Tag Archives: P2P

Oops, they did it again! CFSAC violates FACA

This is a post about the violation of federal law by CFSAC yet again. This is also a post about how HHS has controlled CFSAC’s input on the P2P report. CFSAC violated FACA, the Federal Advisory Committee Act, again. Not … Continue reading

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P2P FOIA Documents, Part 7—Collins, Murray and Maier: Trouble in NIH Paradise

David Murray’s (Director of NIH’s Office of Disease Prevention) noticing of a ProHealth blog entry started an avalanche of bizarre email exchanges within NIH that included, among others, Francis Collins, James Anderson and Larry Tabak. I received these emails after winning my … Continue reading

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P2P FOIA Documents, Part 6—”File all these responses. No need to answer them directly.”

Here are more P2P emails that were produced to me after I won my IOM FOIA lawsuit. Today’s documents are NIH and AHRQ emails relating to inquiries from the public regarding the ME/CFS P2P program and the “TPs,” the talking points NIH developed … Continue reading

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P2P FOIA Documents, Part 5—ME/CFS P2P Violates NIH Rules, Woot Woot!

Starting in August of last, year, NIH went through the elaborate process of rebranding the program that had until then been known as the Evidence-based Methodology Workshop (“EbMW”). The new shiny brand that emerged after an enormous bureaucratic effort—whose necessity is less … Continue reading

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P2P FOIA Documents, Part 4–NIH: Neither Patients Nor Science Meant to Be Part of P2P

The documents I am releasing today at this link relate to the P2P working group. I published some of them previously in my P2P FOIA Documents, Part 2: “We also recently had a FOIA request on CFS.” But to I thought t would … Continue reading

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

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 … Continue reading

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P2P FOIA Documents, Part 2: “We also recently had a FOIA request on CFS”

I am continuing to release documents (this time, emails only) I received from HHS in response to my P2P FOIA request. A lot of these email exchanges will show clearly the disdain, condescension and hostility towards our community. They also … Continue reading

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P2P FOIA Documents, Part 1

Earlier in the year, I filed a FOIA request with HHS for documents relating to the ME/CFS P2P. Although I received some fairly unremarkable and some heavily redacted documents a while ago, I received the vast majority of documents, which … Continue reading

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P2P: Don’t Buy the Hype! Protest!

The reason why I will not cooperate with, or participate or engage in, the P2P process is very simple. HHS and NIH have shown time and time again that they do not have ME patients’ interest at heart. This disturbing … Continue reading

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P2P Review Protocol: Still No Transparency

Today, what seems to be the Systematic Review Protocol for the Pathways to Prevention (“P2P”) was published online.The secrecy continues: The publication does not include the names of the technical experts and NIH refused to divulge those names in response to … Continue reading

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P2P: “Patients to Purgatory” or the Jury Model Stood on its Head

“They don’t know. They don’t know anything.”—Susan Maier about the P2P panel members On January 27, 2014, the Institute of Medicine (“IOM”) held its first out of five meetings relating to the development of diagnostic criteria for ME/CFS. It was … Continue reading

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