Outreach to BIPOC communities has always been a challenge in ME/CFS. In a disease where diagnosis is so hard to come by, who gets a diagnosis is not a matter of prevalence but a matter of privilege. While community-based studies show just as many Black people get ME as white people, if not more, white
We are thrilled to see that the ME/CFS Clinician Coalition has released recommendations for medical providers on specific tests and treatments to use for caring for people with ME/CFS.
This is an exciting opportunity to set research priorities for ME, and could be the next big step towards improvinging research funding in the UK.
Over the past year #MEAction has been focusing on reaching out to the national press to make sure journalists and medical professionals are educated about ME and can provide the correct context when writing articles about long COVID and long haulers. Our efforts have paid off and we continue to receive coverage and new opportunities
Last November, I announced that I was stepping down as Executive Director to focus on my health and well-being. Since then, our entire Board of Directors have led a wide search for the right person to lead #MEAction into the future.
#MEAction is excited to share more work from the Writing from our ME Lives writing group!
#MEAction is excited to share two pieces of work from the Writing From Our ME Lives writing group. We will be sharing more work in the coming days! Hope you enjoy their work. If you are interested in joining the next Writing From Our ME Lives meeting, they meet on every Thursday at 11am PST.
We are gearing up for #MillionsMissing 2021! This year will be a week long event, from May 9 to 15, of action and activities to strengthen our community, and fight for recognition, research and medical education for myalgic encephalomyelitis (ME). Check out our website for the #MillionsMissing timeline of events, grab your t-shirt, and plan a local event! We
We are excited to announce that #MillionsMissing t-shirts are now available for purchase along with other items in our online stores! Shop U.S. Shop UK Shop AUS This is our 6th anniversary of #MillionsMissing to raise awareness and fight for recognition, education and research for people living with myalgic encephalomyelitis (ME or ME/CFS). Millions are
#MEAction has written an open letter to NIH institute director, Dr. Walter Koroshetz, and CDC division director Dr. Inger Damon to express our lack of confidence in their interagency approach to ME/CFS. Drs. Koroshetz and Damon co-lead the Interagency ME/CFS Working Group, which met last month, and oversee the ME/CFS program activities within their respective
