Advocacy Updates

Advocacy Alert: 6/30/2009

CDC input period ends today!

RESPOND TO CDC'S REQUEST FOR INPUT
TAKE ACTION

Join hundreds who have said "enough is enough."

For nearly two years, the CFIDS Association of America has been working to effect a more robust research effort at CDC. In spite of these diligent ongoing efforts, the past two years of dialogue and public testimony has produced a 5-year draft plan from CDC that is substantially the same as what CDC has been reporting since 2006. Status quo. Groundhog day. Déjà vu. All over again.

In response to CDC's request for input on its draft plan (posted at http://www.cdc.gov/cfs/meetings/2009_04.htm), the CFIDS Association has prepared a detailed response, making both criticisms and recommendations for how one-half of the nation's investment in CFS research will be spent through 2013. Our letter is posted at http://www.cfids.org/temp/research-plan-response.pdf for your review. We have used many of CDC's public reports to document the lack of progress and failure of the program's leadership to meaningfully advance practice and prevention to improve patients' lives.

To shift the dialogue and demonstrate a more united front of the research, clinical and patient support communities against the status quo, we invite you to "endorse" our letter by sending your own message of support to CDC at SolveCFS@cfids.org or by responding to this Action Alert! More than 550 people have responded so far, but more letters are needed.

The deadline for comments is today, June 30. CDC has committed to keep its e-mail address functioning after this date, so even if you can't act today, please do so as soon as possible. Share this message with friends and family and ask them to do the same.

$20 million spent over the next five years is hardly sufficient to address the public health challenges that CFS presents, but it's too much money to waste on a weak, ineffective CDC research plan.

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