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
#MEAction has been a leader in the fight for health equity for people with Myalgic Encephalomyelitis for the past six years, as led by our visionary co-founder and first executive director, Jen Brea, and then by our current executive director, Julia Miele, over the past year. Julia has helped our growing organization streamline our processes,
This year, we are excited to announce that #MillionsMissing will be held in two parts: May and September! #MillionsMissing is about demonstrating our community’s collective refusal to let the stories of people with ME be erased, or access to healthcare and medical research blocked. We protest against all barriers to justice for the growing community
NICE news for Scotland! Throughout the development of the NICE guideline for ME/CFS, #MEAction Scotland has been in regular contact with the Scottish Government about the change needed in Scotland. Now that the guideline has been published, the government has got in touch to involve us in a development. What is the plan?The government plans
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
As you know, Adriane Tillman, has been working extremely hard, alongside her team of volunteers to get featured in the press and she has tapped into a new audience with her latest press hit in Infection Control Today’s article, “Long COVID Shouldn’t Have Taken Us by Surprise”, by Frank Diamond. This new audience includes researchers
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
MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research agenda lacks a clear plan for how to accurately identify or consistently track the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases among patients with Long COVID. This is of particular importance because a sizable fraction
What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding from clinicians, NIH’s and CDC’s low budgetary commitments, and a world of challenges navigating disability on top of symptoms. It’s no exaggeration to say that 2020 and 2021 changed the world – and the world of chronic,
As we enter the holidays we have a positive development to report coming out of yesterday’s ME/CFS stakeholder call with the U.S. Centers for Disease Control and Prevention (CDC). CDC has announced that it will not publish a systematic evidence review of ME/CFS treatments by the Oregon Health Science University Evidence-based Practice Center (EPC) in
