Department of Health and Human Services
Chronic Fatigue Syndrome
August 23, 2004
Christina Beato, MD
Principal Deputy Assistant Secretary for Health
Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, DC 20201
Dear Dr. Beato,
The Chronic Fatigue Syndrome Advisory Committee has met on four
occasions to consider how best to improve the care of persons with
chronic fatigue syndrome (CFS) and to make recommendations to
Secretary Thompson and the Department of Health and Human Services
(DHHS). CFS is a chronic, disabling condition estimated to affect
800,000 Americans. A recent CDC study has estimated an annual
economic impact of CFS of $9.1 billion dollars, not including medical
costs. The moist serious current problems regarding CFS are as
1) There is no known cause, and no biologic marker to diagnose CFS.
2) There is only limited knowledge of the pathophysiology of CFS.
3) From 70 percent to 90 percent of patients with CFS in the population are not diagnosed.
4) There is limited knowledge regarding effective treatment.
5) Disability from CFS has created a large national economic burden.
6) There is difficulty in determining disability.
Recommendations of the Chronic Fatigue Syndrome Advisory
In the opinion of the CFSAC, the greatest priority for the DHHS is to
substantially increase research efforts and funding. Future research
efforts must apply an integrative approach because CFS is
characterized by dysregulation of a number of highly integrated body
systems, particularly the immune and nervous systems. Forming
multidisciplinary research teams would provide a platform to conduct
well controlled, methodologically sound, longitudinal studies to
clarify the pathophysiology of this syndrome, and to develop effective
treatment modalities. Serum and tissue banks for future investigations
should be established.
1. We would urge the DHHS to direct the NIH to establish five
Centers of Excellence within the United States that would effectively
utilize state of the art knowledge concerning the diagnosis,
clinical management, treatment and clinical research of persons
with CFS. These Centers should be modeled after the existing
Centers of Excellence program, with funding in the range of
$1.5 million per center per year for five years.
2. We would urge the DHHS, through the NIH, expedite the issue of
an RFA with sufficient set aside funds to attract senior level
researchers to engage in the study of CFS. DHHS should fund
extramural grants, reviewed by a special emphasis panel knowledgeable
in CFS, through RO1, RO3, R21, and Directors Pioneer Award mechanisms.
3. The DHHS should provide funds to develop an international Network
of Collaborators that would allow for multidisciplinary CFS-related
research using standardized criteria accepted by the international
CFS research community. Such a network would pool a large number of
patients from around the world, and would require investigators to
develop and employ common protocols.
4. DHHS should provide support and funding for an intramural staffed
laboratory committed to CFS research.
5. The DHHS should promote, encourage and fund research directed
toward the diagnosis, epidemiology, and treatment of CFS in children
6. The DHHS, through the CDC and NIH, should continue to sponsor,
even accelerate, focused workshops in specific areas of CFS and to
invite investigators not currently working on CFS who have been
identified as having an interest in the illness.
7. The DHHS should pursue making CFS a topic of training for health
care providers, wherever appropriate at regional and national
conferences sponsored by the Department.
8. The DHHS should encourage continuing education for Social Security
reviewers and adjudicators. The secretary of DHHS should recommend
that adjudicators follow the Social Security Policy ruling 99-2P which
specifically clarifies policies regarding CFS.
9. The DHHS should increase public education on CFS through a public
awareness campaign. Discrimination in health care, education and the
workplace should be actively confronted.
10. We would encourage the classification of CFS as a Nervous System
Disease as worded in the ICD-10 G93.3.
11. The DHHS should consider participation of the Department of
Defense, Department of Veteran Affairs, Agency for Healthcare Research
and Quality, and the National Institute of Disability and
Rehabilitation Research (NIDRR) as ex-officio members of the CFSAC
for future deliberations of recommendations.
David S. Bell, MD, Chairman
Chronic Fatigue Syndrome Advisory Committee