#severeme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #severeme, aggregated by home.social.
-
“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller
-
“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller
-
“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller
-
“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller
-
“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller
-
I thought this was very good (as usual from Amy Mooney). Notice the audio version.
"Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"
-
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
-
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
-
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
-
-
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
-
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."
-
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
-
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/
-
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 -
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
-
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
-
(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
-
A topic of interest to some in #chronicillness community who could benefit from home visits
News Release
Primary care home visits for older adults declined after payment policy changes & COVID-19 in Ontario
https://www.eurekalert.org/news-releases/1114111https://www.annfammed.org/content/24/1/44
#Homebound #Housebound #SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability -
3/
"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."
-
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
-
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 -
A veces se hace duro ver tanta vida fuera, dejando pasar la mía entre estas paredes.
Y a la vez agradecer poder estar al día de cosas que nunca vería o sabría si no fuera por una pantalla.
Hace años el aislamiento debería ser aún más duro.#EncefalomielitisMialgicaSevera #EncefalomielitisMialgica #MEcfs #EMsfc #SFCem #severeME #encamada #confinamiento #pacientes #cronicos #bedbound #housebound #aislamiento #isolation #soledad #lonely #Lonelines #autoimmunes #Metabólicas #autoimmune
-
This is why I didn't go to my siblings 3 weddings incl. one that was just 2km from me.
I was too busy running the @IrishMECFSAssociation alongside trying to critique BPS output like the #PACEtrial
I haven't improved since then, just not working quite so hard.
#SevereME @mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE
