#severeme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #severeme, 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
-
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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3/
“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.” -
3/
“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.” -
3/
“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.” -
3/
“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.” -
3/
“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.” -
Severe ME Awareness Day
#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs -
An image on severe ME to mark severe ME day
#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME @mecfs
#MEcfs -
An image on severe ME to mark severe ME day
#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME @mecfs
#MEcfs -
An image on severe ME to mark severe ME day
#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME @mecfs
#MEcfs -
An image on severe ME to mark severe ME day
#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME @mecfs
#MEcfs -
An image on severe ME to mark severe ME day
#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME @mecfs
#MEcfs -
Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement
https://link.springer.com/article/10.1007/s10354-026-01182-3
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs #PwME #CFS #ME #MyalgicE #SevereMECFS
#SevereCFS #VerySevereME
@mecfs -
Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement
https://link.springer.com/article/10.1007/s10354-026-01182-3
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs #PwME #CFS #ME #MyalgicE #SevereMECFS
#SevereCFS #VerySevereME
@mecfs -
Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement
https://link.springer.com/article/10.1007/s10354-026-01182-3
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs #PwME #CFS #ME #MyalgicE #SevereMECFS
#SevereCFS #VerySevereME
@mecfs -
Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement
https://link.springer.com/article/10.1007/s10354-026-01182-3
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs #PwME #CFS #ME #MyalgicE #SevereMECFS
#SevereCFS #VerySevereME
@mecfs -
Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement
https://link.springer.com/article/10.1007/s10354-026-01182-3
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs #PwME #CFS #ME #MyalgicE #SevereMECFS
#SevereCFS #VerySevereME
@mecfs -
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full
#MEcfs #CFS #PwME #SevereME #SevereMECFS
#SevereCFS #VerySevereME @mecfs -
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full
#MEcfs #CFS #PwME #SevereME #SevereMECFS
#SevereCFS #VerySevereME @mecfs -
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full
#MEcfs #CFS #PwME #SevereME #SevereMECFS
#SevereCFS #VerySevereME @mecfs -
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full
#MEcfs #CFS #PwME #SevereME #SevereMECFS
#SevereCFS #VerySevereME @mecfs -
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full
#MEcfs #CFS #PwME #SevereME #SevereMECFS
#SevereCFS #VerySevereME @mecfs -
18/
May is #MyalgicEncephalomyelitis (ME) Awareness Month.
You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on a young UK woman with
severe ME
https://www.youtube.com/watch?v=cPH3kKkEYAI -
18/
May is #MyalgicEncephalomyelitis (ME) Awareness Month.
You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on a young UK woman with
severe ME
https://www.youtube.com/watch?v=cPH3kKkEYAI -
18/
May is #MyalgicEncephalomyelitis (ME) Awareness Month.
You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on a young UK woman with
severe ME
https://www.youtube.com/watch?v=cPH3kKkEYAI -
18/
May is #MyalgicEncephalomyelitis (ME) Awareness Month.
You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on a young UK woman with
severe ME
https://www.youtube.com/watch?v=cPH3kKkEYAI -
18/
May is #MyalgicEncephalomyelitis (ME) Awareness Month.
You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on a young UK woman with
severe ME
https://www.youtube.com/watch?v=cPH3kKkEYAI -
8/
May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.It was made by a woman, Laurel, with severe ME @dreamsatstake . Living with Severe ME (5 minutes 13 seconds)
https://youtu.be/LvweCk44WHsDay 8
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8/
May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.It was made by a woman, Laurel, with severe ME @dreamsatstake . Living with Severe ME (5 minutes 13 seconds)
https://youtu.be/LvweCk44WHsDay 8
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8/
May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.It was made by a woman, Laurel, with severe ME @dreamsatstake . Living with Severe ME (5 minutes 13 seconds)
https://youtu.be/LvweCk44WHsDay 8
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8/
May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.It was made by a woman, Laurel, with severe ME @dreamsatstake . Living with Severe ME (5 minutes 13 seconds)
https://youtu.be/LvweCk44WHsDay 8
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8/
May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.It was made by a woman, Laurel, with severe ME @dreamsatstake . Living with Severe ME (5 minutes 13 seconds)
https://youtu.be/LvweCk44WHsDay 8
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(UK)
#ThereForME co-founder Karen Hargrave writes about applying for Continuing Healthcare fundinghttps://www.thereforme.uk/p/why-is-continuing-healthcare-funding
Screenshot from latest Science for ME weekly update
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs -
(UK)
#ThereForME co-founder Karen Hargrave writes about applying for Continuing Healthcare fundinghttps://www.thereforme.uk/p/why-is-continuing-healthcare-funding
Screenshot from latest Science for ME weekly update
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs -
(UK)
#ThereForME co-founder Karen Hargrave writes about applying for Continuing Healthcare fundinghttps://www.thereforme.uk/p/why-is-continuing-healthcare-funding
Screenshot from latest Science for ME weekly update
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs -
(UK)
#ThereForME co-founder Karen Hargrave writes about applying for Continuing Healthcare fundinghttps://www.thereforme.uk/p/why-is-continuing-healthcare-funding
Screenshot from latest Science for ME weekly update
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs -
(UK)
#ThereForME co-founder Karen Hargrave writes about applying for Continuing Healthcare fundinghttps://www.thereforme.uk/p/why-is-continuing-healthcare-funding
Screenshot from latest Science for ME weekly update
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs -
Stonebird books on severe ME and caring now available to download for free
Screenshot from Stonebird Facebook page (of Greg & Linda Crowhurst)
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#SevereME #SevereMECFS
#SevereCFS #VerySevereME #PwME -
Stonebird books on severe ME and caring now available to download for free
Screenshot from Stonebird Facebook page (of Greg & Linda Crowhurst)
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#SevereME #SevereMECFS
#SevereCFS #VerySevereME #PwME -
Stonebird books on severe ME and caring now available to download for free
Screenshot from Stonebird Facebook page (of Greg & Linda Crowhurst)
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#SevereME #SevereMECFS
#SevereCFS #VerySevereME #PwME -
Stonebird books on severe ME and caring now available to download for free
Screenshot from Stonebird Facebook page (of Greg & Linda Crowhurst)
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#SevereME #SevereMECFS
#SevereCFS #VerySevereME #PwME -
Stonebird books on severe ME and caring now available to download for free
Screenshot from Stonebird Facebook page (of Greg & Linda Crowhurst)
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#SevereME #SevereMECFS
#SevereCFS #VerySevereME #PwME