People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been concerned since the start of the coronavirus pandemic that a subset of COVID-19 patients will go on to develop ME/CFS. Unfortunately, we are already hearing from many COVID-19 survivors around the world that they are continuing to experience debilitating symptoms for many months, even after “mild”
Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. The Body Politic COVID-19 Support Group surveyed over 600 participants who had experienced/were experiencing COVID-19 symptoms for at least two weeks, revealing insights
This article references the 2019 Postcards to Doctors initiative. Find the page for Postcards to Doctors 2020 here. We’re incredibly pleased to announce that we not only met but exceeded our initial goal of sending 6,000 postcards out into the world! And we could not have done it without you. As always, I am bowled over
Host a Postcards to Doctors party this holiday season! And announcing: #MEAction’s first Pinterest boards! Together, the #MEAction community has made the Postcards to Doctors initiative an incredible success: there have been approximately 5,500 requests for postcards to doctors across 43 states! We are so thankful to see people across the country step up to
#MEAction’s Postcards to Doctors initiative has continued to be an incredible success! Thanks to the hard work of the #MEAction community we have sent postcards to nearly 6,000 clinicians across the United States. We could not have done this without the invaluable contributions from the artists who designed our postcards. #MEAction would like to
Great news! Postcards to Doctors has relaunched as of today, October 1! You can now request new postcards and addresses here. If you requested postcards or addresses during the month of September, we’ve resumed generating addresses and sending postcards as of today, and you should receive yours within the next few weeks. Want to learn
The story so far NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis. With only a few weeks’ turn-around, the #MEAction NIH working group produced a compelling response based on information conveyed in
April is going to be an incredibly exciting month for advocacy and for research into ME! The NIH is hosting a conference on ME in early April along with a Young Investigators Workshop specifically geared towards early-career investigators with interest in ME. Concurrently, there will be a Congressional lobbying push hosted by #MEAction and SMCI
As many of you know, #MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes of Health (NIH), Dr. Francis Collins, on December 7 to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME. To read about the details of the meeting, click here.
This Giving Tuesday, I’ve got some good science to show why you should donate to #MEAction and other advocacy organizations! The study Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy sets out to discuss single-disease interest groups and their influence on US politics: “This article explores their effects on federal medical research priority-setting.