CFIDS Association President and CEO Kim McCleary

From the CEO's Desk

December 2009

Last week we circulated a message to Link subscribers and through our other communications channels in an effort to consolidate information about XMRV, recognize the enormous contribution made by those at the Whittemore Peterson Institute and to clarify the Association’s position on the discovery. In case you missed it over the holiday weekend, here’s a link to that message titled, “Getting Right and Giving Thanks.”

We appreciate the positive affirmations, the constructive criticism, and even the less-than-laudatory feedback we’ve received. It’s not easy to satisfy the diverse interests, expectations and appetite for information that members of the CFS community demonstrate, but we’re listening and constantly seeking to improve. As often as people speak of the “patient perspective,” it’s certainly not uniform or static. Time spent reading individuals’ posts to our Facebook page (and others dedicated to CFS/ME/XAND/XMRV), websites, blogs and discussion groups make it easy to see the diverse and dynamic opinions that abound. We also hear from people not connected by social media tools who articulate an even broader spectrum of responses. It’s a lot of input to process, but we are alert, aware and mindful and will factor requests and recommendations into our action plans.

We are grateful for your continued support, engagement and forbearance as we all adapt to rapidly shifting developments and contexts. I believe we are united by a common goal, to eradicate CFS (by any name) and return all those affected by it to healthy, fulfilling lives.

With hope for accelerated progress toward our shared goal,

Kim McCleary
President & CEO
The CFIDS Association of America

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