☔ Gestern haben wir uns trotz Regen und frischer 8 °C nicht aufhalten lassen: Gemeinsam setzen wir uns für mehr Sichtbarkeit, bessere Versorgung und mehr Forschung zu Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom ein. #MECFS #MyalgischeEnzephalomyelitis #ChronischesFatigueSyndrom #TagDerPflege #Solidarität #Inklusion #MEAwarenessDay
#meawarenessday — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #meawarenessday, aggregated by home.social.
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For ME/CFS AwarenessDay I posted a long thread on Mastodon - here's the link! 😁 disabled.social/@ahimsa_pdx/... If you prefer an "unrolled" thread here's that link: mastoreader.io?url=https%3A... #MEcfs #LongCovid #MEAwarenessDay #WorldMEDay
Ahimsa (@[email protected]... -
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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Today's top ten tag trends:
10: #gitlab
9: #TextureTuesday
8: #meawarenessday
7: #tercinema
6: #windowsanddoors
5: #TuneTuesday
4: #DisclaimersForBooksOrMovies
3: #ESC2026
2: #esc
1: #eurovision -
I'm taking another break while I gather up and organize the final section of this thread, actions you can take to help folks with ME/CFS & Long Covid.
Stay tuned - I will be back a bit later to finish the thread!
16/n
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Want to discuss the science of ME/CFS & Long Covid with patients, doctors, researchers, other interested folks?
There's a moderated forum called Science for ME:
https://www.s4me.info/whats-new/
Full disclosure, I'm a forum member and one of the volunteers who do the "News in Brief" summary. It's posted weekly on Mastodon and Bluesky.
The forum also has subforums where patients can chat or share funny/silly stuff. Come join us! 😁
15/n
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Another ME/CFS research & advocacy group is Solve M.E.
They hold Advocacy Week every year, meeting with government representatives to lobby for legislation that will help ME/CFS and Long Covid (research funding and other asks).
They also run the Ramsay Research Grant Program - since 2016, 37 studies have been supported by Ramsay Grants.
https://solvecfs.org/research/ramsay-research-grants/
14/n
#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay #MedMastodon #SolveME
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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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Next I'll list some of the ME/CFS groups which have resources for patients and clinicians.
I'll start with the Bateman Horne Center since I just mentioned them. They have online support group meetings twice a month.
They also have regular "Coffee" with a Clinician sessions where they talk about different ME/CFS issues.
Event calendar:
https://batemanhornecenter.org/events/
Home page:
https://batemanhornecenter.org/
12/n
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Das dritte Jahr in Folge, ab heute ist es Tradition:
#LightUpTheNight4ME in #Mönchengladbach für den #MEAwarenessDayWegen dem Um-/Neubau in #Rheydt wurde dies mal das Rathaus Abtei beleuchtet und wie mir eine Mitarbeiterin der Stadt Mönchengladbach vor Ort erklärte gab es einige Probleme. Ich war dann völlig gerührt mit wie viel Engagment sie es dann trotzdem noch hin bekommen haben.
Vielen Dank jenen, die das heute möglich gemacht haben!
1/3 -
It's ME/CFS Awareness day, which shines light on a disease that I have struggled with for most of my life. I originally drew this piece as a way of expressing the way I feel stifled in my abilities by my ME, often leaving me in bed grieving the life that I've lost to this illness. #MEAwarenessDay
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Sichtbarkeit ist eine Voraussetzung, aber keine Lösung. Heute ist #MEAwarenessDay. Ein Tag des Gedenkens an Verstorbene, an verlorene Lebenswege, an Menschen, die seit Jahren oder Jahrzehnten mit #MECFS leben …. 1/x www.linkedin.com/posts/drkell...
#komplexität #mecfs #forschung... -
1/2
On #MEawarenessDay I bring you pale blue flowers:
- Linseed
- Myriad of them...
- On the edge of society.
#MEcfsEgress #Bloomscrolling DailyNaturePics 295 -
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!
The Swedish study finding 1 in 5 people with hypermobile Ehlers Danlos Syndrome #hEDS or hypermobility spectrum disorder #HSD (which the EDS Society found are the same) have myalgic encephalomyelitis/chronic fatigue syndrome #MECFS #pwME: https://pmc.ncbi.nlm.nih.gov/articles/PMC7485557/
The study found 20% #pwME studied had #hEDS and 50% had #HSD
This study was prior to the 2026 reclassification merging HSD and hEDS
Given 2026 changes, 44 hEDS + 115 HSD = 159 hEDS of 229 is 69.43%
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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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CW: Severe ME, death, suicide
Symptom severity ranges from mild to very severe. But even so-called "mild" ME/CFS has an enormous impact what a person can do.
With severe ME/CFS the person is mostly housebound or completely bedbound.
