Friday, June 26, 2009

Time Sensitive: CFIDS Advocacy

The CFIDS Association of America just sent out the following action alert. Please take action if you are able.

We need your help TODAY

Take Action!

Tell planners that the status quo isn't good 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, 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 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 or by responding to this Action Alert!

The deadline for comments is Tuesday, June 30. CDC has committed to keep its e-mail address functioning after this date, so even if you can't act before June 30, 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

Take Action! It's easy to do and takes less than a minute. You can make a difference!


Anonymous said...

Hi Alyson,

Tom Kindlon here - I was the Irish guy who spoke over the phone for the CDC meeting.

Anyway, I decided to do my own submission. Amongst other things it includes information on
10 ME/CFS surveys including some data from the CAA's 1999 survey. These surveys show the high rates of adverse reactions associated with GET (and CBT based on GET).

High rates of adverse reactions to treatments are usually taken very seriously but it looks like the CDC is going to start promoting GET
and CBT based on GET more now. It's quite long so is in two parts: and

alyson said...

Thanks for writing. The more we advocates make noise, the more people will have to listen.