Patient Advocacy

Since 1992, the CFIDS Association has maintained a consistent presence in Washington, DC, representing CFS-related policy concerns and research interests to legislators, policy makers and agency staff. The Association has earned a solid reputation for credibility, tenacity, vigilance and accountability.

The goals of our public policy work are:

• To expand public investment in research aimed at the early detection, objective diagnosis and effective treatment of CFS;
• To validate the burden of illness imposed by CFS in venues where national policy is made and executed; and,
• To shape public policy that is responsive to the needs of persons affected by CFS.

The most visible example of efforts to hold the government accountable for its response to CFS came with a 1999 report from the General Accounting Office verifying that the Centers for Disease Control and Prevention (CDC) had misused $12.9 million directed to CFIDS research between fiscal years 1995 and 1998. The investigation validated the Association's long-standing allegation that the federal government had not made a serious investment in CFIDS research. The subsequent restoration of the full $12.9 million to the CDC's CFS research program resulted directly from vigorous Association-led public policy efforts. In March 2009 the Association shared a series of recommendations with CDC leadership to strengthen research and education efforts. In response to the CDC’s request for input on a draft five-year research plan, the Association detailed its concerns about the draft and submitted another detailed set of recommendations in June 2009. More detail about the community’s response to the CDC’s draft plan is reported at http://www.cfids.org/cfidslink/2009/070108.asp

The Association is also engaged with the National Institutes of Health (NIH) to energize its CFS research portfolio. In the fall of 2009, the Association and NIH’s Office of Research on Women’s Health co-hosted an investigators meeting at the Banbury Center of Cold Spring Harbor Laboratories to strengthen a research network launched by the Association in January 2009. This productive three-day meeting yielded unprecedented consensus that an expanded formal network will accelerate CFS research that seeks to identify biomarkers, describe pathophysiology and uncover effective treatments. A report on the Banbury conference is provided at http://www.cfids.org/cfidslink/2009/100702.asp

The Association's public policy program has made substantial progress in other areas as well. In 1999, the Social Security Administration issued a ruling (SSR 99-2p) that stated unequivocally that CFS can be a disabling impairment for which patients are entitled to federal disability benefits. A federal CFS Advisory Committee has existed for the past 13 years as a result of the Association's advocacy. The committee provides guidance to the Secretary for Health on policy matters related to research, patient care and education.

The participation of concerned CFS advocates is a vital element of the Association's public policy program. Through our online Grassroots Action Center and Lobby Day activities, activists have opportunities to make their voices heard on Capitol Hill. Follow the links below to learn more about the Association's public policy work and ways you can add your voice to the call to make CFS a public health priority equal to the burden it imposes on the individual, the family, our communities and our nation.

• Congressional Activities -legislation, key members of Congress, CFIDS Lobby Day
• Federal Agency Activities - government-sponsored CFIDS activities in the federal agencies
• Chronic Fatigue Syndrome Advisory Committee (CFSAC) - Department of Health and Human Services committee that brings together federal agencies, activists, doctors, researchers, and the general public
• Grassroots - Getting people who care about CFIDS involved in advocacy is crucial to getting more attention and funding from the government. Our Grassroots Action Center makes participation easy! Click here for more information about what you can do to help!
• Advocacy Archives  - historical information about past Congressional testimony, letters, and legislation; advocacy alerts; and other public policy efforts

The Association is represented in Washington, D.C. by B&D Consulting’s health and life sciences team. Led by Dave Zook, J.D. and Debra Lappin, J.D., B&D Consulting has established a nationally recognized practice that works with voluntary health organizations, medical technology innovators, and research institutions.