CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of Kim McCleary

June 2008

A Capitol Investment

It’s been a long time since we haven’t had a full-blown Lobby Day event on Capitol Hill. This year would have been our 16th, but the high costs of transportation and hotel rooms, a short legislative season and a crowded congressional calendar led us to decide early on that we would use an alternative strategy for our annual congressional event. We organized a briefing about CFS on the morning of May 8, with help from Senator Tom Harkin, and that afternoon conducted meetings with staff from 20 members of the House of Representatives. 

We had hosted congressional briefings a decade ago—in 1995, 1996 and 1997—so we were familiar with the format and the challenge of getting attention from staff who receive dozens of invitations and meeting requests every day. We used the “kNOw MORE” theme in our promotions and baited them with attention-getting facts about CFS. For instance:

The briefing featured three fantastic presenters. Beloved CFS experts Lucinda Bateman, MD, and Anthony Komaroff, MD, shared information about treatment challenges and research findings, underscoring the legitimacy of the illness and the reasons CFS should be a public health priority. With help from Laura Hillenbrand, who was too ill to make the commitment herself to give testimony, we were also able to attract Scott Simon, award-winning journalist and host of National Public Radio’s Weekend Edition to speak at the briefing. Scott told Laura’s story in a deeply personal, gripping fashion—an excellent balance to the more factual information presented by Drs. Bateman and Komaroff.

The session drew 45 participants to the small meeting room on the lower level of the U.S. Capitol Building that morning, including senior and junior staff members from the Senate and the House, representing Democratic and Republican members. We were forced to compete with floor votes on the Farm Bill and a last-minute hearing on cancer scheduled by Senator Ted Kennedy (just days before his diagnosis with brain cancer) that featured Lance Armstrong and Elizabeth Edwards. In spite of these distractions, the group that gathered was attentive and stayed for the full hour, asking insightful questions and commenting afterwards that it was one of the best briefings they had attended.

A week after the briefing, in response to thank-you messages sent to each of the attendees, I received this response from a staffer in a high-ranking House member’s office: “I found the briefing very informative and moving. I did not appreciate the extent of incapacity that occurs with this disease and agree that we must advance support of the science that will permit a cure.”

A Senate staff member who attended wrote about the briefing to a constituent he had met with in 2007 on Lobby Day. “The briefing on the 8th was both educational and emotional. We got a good update of the latest in CFS research and treatment (and the need for a greater investment in both). We also heard an emotional and heartfelt plea for more CDC funding from Scott Simon, host of NPR’s Weekend Edition and close friend of Laura Hillenbrand, author of Seabiscuit. It really was a moving speech and many people were wiping tears from their face when Mr. Simon talked about Ms. Hillenbrand’s struggles with CFS.”

While I missed the energy and momentum of gathering and training a large group of advocates to do the Hill visits that typically occur on Lobby Day, I believe this year’s strategy made an important impact and helped us deepen respect for CFS and the needs of the people who have it. Next year, with a new administration, new faces in Congress and likely changes in membership of important funding committees, we’ll need large numbers to deploy across Capitol Hill to share our message. But I am grateful for the force and passion of the small but potent group who told our story this year, and for those who amplified the message in the 3,846 messages sent so far through our 5th Annual Virtual Lobby Day, still active at http://capwiz.com/cfids/home/. Please make your voice heard if you haven’t done so already.

Kim McCleary
President & CEO
June 4, 2008

See “Excerpts from the Congressional Briefing on CFS” in this issue of the CFIDSLink.

See last month’s update on the May 5-6 meeting of the Department of Health and Human Services CFS Advisory Committee in the May 2008 “From the Desk of Kim McCleary.”