How to Oppose NIH/P2P The purpose of the NIH/P2P is to redefine ME/CFS; in particular, they intend to redefine a case definition for use in research. I anticipate that NIH/P2P, following evidence based literature, will define ME/CFS as a psychological illness (perhaps Chronic Multisymptom Illness) and recommend further research into psychological treatments such as CBT and GET. Experts in ME/CFS have already agreed on such a definition (CCC) and they have also agreed to refine it as necessary. In addition, the experts have urged HHS and other government agencies to adopt the CCC and use the money saved for biomedical research on ME/CFS instead. (See: mecfsforums/wiki/Open_Letter_to_Hon._Kathleen_Sebelius_9/23/2013 ). I intend to continue to protest the NIH/P2P. I believe those of us who oppose the NIH/P2P need to voice our opposition. I do not intend to offer suggestions because that is participation and the government can claim that we have agreed with the NIH/P2P by engaging with them. I intend to state my opposition and give the reasons I oppose the NIH/P2P—and why I will not be attending and participating. If you sign up to participate in this farce of a meeting, you will be giving NIH cover to say that patients agree with what they are doing. Dont help them bury us! The NIH/P2P workshop will not allow for anyone to speak in opposition. The only public comment scheduled is by Robert Miller, who has already publicly stated his support of NIH/P2P; and he has, in fact, attended a NIH workshop for planning the NIH/P2.
Posted on: Tue, 09 Sep 2014 14:19:58 +0000
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