Meetings and Congressional Briefing on CFS

Better public health policy, increased funding for research and greater accountability are all important to the CFS community. That’s why the CFIDS Association focuses on advocacy in its mission to conquer CFS. In this election year and with Congress developing its budget and spending bills, here’s how the Association is working to keep CFS priorities in the discussion.

Meetings with key Congress members
Last month Association president & CEO Kim McCleary and scientific director Suzanne Vernon, Phd, met with 20 health appropriators, informing them of progress in CFS research, potential areas of “investment,” the magnitude of CFS, the burden it imposes on patients and the public, and the need to hold federal agencies accountable for what they do—and don’t do—to better understand CFS and serve those who have it.

The timing of the meetings was important. At the end of January the president presented his budget request for the federal government. It didn’t project an optimistic forecast for those who prioritize our nation’s support of medical research and public health programs. Now Congress will determine how to respond by developing its own budget, and then dividing those dollars into spending bills that fuel the vast domestic and foreign programs. The Senate and House committees involved in this process have just begun their work. That means we need to renew existing relationships and build additional ones so our requests are considered as early in the cycle as possible, with reminders strategically timed to coincide with important decision-making points.

Congressional briefing on May 8, 2008
The Association is working with Senator Tom Harkin (D-IA) and members of Congress to host a congressional briefing about CFS on May 8. We’ll work closely with congressional champions to invite a panel of CFS experts to discuss current research highlights and opportunities to shape funding requests and agency directives. So far on the agenda, Harvard professor of medicine Anthony Komaroff, MD, will discuss research, and longtime CFS physician Lucinda Bateman, MD, will address challenges in patient care. Peabody Award-winning journalist Scott Simon, host of NPR’s Weekend Edition, will speak about the personal impact of CFS from his perspective as a close friend of author Laura Hillenbrand.

Virtual Lobby Day gets your message across
There will not be a Washington, D.C., Lobby Day in 2008, but we’ll conduct the fifth annual Virtual Lobby Day, as well as online seminars to sustain our tradition of engaging advocates in grassroots activities. Last year people with CFS, their friends and family sent more than 6,000 messages to members of Congress, the Secretary of Health and directors of the NIH and CDC. To participate in Virtual Lobby Day, be sure to sign up for the Association’s Grassroots Action Center. We’ll keep you posted through the Grassroots Action Center listerv.

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The CFIDS Association fights for the rights of people with CFS and their families by advocating for more research and better public policy. Your donations make this work possible.

If you care about making CFS a national priority with lawmakers and health officials, please donate now.