CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of K. Kimberly McCleary

May 2007

It’s May and advocacy is in the air.

The Organization for Fatigue and Fibromyalgia Education and Research (OFFER) will hold its annual patient conference on Saturday, May 5 in Salt Lake City. Founder Dr. Lucinda Bateman will have the opportunity to thank and honor Senator Orrin Hatch with an award for his support of CFS research and education.

On May 11, we’ll kick off our fourth annual Virtual Lobby Day with a series of easy activities you can do from your home or office computer to add strength to efforts happening in Washington, D.C. and across the nation that week. All you have to do is sign up now to receive action alerts through our Grassroots Action Center, and you’ll be notified of these and other timely opportunities to contact lawmakers, health policy leaders and the media. Visit http://capwiz.com/cfids/mlm/signup/.

May 12 marks CFIDS/CFS/M.E. Awareness Day and groups around the country are planning activities. Download a copy of our advocacy/media packet at http://www.cfids.org/advocacy/awareness-day.asp. 

On May 15, 85 well-trained advocates will meet with members of Congress and key staff about the need to make CFS a public health and research priority. This will be the largest Lobby Day group ever, representing 19 states and the District of Columbia. We’ve worked hard to hone our message and target our “asks” to generate the greatest impact possible. We’ll report on the results in our June CFIDSLink.

The federal CFS Advisory Committee will meet in Washington, D.C., on May 16-17. The two-day agenda will cover updates from federal health agencies, reports from subcommittees on education, research and quality of life issues, and testimony from the public. If you can’t attend the meeting, look for our report next month. For more information see http://www.cfids.org/cfidslink/2007/050705.asp.

Union Station in Washington, D.C., will host the traveling portrait exhibit, “The Faces of CFS” from May 20-June 2. 80,000 people a day—including many congressional staffers—visit Union Station for its restaurants, retail shopping and Metro and Amtrak train services. Thanks to this powerful photo exhibit, now Union Station visitors will also have the opportunity to learn more about CFS and its devastating impact. Parts of the exhibit will also be on display at the American Association for Physician Assistants annual conference May 26-31 in Philadelphia. Learn more about the exhibit by visiting http://www.cfids.org/sparkcfs/photo.asp. New venues and dates are being added regularly.

I look forward to representing the Association at most of the activities listed here. We hope you’ll take action, too, in whatever way you can! Thank you for engaging in advocacy!