Anil van der Zee, a former professional dancer who now has severe ME, made this video:
https://www.youtube.com/watch?v=XhrAhGkrGuQ
Read the YouTube summary for more details
5/n
#MEcfs #PwME #SevereME #MEAwarenessDay #WorldMEDay #MyalgicEncephalomyelitis
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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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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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„Die Grenze zwischen komplexer Medizin und Psychosomatik verläuft manchmal exakt dort, wo die Fortbildungsbereitschaft aufhört.“ #MEAwarenessDay
Intellektuelle Bequemlichkeit? -
„Die Grenze zwischen komplexer Medizin und Psychosomatik verläuft manchmal exakt dort, wo die Fortbildungsbereitschaft aufhört.“ #MEAwarenessDay
Intellektuelle Bequemlichkeit? -
Falls ihr den #MEAwarenessDay unterstützen möchtet, teilt das Video auch gerne auf YouTube:
RE: https://bsky.app/profile/did:plc:shmtd76ykcmmw2a5ioc7giq6/post/3mlmxlbuwp22q
ME/CFS ist noch immer eine sta... -
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 -
I found my way to the Long Covid clinic. It helped. Care was given. Human mostly. Medical on occasion.
This is still me in 2023 but the images could be today.
2025 was hopeful.
2026 is less so. I feel my baseline is shifting (more GP appointments to come). The outside world I love so much is the furthest it's ever been.Wear a mask. Educate yourself.
You may not see us but we are here. Indoors. Shuttered. Pacing. Resting. Mourning.We exist.
I exist.2/2
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This was me in 2023.
Pain was settling in. My mind was blurring.
I cycled everywhere because this is who I was (who I am), a modern centaur of sorts, half human, half bicycle.
I went to the GP. And again. And again. I cannot tell you how often but I can tell you I now fear going to the GP from all the lack of care (not medical though that was a thing, but just human care) I received. 1/2
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12/
May 12 is International #MyalgicEncephalomyelitis (ME) Day (and May is ME Awareness Month) You can help by sharing and/or liking this (well-made) video.
(3 minutes)
https://www.youtube.com/watch?v=IOflARSgNnE
Day 12
#MyalgicE #May12 #May12th #WorldMEDay2026
#WorldMEday #MEAwarenessDay
#mecfs
@mecfs -
Vi samler inn til god biomedisinsk ME-forskning, nå øremerket ResetME studien på Haukeland.
Det er rart for meg som har vært ansvarlig for en svær virksomhet og kreftavdelingen over mange år å se hvilken forskjell det er i ressurser som brukes på kreftbehandling og andre sykdommer, og ME.
-Olav Mella (Onkolog, professor emeritus og forsker ResetME)
VIPPS 13911 #millionsmissing #mecfs #resetme #meawarenessday -
It's #MEAwarenessDay
SequenceME is a groundbreaking medical research project by the University of Edinburgh, Oxford Nanopore Technology and the European Bioinformatics Institute. It's a whole-genome study aiming to accelerate the development of diagnostics and life-changing treatments for #MECFS and #LongCovid. Today would be a great day to chuck them a few quid.
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Managed a post on #MEAwarenessDay.
Must nap now!Help me escape #abusers & have a chance at life. Dying of abuse/neglect - running out of time.
$250wk negotiable for rent, room, land for caravan/cabin- anywhere safe & accessible. On #DSP can’t afford much. #Community help needed. Can you spare a room? Land? Time? Know someone who can?Info & help with costs:
(I either write too much or not enough depending on who you ask so further info in fund & Canary article link)💸Fund: https://www.chuffed.org/project/161937-help-anna-escape
☕️BMaC: https://www.buymeacoffee.com/Halcionandon
🎁AmazonAU: https://www.amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ
ᯓ➤Beem: Halcionandon
🗞️Article: “Nearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuse”https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/#mutualaid
#MECFS #PWME #SevereME #MyalgicEncephalomyelitis
#MEAwarenessweek
@mecfs
@[email protected]
@DisabilityJustice
@[email protected] -
No fancy post for #MEAwarenessDay
Help me escape #abusers & have a chance at life. Dying of abuse- running out of time.
$250wk negotiable for rent, room, land for caravan/cabin- anywhere safe & accessible. On #DSP can’t afford much. #Community help needed. Info & help with costs:💸Fund: https://www.chuffed.org/project/161937-help-anna-escape
☕️BMaC: https://www.buymeacoffee.com/Halcionandon
🎁AmazonAU: https://www.amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ
ᯓ➤Beem: Halcionandon#mutualaid
#MECFS #PWME #SevereME #MyalgicEncephalomyelitis
#MEAwarenessweek
@mecfs
@mutualaid -
CW: Sickness
Spring 2021. A phone call. I still remember it. What I learned from it still scares me.
At the time, I received quite a few phone calls. People inquired about an online #hamRadio license course I was about to start. This call was one of those.
It was also different. The caller provided me, the friendly listener, with a first-hand account of long COVID.
In four years since, not enough money has been spent on research of that.
See @AnAutieAtUni's post 🧵 and #MEAwarenessDay generally.
