#severeme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #severeme, aggregated by home.social.
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“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller
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“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller
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“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller
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“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller
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“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller
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ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS
Screenshot from latest Science for ME weekly update
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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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For severe ME day
ME Association: Mahli Quinn Art Severe and very severe ME comic £3 A comic from Mahli Quinn that may help you convey some of the worst aspects of living with severe and very severe ME. For every comic purchased the ME Association receives a donation of 50p!
https://meassociation.org.uk/csme
#VerySevereME #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #SevereMEDay #MEcfs #PwME #CFS #ME #MyalgicE
@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 -
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 -
RE: https://troet.cafe/@Lalelilolu/116874017709438257
Do you have followers from Germany, Austria or Switzerland (who know s.o.) with severe ME? The link below might be interesting.
What it's about:
"The Severe & Very Severe ME Research Registry is an independent, private initiative aimed at making people with severe and very severe ME in German-speaking countries (Germany, Austria and Switzerland) more accessible to scientific research."
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ME Research UK:
"There are currently no plans to develop a separate specification for severe and very severe ME/CFS." Government rejects developing a NHS England-wide template service specification revealed in parliamentary answer. https://tinyurl.com/efww9ntj
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It would be wonderful if similar facilities were available in other countries
Specialised care for severely affected ME/CFS patients
https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2565101
Screenshot from AMMES June 2026 newsletter
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May is Myalgic Encephalomyelitis (M.E.) Awareness Month.
You can help by sharing and/or liking this 15-minute video on #SevereME & #VerySevereME: "Severe & Very Severe ME / CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"
Includes comments from professionals (incl. Drs Muirhead/Weir/Speight/Shepherd/Nacul & Caroline Kingdon (nurse), patients & carers (incl. Association chairperson) Discusses various distressing topics http://www.dialogues-mecfs.co.uk/films/severeme/
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“People have no idea what Severe ME is like” – Nevra, Pakistan
Unfortunately, Nevra's condition keeps getting worse. If you can, please support her GoFundMe campaign.
Thanks!Articles about Nevra:
November 2024
https://www.thecanary.co/global/world-analysis/2024/11/07/nevra-mecfs-pakistan/April 2024
https://worldmealliance.org/2024/04/people-have-no-idea-what-severe-me-is-like-nevra-pakistan/#GlobalVoiceForME
#Pakistan
#SevereME
#MECFS
#disability
#POTS
#MCAS
#PMDD
#OCD
#Hypermobility
#endometriosis
#TMJdisorder
#CCI
#domesticviolence -
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Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia)Would be great if hospital staff took these recommendations on board.
#MEcfs @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#SevereME #VerySevereME #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs1/
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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 -
Care instructions for how to take care of people with severe ME.
Google translation:
https://drive.google.com/file/d/1phdngalXgINYG-4eiySeyE1VumaZg7aN/viewScreenshot from latest Science for ME weekly update
#SevereME #MEcfs #CFS #PwME #VerySevereME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome -
Very sad to report that longtime mutual journalist and author @bridget_oshea of ME/CFS Evolving Awareness on Substack and a longtime Twitter mutual passed away July 16 after a heart attack following a years-long struggle suffering from #MECFS.
I’ve lost so many friends and acquaintances to #SevereME and #VerySevereME, especially during the last 8 years when I became Severe.
Will remember you always, Bridget. 💙🕯️
https://www.dignitymemorial.com/obituaries/chicago-il/bridget-oshea-12458050
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Rutsche wohl endgültig in very severe ab. Habe gestern nach über drei Wochen zum ersten Mal geduscht. Bin heute komplett gecrasht. Kann kaum sprechen. Der ganze Körper ist bleischwer. Muss im Liegen essen.
Ich hab solche Angst.
#MEcfs #severeME #verysevereME -
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May is Myalgic Encephalomyelitis (M.E.) Awareness Month.
You can help by sharing and/or liking this 15-minute video on #SevereME & #VerySevereME: "Severe & Very Severe ME / CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"
Includes comments from professionals (incl. Drs Muirhead/Weir/Speight/Shepherd/Nacul & Caroline Kingdon (nurse), patients & carers (incl. my mum) Discusses various distressing topics http://www.dialogues-mecfs.co.uk/films/severeme/ Day 27
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11/
#May12 is #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Day
&
May is #MECFSawarenessmonth
Please help by reposting and/or liking this 12-minute documentary which features Whitney Dafoe & others
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Part 2 of 2
It may be easier to read it this way
#SevereME
#VerySevereME
@mecfs #mecfs -
Bateman Horne Center:
We’re excited to share the Caregiving Resource Guide — a collection of practical tips from experts and caregivers who spoke at the Severe #MECFS Caregiving Webinar Series. Many suggestions can also empower those who don’t have a dedicated caregiver.
@severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
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
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Just one week to go with Lee Colligan’s marathon 2500km walk around Ireland in memory of his brother and in aid of ME.
People can donate to us at
https://www.idonate.ie/fundraiser/LeeColliganDonation link for Action for ME
https://joshcolligan.muchloved.com/#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #millionsmissing #EndMECFS @severeme -
“In England, Conflicts Between Families and Hospitals Threaten the Lives of Young Women with ME” by David Tuller DrPH
About the desperate situation of #severeME patients not getting help from hospitals with necessary feeding tube fitting.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing
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Byline Times: 'A Rollercoaster Of Awful Emotions': Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients
The heartbreaking & currently ongoing critical case of #severeME sufferer Millie McAnish
#SevereMEcfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME @severeme #severecfs1/
