May 12 is International ME/CFS Awareness Day!
Share your story on social media May 9th - 16th
(link to toolkit with more details is in previous post)
Need help crafting your story?
Join one of these two storytelling workshops hosted by #MEAction's Shalida Dobbins-Askanazi:
April 14 at 1 pm PT/ 4 pm ET:
https://us06web.zoom.us/meeting/register/_S6iUD9gS4aUqFg1Aoaqug#/registration
April 16th at 1 pm PT/ 4 pm ET:
https://us06web.zoom.us/meeting/register/yFNB8b11To6LJQMlcFXQow#/registration
#MEcfs #PwME #LongCovid #PwLC #CovidIsNotOver #MillionsMissing
If you would like support and guidance on crafting your story using these prompts, please join us for one of two writing workshops, hosted by Shalida Dobbins and our narrative volunteer group.
From #MEAction:
"Storytelling is a key part of Millions Missing! Find all you need in our toolkit:
https://docs.google.com/document/d/1uJflVh8PP209MPEYSxeVw1SmFWlez0Gox1C9B8y98VY/edit?tab=t.0
It’s essential that we make our policymakers understand that ME is a serious, complex disease that deserves care and support, appropriate treatments and research."
#MEcfs #PwME #LongCovid #PwLC #MillionsMissing #FrailAndFurious
New from #MEAction -
"Millions Missing 2026 'Frail & Furious' tees are now available!
https://www.bonfire.com/store/meaction-1/
We have lots of styles and colors to choose from!
You can choose tees with a logo on the back on ones without.
A portion of your purchase helps support our work!"
This store has hats, hoodies, mugs, tote bags, and other items in addition to t-shirts.
#MEcfs #PwME #LongCovid #PwLC #MillionsMissing #FrailAndFurious
MEAction - "Frail and Furious" Millions Missing 2026
https://docs.google.com/document/d/1uJflVh8PP209MPEYSxeVw1SmFWlez0Gox1C9B8y98VY/edit?tab=t.0
https://www.meaction.net/millionsmissing26
https://www.youtube.com/watch?v=T3ampdl2eVM
Screenshot from latest Science for ME weekly update
OK, I think that's it! 😁
I hope this helps folks get inspired to join in. No pressure! This is only meant for folks who are able to participate.
I've posted this same info on the Science for ME Forum so it's all in one place.
It has some extra links like Bluesky threads and a video (#MEAction posts on Bluesky but not Mastodon).
It's a public forum post, no need to be a member to read it:
https://www.s4me.info/threads/usa-news-from-meaction.19675/page-14#post-685022
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#MEAction will be holding two online storytelling workshops in April to help people craft their stories.
Tuesday, April 14, 4 pm Eastern:
https://us06web.zoom.us/meeting/register/_S6iUD9gS4aUqFg1Aoaqug#/registration
Thursday, April 16, 4 pm Eastern:
https://us06web.zoom.us/meeting/register/yFNB8b11To6LJQMlcFXQow#/registration
Both workshop dates will present the same information.
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#MEcfs #PwME #LongCovid #PwLC #MillionsMissing #StoryTelling #Community
In addition to working to protect Medicaid access, #MEAction is asking folks with ME/CFS and Long Covid to share their stories about what it’s like to live with a serious, complex medical condition.
See the #MEAction toolkit for details:
Actions are listed by "battery level" (low to high)
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#MillionsMissing 2026 Toolkit Governments and healthcare systems around the world fail to classify myalgic encephalomyelitis (ME) as a serious, complex medical condition, leading to significant neglect in medical care and social services. Over and over again, people with ME and Long COVID are ...
The #MEAction Millions Missing theme this year is "Frail & Furious"
Why frail?
New Medicaid rules in the US will force people with ME/CFS and Long COVID to work 80 hours per month or lose their government health insurance *unless* they get a "medically frail" exemption.
Help protect Medicaid access by signing this letter to the HHS Secretary:
https://actionnetwork.org/petitions/freakin-frail
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#MEcfs #PwME #LongCovid #PwLC #MillionsMissing #USPol #Medicaid
🧵 Info on #MEAction's Millions Missing 2026 campaign!
https://www.meaction.net/millionsmissing26
International ME/CFS Awareness Day is coming soon - May 12!
ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and Long Covid are disabling chronic illnesses that get far less funding for research than they deserve based on disease burden.
You can find some basic facts about ME/CFS here:
https://www.meaction.net/learn/what-is-me
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Ahimsa
Ö. Ges. für ME/CFS
Tom Kindlon