#millionsmissing — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #millionsmissing, aggregated by home.social.
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Okay, that's all for today! If you made it all the way here, thanks so for reading! ❤️
Please share this information with others! Boost this thread, share links with friends & family, etc.
I'll end with a quote from Naomi Whittingham:
"No matter how isolated you might be, you are inextricably connected to the rest of humanity in ways you can’t fully imagine."
Source = https://alifehidden.com/2026/05/10/not-forgotten/
23/23
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
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Okay, that's all for today! If you made it all the way here, thanks so for reading! ❤️
Please share this information with others! Boost this thread, share links with friends & family, etc.
I'll end with a quote from Naomi Whittingham:
"No matter how isolated you might be, you are inextricably connected to the rest of humanity in ways you can’t fully imagine."
Source = https://alifehidden.com/2026/05/10/not-forgotten/
23/23
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
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Okay, that's all for today! If you made it all the way here, thanks so for reading! ❤️
Please share this information with others! Boost this thread, share links with friends & family, etc.
I'll end with a quote from Naomi Whittingham:
"No matter how isolated you might be, you are inextricably connected to the rest of humanity in ways you can’t fully imagine."
Source = https://alifehidden.com/2026/05/10/not-forgotten/
23/23
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
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Okay, that's all for today! If you made it all the way here, thanks so for reading! ❤️
Please share this information with others! Boost this thread, share links with friends & family, etc.
I'll end with a quote from Naomi Whittingham:
"No matter how isolated you might be, you are inextricably connected to the rest of humanity in ways you can’t fully imagine."
Source = https://alifehidden.com/2026/05/10/not-forgotten/
23/23
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
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Okay, that's all for today! If you made it all the way here, thanks so for reading! ❤️
Please share this information with others! Boost this thread, share links with friends & family, etc.
I'll end with a quote from Naomi Whittingham:
"No matter how isolated you might be, you are inextricably connected to the rest of humanity in ways you can’t fully imagine."
Source = https://alifehidden.com/2026/05/10/not-forgotten/
23/23
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
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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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Today is #MEAwarenessDay and while I spend every day painfully aware of the limitations this disease imposes on me, perhaps you haven't thought about it. Today is a great day to learn. Anyone can be affected by ME, and I'm one of those #MillionsMissing.
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Today is #MEAwarenessDay and while I spend every day painfully aware of the limitations this disease imposes on me, perhaps you haven't thought about it. Today is a great day to learn. Anyone can be affected by ME, and I'm one of those #MillionsMissing.
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OK, I'm gonna take a rest break!
I'm trying to avoid PEM (post-exertional malaise), aka PESE (post-exertional symptom exacerbation)
Pacing is hard! It often fails due to some unplanned exertion which can't be avoided. And sometimes adrenaline takes over when I should be resting.
In short, it's easy to do too much and crash. Fact sheet about PEM:
https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-606969
I'll be back later today! 😁
9/n
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
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OK, I'm gonna take a rest break!
I'm trying to avoid PEM (post-exertional malaise), aka PESE (post-exertional symptom exacerbation)
Pacing is hard! It often fails due to some unplanned exertion which can't be avoided. And sometimes adrenaline takes over when I should be resting.
In short, it's easy to do too much and crash. Fact sheet about PEM:
https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-606969
I'll be back later today! 😁
9/n
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
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What does #MillionsMissing mean?
Even mild cases of ME/CFS cause significant loss. So people with ME/CFS are "missing" from work, socializing, exercise, etc.
Moderate cases cause more loss so that people can rarely leave the house.
People with severe cases are in bed, rarely able to intereact with anyone.
As ME/CFS gets worse a person's life shrinks more and more.
The attached comic is by Kornelia Paulsen.
8/n
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What does #MillionsMissing mean?
Even mild cases of ME/CFS cause significant loss. So people with ME/CFS are "missing" from work, socializing, exercise, etc.
Moderate cases cause more loss so that people can rarely leave the house.
People with severe cases are in bed, rarely able to intereact with anyone.
As ME/CFS gets worse a person's life shrinks more and more.
The attached comic is by Kornelia Paulsen.
8/n
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If you learn nothing else from my thread today, please remember this:
🚨 Exercise is NOT recommended for people with ME/CFS!
Any exertion, mental or physical, is not good for people who have post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE)
This includes a significant portion of people with Long Covid.
Video with more info:
https://www.youtube.com/watch?v=wxSwYUennBA
4/n
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay #PEM #PESE
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If you learn nothing else from my thread today, please remember this:
🚨 Exercise is NOT recommended for people with ME/CFS!
Any exertion, mental or physical, is not good for people who have post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE)
This includes a significant portion of people with Long Covid.
Video with more info:
https://www.youtube.com/watch?v=wxSwYUennBA
4/n
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay #PEM #PESE
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My story:
I caught an unknown virus in Dec 1989. I thought I'd recovered then new symptoms started in Jan. Got worse & took my first medical leave in March 1990.
