Secretary Leavitt sign on letter

The Honorable Michael O. Leavitt
Secretary of Health and Human Services
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201

Dear Secretary Leavitt,

We are writing you to urge you to renew the charter and fully fund the
Department of Health and Human Services Chronic Fatigue Syndrome
Advisory Committee (CFSAC).  As you know, CFSAC is a federal advisory
committee that provides evidence-based advice on the current state of
research on chronic fatigue syndrome (CFS) and research opportunities,
current and proposed diagnostic and treatment methods, and the
development and implementation of programs to educate the public, health
care professionals, and researchers about CFS research and advances.

Chronic fatigue syndrome, also called chronic fatigue and immune
dysfunction syndrome, is a complex and debilitating illness that affects
the brain and multiple body systems. The Centers for Disease Control and
Prevention estimates that more than one million American adults and
teens have CFS, costing our nation an estimated $9.1 billion a year in
lost productivity-not including medical costs. CFS warrants serious
attention by the Department of Health and Human Services. 

Meetings of the CFSAC provide a vital opportunity for experts selected
by the Department to hear reports from, provide input to and monitor
progress of the CDC, NIH, Health Resources and Services Administration,
Food and Drug Administration and the Social Security Administration. The
CFSAC's meetings also provide the patient community the opportunity to
participate in these discussions and voice concerns through public
testimony. Thus, CFSAC allows for greater transparency and
accountability, helping to ensure that the most effective utilization of
federal resources dedicated to CFS.

In 2004, the CFSAC presented your office with 11 recommendations. While
you have yet to formally respond to these and later recommendations
issued by the Committee, the Centers for Disease Control and Prevention
and the National Institutes of Health have implemented at least two of
the recommendations - notably NIH's July 2005 issuance of a Request for
Applications for CFS research and CDC's support of a national CFS
awareness campaign.

The CFS Advisory Committee serves an important forum for obtaining
information, providing input and monitoring progress on federal
activities pertaining to CFS. It is essential the CFSAC continue its
work so that we can continue our momentum. We urge you to renew CFSAC's
charter before its September 5, 2006 date of expiration, to respond to
the committee about the status of earlier recommendations and to fully
support its continued work.

Sincerely