#meaction — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #meaction, aggregated by home.social.
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If you're a US resident you can add your story to #MEAction’s story bank.
They want stories from patients, caregivers, friends & family, healthcare providers, disability advocates - anyone who wants to contribute!
They particularly need stories from folks who rely on Medicaid.
You can remain anonymous if you like. Your story can include photos or video (optional)
Details:
https://airtable.com/app4hQ0Pkj285JqK1/pag3Ar4l6GfUGtxP1/form
18/n
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I'm back to list ways you can help folks with ME/CFS & Long Covid.
USA resident? You can add your signature to #MEAction's letter to the HHS secretary!
Congress has mandated that Medicaid recipients must work 80 hours a month unless they can prove they're “medically frail." This letter urges HHS to recognize people with ME/CFS & Long COVID as “medically frail" to protect their Medicaid access.
https://www.meaction.net/savemedicaid
17/n
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Another ME/CFS group is #MEAction. They've done great advocacy work over the years, including this protest in 2023. They put 300 cots on the lawn at the Washington Monument.
People with ME/CFS or Long Covid sent in pillowcases with personalized messages - you can see some of the pillows in this video.
Video from the event:
https://www.youtube.com/watch?v=FULqhB--k7k
Website:
https://storyofmillionsmissing.org/dc-protest/
This event got good press coverage.
13/n
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Another ME/CFS group is #MEAction. They've done great advocacy work over the years, including this protest in 2023. They put 300 cots on the lawn at the Washington Monument.
People with ME/CFS or Long Covid sent in pillowcases with personalized messages - you can see some of the pillows in this video.
Video from the event:
https://www.youtube.com/watch?v=FULqhB--k7k
Website:
https://storyofmillionsmissing.org/dc-protest/
This event got good press coverage.
13/n
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Another ME/CFS group is #MEAction. They've done great advocacy work over the years, including this protest in 2023. They put 300 cots on the lawn at the Washington Monument.
People with ME/CFS or Long Covid sent in pillowcases with personalized messages - you can see some of the pillows in this video.
Video from the event:
https://www.youtube.com/watch?v=FULqhB--k7k
Website:
https://storyofmillionsmissing.org/dc-protest/
This event got good press coverage.
13/n
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Another ME/CFS group is #MEAction. They've done great advocacy work over the years, including this protest in 2023. They put 300 cots on the lawn at the Washington Monument.
People with ME/CFS or Long Covid sent in pillowcases with personalized messages - you can see some of the pillows in this video.
Video from the event:
https://www.youtube.com/watch?v=FULqhB--k7k
Website:
https://storyofmillionsmissing.org/dc-protest/
This event got good press coverage.
13/n
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Another ME/CFS group is #MEAction. They've done great advocacy work over the years, including this protest in 2023. They put 300 cots on the lawn at the Washington Monument.
People with ME/CFS or Long Covid sent in pillowcases with personalized messages - you can see some of the pillows in this video.
Video from the event:
https://www.youtube.com/watch?v=FULqhB--k7k
Website:
https://storyofmillionsmissing.org/dc-protest/
This event got good press coverage.
13/n
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I'll start by explaining that ME/CFS (name used by most groups in the USA) stands for "myalgic encephalomyelitis / chronic fatigue syndrome"
Here are two links with an overview of ME/CFS
1) "What is ME?" from #MEAction
https://www.meaction.net/what-is-me
2) "Introduction to ME/CFS" from the Science for ME forum
https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-596527
Many folks w/ Long Covid have similar symptoms, some meet the ME/CFS diagnostic criteria
2/n -
I'll start by explaining that ME/CFS (name used by most groups in the USA) stands for "myalgic encephalomyelitis / chronic fatigue syndrome"
Here are two links with an overview of ME/CFS
1) "What is ME?" from #MEAction
https://www.meaction.net/what-is-me
2) "Introduction to ME/CFS" from the Science for ME forum
https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-596527
Many folks w/ Long Covid have similar symptoms, some meet the ME/CFS diagnostic criteria
2/n -
#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements
An art installation and educational gathering outside HHS headquarters is scheduled for May 12.
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✅ One concrete action you can do to help patients is to sign on to the letter that #MEAction has sent to RFK Jr, Secretary of HHS, urging him to recognize people with ME/CFS and Long COVID as “medically frail” so that access to Medicaid is protected.