Went to dozens of doctors. Finally got a diagnosis in 1995. I kept working, taking medical leaves as needed, but finally got too sick to work at all in 2000.
Pushing myself all those years led to a permanent worsening of my condition!
Not a good idea! 😔
3/n
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My story:
I caught an unknown virus in Dec 1989. I thought I'd recovered then new symptoms started in Jan. Got worse & took my first medical leave in March 1990.
Went to dozens of doctors. Finally got a diagnosis in 1995. I kept working, taking medical leaves as needed, but finally got too sick to work at all in 2000.
Pushing myself all those years led to a permanent worsening of my condition!
Not a good idea! 😔
3/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 -
💙 It's May 12th, International ME/CFS Awareness Day 💙
Also called World M.E. Day!
🧵 This thread talks about 4 things:
1. My ME/CFS story (brief)
2. Facts about ME/CFS and Long Covid
3. Helpful resources for patients (and friends/family)
4. Actions you can take to help folks with ME/CFS & Long Covid!
Some will be easy things anyone can do! 👍
Other actions (re: #Medicaid) are for US residents only.
1/n
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
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💙 It's May 12th, International ME/CFS Awareness Day 💙
Also called World M.E. Day!
🧵 This thread talks about 4 things:
1. My ME/CFS story (brief)
2. Facts about ME/CFS and Long Covid
3. Helpful resources for patients (and friends/family)
4. Actions you can take to help folks with ME/CFS & Long Covid!
Some will be easy things anyone can do! 👍
Other actions (re: #Medicaid) are for US residents only.
1/n
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
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12/
May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is
ME Awareness Month).You can help by sharing and/or liking this image.
Day #12
#MyalgicE #MyalgicEncephalomyelitis #May12 #May12th #MEAwarenessDay
#MillionsMissing #mecfs
@mecfs -
12/
May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is
ME Awareness Month).You can help by sharing and/or liking this image.
Day #12
#MyalgicE #MyalgicEncephalomyelitis #May12 #May12th #MEAwarenessDay
#MillionsMissing #mecfs
@mecfs -
12/
May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is
ME Awareness Month).You can help by sharing and/or liking this image.
Day #12
#MyalgicE #MyalgicEncephalomyelitis #May12 #May12th #MEAwarenessDay
#MillionsMissing #mecfs
@mecfs -
12/
May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is
ME Awareness Month).You can help by sharing and/or liking this image.
Day #12
#MyalgicE #MyalgicEncephalomyelitis #May12 #May12th #MEAwarenessDay
#MillionsMissing #mecfs
@mecfs -
12/
May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is
ME Awareness Month).You can help by sharing and/or liking this image.
Day #12
#MyalgicE #MyalgicEncephalomyelitis #May12 #May12th #MEAwarenessDay
#MillionsMissing #mecfs
@mecfs -
@mecfs
More links from #MEAction:USA:
"Join us in person at HHS in Washington D.C. for an art installation and storytelling session"
https://www.meaction.net/millionsmissing26-usa
UK:
https://www.meaction.net/millionsmissing26-uk
Global:
https://www.meaction.net/millionsmissing26-global
2/2
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🚨 One week until May 12, International ME/CFS Awareness Day!
ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome
This toolkit from #MEAction has a list of actions, sorted by battery level, for the week of May 9-16:
https://docs.google.com/document/d/1uJflVh8PP209MPEYSxeVw1SmFWlez0Gox1C9B8y98VY/
If all you can do next week is rest, that's OK!
But if you can, please like and boost posts about ME/CFS - look for hashtags #MillionsMissing & #FrailAndFurious
Or share your story - see toolkit for tips!
1/2
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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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"Blue Sunday" Tea Party
#MEAction North CarolinaSunday, May 17
1 pm – 2:30 pm EDTBlue Sunday is "a worldwide celebration of the ME community and the ways we support each other through this terrible disease. It is a way for people with ME to feel a sense of connection and community despite the isolation of this disease."
You're invited! 😊
Details:
https://www.meaction.net/event-details/blue-sunday-tea-party
Registration:
https://us06web.zoom.us/meeting/register/1Gx24nNBRHSuCB4ArBBsNA#/registration
#MEcfs #PwME #BlueSunday #MillionsMissing #Advocacy #Support
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📢Die Betroffenen brauchen dringend Allys, die für sie demonstrieren, weil viele von ihnen selbst zu krank dafür sind
📢 Sa., 9.5., 15 Uhr Sendlinger Tor
▶️ ME/CFS ist eine schwere postvirale, neuroimmunologische Krankheit, die zu einem hohen Grad an Behinderung führt.⬇️
#MECFS #LongCovid #LiegendDemo #MillionsMissing #MyalgischeEnzephalomyelitis #ChronischeErkrankungen #InvisibleIllness #Lemonchallengemecfs #KraftSocken
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4/
“On the theme of personal burden and quality of life, another stated, ““She said, “My life has become an inhumane existence.” She left a husband and two teenaged children whom she referred to when she said, “I believe they have lost their mother to ME.””
