The D.C. Dispatch
CFIDS Public Policy Report
By Vicki C. Walker
Elections. Impeachment. Holidays. Over
the past few months, Congress
has been consumed with these and other activities, leaving little time for general business. Even so,
The CFIDS Association of America continued to press ahead, looking for other routes to advance the federal
government's investment in CFIDS.
Pushing the research agenda
In November, Association Executive Director Kim Kenney traveled to Washington to
meet with representatives
of the National Institutes of Health (NIH). Because CFIDS was once thought to be caused by Epstein-Barr
virus infection, the National Institute for Allergy and Infectious Diseases (NIAID) became the "home base"
for CFIDS research at NIH. As science has shown that CFIDS affects many body systems, the Association
has become concerned about the lack of interest from other NIH agencies in CFIDS research. Kim's goals
were to interest other agencies in funding CFIDS research and to find ways to increase the number of scientists
who are interested in researching CFIDS.
While in Washington, Kim met with representatives
from NIAID, the
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, where fibromyalgia research
is centered), the National Heart, Lung and Blood Institute (NHLBI), the National Institute of Neurological
Diseases and Stroke (NINDS), and the National Institute of Mental Health (NIMH). Kim reports that most
of the agency representatives seemed quite interested in CFIDS and asked for follow-up information about
the disease. They also had some interesting ideas about how to encourage other scientists to enter the
The trip's strategy seemed to work,
as interest in CFIDS has been
piqued at the NIH. Evidence for this came on Dec. 9, when the NIH CFS Coordinating Committee held its
biannual meeting. This meeting was better attended and more productive than past meetings of this committee,
which has been ineffectual in the past. Dr. Fred Altman of NIMH and Dr. Paul Velletri of NHLBI led a brainstorming
session about possible ways to increase the number of investigators interested in CFIDS research. The
Committee suggested that the NIH hold two meetings in 1999 to interest young investigators and clinicians
in joining this area of research.
As part of this overall strategy, a
letter was sent to the National
Institute of Disability and Rehabilitation Research (NIDRR), a division of the Department of Education,
asking that CFIDS be included in its extensive, five-year plan for research, demonstration, training and
related activities. Special thanks to Joe Lane for helping us with this important project.
CDC investigation ongoing
As of Jan. 6, the Department of Health and Human Services' Inspector General (DHHS
IG) had not
released its report on allegations of misuse of CFS research funds at the Centers for Disease Control
(CDC). Prior to publication, the CDC will be allowed to provide a statement that will accompany the report,
but will not be permitted to modify it in any way. To our knowledge, the CDC has not yet received a copy
of the report, so it appears that the public release of the report is not imminent. As soon as the report
is made public, the Association will notify members of C-ACT by E-mail and will post as much information
as allowed on its website (www.cfids.org). If you would like to receive
notification of this and other important advocacy alerts by E-mail, please send your name, mailing address
and E-mail address to: email@example.com.
The General Accounting Office has not
yet formally responded to Sen.
Harry Reid's request to evaluate the CDC's CFS research program, even though inquiries from other members
of Congress followed Sen. Reid's. GAO is reported to be waiting for the IG's report, which can serve as
background research for an overall GAO study of the quality and scope of CFS research at CDC.
On Sept. 1, the Association submitted
a Freedom of Information Act
(FOIA) request to the CDC, asking for copies of all correspondence and materials relating to the setting
and reporting of CFS budgets from 1989-95 and 1998. A partial response was received on Dec. 17, but we
are waiting to receive the full response prior to analyzing the four inches of paperwork we've already
News in Brief
- The CFIDS Association was given a final opportunity to submit comments
on the Social Security ruling on CFS which was attacked by the Wall Street Journal's editorial
board on Dec. 23 (see Association News this issue). The ruling remains
in SSA clearance, where it has been for several months.
- The briefing on CFS requested by Surgeon General David Satcher has
not occurred, despite early reports that it was tentatively planned for October. A new date has not been
- DHHS will hold a research planning conference on "The Health Impact
of Chemical Exposures During the Gulf War" Feb. 28-March 2 in Atlanta. For more information call 404/880-0404.
The CFIDS Association of America's annual Lobby Day will take place
during the week of May 10 in Washington, D.C. If you would like more information about participating in
Lobby Day, send a self-addressed, stamped envelope to the Association with a request for "Lobby Day Info."
Thanks to Mary Beth Buchholz of
The Sheridan Group for her assistance
writing this report.
Vicki Walker, Public Policy and
Youth Outreach Coordinator, is
in her sixth year of service to The CFIDS Association of America.