-
Join 1,461 other subscribers
-
Recent Posts
- A New Direction
- The #CoyneEffect: Is the ME Community Stepping Up or Backing Down?
- Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits
- Standing Up to Coyne and Against Unfair Treatment of ME Advocates
- Has the “Coyne of the Realm” been devalued?
- Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?
- Deadline for Comments on Proposed ERISA Disability Regs Fast Approaching: Additional Guidance
- Proposed ERISA Disability Regs: Instructions and Sample for Public Comments
- Department of Labor Proposes Lowering Bar for ERISA Disability Claims, Requests Public Comments
- The Scientifically Challenged UK Media Strikes Back
Archives
- September 2016
- March 2016
- February 2016
- January 2016
- December 2015
- November 2015
- October 2015
- September 2015
- August 2015
- April 2015
- February 2015
- January 2015
- December 2014
- November 2014
- October 2014
- September 2014
- June 2014
- May 2014
- April 2014
- March 2014
- February 2014
- January 2014
- December 2013
- November 2013
- October 2013
- September 2013
- August 2013
- May 2013
- April 2013
- February 2013
- January 2013
- December 2012
- September 2012
- May 2012
- February 2012
- November 2011
- October 2011
- August 2011
- July 2011
- June 2011
- May 2011
- April 2011
Blogs
- Be a light, CFS Awareness
- CFS Central
- CFS Patient Advocate
- CFS Treatment Guide
- dx revision watch
- Just ME
- No Poster Girl
- Occupy CFS
- Onward Through the Fog
- Shoutout About ME
- Slightly Alive
- The CFS Report
- The Kafka Pandemic
- The New Ampligen Diaries
- Twenty Years and Counting
- Utting-Wolff Spouts
- Valerie Eliot Smith
- X Rx Blog
Disability Resources
Forums
Severe M.E.
Support Groups
Websites
Tag Archives: Pathways to Prevention
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 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 FOIA Documents, Part 3—NIH Organizational Meeting: ME/CFS is a “Burden” for Patients
Here is another batch from the P2P documents NIH produced in response to my P2P FOIA request. These are documents relating to the P2P (then called the Evidence-based Methodology Workshop) organizational meeting. The meeting took place on February 19, 2013. It … Continue reading
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 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