The New York State Department of Health has recently established a new webpage about Myalgic Encephalomyelitis (ME) on its website, thanks to the hard work of #MEAction activists. New York is one of only three states in the U.S. that has a page on ME. (Illinois and Wisconsin have some information about chronic fatigue syndrome.)
Occupy M.E. describes the NIH’s current plan to address the crisis of Myalgic Encephalomyelitis as “do a little and wait.” Blogger Jennie Spotila describes the agency’s plan, which was found buried in the NIH 2019 budget request sent to Congress, as follows: NIH is going to wait for the new Collaborative Research Centers to lead
The logic is crystal clear for why the National Institutes of Health (NIH) should make a serious commitment to funding research for ME/CFS. The disease affects a high proportion of Americans – estimates range from 1 to 2.5 million people; the disease is highly debilitating, leaving 75 percent unable to work and 25-29
Samuel Wales, who has had ME for many years, has kindly allowed us to republish his latest blog post, which can be found here. Intro My previous post contains my open letter to Francis Collins. It got a lot of readers. Many were from NIH. But who exactly at NIH is listening? I was hoping
The U.S. Chronic Fatigue Advisory Committee (CFSAC) is looking to fill six vacant positions as voting members: One position for patients or caregivers affected by ME/CFS One position for an individual with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with ME/CFS
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
