CFSCC meeting
The Department of Health and Human Services (DHHS) Chronic Fatigue Syndrome 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 date.
Name change
The 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
Dr. Donna 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 on Women’s Health (ORWH), a NIH director-level department.

Kim Kenney, President & CEO of The CFIDS Association of America, and Mary Beth Buchholz of the 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 to the CFSCC. Dr. Hanna appears to be extremely enthusiastic about building on Dr. Dean’s excellent work.

Congressional activity
The 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 of CFIDS-related legislation.

Labor regulations
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.

Grassroots activism
To generate 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 Congress. If your organization wants to become more involved in CFIDS advocacy, contact the Association at 704-364-0466 or e-mail advocacy@cfids.org.

Although there have been many advances in the understanding of CFIDS, it remains a complex and difficult 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 of America, 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.

Sincerely,

(Your Name)