Tell CDC To Change Their Research Plans for ME/CFS!

I received an email the other day from the CFIDS Association regarding their hard work in trying to get more research efforts from the CDC on ME/CFS.  Show your support by leaving your comments to the CDC no later than June 30th.  Please read the email I received from the CFIDS Association in its entirety and the links are provided where you can leave your comments and read more on this ongoing subject. 

Dear Supporter,
 
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” the attached letter by sending your own message of support to CDC at CFSResearchPlan@cdc.gov or by responding to the Action Alert! posted at http://capwiz.com/cfids/issues/alert/?alertid=13632546&type=CU.
 

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
The CFIDS Association of America
 

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Comments

  1. Great info, very interesting. Rgds. Kenton Bruice MD

  2. I decided to do my own one. 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:
    http://tinyurl.com/TKonCDCsplans1 and http://tinyurl.com/TKonCDCsplans2

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