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The Department of Health and Human Services (DHHS) Chronic Fatigue
Coordinating Committee (CFSCC) met Jan. 30 following the American Association for Chronic Fatigue Syndrome
(AACFS) conference in Seattle (see box at bottom of conference article
in this issue). Topics included the name change (see below), which will be addressed more extensively
at the next CFSCC meeting, and difficulties with employment and obtaining disability and health benefits.
In response to comments in the General Accounting
Office’s June 2000 CFS report, the CFSCC will become a full DHHS advisory committee this year, which
means there will be more representation from the general public (including a nongovernment chair) and
federal agency representatives will now not have voting privileges.
The next meeting date has not been announced, but a
two-day meeting is planned with one day devoted to the name change. Join The
CFIDS Association of America’s CFIDS Activist (C-ACT) e-mail list to receive notification of the meeting
CFSCC Name Change Working Group (NCWG) held a public forum Jan. 28 in Seattle. NCWG member Dr. Nancy Klimas
reported that the majority of clinicians attending the AACFS conference favored changing the name soon.
Researchers were less committed to a name change even though they recognize the problems
with the current
name. They expressed concern about potential loss of continuity and recognition in research.
The NCWG reported that it is considering several names
based on the pathophysiology, symptoms, or people associated with CFIDS, but no
one name is a leading option. A survey on preferences for names being considered was circulated at the
AACFS conference and on the Internet
through the CFSCC’s listserv.
Survey responses, which were due March 15, are being analyzed and a summary of the data
will be reported
at the CFSCC’s next meeting and on the CFSCC listserv.
New leadership at NIH
Dean, who led efforts to improve the National Institute of Health’s (NIH’s) CFIDS program and the CFSCC,
will now coordinate the new National Institute of Biomedical Imaging and Bio-engineering. Dr. Dean will
continue as CFSCC co-chair until the transition to a DHHS advisory committee is complete.
NIH has transferred central coordination of its CFIDS activities to the Office of Research
Health (ORWH), a NIH director-level department.
Kim Kenney, President & CEO of The CFIDS Association of America, and Mary Beth Buchholz
Sheridan Group met with Dr. Vivian Pinn, ORWH director, and Dr. Eleanor Hanna, an NIH scientific director
on assignment with ORWH, to learn more about the NIH transition.
Dr. Hanna will spend about half of her time on CFIDS issues and will become NIH’s representative
the CFSCC. Dr. Hanna appears to be extremely enthusiastic about building on Dr. Dean’s excellent work.
Association submitted its annual legislative requests to Congress March 30 to expand and improve CFIDS
research, health care provider
training, and public awareness efforts.
Members of the House and Senate Labor, Health and Human
Services, Education and Related Agencies Appropriations subcommittees, announced
in March, initiate most of the CFIDS-related legislation and are the main focus
of the Association’s advocacy efforts. Visit the Association’s Web site for a
list of subcommittee members and a sample letter (also see below) you can use to contact them in support
The Department of Labor’s privacy regulations, announced
in the winter 2001 Chronicle, were put on hold by the Bush administration due to technical errors the
Clinton administration made in submitting the regulations.
DHHS Secretary Tommy Thompson reopened the regulations for public comment in March,
and C-ACT members
wrote letters supporting the rapid implementation of the patient privacy rules. Weeks later Bush announced
that the guidelines would take effect on April 14, but the health care industry will have two years to
comply with privacy rules.
The Association also submitted comments to the
Department of Labor on a proposal to improve claimants’ abilities to obtain information about
their employer-sponsored health and disability plans.
interest in CFIDS advocacy, the
Association held three events. A meeting led by Kim Kenney, Mary Beth Buchholz,
and myself during the AACFS conference drew 44 patients and advocates. Mary Beth
spoke to the Northern Virginia CFIDS Support Group on March 17, and Tom
Sheridan, president of The Sheridan Group, and Kim Kenney spoke to the
Akron-Canton (Ohio) CFS/FM Self-Help Group on March 25. Lobby Day, the Association’s annual advocacy event
in Washington, will be June 20-21. For information, visit
the Association’s Web site or call 704-364-0466.
Involving local communities in CFIDS advocacy is crucial to building relationships with
your organization wants to become more involved in CFIDS advocacy, contact the Association at 704-364-0466
or e-mail firstname.lastname@example.org.
Vicki Walker is Research and Public Policy Project Manager for The CFIDS Association
TELL CONGRESS THAT YOU ARE CONCERNED ABOUT CFIDS
Make government officials aware of CFIDS
by writing to Congress to support increased and improved CFIDS research. Copy and use the following sample
letter. You can find the names of your representatives by calling the Capitol Switchboard (202-224-3121).
||U.S. House of
Washington, DC 20510
|Dear Senator (Last
(Last Name): |
As one of your voting constituents,
I ask that you support increased research on chronic fatigue and immune dysfunction syndrome (CFIDS),
also known as chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). More than 800,000 American
men, women, and children of all races and socioeconomic classes have CFIDS. CFIDS is a terribly debilitating
and serious illness, with symptoms including incapacitating fatigue, muscle and joint pain, information
processing and concentration problems, and numerous other symptoms. Persons with CFIDS function at a substantially
lower level of activity than they were capable of before becoming ill.
Although there have been many advances in the understanding of CFIDS, it remains a complex
disease to diagnose and treat. Improved understanding is severely hampered by inadequate funding for the
crucial research needed to better define its impact and identify more effective treatments to find the
cause, effective treatment, and a cure.
Therefore, I urge you to support legislation, such as that advocated by The CFIDS Association
that would increase the amount and the quality of research on CFIDS by our national public health agencies.
Please help us increase awareness of CFIDS by recognizing May 12 as International CFIDS Awareness Day.
Thank you for your consideration of these important matters.