"Protect Medicaid Access"
https://actionnetwork.org/petitions/freakin-frail?mc_cid=c993407feb
#USPol #Medicaid #MEcfs #LongCovid #Disability #ChronicIllness #FrailAndFurious
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If you want to learn more about Medicaid issues there's an "Ask Me Anything" session on #MEAction's instagram tomorrow, May 5, at 3 PM EDT
I'm not on Instagram myself so I can't help with details about how to watch but here's the link to their instagram account:
https://www.instagram.com/meactnet/
#USPol #Medicaid #MECFS #LongCovid #Disability #ChronicIllness #FrailAndFurious
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A short video (3 minutes) on actions listed in the 2026 Millions Missing toolkit, starting with low energy items.
Short description: Animated cat, wearing a purple overcoat and black bowler hat, speaks directly to camera.
https://www.youtube.com/watch?v=cPb9wOkRxMM
Note: Video is from Instagram, can't tag MEActNet here (but you could ask #MEAction to get a Fediverse account😉)
Direct link to toolkit:
#MillionsMissing #MEcfs #Pwme #LongCovid #PwLC #Medicaid #FrailAndFurious
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RE: https://disabled.social/@ahimsa_pdx/116495749131742719
Update from #MEAction:
"How to Participate in #MillionsMissing 2026"
https://www.meaction.net/post/your-story-can-change-everything
Some actions listed:
- Share your story on social media from May 9 to 16
- Submit your story to #MEAction's Story Bank
- Help protect Medicaid by signing the letter sent to HHS Director
- Register to join the event in Washington D.C. on May 12
#MEcfs #PwME #LongCovid #PwLC #ChronicIllness #Disability #Medicaid #FrailAndFurious
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May 12 is coming soon! #MEAction has this request:
"Telling your story for Millions Missing this year is so important!
There are MANY ways to tell your story & it all helps! Be yourself & know that if sharing your story brings up big feelings, you are not alone!"
Tips for how to tell your story:
https://www.meaction.net/millionsmissing-storytelling
This has a link to the Millions Missing toolkit and two videos.
#MEcfs #PwME #LongCovid #PwLC #MillionsMissing #FrailAndFurious #ChronicIllness #Medicaid
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"#MEAction + Mayo Algorithm’s Effect on ME/CFS Care"
https://www.meaction.net/post/meaction-mayo-algorithm-s-effect-on-me-cfs-care
A diagnostic algorithm for ME/CFS was added to the AskMayoExpert online tool and then a resesarch study was done to evaluate it using real world data.
"The new study asks: was the introduction of this new tool associated with improved diagnostic accuracy of ME/CFS?"
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I just wanted to say a huge thank you to MEAction Network (https://www.meaction.net/) and Visible (https://www.makevisible.com/) for the Visible band I won last month 👍 Having had ME/CFS for over 15 years I thought I knew everything about pacing but the Visible band has even taught this old dog some new tricks. Very cool 😎
#MECFS #MEAction #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigue #ChronicFatigueSyndrome #ChronicIllness #CFS #Spoons #Spoonie #Pacing #Health #Visible #Visibleband
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RE: https://disabled.social/@ahimsa_pdx/116360323389513800
🚨 Reminder: Two online storytelling workshops, to help prepare for the 2026 Millions Missing campaign, are scheduled for this week!
Two sessions with the same information - pick the one that fits your schedule.
First one is tomorrow, Tuesday, April 14.
Second one is Thursday, April 16.
Registration links in quoted post, lots more details about the campaign can be found in the rest of that thread.
(fixed day of week error!)
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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
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🧵
"Advice for Caregivers from Caregivers – Who are Sick Themselves" (5 pages)https://www.meaction.net/_files/ugd/b5886a_8c9ea881a27b4961917e63a6a812f3d9.pdf
#MEAction Caregivers' Support Group https://www.facebook.com/groups/meactioncaregivers/
#Caregiver #Caregivers #Caring #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs1/
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Good news from #MEAction
https://www.meaction.net/post/more-great-news-telemedicine-has-been-extended
Telehealth flexibilities for Medicare extended until Dec. 31, 2027. And some geographic restrictions have been removed.
#MEAction says they will continue to push to make this extension permanent.
More details can be found here:
https://telehealth.hhs.gov/providers/telehealth-policy/telehealth-policy-updates
#USPol #Medicare #Healthcare #Telehealth #Telemedicine #MEcfs #LongCovid #Disability #Accessibility