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Winter 2003  

DC Dispatch
Your CFIDS Public Policy Report

The Association is preparing for a challenging year in Washington. In addition to working with a new session of Congress and new leadership in the Senate, we must also gain the attention of an administration preoccupied with threats of smallpox and other biological warfare agents. At the same time, we must fight for increased research funding in an economic environment that allows little growth for domestic spending.

Fortunately, we have several resources at hand to help meet these significant challenges. First is 11 years of experience working at the national level with legislators and health policy makers. Second is an excellent working relationship with The Sheridan Group, a D.C.-based lobbying firm that has represented the Association’s interests since 1992. And third are relationships with key individuals on Capitol Hill and within the health agencies who recognize the importance of CFIDS — and who have come to trust the information and viewpoints we bring to our discussions.

We also have an active network of people with CFIDS and concerned friends and family members to help inform and persuade lawmakers that CFIDS warrants their understanding and action.

There’s no doubt we’ll have our work cut out for us to make government more responsive to the myriad needs of the CFIDS community. We will be working to maximize the effectiveness of new and continuing activities. We hope you’ll take advantage of timely opportunities to help further the Association’s public policy program. Sign up to be a member of C-ACT, our online means of reaching you with news, sample letters and other tools to make it easy for you to be a CFIDS advocate. For more information, call the Association at 704-365-2343.

CFS Advisory Committee chartered

The long-awaited charter for a new federal CFS committee, designed to provide top public health officials with sound guidance on CFS-related issues, was signed by Secretary for Health Tommy Thompson on Sept. 5, 2002. The new advisory committee will differ from the prior “coordinating” committee in several substantive ways. Although the same federal agencies will be represented on the committee, agency officials will no longer have a vote. The 11 voting members will be appointed by Thompson; seven will be drawn from the biomedical research field and four others will represent diverse interests including patient advocacy, clinical practice and disability. The public was invited to nominate individuals for the committee from mid-December through January

31. The Association submitted nomination packages for 11 researchers and eight people meeting the criteria for the broader category. Dates for the announcement of committee members and the first meeting have not been released. Visit our Web site to learn more about our nominees; register as a C-ACT member to get updates on the committee’s activity.

CDC expands CFS research program

In 1998 The CFIDS Association exposed CFS funding improprieties at the U.S. Centers for Disease Control and Prevention that later resulted in the commitment of $12.9 million in new research spending on CFS. At the time, CDC’s CFS program focused mainly on estimating the number of U.S. adults with CFIDS. Today, the program has grown in both scope and depth to include high-tech genetics research, massive clinical studies and potent international collaborations. What began as tenacious CFIDS advocacy has contributed to positive momentum in CFIDS research. See the cover story of this issue for more details on the CDC program.