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Tag Archives: P2P
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
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, David Murray, Francis Collins, Institute of Medicine, IOM, James Anderson, Larry Tabak, ME, ME/CFS, Myalgic Encephalomyelitis, Nancy Lee, NIH, P2P, Paris Watson, Pathways to Prevention, Susan Maier, Wilma Peterman Cross
50 Comments
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
Posted in Uncategorized
Tagged AHRQ, Beth Collins Sharp, CFS, Chronic Fatigue Syndrome, David Murray, Fasten your Seatbelts, FOIA, Francis Collins, Freedom of Information Act, HHS, Institute of Medicine, IOM, James Anderson, Mariela Shirley, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, ORWH, P2P, Paris Watson, Pathways to Prevention, Susan Maier, Talking Points, TPs
25 Comments
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
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, Controversy, EbMW, Evidence-base, Fred Friedberg, ME, ME/CFS, Myalgic Encephalomyelitis, P2P, Paris Watson, Pathways to Preve, Rebranding, Susan Maier, Woot Woot
52 Comments
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
Posted in Uncategorized
Tagged Buzzfeed, CFS, Chronic Fatigue Syndrome, David Tuller, FOIA, Freedom of Information Act, ME, ME/CFS, Myalgic Encephalomyelitis, Oregon Health and Science University, OSHU, P2P, Paris Watson, Pathways to Prevention, Susan Maier, Suzanne Vernon, Working Group, Workshop
20 Comments
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
Posted in Uncategorized
Tagged AHRQ, CFS, Dr. Francis Collins, Dr. Kronick, Galileo Galilei, HHS, Inquisition, Jury Model, ME, ME/CFS, Ms. Sylvia Burwell, NIH, P2P, Pathways to Prevention, Witchcraft Trials
15 Comments
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
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
Posted in Uncategorized
Tagged CFS, EbMW, FOIA, ME, ME/CFS, NIH, OSHU, P2P, Pathways to Prevention
15 Comments
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
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, FOIA, HHS, Jury Model, ME, Myalgic Encephalomyelitis, NIH, P2P, Protest
13 Comments
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
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, P2P, Pathways to Prevention, Systematic Review Protocol
9 Comments
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
Posted in Uncategorized
Tagged Albert Einstein, CFS, Chronic Fatigue Syndrome, Clarence Darrow, Institue of Medicine, IOM Meeting, January 27 2014, Jury Model, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, OHSU, Oregon Health and Science University, P2P, Pathways to Prevention, Susan Maier, Task Order
58 Comments
Thoughts About M.E. 