiative participates in all CFSAC meetings and regularly presents testimony. Association reports on past meetings are sent out through CFIDSLink, our monthly e-newsletter.

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.