#me-cfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #me-cfs, aggregated by home.social.
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Ror Preston:
Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.
New @wecrunchme visual on this topic 💙
Link to this new visual on the CrunchME website, along with notes on sources and methodology:
https://crunchme.org/visuals/2026-09-19-01/me-cfs-quality-of-life-by-disability-severity/
#SevereME #MEcfs #PwME #CFS #MyalgicEncephalomyelitis @mecfs
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Ror Preston:
Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.
New @wecrunchme visual on this topic 💙
Link to this new visual on the CrunchME website, along with notes on sources and methodology:
https://crunchme.org/visuals/2026-09-19-01/me-cfs-quality-of-life-by-disability-severity/
#SevereME #MEcfs #PwME #CFS #MyalgicEncephalomyelitis @mecfs
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Ror Preston:
Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.
New @wecrunchme visual on this topic 💙
Link to this new visual on the CrunchME website, along with notes on sources and methodology:
https://crunchme.org/visuals/2026-09-19-01/me-cfs-quality-of-life-by-disability-severity/
#SevereME #MEcfs #PwME #CFS #MyalgicEncephalomyelitis @mecfs
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Ror Preston:
Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.
New @wecrunchme visual on this topic 💙
Link to this new visual on the CrunchME website, along with notes on sources and methodology:
https://crunchme.org/visuals/2026-09-19-01/me-cfs-quality-of-life-by-disability-severity/
#SevereME #MEcfs #PwME #CFS #MyalgicEncephalomyelitis @mecfs
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Ror Preston:
Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.
New @wecrunchme visual on this topic 💙
Link to this new visual on the CrunchME website, along with notes on sources and methodology:
https://crunchme.org/visuals/2026-09-19-01/me-cfs-quality-of-life-by-disability-severity/
#SevereME #MEcfs #PwME #CFS #MyalgicEncephalomyelitis @mecfs
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RE: https://disabled.social/@tomkindlon/117306103947990143
On in 13 hours 43 minutes
5 pm Sydney today
7 pm NZ today12 am midnight California tonight
8 am UK tomorrow morning
9 am Germany tomorrow morningI have just read it will be recorded.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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RE: https://disabled.social/@tomkindlon/117306103947990143
On in 13 hours 43 minutes
5 pm Sydney today
7 pm NZ today12 am midnight California tonight
8 am UK tomorrow morning
9 am Germany tomorrow morningI have just read it will be recorded.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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RE: https://disabled.social/@tomkindlon/117306103947990143
On in 13 hours 43 minutes
5 pm Sydney today
7 pm NZ today12 am midnight California tonight
8 am UK tomorrow morning
9 am Germany tomorrow morningI have just read it will be recorded.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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RE: https://disabled.social/@tomkindlon/117306103947990143
On in 13 hours 43 minutes
5 pm Sydney today
7 pm NZ today12 am midnight California tonight
8 am UK tomorrow morning
9 am Germany tomorrow morningI have just read it will be recorded.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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RE: https://disabled.social/@tomkindlon/117306103947990143
On in 13 hours 43 minutes
5 pm Sydney today
7 pm NZ today12 am midnight California tonight
8 am UK tomorrow morning
9 am Germany tomorrow morningI have just read it will be recorded.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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https://www.europesays.com/at/412731/ ME/CVS: Kunstausstellung sammelt 12.500 Euro für Forschung #AT #Ausstellung #Austria #benefizkonzert #Euro #Forschung #Gesundheit #Health #Kunstausstellung #MATER #MECFS #MECVS #mittel #Österreich #Salzburger
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(Melbourne, Australia)
Contribute to research hoping to improve the lives of adults with ME/CFS or Long COVID
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(Melbourne, Australia)
Contribute to research hoping to improve the lives of adults with ME/CFS or Long COVID
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(Melbourne, Australia)
Contribute to research hoping to improve the lives of adults with ME/CFS or Long COVID
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(Melbourne, Australia)
Contribute to research hoping to improve the lives of adults with ME/CFS or Long COVID
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(Melbourne, Australia)
Contribute to research hoping to improve the lives of adults with ME/CFS or Long COVID
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Here's an article from the ME Association that talks about the mirrorbox journey:
"I Would Be Here If I Could: ME Association Trustee attends The Mirrorbox Journey event at the Royal Opera House"
It includes a schedule for where the mirrorbox will go next.
