#worldmeday — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #worldmeday, 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]... -
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]... -
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]... -
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]... -
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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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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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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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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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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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
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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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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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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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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:
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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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:
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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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:
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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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:
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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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:
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 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 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 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 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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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
-
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
-
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
-
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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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