The D.C. Dispatch
Your 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 field.

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: c-act@cfids.org.

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 gotten.

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 set.
• 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.