Patients & advocates went to Capitol Hill to brief members of Congress on ME/CFS in May 2008. Grassroots “ambassadors” worked to garner support for ‘chronic fatigue syndrome’ via meetings with individual members of Congress. And a formal Congressional briefing to make the case for support was also held.
Speakers included Kim McCleary, president of the CFIDS Association (which hosted the briefing with help from Iowa Senator Tom Harkin); Harvard doctor Anthony Komaroff, MD, speaking about promising research avenues; Dr. Lucinda Bateman, explaining patient care challenges she confronts in her Salt Lake City-based clinic; and NPR’s Scott Simon (describing “the human toll” as he has observed it in family friend Laura Hillenbrand, author of Seabiscuit*).
Now the CFIDS Association has made video clips of these presentations publicly available. For details, and links to 10 excerpts from the presentations and Q&A, go to the CFIDS Association website.
* To read Laura Hillenbrand’s eloquent 2003 New Yorker story, “A Sudden Illness – How My Life Changed,” click here.