#millionsmissing — Public Fediverse posts

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

#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

#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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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