P2P: “Pleased to Participate?” Not. Count me out!

P2P: “Pleased to Participate?” Not. Count me out!
Originally posted Oct 21st, 2014

Jeanette’s blog post about why she was one of the many patients who refused to participate in the NIH P2P!

Many thanks to Jeannette!

Thoughts About M.E.

Here is my open protest letter to Secretary Burwell (with carbon copies to Dr. Collins and Dr. Frieden) regarding the ME/CFS P2P program. As you will note, I am not engaging substantively at all. Instead, I am protesting the process all the way. Anybody should feel free to borrow the language in this letter in whole or in part for their own letter in this ongoing protest campaign, which can be sent to:

Sylvia.Burwell@hhs.gov

cc:

Francis.Collins@nih.hhs.gov

Tomfrieden@cdc.gov

Dear Secretary Burwell,

AHRQ has asked for public comments on the draft “evidence review” report prepared for the agency as part of the NIH-driven ME/CFS Pathways to Prevention (“P2P”) program. I am one of many patients who refuse to participate in the commenting process. Count me out!

In other words, let me stress, for the avoidance of any doubt, that this open letter is in no way to be construed as participation in…

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About The Other Side Of The Stretcher

Nurse turned patient, but not by choice. I was became a Registered Nurse in 1985 when I was 21 years old. That career was cut short the end of 1994 when I was unable to work anymore because of the illness M.E. or Myalgic Encephalomyelitis. I have 3 adult children including twins, A daughter and 2 sons. View all posts by The Other Side Of The Stretcher

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