22. juni 2004 


The federal government's CFS Advisory Committee met on June 21, 2004 to
formulate recommendations on research and education, receive updates
from health agency representatives. The committee also heard public
testimony from persons with chronic fatigue and immune dysfunction
syndrome (CFIDS, also known as chronic fatigue syndrome, CFS, myalgic
encephalomyelitis and ME) and their family members.

The committee reviewed draft recommendations prepared by separate
subcommittees evaluating current education activities and research
efforts on CFIDS conducted by the National Institutes of Health (NIH),
Centers for Disease Control (CDC), Health Resources and Services
Administration (HRSA), Food and Drug Administration (FDA) and Social
Security Administration (SSA). Chairman of the CFSAC, Dr. David Bell,
led discussion about possible strategies presented by subcommittee
chairmen that seek to strengthen federally sponsored CFIDS research and
education of health care providers and the public. Dozens of strategies
were considered and the committee will refine and prioritize a list of
approximately 15 of those judged most worthy. At the next meeting,
tentatively scheduled for September 27, 2004, the committee will present
and approve a final list of recommendations that will then be put
forward to Secretary for Health Dr. Tommy Thompson. Public comment on
the recommendations will be solicited later this summer.

A presentation made by Dr. Donna Pickett of the National Center for
Health Statistics focused on current classification of CFS in the
International Code of Diseases (ICD). While the rest of the world
utilizes a version of the ICD referred to as ICD-10, the U.S. uses a
modification of an earlier version, ICD-9-CM. In the ICD-9-CM, CFS is
listed under "Signs and Symptoms" at "780.71--chronic fatigue." However,
in the ICD-10 CFS is indexed to G93.3, a listing under "Diseases of the
Nervous System" along with "benign myalgic encephalomyelitis" and
"postviral fatigue syndrome." Codes are used by physician groups,
hospitals and insurers to track morbidity and mortality rates due to
various conditions. The CFSAC will consider among its recommendations
whether to urge adoption by the U.S. of the ICD-10 coding for CFS used
internationally.

Dr. Dharam Ablashi presented a series of recommendations from the
American Association of Chronic Fatigue Syndrome, an organization of
researchers and providers that fosters research, publishes a newsletter
and sponsors a bi-annual research, clinical and patient conference.
[http://www.cfids.org/resources/conf-meetings-interest.asp] A dozen
members of the public presented testimony on a variety of subjects
relevant to the committee's work and invited guests Jon Sterling,
chairman of the board of the CFIDS Association of America, Kim McCleary,
the Association's president & CEO, and Jill McLaughlin, executive
director of the National CFIDS Foundation, participated throughout the
meeting, including the session during which committee members offered,
questioned and revised draft recommendations. The CFIDS Association
offered sets of recommendations for research
[http://www.cfids.org/advocacy/research-recom.asp] and education
[http://www.cfids.org/advocacy/education-recom.asp] that were considered
by the committee. Several strategies were reflected in their working
draft.

The NIH's representative, Dr. Eleanor Hanna, announced that NIH would
issue a Request for Applications on CFS research initiatives in
November. RFAs carry a designated fund for successful proposals, making
them more attractive to prospective researchers than more general
Program Announcements that do not carry set-aside funds. Dr. Drue
Barrett, alternate representative from the CDC, notified the committee
that a new report from CDC researchers documented an annual loss to the
economy due to CFS of $9.1 billion. For more on this study, visit
http://www.cfids.org/advocacy/2004/c-act_06212004.asp.

The CFSAC has met quarterly since its inaugural meeting on September 29,
2003. Its charter will expire on September 5, 2004, although CFSAC
executive secretary Dr. Larry Fields indicated that the process to renew
the charter was under way and no obstacles to timely renewal were
anticipated. Further information about the CFSAC and a roster of its
members can be found at http://www.cfids.org/advocacy/CFSAC.asp. A more
complete report on the June 21 meeting will be included in the July
issue of CFIDS Link. To sign up for the Link, the Association's monthly
e-newsletter, visit http://www.cfids.org/subscribe.asp.

The CFIDS Association of America
June 22, 2004