The #MEAction Community Making Waves in June!

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There is so much going on in our wonderful community that we wanted to make sure you did not miss out on the latest successes, events, and updates! Take a look at #MEAction’s community round-up below. 

MEAction’s Chronic Illness Survey Adventure is Featured in This Week in Virology 

Thanks to David Tuller for helping spread the word of #MEAction’s Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease) on This Week in Virology (Virology Blog). Take a look at what else #MEAction’s Director of Scientific and Medical Outreach Jaime Seltzer has been up to for The #MEAction Network as well!


#MEAction Townhall on the CDC 


Join us this Wednesday, June 23 at 3pm ET for a town hall meeting to discuss #MEAction’s response to the CDC’s flawed evidence review for ME/CFS treatments. The report problematically concludes that there is some evidence for CBT and GET as effective “treatments” for people with ME! Check out our timeline and key takeaways on ME advocates long struggle against these poorly constructed ME/CFS evidence reviews.

Check out the recently submitted public comments on the evidence review by the team at ME/CFS Skeptic who have put together a thoughtful criticism of the flaws in the CDC’s report.

And in the good news department check out our article on the 4 things you should know about the Long COVID guidance coming out of the CDC (it includes ME).

Jewish disability inclusion event featuring two people with ME 

We wanted to let you know about an event happening this Sunday, June 27 at 10am ET. ME advocate Rivka Solomon has helped organize an online event with the Synagogue Council of Massachusetts entitled Post-Pandemic Zooming for Jewish Disability Inclusion. The event will include two people with ME/CFS among the panelists. Be sure to RSVP for this opportunity for dialogue on Jewish disability awareness, education and action.

Art Mirin (left) at Advocacy Day in 2019

#MEAction California highlighted in Health Rising

Art Mirin, #MEAction California State Chapter Leader, was featured in Health Rising. Art has dedicated countless hours of time to expanding access, writing papers, and pushing for health equity across California. Please read this wonderful write-up from Art in Health Rising! 


#MEAction NY on Facebook Live 

Erin Roediger, our Programs and Campaign’s Director, interviewed the amazing Lynn Esteban, co-leader of #MEAction New York last week on Facebook live. In case you missed it, watch the interview below. 

ME In The Press


We’re excited to see #MEAction advocates back in the press discussing ME in relation to Long COVID.

#MEAction worked with @RootedInRights on an article exploring how Long COVID could be a game changer for ME, and featured MEAction activist, Wilhelmina Jenkins, and our Director of Scientific and Medical Outreach, Jaime Seltzer.

Wilhelmina tells her story of getting ME back in 1983, and being told that black people don’t get this disease. “It was mocked by late night hosts and comedians, and called the “yuppie disease” in the mistaken notion that it only affected upper middle class white women. Jenkins struggled to get a diagnosis because as an African American she didn’t fit this stereotype.”

The journalist hopes that the pandemic will force medicine to finally address the crisis of ME.

Long Covid Article Links to Stop. Rest. Pace. Campaign

Last, but certainly not least, check out this piece by Fiona Lowenstein in The Guardian discussing Fiona’s experience with Long COVID that links to #MEAction’s #StopRestPace campaign as well as more info on ME/CFS and post-exertional malaise.

This is just a snapshot of what is currently happening with our #MEAction community. Continue to follow along on social media to keep up to date with everything happening. There is so much going on and we are witnessing so much movement at the moment, so much force for change.

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