The RECOVER-Treating Long COVID (RECOVER TLC) Kick-off Meeting was Sept 23-25 in person and over Zoom. I had the privilege of attending over Zoom and Jaime Seltzer, #MEAction’s Scientific Director, represented the needs of the ME community in person and as an invited member of a panel on clinical trial design. There were many speakers
Urge Congress to hold our federal health and research agencies accountable for ME & Long COVID.
Washington, DC – The ME/CFS and Long COVID communities will demonstrate today with the installation of 300 cots on the National Mall to represent the millions of people missing from their lives due to post-infectious disease. We are the #MillionsMissing.
Protesters disabled by Long COVID and myalgic encephalomyelitis (ME/CFS) are protesting at the White House sidewalk TODAY at 12 p.m. ET to say that the “pandemic is not over,” and to call on President Biden to declare Long COVID and ME/CFS a national emergency.
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
NPR featured #MEAction in an article about long COVID called, “For patients with long COVID, chronic fatigue syndrome may offer a guiding star.” MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, speaks about how long COVID researchers and doctors must learn from the ME/CFS community. “People with chronic complex disease have been living with
#MEAction summarized the scientific talks about ME/CFS and Long COVID presented at the International Association of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) Conference that took place last August. We sent this summary of those talks to our database of journalists reporting on Long COVID this past October to underscore the parallels between the conditions,
A person with ME (who wishes to remain anonymous online) sent this letter to the author of The New Yorker article, “The Struggle to Define Long COVID,” and to the magazine’s editor. #MEAction was also concerned to see The New Yorker publish such a disparaging and flawed article about the Long COVID community, which cherry-picked examples of
Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the
We are thrilled to see the press tell our story of the #MillionsMissing this year, and the #MillionsMore “long haulers” expected to develop ME/CFS following a COVID-19 infection. In Pittsburgh, a mother of four told her story in the Tribune-Review about her 25-year journey of never recovering after contracting EBV, the virus that causes Mono.
