By Mary Dimmock and Jennie Spotila This is a cross-post originally published in Jennie Spotila’s blog, Occupy ME. In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its 2014 ME/CFS evidence review. This Addendum downgrades the conclusions on the effectiveness
A tribunal panel has ordered Queen Mary University of London (QMUL) to release anonymised data from the PACE trial to Mr. Alem Matthees, a patient who requested it. The ruling has important implications for CFS patients both in the UK and worldwide. The David-vs-Goliath outcome represents the first successful attempt to begin to counter the
This is the third article in our series on the #MEAction RFI polling data. Click here for Part I and here for Part II. Clinical and Research Testing Perhaps unsurprisingly given Davis’s recent progress, metabolomics were what patients believed ME research needs to progress swiftly; two-day exercise testing was rated as less important, perhaps due
This is the second part of the RFI Poll Report. To see the Part 1, click here. The Need for an Inclusive Model of Research Severe patients The inclusion of severe patients in research emerged as a theme in stakeholder comments. Severe patients will likely present with gross biological abnormalities, and therefore present a significant
As reported earlier this week, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met with Dr. Karen DeSalvo, Acting Assistant Secretary for Health on August 1. The purpose of the meeting was to impress upon Dr. DeSalvo how woefully inadequate HHS’s response to this disease has been – that it is still
Want to get involved, but aren’t sure how to proceed? Here is a living document you can use to determine where protests are happening near you, how to register, and who to contact to learn about the #MillionsMissing protests happening around the world. Canada Elizabeth Sanchez and Scott Simpson : [email protected] Germany Daniel Hattesohl: [email protected]
Last week, MEAction announced that Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock would be meeting with Dr. Karen DeSalvo, Assistant Secretary of Health on August 1. The purpose of that meeting, which happened yesterday, was to impress upon Dr. DeSalvo how woefully inadequate HHS’s response to this disease has been and
Note: the deadline has been extended until next Friday, August 12! We are soliciting feedback from the entire community on the #MillionsMissing US Protest Demands, which were drafted last spring for the May protest. You can read them in full here: http://millionsmissing.meaction.net/protest-demands The goal of this process is to revise the demands and adopt them
A meeting with Karen B. DeSalvo, the Acting Assistant Secretary for Health at the US Health and Human Services (HHS) and the National Coordinator for Health Information Technology, will be held this August. The meeting was arranged in direct response to a request made around the May 2016 #MillionsMissing protests. In May 2016, #MillionsMissing protests
This Sunday at 4pm ET, US organizers for the September #MillionsMissing protests will be meeting together to plan, mobilize, and connect with other protesters. Those who have volunteered to lead a city protest are highly encouraged to attend; those just wanting to learn more about the protests are also very welcome. If this is the
