#worldmeday — Public Fediverse posts

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

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay

I live with Myalgic Encephalomyelitis (aka “Chronic Fatigue Sydrome”) and a host of related disorders. We say #MillionsMissing because the conditions are so debilitating that they cause us to have to drop out of our lives. Sending 💜 on #WorldMEday to all those who suffer. You are not alone.

RE: https://bsky.app/profile/did:plc:hedpcce7vylvdgibxuxjsuzb/post/3mloisvsgp22k

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

@mecfs @longcovid

#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay

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

@mecfs @longcovid

#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay

Another ME/CFS research & advocacy group is Solve M.E.

https://solvecfs.org/

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

#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay #MedMastodon #SolveME

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

@mecfs @longcovid

#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay

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

@mecfs @longcovid

#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay

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

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay

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

@mecfs @longcovid

#MEcfs #LongCovid #SevereME #MEAwarenessDay #WorldMEDay

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

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay #PEM #PESE

💙 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

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay

I had a stressful dream last night, maybe appropriate for May 12! In the dream, I have a new or stand-in GP [family physician] and I am trying to persuade them to sign a disability form. They are smirking away, not very sympathetic. So I have to list my symptoms and losses over the years.

#MEcfs #May12 #May12th #WorldMEday #pwme @mecfs

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

People are afraid of disability and chronic illness.

Ableism, combined with capitalism, has conditioned us to see value as directly tied to economic productivity.

If someone thinks about disability, it goes like this:

“I won’t ever become disabled because I’m healthy”

“If I do become disabled I will be the exception who gets cured”

“If medicine can’t cure me I will cure myself, I will try harder”

“Those disabled people just don’t want to get better”

they won’t understand until it happens to them, at which point many will say:

“I had no idea it was this bad!”

You know what they almost never say?

“I’m sorry”

#disability #chronicillness #worldMEday #millionsmissing #ableism #eugenics

Folks think that when someone is chronically ill, support is provided based on severity of condition

That if you get worse & can’t care for yourself help will magically appear

It doesn’t. Unless you’re wealthy or have family, you’re on your own

Many die or become more disabled due to lack of help.

Offer actual tangible help in lieu of unsolicited “advice”. Give to mutual aid. Help us fight for better social services.

#disability #ableism #chronicillness #worldMEDay #disabilityjustice

PS. If you want to make a donation to an ME/CFS group (only if you can afford it!) then here are some links:

#MEAction
https://www.meactions.org/millionsmissing-2025-sos-fundraiser

Solve M.E.
https://solvecfs.org/donate

Bateman Horne Center
https://batemanhornecenter.org/donate/

Open Medicine Foundation
https://www.omf.ngo/

#MEcfs #MillionsMissing #WorldMEDay #MEAwarenessDay #Charity

Okay, I think that's it! If you've made it all the way to the end of my thread, thanks so much for reading! 😁

I may be done posting but I'll continue to look for and boost other posts about World ME Day / ME Awareness Day / Millions Missing.

I'll end with a story by The Sick Times about the #MEAction Millions Missing protest at the capitol:

https://thesicktimes.org/2025/05/12/millions-missing-protest-at-the-capitol-demands-myalgic-encephalomyelitis-funding-social-support/

16/16

@mecfs @longcovid
@disability

#MEcfs #LongCovid #MillionsMissing #DisabilitySOS #MEAwarenessDay #WorldMEDay

Next up is Open Medicine Foundation, a group that does research to

"diagnose, treat, and prevent chronic, complex diseases such as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Post-COVID Syndrome, Post-Treatment Lyme Disease Syndrome (PTLDS), and Fibromyalgia"

Main website:

https://www.omf.ngo/

Here's their resources page:

https://www.omf.ngo/resource-center/

12/n

@mecfs @longcovid

#MEcfs #PwME #LongCovid #MillionsMissing #WorldMEDay #MEAwarenessDay #OMF

Some ME/CFS resources (groups, documents, videos) in no particular order:

I mentioned the #MEAction group earlier in this thread (see #StopRestPace post)

Their website has lots of good info!

https://www.meaction.net/

Their events calendar includes support groups, advocacy meetings, and support for artists and writers:

https://www.meactions.org/event-list

Recent youtube posts:

https://www.youtube.com/@MEActNet/shorts

8/n

@mecfs @longcovid

#MEcfs #PwME #LongCovid #MillionsMissing #WorldMEDay #MEAwarenessDay

I'm back! 😁

Next I'll share resources for people who have ME/CFS.

