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Fall 2001

The D.C. Dispatch
Your CFIDS Public Policy Report
By Vicki Walker

Even though national attention has largely been drawn to the aftermath of the Sept. 11 terrorist attacks, advocacy work for chronic fatigue and immune dysfunction syndrome (CFIDS) continues. The annual Labor, Health and Human Services appropriations bill, which funds health-related programs, contains important CFIDS-related language regarding funding priorities for the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC). As of press time, the final bill was pending with Congress.

Continuing our campaign to build congressional champions, the Association met with advocates in key congressional districts by conference call and at an Oct. 28 CFIDS conference in Minneapolis. If we do not continue to shine a light on the needs of people with CFIDS, the awareness we have built in recent years will surely dim. The 10th annual CFIDS Lobby Day on Capitol Hill will take place March 20-21, 2002. We've moved the event to March to take advantage of the anticipated timing of the fiscal year 2003 budget process. Please make plans now to participate - PWCs, family members and friends are encouraged to attend.

Even if you can't come to Washington, D.C. in March, we need your help year 'round! Members of the Association's CFIDS Activist (C-ACT) program receive regular updates on news and opportunities to participate in CFIDS advocacy. Send an e-mail message to c-act-subscribe@yahoogroups.com or visit the Association's Web site at www.cfids.org to join. If you have question about advocacy activities, contact the Association by e-mail at advocacy@cfids.org or telephone at 704-365-2343.

News Briefs

  • The CDC published an update on its CFIDS research program on its Web site. It outlines the programs and projects it is conducting with the $12.9 million restored to the CFIDS program from 1999-2003.
  • The CDC announced that CFIDS spending in 2001 was $9.9 million and is expected to be nearly $11.4 million by 2003. This is up from $2.2 million (in actual spending) in 1998, before funding improprieties were revealed and the financial restoration program began.
  • NIH spending on CFIDS continued its no-growth trend in FY2000 and is expected to remain flat for FY2001. We are hopeful that recent NIH initiatives, such as a new Program Announcement for CFIDS research grants (expected soon), revitalization of the NIH CFS Working Group and more involved leadership from the NIH Office of Research on Women's Health will lead to funding increases.
  • Plans to convert the CFS Coordinating Committee (CFSCC) to a Department of Health and Human Services (DHHS) advisory committee, caught in the change of administration, are now delayed due the focus of DHHS officials on bioterrorism. Although the CFS committee has the strong support of some top department officials, it is uncertain when the committee will meet next. Work by task forces on a name change for CFS and a public service announcement (PSA) continues, despite the lapse in formal meetings. The Name Change Working Group has circulated a draft of its proposal for use of the term chronic neuroendocrineimmune dysfunction syndrome (CNDS) and is seeking feedback. See page 6 for details. The PSA was filmed at DHHS offices on Oct. 31. Distribution plans have not been announced.

Vicki Walker is research and public policy project manager for The CFIDS Association of America.