Last month, RECOVER TLC met at NIH headquarters in Bethesda. The goal was to initiate a drug development strategy for Long COVID clinical trials. Now, RECOVER TLC has opened the RECOVER-TLC Intervention Information Request Form, where you can make suggestions about which drugs and other interventions to trial! Anyone can submit a therapeutic for consideration
Breaking news! #MEAction has just been awarded a 3-year grant by the Long COVID Program of the Minnesota Department of Health (MDH) to address the impacts of Long COVID, ME/CFS, and related conditions, across the state and to serve disproportionately impacted communities. #MEAction’s work will focus on better connecting Minnesotans with ME/CFS, Long COVID, and
#MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) to offer creative writing workshops for people with ME and Long COVID**. WGI has graciously donated their time to offer these writer workshops through personal mentorship with the writers of the #MEAction community! The workshops consist of three sessions during the
#MEAction is thrilled to share the incredible work our State Chapters have been up to over the past couple of months! They continue to amaze us daily with their dedication and hard work to bring awareness to the ME community. Read more about their success stories: California: The University of California has added some disclaimers
We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise
RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST! RSVP & Get Zoom Link Here We have always had to be creative in telling Our Story – the story of M.E. – to the world
Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the
#MEAction Colorado’s first legislative effort in Colorado began with an ME/CFS day declaration in the Colorado Legislature on February 25, 2020. Representative Alex Valdez read into the legislative record a proclamation about the presence of and deleterious effects of ME in Colorado. This effort was relatively easy to accomplish and consisted of finding a representative
There has been so much happening since the #MillionsMissing protest on September 19th. We’ve shared some of our amazing press wins. You tuned into the live stream on Twitter. You saw the article that cover our government’s response. We are thrilled. And we want to take a moment to acknowledge all of the amazing activism
Since 2015, the 1-2.5 million Americans with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been effectively nonexistent, at least as far as US disease tracking systems are concerned. Americans don’t experience any morbidity (suffering, impairment) from ME/CFS. They can’t die with ME/CFS. Nobody develops ME/CFS following an acute COVID-19 infection – despite all the evidence that
