#meaction — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #meaction, aggregated by home.social.
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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 #LongCovid #PwME #Caregivers #ChronicIllness #MillionsMissing
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#MEAction:
We Made Real Progress at #MillionsMissing — Here's What's NextUpdate 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
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#MEAction:
We Made Real Progress at #MillionsMissing — Here's What's NextUpdate 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
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#MEAction:
We Made Real Progress at #MillionsMissing — Here's What's NextUpdate 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
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#MEAction:
We Made Real Progress at #MillionsMissing — Here's What's NextUpdate 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
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#MEAction:
We Made Real Progress at #MillionsMissing — Here's What's NextUpdate 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
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There's an online Blue Sunday event (via Zoom) that's hosted by #MEAction NC (North Carolina)
Sunday, May 17, 2026
1:00 pm – 2:30 pm EDTEveryone's invited no matter where you live!
More details, including a registration link, can be found here:
https://www.meaction.net/event-details/blue-sunday-tea-party
It's too late to order a box of baked goods but not too late to register!
22/n
#MEcfs #Fundraiser #BlueSunday #BlueSunday2026 #TeaPartyForME2026
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There's an online Blue Sunday event (via Zoom) that's hosted by #MEAction NC (North Carolina)
Sunday, May 17, 2026
1:00 pm – 2:30 pm EDTEveryone's invited no matter where you live!
More details, including a registration link, can be found here:
https://www.meaction.net/event-details/blue-sunday-tea-party
It's too late to order a box of baked goods but not too late to register!
22/n
#MEcfs #Fundraiser #BlueSunday #BlueSunday2026 #TeaPartyForME2026
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There's an online Blue Sunday event (via Zoom) that's hosted by #MEAction NC (North Carolina)
Sunday, May 17, 2026
1:00 pm – 2:30 pm EDTEveryone's invited no matter where you live!
More details, including a registration link, can be found here:
https://www.meaction.net/event-details/blue-sunday-tea-party
It's too late to order a box of baked goods but not too late to register!
22/n
#MEcfs #Fundraiser #BlueSunday #BlueSunday2026 #TeaPartyForME2026
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There's an online Blue Sunday event (via Zoom) that's hosted by #MEAction NC (North Carolina)
Sunday, May 17, 2026
1:00 pm – 2:30 pm EDTEveryone's invited no matter where you live!
More details, including a registration link, can be found here:
https://www.meaction.net/event-details/blue-sunday-tea-party
It's too late to order a box of baked goods but not too late to register!
22/n
#MEcfs #Fundraiser #BlueSunday #BlueSunday2026 #TeaPartyForME2026
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There's an online Blue Sunday event (via Zoom) that's hosted by #MEAction NC (North Carolina)
Sunday, May 17, 2026
1:00 pm – 2:30 pm EDTEveryone's invited no matter where you live!
More details, including a registration link, can be found here:
https://www.meaction.net/event-details/blue-sunday-tea-party
It's too late to order a box of baked goods but not too late to register!
22/n
#MEcfs #Fundraiser #BlueSunday #BlueSunday2026 #TeaPartyForME2026
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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
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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
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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
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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
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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
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I'm back to list ways you can help folks with ME/CFS & Long Covid.
USA resident? You can add your signature to #MEAction's letter to the HHS secretary!
Congress has mandated that Medicaid recipients must work 80 hours a month unless they can prove they're “medically frail." This letter urges HHS to recognize people with ME/CFS & Long COVID as “medically frail" to protect their Medicaid access.
https://www.meaction.net/savemedicaid
17/n
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I'm back to list ways you can help folks with ME/CFS & Long Covid.
USA resident? You can add your signature to #MEAction's letter to the HHS secretary!
Congress has mandated that Medicaid recipients must work 80 hours a month unless they can prove they're “medically frail." This letter urges HHS to recognize people with ME/CFS & Long COVID as “medically frail" to protect their Medicaid access.
https://www.meaction.net/savemedicaid
17/n
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I'm back to list ways you can help folks with ME/CFS & Long Covid.
USA resident? You can add your signature to #MEAction's letter to the HHS secretary!
Congress has mandated that Medicaid recipients must work 80 hours a month unless they can prove they're “medically frail." This letter urges HHS to recognize people with ME/CFS & Long COVID as “medically frail" to protect their Medicaid access.
https://www.meaction.net/savemedicaid
17/n
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I'm back to list ways you can help folks with ME/CFS & Long Covid.
USA resident? You can add your signature to #MEAction's letter to the HHS secretary!
Congress has mandated that Medicaid recipients must work 80 hours a month unless they can prove they're “medically frail." This letter urges HHS to recognize people with ME/CFS & Long COVID as “medically frail" to protect their Medicaid access.
https://www.meaction.net/savemedicaid
17/n
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I'm back to list ways you can help folks with ME/CFS & Long Covid.
USA resident? You can add your signature to #MEAction's letter to the HHS secretary!
Congress has mandated that Medicaid recipients must work 80 hours a month unless they can prove they're “medically frail." This letter urges HHS to recognize people with ME/CFS & Long COVID as “medically frail" to protect their Medicaid access.
https://www.meaction.net/savemedicaid
17/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
-
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
-
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
-
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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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 -
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 -
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 -
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 -
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 -
#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements
An art installation and educational gathering outside HHS headquarters is scheduled for May 12.
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#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements
An art installation and educational gathering outside HHS headquarters is scheduled for May 12.
-
#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements
An art installation and educational gathering outside HHS headquarters is scheduled for May 12.
-
#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements
An art installation and educational gathering outside HHS headquarters is scheduled for May 12.
-
#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements
An art installation and educational gathering outside HHS headquarters is scheduled for May 12.
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Mayo Algorithm’s Effect on #MECFS Care
https://www.meaction.net/post/meaction-mayo-algorithm-s-effect-on-me-cfs-care
A new research paper has been published which evaluates the "care process algorithm for ME/CFS" added to the AskMayoExpert tool. This article also discusses other collaborative work #MEAction has done with the Mayo Clinic
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Mayo Algorithm’s Effect on #MECFS Care
https://www.meaction.net/post/meaction-mayo-algorithm-s-effect-on-me-cfs-care
A new research paper has been published which evaluates the "care process algorithm for ME/CFS" added to the AskMayoExpert tool. This article also discusses other collaborative work #MEAction has done with the Mayo Clinic
-
Mayo Algorithm’s Effect on #MECFS Care
https://www.meaction.net/post/meaction-mayo-algorithm-s-effect-on-me-cfs-care
A new research paper has been published which evaluates the "care process algorithm for ME/CFS" added to the AskMayoExpert tool. This article also discusses other collaborative work #MEAction has done with the Mayo Clinic
-
Mayo Algorithm’s Effect on #MECFS Care
https://www.meaction.net/post/meaction-mayo-algorithm-s-effect-on-me-cfs-care
A new research paper has been published which evaluates the "care process algorithm for ME/CFS" added to the AskMayoExpert tool. This article also discusses other collaborative work #MEAction has done with the Mayo Clinic
-
Mayo Algorithm’s Effect on #MECFS Care
https://www.meaction.net/post/meaction-mayo-algorithm-s-effect-on-me-cfs-care
A new research paper has been published which evaluates the "care process algorithm for ME/CFS" added to the AskMayoExpert tool. This article also discusses other collaborative work #MEAction has done with the Mayo Clinic
-
@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
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@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
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@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
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@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
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@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
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🚨 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
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🚨 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
-
🚨 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
-
🚨 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