CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of Kim McCleary

June 2009

It’s rare that I lose my cool in public. But having attended 15 meetings of the Department of Health and Human Services CFS Advisory Committee (and a dozen or so of its predecessors’ meetings), I found it more difficult than usual to maintain a detached demeanor this time. Members of the public are not permitted to address the committee, except during five-minute public testimony slots for which you have to preregister. And committee members often jockey with the chair for time to voice their own ideas and respond to others’ questions and comments.

After two days of fairly orderly presentations, the end of these advisory committee meetings can be a free-for-all, as recommendations are offered, articulated, amended and further revised, with a very loose set of Robert’s Rules governing the action. While only the committee members appointed from the public can vote, ex-officio federal representatives are free to interject and are often solicited for their opinions on matters that might affect their agencies’ programs. I wish the public had the same opportunity to be included in these last-minute negotiations of the words that will form the only part of the meeting likely to be seen by Department officials at levels higher than those already in the room.

At least now, thanks to many years of requests for expanded access to the meetings, a video and audio archived copy of the May 27-28 meeting proceedings make these sessions more accessible to the public. (Visit http://videocast.nih.gov/PastEvents.asp?c=39.)

At the CFSAC meeting, CDC presented its five-year draft strategic plan (http://www.cdc.gov/cfs/draft_5yr_research_plan.htm) and it has asked for comments about that plan. The CFIDS Association of America will send a detailed response, but we encourage as many people as possible to take advantage of this opportunity to provide input. The CDC program accounts for more than half of the country’s (meager) spending on CFS, and this plan will expend about $20 million at current spending levels.

There are other opportunities to be heard; we’ve updated our Virtual Lobby Day Alerts to reflect the recommendations made at the end of the meeting and CDC’s invitation to provide input. Visit our Grassroots Action Center at http://capwiz.com/cfids/home/ and help strengthen calls to swift and strong action.

Kim McCleary
President & CEO
June 3, 2009

P.S. Cort Johnson interviewed me at the CFSAC meeting; if you’d like to know why I lost my cool, please visit his blog at http://aboutmecfs.org/blog/?p=553. Our meeting report is in this issue at http://www.cfids.org/cfidslink/2009/060309.asp. 

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