Because of an overlap in symptoms these resources may also help folks who have Long Covid, or who have some kind of orthostatic intolerance like POTS (Postural Orthostatic Tachycardia Syndrome) or NMH (Neurally Mediated Hypotension) - or both!

An umbrella term often used is IACC, Infection Associated Chronic Conditions.

7/n

@mecfs @longcovid

#MEcfs #LongCovid #POTS #MillionsMissing #Dysautonomia #MEAwareness #WorldMEDay

Okay, taking a break for a while!

I'm resting to avoid PEM (post-exertional malaise) also called PESE (post-exertional symptom exacerbation)

Speaking of resting here's a link to the #StopRestPace page by #MEAction which was created a few years back to explain the importance of pacing and resting to new Long Covid patients:

https://www.meaction.net/stoprestpace/

It has links to a few different pacing and management guides.

6/n

@mecfs @longcovid

#MEcfs #LongCovid #MillionsMissing
#MEAwareness #WorldMEDay

What does #MillionsMissing mean?

Even mild cases of ME/CFS cause significant loss. People with ME are missing from jobs (part time work), social activities, and exercise.

Moderate cases cause more loss so they may rarely leave the house.

People with severe ME are stuck in bed. Some use eye shades & ear plugs to reduce sensory input.

As ME/CFS gets worse a patient's world shrinks.

Attached comic is by Kornelia Paulsen.

5/n

@mecfs @longcovid

#MEcfs #SevereME #MEAwareness #WorldMEDay

@ddp Thanks for posting this video! ❤️

From the YouTube summary:

"It’s estimated 65,000 New Zealanders have the disease – with Long Covid driving ME rates 15 times higher than before the pandemic."

Another sad statistic showing that COVID is not over. 😔

#MEcfs #LongCovid #COVID #CovidIsNotOver #NewZealand #MEAwareness #WorldMEDay #MyalgicEncephalomyelitis

While most ME/CFS patients do have abnormal results from one or more tests, there's no single test (yet) which can reliably diagnose this illness.

Two links on ME/CFS diagnosis -

1. Concise Review for Clinicians from Mayo Proceedings:

https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

2. "ME/CFS Basics" from the CDC:

https://www.cdc.gov/me-cfs/about/index.html

4/n

@mecfs @longcovid

#MEcfs #MedEd #MillionsMissing #MEAwareness #MEAwarenessDay #WorldMEDay

If you learn nothing else from my thread today, please remember this:

Exercise is NOT recommended for people with ME/CFS!

Exercise is not good for anyone who has post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE), and that includes a significant portion of people with Long Covid.

This video has more info:

https://www.youtube.com/watch?v=wxSwYUennBA

3/n

@mecfs @longcovid

#MEcfs #PwME #PEM #PESE #LongCovid #MillionsMissing #MEAwareness #WorldMEDay

My story, in brief:

I caught an unknown virus in Dec 1989. I thought I'd recovered but then started getting new symptoms in Jan 1990. In March I went on medical leave.

Over the next 5 years I went to dozens of doctors but got no diagnosis until 1995. I tried to keep working but finally got too sick to work in 2000.

Pushing myself all those years led to a permanent worsening of my condition.

Not a good idea! 😔

2/n

@mecfs @longcovid

#MEcfs #PwME #MillionsMissing #MEAwareness #WorldMEDay

💙 It's May 12th, International ME/CFS Awareness Day 💙

My ME/CFS onset was in Jan 1990

🚨 Many recent ME/CFS cases have been triggered by COVID 🚨

In this thread I plan to post about 3 main things:

1. My ME/CFS story (briefly)

2. Helpful resources for patients and clinicians

3. Advocacy options for patients & allies (friends/family) - mostly US based

1/n

@mecfs @longcovid

#MEcfs #LongCovid #PostCovid #Disability #DisabilitySOS #CovidIsNotOver #MillionsMissing #MEAwareness #WorldMEDay