Category: Long Covid

New Black British support group seeks members with ME and Long Covid

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

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NPR Features #MEAction in Series about Long COVID

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

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#MEAction Swinging Through The Press Jungle

Welcome to the jungle, the press jungle! It’s hot and noisy here, with news fresh off the press. Trying to get the attention of the media is not as impossible as legend had it! This is Adriane, and as your Press Scribe, I’m here to write our way through this next adventure and make sure

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Tell your Doctor that GET is gone

The updated NICE guideline on ME/CFS contains substantial changes that alter the treatment and management of people with ME in England and Wales*. We need your help to tell doctors and other medical staff that the recommended treatments for people with ME have changed. We want to get the message out that there are new

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A Response to New Yorker Article on Long COVID

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

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Fury as NICE cancels publication of finalised ME/CFS guideline

There is widespread anger in the ME community today as NICE announced that it will not be publishing their finalised guideline on ME/CFS after pressure from sections of the medical establishment. At #MEAction UK, we are furious that NICE have capitulated to vested interests of those who support graded exercise therapy instead of defending their

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Connecting Black People with ME and/or long Covid in the UK

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

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CDC releases post-COVID guidance: 4 takeaways for ME/CFS

The U.S. Centers for Disease Control and Prevention (CDC) has published interim guidance for evaluating and caring for patients with post-COVID conditions.* The CDC will present this guidance to clinicians on a public COCA Call on Thursday, June 17th from 2:00 PM – 3:00 PM ET. This guidance deserves a detailed review of what has

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#MEAction urges Congress to hold NIH accountable

#MEAction has sent a letter to the Congressional House Subcommittee on Health (Energy & Commerce Committee), following their recent congressional hearing on Long COVID.  Our letter urges Congress to hold the National Institutes of Health (NIH) accountable for expediting treatments to people with ME/CFS and Long COVID. To make this happen, we urge Congress to

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