Department of Health and Human
Chronic Fatigue Syndrome
August 23, 2004
Christina Beato, MD
Principal Deputy Assistant Secretary
Department of Health and Human Services
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 most serious current problems regarding CFS are as
1) There is no known cause, and no biologic marker to diagnose
2) There is only limited knowledge of the pathophysiology of
3) From 70% to 90% of patients with CFS in the population are
4) There is limited knowledge regarding effective
5) Disability from CFS has created a large national economic
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
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
5. The DHHS should promote,
encourage and fund research directed toward the diagnosis, epidemiology, and
treatment of CFS in children and adolescents.
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 Veterans 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,
Chronic Fatigue Syndrome Advisory Committee