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

#MillionsMissing 2025: SOS Fundraiser

Disabled people across the world are sending out an SOS. #MillionsMissing 2025 provides our community with concrete actions.

Me Actions

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

“Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support - The Sick Times

Myalgic encephalomyelitis (ME), Long COVID, and other chronic disease advocates demonstrated outside the Capitol Building in Washington, D.C., this afternoon. Organized by the advocacy group #MEAction, demonstrators demanded that the federal government fund ME research and preserve vital social support systems like Medicaid and telemedicine.

The Sick Times - Chronicling the Long Covid crisis

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

OMF Home - Open Medicine Foundation

ME/CFS & Long COVID are life-altering illnesses. Together, we can move research further, faster.

Open Medicine Foundation

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

Home

We’re Igniting a Global Revolution in ME Care Our movement fights for recognition, research and clinical education so that, one day, all people with myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME, or ME/CFS), and Long COVID will have access to compassionate and effective care. We are advocating for our communities at every government table and protesting on … Home Read More »

#MEAction Network

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

Stop. Rest. Pace.

If you are new to Long COVID or ME/CFS, it is important to learn how to #StopRestPace.

#MEAction Network

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