From the Desk of K. Kimberly McCleary

CFIDS Association president and CEO K. Kimberly McCleary

October 2006

In last month’s edition of CFIDSLink, we honored our Grassroots Action Center champions, individuals who’ve made heavy use of our online advocacy tool to contact legislators, policymakers and media about CFS. As a follow-up, I wanted to illustrate how the individual stories they (and less frequent users) share help tell the story of CFS to those in positions of influence.

When advocates use our prewritten templates to voice their concern, opinion or thanks, they have the option of including personal information about why CFS is important to them. The Association’s ability to follow-up effectively with the “target” of the advocacy is greatly enhanced by the opportunity to view copies of the individual messages sent; it’s also a moving reminder of why this work is so important, as well as the diversity of the people we reach and represent.

For example, shortly after O magazine published its September 2006 issue, which included a 4-page story about CFS, we alerted our Grassroots Action Center listserv subscribers about the article and asked them to thank the editors. The magazine reaches more than 16 million readers and has a long shelf life in doctors’ office waiting rooms, hair salons, libraries, etc. Plus, it’s just one of Oprah’s many media vehicles. Topics that strike a “nerve” with one audience may find their way to her TV program, satellite radio show or website.

So far, 250 people have written to Oprah’s editors in response to our Alert. Their own words help convey the impact the article has already had, as well as dimensions of the CFS story not told in the September piece. We’ve shared a few clips below.

Effective advocacy is important to everything we do and everyone we serve. Thank you to all who’ve taken action and choose now to add their voices to the effort. We strive to make it as easy as possible for you to do so.

K. Kimberly McCleary
President & CEO
The CFIDS Association of America

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Samples of stories shared with O magazine editors by online advocates:

“This disease affects not only me, but many others in our world. Personally speaking, it has changed my life from an energetic, accomplished individual to someone who spends most of his time doing nothing. I work hard to stay productive and not give in to this negative process, but it controls me, despite my best efforts.”

“I have been totally devastated by CFIDS—physically, financially and socially. Thank you for getting the word out there that this is not an "all in your head" illness, even though the name implies it is. Your article will open up many peoples' minds to this debilitating illness.”

“My 27-year-old daughter has been ill with CFS for 11 years. In high school she was approaching world-class swimming status and was pursued by many colleges for a full swimming scholarship. She was unable to continue swimming and could not start college on time. At this point she still is unable to continue her education and has missed so much.”

“This is important to me because my husband is one of the million Americans debilitated by CFS. But he's so much more than just a number: my college sweetheart; the father of our two young children; a senior exec of a large global corporation; a once vivacious athlete.” 

“My sister has struggled with CFS, a very real health condition. This info and coverage will help the many like her.”

 “I have had CFIDS for 11 years and can only work about two hours a day and can't yet walk a full mile. It has been an incredible challenge for a former varsity athlete to reduce my exercise and work schedule so drastically. However, I am extremely pleased at the recent research progress, but am concerned about the lack of funding for future breakthroughs. Articles like yours can bring attention to CFIDS and the research dollars needed to find a cause and treatment. Many thanks for the article.”

“I have been suffering from CFS for almost two years. I hope this article will help those around me, at home and at work, understand my condition.”