#severemecfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #severemecfs, aggregated by home.social.
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Wales Petition: Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care
https://petitions.senedd.wales/petitions/247069
Screenshot from latest Science for ME weekly update
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Science for ME @s4me Fact Sheet 4: Management of severe and very severe ME/CFS
https://s4me.info/docs/Management%20of%20severe%20and%20very%20severe%20MECFS.pdf
https://s4me.info/threads/fact-sheet-4-management-of-severe-and-very-severe-me-cfs.51793/
Screenshot from latest Science for ME weekly update
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ME Research UK:
An article entitled “Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement” has been published.
Read more: https://tinyurl.com/yc264wbm
#severeme #verysevereme #severemecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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What to do in a severe PEM crisis?
Is it time to call an ambulance anyway and maybe go with her to try to advocate?
Any BC/Canada specific advice about getting emergency home care?
Just rest until morning?
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From #MEAction for Severe ME Day (Aug. 8)
"Honoring Severe ME Day & Sharing our Severe ME Artists Project 2026"
https://www.meaction.net/post/honoring-severe-me-day-sharing-our-severe-me-artists-project-2026
"#MEAction is proud to share the Severe ME Artists Project 2026!
... over 100 of you submitted photos, drawings, writing, and videos of your work! We debuted this project in 2021 and five years later we continue to be humbled and honored to bring you the work of the Severe ME community"
1/3
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Today is Severe ME Day (August 8)
Here's a video posted by Solve ME last year:
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Hollis Mickey shares her personal experience with pacing and Severe M.E. -- including some of the less obvious types of exertion to be considered when pacing."
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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 -
One week ago to August 8, #SEVEREMEDAY
I have a Pinterest board with 714 pins on #severeMECFS here https://ie.pinterest.com/tomkindlon/mecfs-severe-mecfs-mecfs-myalgic-encephalomyelitis/ that could be shared around. It mainly contains images but also links to videos & articles
You don't need to be on Pinterest
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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 -
A Quiet Storm is an online art gallery showcasing the artwork of people who have lived with severe ME/CFS
https://meglobalchronicle.wordpress.com/2026/06/04/a-quiet-storm/
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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 -
Graphit- und Kohlezeichnungen von Leander
(Bild-Zeitung-Link)
https://m.bild.de/regional/thueringen/das-traurige-geheimnis-hinter-dieser-zettel-kunst-69bfe1898f5761671715b5b3 -
ME Research UK:
A team of researchers have published a study investigating lived experiences of people with ME/CFS using data from posts made on social media.
Read more: https://tinyurl.com/mj2p8c24
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BBC Wales covers ME/CFS with text and radio pieces
https://www.bbc.com/news/articles/cpv8e71p3evo
https://www.youtube.com/watch?v=r1S2NMf8-uY
Screenshot from latest Science for ME weekly update
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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 -
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 -
A source for soundproofing material. From a report on a carers' group meeting.
Links:
https://www.audimute.com/?srsltid=AfmBOoroq-oztCCyDsWYuOfTj0brxVBYOTicWgLq0x0-AfSMtfxwM4Wahttps://www.amazon.com/stores/Audimute/page/A4D2379B-B4AD-4700-A085-096A2AF15C1F
COI: I have no financial or other interest in these companies
#SoundSensitivity #NoiseSensitivity #LongCovid #MEcfs #CFS #PwME #SevereME #SevereMECFS @longcovid @mecfs
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"In this article, we have used the case of a woman with life-threatening malnutrition as a consequence of a number of diseases, including severe ME/CFS, to illustrate and discuss the problems this disease can cause and the impact it can have."
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Extract from new paper:
An Overview of Severe Myalgic EncephalomyelitisFree fulltext:
https://www.mdpi.com/2077-0383/15/2/805#SevereMECFS #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @severeme
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Great to have this new review for a relatively neglected area in the research literature
An Overview of Severe Myalgic Encephalomyelitis
Free fulltext:
https://www.mdpi.com/2077-0383/15/2/805#MyalgicEncephalomyelitis #SevereME #MEcfs #CFS #PwME #ChronicFatigueSyndrome #SevereMECFS @severeme
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Abstract for:
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue SyndromeFree fulltext:
https://www.sciencedirect.com/science/article/pii/S0277953625010974#SevereMECFS #SevereCFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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"The human body and mind were not designed to be encased in darkness, yet, for so many of us, this is our enforced mode of existence." -
Telehealth as a Care Solution for Homebound People: Systematic Review and Meta-Analysis of Healthcare Utilization, Quality of Life, & Well-Being Outcomes
https://onlinelibrary.wiley.com/doi/full/10.1155/hsc/7224151
"telehealth emerges as a viable alternative to conventional care, significantly reducing healthcare utilization & enhancing both HRQOL and well-being for #homebound people"
#chronicillness #Spoonies #Spoonie #SevereME #SevereMECFS @mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC -
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“These results indicate that it may be beneficial for severely and very severely affected ME/CFS patients to be cared for in an environment where they are met with respect, understanding with the aim to reduce PEM as much as possible.” -
Today is the day to remember those with severe and very severe ME (Myalgic Encephalomyelitis). You are not forgotten.
#SevereMECFS awareness Day
Mild, people can't tell you're sick and suffering - severe is just a terrifying existence 😭😭😭 you're missing from your life.