Dozens of people with Myalgic Encephalomyelitis and family members testified about the disease last December before the government agency responsible for advising Health and Human Services on ME/CFS – the Chronic Fatigue Syndrome Advisory Committee. Speaker after speaker testified about the incredible neglect from the government for the millions of Americans suffering for decades without adequate
We need you! #MEAction is looking for volunteers who can help our team ensure that the CFSAC recommendations are implemented, and don’t fall through the bureaucratic cracks. If you’ve worked for government agencies before, that is a bonus. We welcome all volunteers who can assist with keeping an eye on the work of this important
A Medical Education Working Group has been created by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to provide recommendations to the U.S. Secretary of Health on educating healthcare providers on ME/CFS. The working group plans to disseminate resources and clinical guidance to healthcare providers, as well as provide trainings and continuing education events. The working
This guide will provide you with ideas for hosting your own impactful screening of Unrest that will be well-attended, well-publicized and garner support from important institutions in your community for Myalgic Encephalomyelitis (ME). Community screenings of Unrest have taken place all over the globe. While all successful events can look differently, below is an
As the U.K. prepares to review its national clinical guidelines for ME, it is high-time that the National Institute for Health and Care Excellence (NICE) listens to the evidence showing that Graded Exercise Therapy (GET) is harming people with Myalgic Encephalomyelitis. Listen to the words of the words of the director of the National Institute of
The Stanford Medicine X conference is offering a scholarship to attend the April 28-29, 2018 conference, and receive funding for airfare, hotel, and meals. The ePatient scholarship is open to both patients and caregivers who are engaged or empowered. Applications are due Nov. 1 at 5 p.m. PT (8 p.m. ET). Apply now Ryan Prior talks
Open Medicine Foundation is excited to launch Triple Giving Tuesday OMF which will run from Tuesday, Oct. 17, through Tuesday, Nov. 28. Wonderful, caring, and compassionate OMF supporters, Jack and Dilla Cosgrove and family, have graciously pledged a $100,000 matching gift to encourage world-wide support of Triple Giving Tuesday OMF. Chris shares with you why
Johanna Kaiser, a person with ME, sent this open letter over Labor Day to the director of the National Institutes of Health (NIH), Dr. Francis Collins, and the director of National Institute of Neurological Disorders (NINDS).
If you are hosting a screening of Unrest in your community, you will want to reach out to your local press about covering the screening. Below are some training resources to help you prepare to speak to the media. These tools were developed by #MEAction for the #MillionsMissing Day of Action in Sept. 2017 in
Leading scientists presented their research on ME/CFS at the day-long Community Symposium on the Molecular Basis of ME/CFS* at Stanford on Aug. 12. The researchers spoke at length about the complicated biological processes involved, their study results and the limitations of their conclusions presented thus far. The amount of science on ME/CFS presented was overwhelming,
