CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of Kim McCleary

May 2008

On Capitol Hill

I have always been inspired by the sight of the United States Capitol Building. This week I’m passing it often, as we engage with several facets of the federal government on behalf of those with CFS.

On Monday and Tuesday, the Chronic Fatigue Syndrome Advisory Committee to the Department of Health and Human Services held its spring meeting. Two days of agency reports, stirring public testimony—including that of Association board members Brian Smith and chairman Jennie Spotila—and vigorous committee discussion. At the end of the second day, the committee formulated several recommendations to the secretary of health. Most offer guidance for an external peer review of the CDC’s CFS research program. One begins the process of engaging the Office of the Surgeon General in CFS education. Another suggests means by which more health care professionals might be educated about CFS through divisions of the Health Resources and Services Administration.

The meeting was better attended by members of the public, including many CFS patients, than the past several have been. The presence of patients, family members and other advocates is an important aspect of these advisory committee meetings, helping remind the committee members of the reason this committee exists.

Tomorrow morning, in the Capitol Building itself, the Association will sponsor a CFS briefing for members of the U.S. Senate and their staff members, providing updates on the latest CFS research from Dr. Anthony Komaroff of Harvard Medical School, the challenges of patient care by Dr. Lucinda Bateman of Salt Lake City, and the human toll of CFS, offered by Scott Simon, host of NPR’s “Weekend Edition” and close friend of Laura Hillenbrand. In the afternoon, members of our Board of Directors and a dozen past Lobby Day participants will meet with nearly 20 U.S. Representatives’ offices to share some of the same information. (See the story in this issue of the CFIDSLink.)

All week I’m monitoring the impressive response to our 5th Annual Virtual Lobby Day, as advocates express their concerns and requests using the Association’s Grassroots Action Center. Already as a community we’ve directed 1,941 messages to the secretary for health, Congress, directors of the CDC and National Institutes of Health (NIH), and media outlets. This online supplement to the “live” events occurring in Washington helps raise the visibility of this often “invisible” community and expresses its need for expanded research, improved care, better services and greater awareness. If you haven’t done so already, please visit http://capwiz.com/cfids/home/ and lend your voice to these requests. We’ve made it easy to do, with pre-addressed letter templates you can customize.

Throughout the week, formal and informal discussions with federal agency officials, policymakers and advocates reinforce the serious burden that CFS imposes on our nation and how meager the government’s response has been in comparison. We must do more to “make the case” for bringing proportionate resources to bear – to foster expanded research, to deliver better care, to provide a stronger safety net and to validate the experience of living with CFS. As much as the landscape of CFS has changed over the past 20 years, there are still too many unmet needs.

It’s easy to be frustrated that more isn’t being done, and to give up hope that we can make a difference. But the feeling I experienced during my first visit to the Capitol Building on my ninth grade class trip still resonates when I see the white dome that, to me, symbolizes the power of our representative democracy. We have a voice and a responsibility to use it. It’s a tremendous honor for me to speak for those whose voices have been diminished by this devastating condition.

Kim McCleary
President & CEO
May 7, 2008