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Here's an article from the ME Association that talks about the mirrorbox journey:
"I Would Be Here If I Could: ME Association Trustee attends The Mirrorbox Journey event at the Royal Opera House"
It includes a schedule for where the mirrorbox will go next.
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Here's an article from the ME Association that talks about the mirrorbox journey:
"I Would Be Here If I Could: ME Association Trustee attends The Mirrorbox Journey event at the Royal Opera House"
It includes a schedule for where the mirrorbox will go next.
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Here's an article from the ME Association that talks about the mirrorbox journey:
"I Would Be Here If I Could: ME Association Trustee attends The Mirrorbox Journey event at the Royal Opera House"
It includes a schedule for where the mirrorbox will go next.
-
Here's an article from the ME Association that talks about the mirrorbox journey:
"I Would Be Here If I Could: ME Association Trustee attends The Mirrorbox Journey event at the Royal Opera House"
It includes a schedule for where the mirrorbox will go next.
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Here's the latest News in Brief (Sept. 14 - 20) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-723117
Highlight from this week's news:
https://www.iwouldbehereificould.com/
"I Would Be Here If I Could" is an art project described as "the UK’s largest collaborative social art project, co-created with individuals living with ME and Long Covid"
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Here's the latest News in Brief (Sept. 14 - 20) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-723117
Highlight from this week's news:
https://www.iwouldbehereificould.com/
"I Would Be Here If I Could" is an art project described as "the UK’s largest collaborative social art project, co-created with individuals living with ME and Long Covid"
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Here's the latest News in Brief (Sept. 14 - 20) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-723117
Highlight from this week's news:
https://www.iwouldbehereificould.com/
"I Would Be Here If I Could" is an art project described as "the UK’s largest collaborative social art project, co-created with individuals living with ME and Long Covid"
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Here's the latest News in Brief (Sept. 14 - 20) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-723117
Highlight from this week's news:
https://www.iwouldbehereificould.com/
"I Would Be Here If I Could" is an art project described as "the UK’s largest collaborative social art project, co-created with individuals living with ME and Long Covid"
-
Here's the latest News in Brief (Sept. 14 - 20) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-723117
Highlight from this week's news:
https://www.iwouldbehereificould.com/
"I Would Be Here If I Could" is an art project described as "the UK’s largest collaborative social art project, co-created with individuals living with ME and Long Covid"
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"Miranda Hart: Chronic illness will make Celebrity Traitors 'challenging'"
This article is based on a PA piece. There seem to be a number in the Irish media & I imagine quite a large number in the UK media mentioning Miranda's ill-health.
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"Miranda Hart: Chronic illness will make Celebrity Traitors 'challenging'"
This article is based on a PA piece. There seem to be a number in the Irish media & I imagine quite a large number in the UK media mentioning Miranda's ill-health.
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"Miranda Hart: Chronic illness will make Celebrity Traitors 'challenging'"
This article is based on a PA piece. There seem to be a number in the Irish media & I imagine quite a large number in the UK media mentioning Miranda's ill-health.
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"Miranda Hart: Chronic illness will make Celebrity Traitors 'challenging'"
This article is based on a PA piece. There seem to be a number in the Irish media & I imagine quite a large number in the UK media mentioning Miranda's ill-health.
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"Miranda Hart: Chronic illness will make Celebrity Traitors 'challenging'"
This article is based on a PA piece. There seem to be a number in the Irish media & I imagine quite a large number in the UK media mentioning Miranda's ill-health.
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@tomkindlon Cool art project!
"I would be here if I could has grown into the UK’s largest collaborative social art project, co-created with individuals living with ME and Long Covid"
"Our mission is to enable people with ME and Long Covid to be seen and heard through the shared love, memory, and experience of place"
Listen to messages from folks with ME/CFS & Long Covid here:
https://www.iwouldbehereificould.com/messages/library/
Messages also have transcripts
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@tomkindlon Cool art project!
"I would be here if I could has grown into the UK’s largest collaborative social art project, co-created with individuals living with ME and Long Covid"
"Our mission is to enable people with ME and Long Covid to be seen and heard through the shared love, memory, and experience of place"
Listen to messages from folks with ME/CFS & Long Covid here:
https://www.iwouldbehereificould.com/messages/library/
Messages also have transcripts
-
@tomkindlon Cool art project!
