Last week, #MEAction Scotland volunteers held the first in a series of community calls. The online meetings will take place quarterly and have been set up to connect us with more people with ME and allies across Scotland. Our first call was a success! We were delighted to be joined by a mix of old
“Madeline” is a woman who has been suffering with a post viral syndrome for 40 years which includes Severe Myalgic Encephalomyelitis (ME) and fibromyalgia. Madeline lives in British Columbia, Canada and she urgently needs your help. There is a need to seek alternative medical treatments due to the lack of coverage for treatments within the
In honor of Black History Month, #MEAction has gathered a collection of articles, videos, and groups that features Black members of our community. We are also sharing links to articles and videos that explore the importance of Black disability history. We invite you to celebrate and honor the contributions of these Black leaders in our
#MEAction continues to prioritize getting ME in the press. We are very thankful to be featured in USA Today, North Jersey, New York Times, Infection Control Today, Times-Herald and Well+Good, all in the last few weeks! Our press reach continues to focus on multiple audiences, including scientists and medical practitioners, the disability and chronic illness
No Increase in Funding in Latest Plan for ME/CFS Collaborative Research Centers The National Institutes of Health (NIH) has announced their intent to extend the ME/CFS Collaborative Research Center (CRC) program, first launched in 2017, beyond its initial 5-year lifetime. They have issued a $7.1M annual funding opportunity for the ME/CFS CRCs, and another $500K
UPDATE: The research team have let us know that they’ve received a huge response to this request and they now have the information they need. They’ll be in touch with people individually if they are eligible to participate in the study. If you got involved, thanks for your support! Researchers at the University of the
Today #MEAction joins the community in mourning the loss of Dr. Ronald G. Tompkins, MD, ScD, who passed away this week. Ron Tompkins was a clinician, clinical researcher, and friend and ally to people with ME. He was the Sumner M. Redstone Professor of Surgery at Harvard Medical School, Founding Director of the Center for
Two NICE ME/CFS guideline committee members joined #MEAction for a community call, to provide their insight into the guideline process and answer questions. Adam Lowe is a person with ME and has been supporter of various ME organisations, including #MEAction UK and Science for ME. He was one of five lay members on the committee.
Darren Randon, co-founder of Well Versed Ink, is seeking new members for an online group for UK-based Black and Black-mixed adults living with diagnosed or suspected ME or Long-Covid. Formal diagnosis is not required. The group meets every other Sunday from 1-2pm. It provides a safe space to share experiences and create community, with the
Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The National Institutes of Health (NIH) has many questions to answer about its lack of tangible progress or strategic acceleration of medical research for people with ME. Read Our Questions for NIH ME/CFS research opportunity being missed
