#millionsmissing — Public Fediverse posts

The millions missing song by PFM (2026) (3 minutes)

Choose your preferred music service:
https://ditto.fm/millions-missing

Probably not the sweetest of voices but they have put some thought into the lyrics so well done and thanks to them. 👍👏

#millionsmissing #MEcfs #PwME #ME #MyalgicE
@mecfs

The millions missing song by PFM (2026) (3 minutes)

Choose your preferred music service:
https://ditto.fm/millions-missing

Probably not the sweetest of voices but they have put some thought into the lyrics so well done and thanks to them. 👍👏

#millionsmissing #MEcfs #PwME #ME #MyalgicE
@mecfs

2026_4 Mystery GI Agony

2026_4 Mystery GI Agony

Ahh, the art. So fascinating, so wonderful. Here, we see the illmarks website, returning to life, with news of one of my favorite procedures. Cholecystectomy. Yes, of course the artist needed more health problems, you silly!

Ahh, the art. So fascinating, so wonderful. Here, we see the illmarks website, returning to life, with news of one of my favorite procedures. Cholecystectomy. Yes, of course the artist needed more health problems, you silly!

Good video (about 5 1/2 minutes) from the #MEAction Millions Missing event on May 12:

https://www.youtube.com/watch?v=UE3U8O5rWcg

I got a chuckle from this line:

"And to everyone who has had to explain this illness for the 700th time this week, I see you."

Anyone else out there who can relate to having to explain this illness over and over again?

@mecfs

#MEcfs #LongCovid #PwME #Caregivers #ChronicIllness #MillionsMissing

Good video (about 5 1/2 minutes) from the #MEAction Millions Missing event on May 12:

https://www.youtube.com/watch?v=UE3U8O5rWcg

I got a chuckle from this line:

"And to everyone who has had to explain this illness for the 700th time this week, I see you."

Anyone else out there who can relate to having to explain this illness over and over again?

@mecfs

#MEcfs #LongCovid #PwME #Caregivers #ChronicIllness #MillionsMissing

A repository of selected ME/CFS and Long Covid documentaries & shorts. Plus some current affairs reports, art films and archival footage

https://skywriter.blue/@nessau.bsky.social/3mlnv2zrxrk2n

#MECFS #LongCovid #GreatestMEdicalScandal #MillionsMissing #May12th @mecfs @longcovid

A repository of selected ME/CFS and Long Covid documentaries & shorts. Plus some current affairs reports, art films and archival footage

https://skywriter.blue/@nessau.bsky.social/3mlnv2zrxrk2n

#MECFS #LongCovid #GreatestMEdicalScandal #MillionsMissing #May12th @mecfs @longcovid

#MEAction:
We Made Real Progress at #MillionsMissing — Here's What's Next

Update on the May 12th event at the HHS headquarters in Washington, DC, and a report on getting funding for the ME/CFS Research Roadmap.

https://www.meaction.net/post/we-made-real-progress-at-millionsmissing-here-s-what-s-next

#mecfs #pwme #CFS @mecfs

#MEAction:
We Made Real Progress at #MillionsMissing — Here's What's Next

Update on the May 12th event at the HHS headquarters in Washington, DC, and a report on getting funding for the ME/CFS Research Roadmap.

https://www.meaction.net/post/we-made-real-progress-at-millionsmissing-here-s-what-s-next

#mecfs #pwme #CFS @mecfs

It's #BlueSunday2026! A day to fundraise for ME advocacy and the #MillionsMissing, and like every May, I will match your donations!

For 3+ years I have been of this world but not in it, and this is my best hope of getting my old life back. My post earlier in the thread talks about the realities of my day to day now.

It's #BlueSunday2026! A day to fundraise for ME advocacy and the #MillionsMissing, and like every May, I will match your donations!

For 3+ years I have been of this world but not in it, and this is my best hope of getting my old life back. My post earlier in the thread talks about the realities of my day to day now.

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

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 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

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

@mecfs @longcovid

#MEcfs #LongCovid #Medicaid #MillionsMissing #Community

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

@mecfs @longcovid

#MEcfs #LongCovid #Medicaid #MillionsMissing #Community

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.

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.

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

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

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

Another ME/CFS fact: It can be triggered by COVID infection. Not all Long Covid cases meet ME/CFS diagnosis but many do. For more info see this Bateman Horne Center blog post:

COVID-19 Triggers ME/CFS

https://batemanhornecenter.org/covid-19-triggers-me-cfs/

"… among participants infected with SARS-CoV-2, the incidence of ME/CFS—defined using the Institute of Medicine (IOM) diagnostic criteria—was 15 times *higher* than pre-pandemic rates."

6/n

@mecfs @longcovid

#MEcfs #LongCovid #COVID-19 #CovidIsNotOver #MillionsMissing

Another ME/CFS fact: It can be triggered by COVID infection. Not all Long Covid cases meet ME/CFS diagnosis but many do. For more info see this Bateman Horne Center blog post:

COVID-19 Triggers ME/CFS

https://batemanhornecenter.org/covid-19-triggers-me-cfs/

"… among participants infected with SARS-CoV-2, the incidence of ME/CFS—defined using the Institute of Medicine (IOM) diagnostic criteria—was 15 times *higher* than pre-pandemic rates."