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #millionsmissing -
Want to learn more about the "Frail and Furious" campaign for Millions Missing 2026?
Here's a video from #MEAction that explains the issues with Medicaid work requirements:
https://www.youtube.com/watch?v=C-3lWJTub30
I'll post the video transcipt as replies to this thread.
More details here:
https://www.meaction.net/millionsmissing26
#MEcfs #LongCovid #ChronicIllness #Disability #Disabled #Medicaid #MillionsMissing #USPol
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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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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
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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
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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
5/5
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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.
4/5
#MEcfs #PwME #LongCovid #PwLC #MillionsMissing #StoryTelling #Community
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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
2/5
#MEcfs #PwME #LongCovid #PwLC #MillionsMissing #USPol #Medicaid
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🧵 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
1/5
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From ME/CFS San Diego:
"Help ME/CFS San Diego raise awareness for ME/CFS this May!
We’re preparing for May awareness month and May/12 & need individuals to help distribute ribbons + makers to create them.
Groups and Organizations: Please partner with us to expand our reach."
Send email to [email protected]
Visit their website at https://www.mecfssandiego.com/
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Die Kundgebung anlässlich des Long-Covid-Awareness-Tags für ein besseres Gesundheitssystem, Anerkennung von und Versorgung für alle Betroffenen von Long Covid, ME/CFS und anderen postakuten Infektionssyndromen am 15. März 2026 vor dem Parlament in Wien zum Nachhören:
https://cba.media/763779#mecfs #severeme #longcovid #postcovid #millionsmissing #chronischkrank #behinderung #socialjustice #solidarität
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700–1000 Personen demonstrieren vor dem Parlament in #Wien anlässlich des Long-Covid-Awareness-Tags mit MUT für ein besseres Gesundheitssystem, Versorgung und Anerkennung für alle Betroffenen von #Long Covid, #MECFS oder anderen #PAIS.
#mecfs #severeme #longcovid #postcovid #millionsmissing #chronischkrank #behinderung #socialjustice #solidarität -
2026_2_16 “Botox for Migraine” Injection Set #2, and 5 Hour Drive to/from Appt
https://www.illmarks.com/2026_2_16-botox-for-migraine-injection-set-2-and-5-hour-drive-to-from-appt/
#2 #art #bodyHorror #bodyMapping #bodyart #bodymapping #chronicIllness #chronicIllness #chronicmigraine #disability #disabilityart #DisabledArtist #eds #healthcare #heds #longCovid #longcovid #mcas #medart #medical #medicalArt #migraine #MillionsMissing #neurology #POTS #pwLC #pwme #queer #QueerArt #QueerArtist #SciArt #SciComms #trans #transArt #TransPride
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2026_2_16 “Botox for Migraine” Injection Set #2, and 5 Hour Drive to/from Appt
https://www.illmarks.com/2026_2_16-botox-for-migraine-injection-set-2-and-5-hour-drive-to-from-appt/
#2 #art #bodyHorror #bodyMapping #bodyart #bodymapping #chronicIllness #chronicIllness #chronicmigraine #disability #disabilityart #DisabledArtist #eds #healthcare #heds #longCovid #longcovid #mcas #medart #medical #medicalArt #migraine #MillionsMissing #neurology #POTS #pwLC #pwme #queer #QueerArt #QueerArtist #SciArt #SciComms #trans #transArt #TransPride
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2026_2_16 “Botox for Migraine” Injection Set #2, and 5 Hour Drive to/from Appt
https://www.illmarks.com/2026_2_16-botox-for-migraine-injection-set-2-and-5-hour-drive-to-from-appt/
#2 #art #bodyHorror #bodyMapping #bodyart #bodymapping #chronicIllness #chronicIllness #chronicmigraine #disability #disabilityart #DisabledArtist #eds #healthcare #heds #longCovid #longcovid #mcas #medart #medical #medicalArt #migraine #MillionsMissing #neurology #POTS #pwLC #pwme #queer #QueerArt #QueerArtist #SciArt #SciComms #trans #transArt #TransPride
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2026_2_16 “Botox for Migraine” Injection Set #2, and 5 Hour Drive to/from Appt
https://www.illmarks.com/2026_2_16-botox-for-migraine-injection-set-2-and-5-hour-drive-to-from-appt/
#2 #art #bodyHorror #bodyMapping #bodyart #bodymapping #chronicIllness #chronicIllness #chronicmigraine #disability #disabilityart #DisabledArtist #eds #healthcare #heds #longCovid #longcovid #mcas #medart #medical #medicalArt #migraine #MillionsMissing #neurology #POTS #pwLC #pwme #queer #QueerArt #QueerArtist #SciArt #SciComms #trans #transArt #TransPride