Tell Secretary Burwell to Stop the P2P and Adopt the CCC!
Secretary Burwell, I am one of the multitudes of ME (myalgic encephalomyelitis) patients, advocates and stakeholders who is deeply concerned by the NIH Pathways to Prevention Workshop for ME/CFS (P2P). The AHRQ Draft Report was posted September, 2014, and it’s as bad as I thought it would be. I have not sent comments to the AHRQ comment address on purpose, as I am boycotting participation in the process. This message is my protest against the P2P workshop. The P2P is unscientific as it does not include any ME experts. The jury model is ludicrous for this application. They are not listening to stakeholders in any substantive way. In short, the entire process is set up to fail. The results of the P2P will harm ME patients greatly for decades to come. I demand that you stop the P2P process now. I demand that you adopt the Canadian Consensus Criteria definition for ME as originally requested by our expert clinicians and researchers in September, 2013. I demand that you restore ME/CFS research funding wasted by conducting the P2P. cc: Dr. Francis Collins, Director of NIH Dr. Richard Kronick, Director AHRQ Dr. Thomas Frieden, Director of CDC Dr. Wanda Jones, Acting Assistant Secretary for Health, HHS Elizabeth R. Unger, Branch Chief at CDC Susan Maier, Deputy Director ORWH Senate - Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies House - Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
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