6/n

@mecfs @longcovid

#MEcfs #LongCovid #COVID-19 #CovidIsNotOver #MillionsMissing

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

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

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

@mecfs @longcovid

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay

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

@mecfs @longcovid

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay

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

@mecfs @longcovid

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay

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

@mecfs @longcovid

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay

💙 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

💙 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

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

Nicht „einfach nur müde", sondern chronisch krank: heute ist ME/CFS-Tag.
Die Myalgische Enzephalomyelitis/Chronisches Fatigue Syndrom ist eine schwere neuro-immunologische Erkrankung.
Heute am internationalen ME/CFS-Tag leuchten öffentliche Gebäude und die Fenster von Betroffenen und Unterstützer:innen blau um auf das Leid der Betroffenen aufmerksam zu machen.
#LightUpTheNight4ME #MillionsMissing #MECFS #PostCovid

Nicht „einfach nur müde", sondern chronisch krank: heute ist ME/CFS-Tag.
Die Myalgische Enzephalomyelitis/Chronisches Fatigue Syndrom ist eine schwere neuro-immunologische Erkrankung.
Heute am internationalen ME/CFS-Tag leuchten öffentliche Gebäude und die Fenster von Betroffenen und Unterstützer:innen blau um auf das Leid der Betroffenen aufmerksam zu machen.
#LightUpTheNight4ME #MillionsMissing #MECFS #PostCovid

Kære Dansker

Hvis du er i København i morgen den 12 maj 2026, og kommer forbi Gammeltorv mellem kl 11 og 16, så vil du muligvis se en stille demonstration. Der vil nok være placeret nogle tomme sko på torvet for de mennesker, der ikke kunne være der. Dem, der er fanget i deres hjem og måske i deres seng.

Hvis du dem, så vis dem lidt kærlighed og støtte. Og tag måske en snak med dem og udvid din horisont.

https://www.meaction.net/millionsmissing26

#MeCfs #MillionsMissing #DkPol

And "Blue Sunday: Tea party for M.E." will be on Sunday, May 17 this year:

https://www.s4me.info/threads/blue-sunday-tea-party-for-m-e-sunday-may-17-2026.50132/

@mecfs

#MEcfs #PwME #MECFSAwareness #MillionsMissing

And "Blue Sunday: Tea party for M.E." will be on Sunday, May 17 this year:

https://www.s4me.info/threads/blue-sunday-tea-party-for-m-e-sunday-may-17-2026.50132/

@mecfs

#MEcfs #PwME #MECFSAwareness #MillionsMissing

Tuesday, May 12, is International ME/CFS Awareness Day (World ME Day)

This forum thread lists some of the events planned for that day:

https://www.s4me.info/threads/world-me-day-2026-may-12th.50092/#post-690953

@mecfs

#MEcfs #PwME #MECFSAwareness #MillionsMissing

Tuesday, May 12, is International ME/CFS Awareness Day (World ME Day)

This forum thread lists some of the events planned for that day:

https://www.s4me.info/threads/world-me-day-2026-may-12th.50092/#post-690953

@mecfs

#MEcfs #PwME #MECFSAwareness #MillionsMissing

"Walk On By"

A poem by R.M. Carlson, shared in honor of Millions Missing. Carlson has lived with moderately severe ME/CFS for 3 years.

@mecfs

#MEcfs #PwME #SevereME #MillionsMissing #FrailAndFurious #Poetry #Disability

"Walk On By"

A poem by R.M. Carlson, shared in honor of Millions Missing. Carlson has lived with moderately severe ME/CFS for 3 years.

@mecfs

#MEcfs #PwME #SevereME #MillionsMissing #FrailAndFurious #Poetry #Disability

@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

@mecfs

#MEcfs #PwME #MillionsMissing #FrailAndFurious #MEAwareness

@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

@mecfs

#MEcfs #PwME #MillionsMissing #FrailAndFurious #MEAwareness

🚨 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

@mecfs

#MEcfs #PwME

🚨 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

@mecfs

#MEcfs #PwME

@mecfs

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:

https://docs.google.com/document/d/1uJflVh8PP209MPEYSxeVw1SmFWlez0Gox1C9B8y98VY/edit?mc_cid=d4aa139b8f&tab=t.0

#MillionsMissing #MEcfs #Pwme #LongCovid #PwLC #Medicaid #FrailAndFurious

@mecfs

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:

https://docs.google.com/document/d/1uJflVh8PP209MPEYSxeVw1SmFWlez0Gox1C9B8y98VY/edit?mc_cid=d4aa139b8f&tab=t.0

#MillionsMissing #MEcfs #Pwme #LongCovid #PwLC #Medicaid #FrailAndFurious

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

#MEcfs #PwME #LongCovid #PwLC #ChronicIllness #Disability #Medicaid #FrailAndFurious

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

#MEcfs #PwME #LongCovid #PwLC #ChronicIllness #Disability #Medicaid #FrailAndFurious

Netzfund zur Info:
Bei den #MEcfs #Liegenddemo wird es auch Banner zu erwerben geben.

ME/(cfs) Banner - Hänge es auf!

Unter Fenster, Balkon, Gartenzaun. An Rollstuhl, Fahrrad, ins Auto legen.

Für längere Haltbarkeit gespannt aufhängen (keine Falten).

(Poste ein Foto auf Insta: #MEBanner #MEcfs #MEAwareness #Liegenddemo #MillionsMissing )

@mecfs

Source for the post above = https://bsky.app/profile/meactnet.bsky.social/post/3mkq7qtwvr62w

Links with more information about ME/CFS:

https://www.meaction.net/what-is-me

https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-596527

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

#MEcfs #PwME #MillionsMissing