CFS Advisory Committee Update

The Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC) is one of a very few disease-specific advisory committees to the Secretary of Health. The Committee has existed, under various names, since the early 1990s, but today’s committee was chartered in 2002. Its members—11 public representatives appointed by the Secretary of Health and Human Services—advise the Department of Health and Human Services on policy as it relates to CFS, helping shape federal research and education programs, as well as disability policy. Representatives from the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), Food and Drug Administration (FDA), Health Resources and Services Administration (HRSA) and Social Security Administration (SSA) provide agency reports, respond to questions and participate in the committee’s discussions. Meetings are held in public, giving advocates a unique opportunity to hear the exchange of ideas and concerns and to document commitments and progress (or lack thereof). It is a valuable – and rare – forum to have.

Since its first meeting in 2003, the committee has made numerous formal recommendations to the Secretary of Health, Mike Leavitt—the bulk of which were listed in a letter dated August 23, 2004. To date, there has been no formal response from the department; however, some of the recommendations have been implemented by the federal agencies. NIH issued a special Request for Applications for CFS research and will report the new studies it will fund at the Committee’s July 17 meeting. CDC has launched a public awareness campaign and expanded education activities directed at health care professionals.

At its April 24, 2006 , meeting, the committee requested that Secretary Mike Leavitt attend the next meeting to provide a response to the recommendations made so far. Committee members have received word that Leavitt is not able to attend the next meeting, but assistant secretary John Agwunobi may participate. We’ll report on this meeting in the  CFIDSLink and the CFIDS Chronicle.

Membership of the committee is scripted by the committee’s charter. Seven of the members are drawn from biomedical research and four come from diverse perspectives of medicine, disability and advocacy. Set terms ensure regular turnover among the appointees. Six members of the committee have terms that expire in September 2006, and the department recently called for nominations from the public to fill these upcoming vacancies.* The CFIDS Association submitted nominations for 10 individuals, listed below.

The committee’s charter is also set to expire in September. Through our May 9 Lobby Day, the CFIDS Association worked to build congressional support for renewing the charter to preserve this important vehicle for communication and accountability. So far, letters signed by 12 members of Congress have been sent to Secretary Leavitt. The announcement beginning the nominations process is a good sign that renewal of the charter is also under way. We’ll continue to monitor the process closely to ensure that we don’t lose this important public forum.

The CFIDS Association of America unconditionally recommends the following individuals for service on the CFS Advisory Committee:

Research Nominees

Ronald Glaser, PhD
Ohio State University

Leonard A. Jason, PhD
DePaul University

Nancy G. Klimas, MD
University of Miami

Richard A. Melia, PhD
National Institute for Disability and Rehabilitation Research (retired)

Charles Raison, PhD
Emory University

Healthcare, Disability and Advocacy Nominees

Wilhelmina D. Jenkins
Donnica Moore, MD
Jacqueline Niederle
Lorraine Steefel, RN, MA, MSN, CTN

* To receive the fastest notice of opportunities to participate in CFIDS advocacy, join the Association’s Grassroots Action Center listserv at http://capwiz.com/cfids/mlm/signup/