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Tag Archives: post-exertional malaise
IOM: The Big Day
On February 10th, the Institute of Medicine committee will release its report Beyond ME/CFS: Redefining an Illness. The release event will be webcast at 11am Eastern. The report contents are under embargo until the release, although rumors are flying about … Continue reading
Posted in Advocacy, Commentary, Research
Tagged case definition, DHHS, government, IOM, IOM panel, orthostatic intolerance, pain, politics, post-exertional malaise, psychosocial, recommendations, speaking out
19 Comments
CFSAC Meets P2P
Mary Dimmock has been kind enough to provide this post and transcript of the CFS Advisory Committee’s discussion of the P2P report this week. Since the Executive Summary for the P2P ME/CFS Workshop was published on December 18, 2014, a … Continue reading
Posted in Advocacy
Tagged action, case definition, CFSAC, DHHS, funding, government, NIH, occupy, P2P, politics, post-exertional malaise, priorities, recommendations, researchers, speaking out
8 Comments
P2P: Eating Your Cake
In a surprising move at the P2P Workshop yesterday, Dr. Beth Smith from the Evidence Practice Center (authors of the systematic evidence review) suggested: “Consider retiring the Oxford case definition.” Why was this remarkable? Because the systematic evidence review had … Continue reading
Posted in Advocacy, Commentary, Research
Tagged case definition, DHHS, government, NIH, occupy, P2P, politics, post-exertional malaise, recommendations, researchers, speaking out
48 Comments
The Oxford Problem
Today, I’m very pleased to share this guest post by Chris Heppner. I loved Oxford when there as undergraduate (1951-4)–truly a city of dreaming spires, peaceful libraries, walks in the country to a lovely old pub by a waterfall with … Continue reading
Posted in Commentary, Research
Tagged AHRQ, case definition, CBT, GET, government, NIH, occupy, Oxford, P2P, politics, post-exertional malaise, psychosocial, speaking out
10 Comments
They Know What They’re Doing (Not)
This post comes via Mary Dimmock, with assistance from Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution to Mary Dimmock. Last week, Jennie Spotila and Erica Verillo posted summaries of … Continue reading
Posted in Advocacy, Commentary
Tagged action, AHRQ, case definition, CBT, DHHS, drugs, evidence review, funding, GET, government, guest post, NIH, occupy, P2P, politics, post-exertional malaise, priorities, recommendations, speaking out, treatment
18 Comments
Draft Systematic Review is UP
The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS has been published. This review is extraordinarily important because it is being presented to the P2P Panel in a closed door session any day now. This review will … Continue reading
Posted in Advocacy
Tagged action, biomarkers, case definition, CBT, CPET, DHHS, drugs, exercise, GET, government, NIH, occupy, orthostatic intolerance, P2P, pacing, pain, politics, post-exertional malaise, priorities, psychosocial, recommendations, researchers, speaking out, stress, treatment
7 Comments
IOM: Sum of the Whole Matter
The IOM panel on ME/CFS held its second (and likely final) public meeting on May 5, 2014. On display near the meeting room was this painting by Robert Van Vranken: Untitled (Everything at once, or one thing at a time?). … Continue reading
Posted in Advocacy
Tagged action, case definition, cognitive dysfunction, government, IOM, living with, occupy, politics, post-exertional malaise, protest, speaking out
12 Comments
Protocol for Disaster?
The study protocol for the systematic review of ME/CFS was posted by the Agency for Healthcare and Research Quality yesterday. It’s a recipe for disaster on its own, and within the broader context of the NIH P2P Workshop it’s even … Continue reading
Posted in Advocacy, Commentary, Research
Tagged AHRQ, case definition, CBT, DHHS, drugs, exercise, GET, government, IOM, NIH, P2P, politics, post-exertional malaise, priorities, recommendations, researchers, speaking out, treatment
44 Comments
Reading Tea Leaves
In a report issued on March 12, the IOM panel tasked with creating a new case definition for Gulf War Illness declined to do so. This is the first time the IOM was attempting to create a disease case definition, … Continue reading
Posted in Advocacy
Tagged case definition, IOM, IOM panel, politics, post-exertional malaise, psychosocial, recommendations, researchers, speaking out
4 Comments
IOM: Report Card
It’s here. A new case definition and a new name. It will take some time for me to get through the 300 page report and prepare a more detailed analysis. But based on the press conference and summary, how did … Continue reading →