"I would be here if I could has grown into the UK’s largest collaborative social art project, co-created with individuals living with ME and Long Covid"
"Our mission is to enable people with ME and Long Covid to be seen and heard through the shared love, memory, and experience of place"
Listen to messages from folks with ME/CFS & Long Covid here:
https://www.iwouldbehereificould.com/messages/library/
Messages also have transcripts
-
@tomkindlon Cool art project!
"I would be here if I could has grown into the UK’s largest collaborative social art project, co-created with individuals living with ME and Long Covid"
"Our mission is to enable people with ME and Long Covid to be seen and heard through the shared love, memory, and experience of place"
Listen to messages from folks with ME/CFS & Long Covid here:
https://www.iwouldbehereificould.com/messages/library/
Messages also have transcripts
-
@tomkindlon Cool art project!
"I would be here if I could has grown into the UK’s largest collaborative social art project, co-created with individuals living with ME and Long Covid"
"Our mission is to enable people with ME and Long Covid to be seen and heard through the shared love, memory, and experience of place"
Listen to messages from folks with ME/CFS & Long Covid here:
https://www.iwouldbehereificould.com/messages/library/
Messages also have transcripts
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"I would be here if I could" travelling art installation by artist Alison Larkman
https://www.iwouldbehereificould.com/
Screenshot from latest Science for ME weekly update
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"I would be here if I could" travelling art installation by artist Alison Larkman
https://www.iwouldbehereificould.com/
Screenshot from latest Science for ME weekly update
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"I would be here if I could" travelling art installation by artist Alison Larkman
https://www.iwouldbehereificould.com/
Screenshot from latest Science for ME weekly update
-
"I would be here if I could" travelling art installation by artist Alison Larkman
https://www.iwouldbehereificould.com/
Screenshot from latest Science for ME weekly update
-
"I would be here if I could" travelling art installation by artist Alison Larkman
https://www.iwouldbehereificould.com/
Screenshot from latest Science for ME weekly update
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2/
"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis#MyalgicEncephalomyelitis #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs @longcovid -
2/
"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis#MyalgicEncephalomyelitis #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs @longcovid -
2/
"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis#MyalgicEncephalomyelitis #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs @longcovid -
2/
"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis#MyalgicEncephalomyelitis #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs @longcovid -
Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together.
And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2 -
Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together.
And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2 -
Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together.
And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2 -
Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together.
And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2 -
Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together.
And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2 -
"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis (Culture Night 2026)"
https://www.youtube.com/watch?v=IYIDTKY9oAA
Congratulations to all involved (including two Association members, Aoife Delany Reade & Jacinta Fay)
See next message for more details
@mecfs @longcovid
#MEcfs #LongCovid
#PwME #CFS #Mastodaoine #chronicillness #Disabled #Disability #DisabilityArt1/
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"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis (Culture Night 2026)"
https://www.youtube.com/watch?v=IYIDTKY9oAA
Congratulations to all involved (including two Association members, Aoife Delany Reade & Jacinta Fay)
See next message for more details
@mecfs @longcovid
#MEcfs #LongCovid
#PwME #CFS #Mastodaoine #chronicillness #Disabled #Disability #DisabilityArt1/
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"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis (Culture Night 2026)"
https://www.youtube.com/watch?v=IYIDTKY9oAA
Congratulations to all involved (including two Association members, Aoife Delany Reade & Jacinta Fay)
See next message for more details
@mecfs @longcovid
#MEcfs #LongCovid
#PwME #CFS #Mastodaoine #chronicillness #Disabled #Disability #DisabilityArt1/
-
"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis (Culture Night 2026)"
https://www.youtube.com/watch?v=IYIDTKY9oAA
Congratulations to all involved (including two Association members, Aoife Delany Reade & Jacinta Fay)
See next message for more details
@mecfs @longcovid
#MEcfs #LongCovid
#PwME #CFS #Mastodaoine #chronicillness #Disabled #Disability #DisabilityArt1/
-
"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis (Culture Night 2026)"
https://www.youtube.com/watch?v=IYIDTKY9oAA
Congratulations to all involved (including two Association members, Aoife Delany Reade & Jacinta Fay)
See next message for more details
@mecfs @longcovid
#MEcfs #LongCovid
#PwME #CFS #Mastodaoine #chronicillness #Disabled #Disability #DisabilityArt1/