What would have been the outcome of the PACE trial had the investigators followed its original protocol instead of relaxing the criteria for “recovery” as the trial progressed? Researchers have just published a paper seeking to answer this question in a reanalysis of the PACE trial based on its original protocol. The authors concluded that
Author: Dutch Citizens’ Initiative “Recognize ME” (Group ME-TheHague). In the release of its much-anticipated report, the Dutch Health Council sees no reason to advise the use of Graded Exercise Therapy for people with Myalgic Encephalomyelitis / chronic fatigue syndrome. However, the report does not go as far as to provide a rebuttal of GET or
Urge your state health department to track myalgic encephalomyelitis/ chronic fatigue syndrome!
Call-to-Action: Please email your state health department and request they track ME/CFS (we have provided the email script for your convenience). A national conference will take place mid-April where states will decide which diseases to track as part of its Behavioral Risk Factor Surveillance System (BRFSS).
If government officials don’t track ME/CFS, how will they know that it is a problem!
The first draft of the ME/CFS Common Data Elements (CDE) project is now available to review, conducted by the National Institute of Neurological Disorders and Stroke (NINDS). Read the first draft of the Common Data Elements for ME/CFS here. The purpose of the CDE Project is to standardize the collection of investigational data in order to facilitate
As was previously reported by #MEAction, Dr Sarah Myhill has made a formal complaint to the General Medical Council (GMC) about the authors of the PACE trial. In addition to asking people to write to the Chairman of the GMC, she has now set up an online petition which people can sign if they wish
Members of Parliament heard about the flaws of the PACE Trial – and its devastating effects on people with Myalgic Encephalomyelitis (ME) – in a Westminster Hall debate today. Twenty-six MPs attended the debate.
A Westminster Hall debate on the PACE trial will take place on Tuesday, 20th Feb., from 11 to 11:30 a.m. Carol Monaghan MP has secured the debate. Watch the Debate or Attend the Debate Follow the debate on Twitter by following @meactnetuk or @MEActNet. The debate will discuss the flawed science behind PACE, and how it has affected policy
I read “How To Survive A Plague: The Inside Story of How Citizens and Science Tamed AIDS” by David France to learn lessons from the AIDS movement that could help ME activism, and to summarize it for people without the energy and/or time to read it. The book tells an amazing story but it is
A member of #MEAction Network Australia has written a primer, outlining the flaws in the GET research and explaining why GET is likely to be harmful for people with ME/CFS.
A Westminster Hall debate on the PACE trial has been scheduled for Tuesday, 20th Feb., 11-11:30 a.m. Carol Monaghan MP has secured the debate. Please urge your MP to attend the Westminster Hall debate to learn about the flawed science behind PACE, and how it has affected policy on Myalgic Encephalomyelitis (ME) in the UK,
