CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of Kim McCleary

April 2008

When Clutter Means Progress

My desk looks like a bomb went off on it. Okay. Maybe that description fits my office, and not just my desk.

The many intersecting piles of paper and publications rather closely mirror the intersecting topics I deal with on a daily basis. This spring seems to be an even busier time than usual, as we engage on multiple fronts of research, education and public policy to effect change. Here’s a brief overview of just a few of our current activities:

Today I board a plane for Osaka, Japan. Scientific director Suzanne Vernon and I will meet with the large group of scientists there who have been working to better understand CFS and severely fatiguing illnesses, a priority for the Japanese government. You’ll hear more about our trip and the Japanese group’s work in future issues of the CFIDSLink and CFIDS Chronicle.

In two weeks the Association will host its eighth “kNOw MORE CFS” seminar in Tampa, Florida, on April 26. These half-day regional programs give patients, caregivers and health care professionals the opportunity to hear the latest research and clinical news from nationally renowned experts. For this meeting, we have the incomparable team of Dr. Lucinda Bateman and Dr. Suzanne Vernon giving presentations. I always look forward to the opportunity to meet long-time members and newly diagnosed patients, many of whom are attending their first CFS gathering. The “Faces of Chronic Fatigue Syndrome” exhibit will be in Tampa at the same time, and media response has been quite good, with promising coverage of CFS by local newspapers and radio stations. See the story “CFS Education & Empowerment Comes to Tampa.”

Within a few days of the Tampa seminar, I’ll be in Washington, D.C., for the week. A two-day meeting of the Department of Health and Human Services CFS Advisory Committee will be held on May 5-6. Federal agency officials will give status reports on their research and education programs, while appointed committee members deliver reports from subcommittees working on research, education and quality of life issues. Members of the public, including two members of the Association’s Board of Directors, also have the opportunity to give testimony. These meetings help focus the various federal agencies’ efforts and yield important recommendations to the Secretary of Health about how they can be strengthened. Few diseases have such a committee and we’re working to renew its charter when it expires in September.

On the morning of May 8, the Association will host a briefing about CFS for the U.S. Senate with sponsor Senator Tom Harkin. Presenting the latest on research and care will be Dr. Anthony Komaroff and Dr. Lucinda Bateman. Scott Simon, host of NPR’s Weekend Edition and Peabody-award winning journalist, will describe the human toll of CFS as he has witnessed its impact on his close friend Laura Hillenbrand. We’ll spend that afternoon meeting with members of the House or Representatives’ health staffers. See the story “Meetings and Congressional Briefing on CFS.”

On May 9, our Board of Directors will meet in Washington, D.C., to evaluate progress and policy issues.

Between these events, is the everyday work of responding to inquiries from patients, caregivers, health care professionals and the media; writing, editing and producing our publications, like this Link and the spring Chronicle (on its way to press mid-April), building relationships with (and between) scientists and clinicians, and raising the funds needed to keep all our programs moving forward.

This is truly a time of unique opportunity, and it’s deeply satisfying to be among those helping propel progress, even if things do get a little cluttered at times.

Kim McCleary
President & CEO
The CFIDS Association of America
April 7, 2008