CFIDS Association president and CEO K. Kimberly McCleary

Advocates Respond to CDC’s Research Plan

By Kim McCleary
President & CEO
The CFIDS Association of America

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 have 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 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. We 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 invited individuals and organizations to "endorse" the letter responding to the Action Alert! posted at
http://capwiz.com/cfids/issues/alert/?alertid=13632546&type=CU. More than 1,000 advocates responded. Thank you!!!
 
$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. Enough is enough.

Links to other recent CDC-related correspondence and testimony:
October 2008 Testimony by Kim McCleary at the Federal CFS Advisory Committee meeting [http://www.cfids.org/advocacy/testimony-mccleary-oct2008.pdf]

CFIDS Association Letter to Acting CDC Director (March 11, 2009) [http://www.cfids.org/cfidslink/2009/050607d.pdf]

CDC’s Request for Input on Its 5-year Research Plan (April 2009) [http://www.cdc.gov/cfs/meetings/2009_04.htm]

Report on the April 27, 2009 Public Meeting at CDC [http://www.cfids.org/cfidslink/2009/050607.asp]

Testimony Delivered by Kim McCleary at April 27, 2009 Public Meeting at CDC [http://www.cfids.org/cfidslink/2009/050607b.pdf]

May 2009 Written Testimony Submitted by Kim McCleary to CFS Advisory Committee [http://www.cfids.org/cfidslink/2009/060309b.pdf]

Report on the May 27-28, 2009 Meeting of the CFS Advisory Committee [http://www.cfids.org/cfidslink/2009/060309.asp]

Video and Podcast of the May 27-28, 2009 Meeting of the CFS Advisory Committee [http://videocast.nih.gov/PastEvents.asp?c=39]

Editorial about the May 27-28, 2009 Meeting of the CFS Advisory Committee [http://www.cfids.org/cfidslink/2009/060301.asp]

CDC’s Draft Five-Year Research Plan (May 30, 2009) [http://www.cdc.gov/cfs/draft_5yr_research_plan.htm]

CFIDS Association Response to CDC’s Research Plan (June 26, 2009) [http://www.cfids.org/temp/research-plan-response.pdf]

CDC's response to the Association's detailed recommendations (August 4, 2009)
http://www.cfids.org/temp/hhs-king-8409.pdf

CDC aknowledges input on its plan (September 11, 2009)
http://www.cdc.gov/cfs/input_research_plan.htm

Association update on its CDC activities (September 11, 2009)
http://www.cfids.org/advocacy/2009/gac_091109.asp

Updated September 11, 2009

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