Tom KindlonME 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
The UK Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS
Screenshot from latest Science for ME weekly update
ahimsaAnyone can get ME/CFS.
And I want to emphasize that folks who were healthy & active before ME/CFS are no more deserving of our empathy than those folks who were not!
But I hope this story helps people understand no one is "too healthy" to get this disabling illness. FYI, COVID infection can trigger ME/CFS.
"Our son loved the outdoors - invisible illness means he now can't walk or talk"
https://www.bbc.com/news/articles/cpv8e71p3evo
#MEcfs #SevereME #LongCovid #PostCovid #CovidIsNotOver #ChronicIllness
“The 126th edition of the Research Digest brings together clinical, biological, and lived-experience perspectives to strengthen our understanding of long COVID and its overlap with ME/CFS.”
https://emerge.org.au/researchdigest/research-digest-issue-126/
Emily JohnsonIf you have #SevereME, like me, you are valuable however and whenever you can show up
I’ve hosted monthly support group meetings for Iowa #dysautonomia and #EDS patients for years, it takes a lot, can’t always do it, but everyone is grateful for these spaces no one else provides
UK NHS England releases e-learning module “Supporting people with severe ME/CFS”
https://learninghub.nhs.uk/Resource/79376/Item
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs
15/
More from a series of comic strips about life as a person with ME/CFS.
"George and His ME/CFS"
🎨Rick Menard
This is the last one.
Quote:
A former supervisor of mine said to me about 25 years ago: “It must be nice to be a PWD (person with disability) on assistance; you get to sit around, eat bon bons, and watch TV.”
After I took the knife out of my chest, my reply was: “No, it’s like being a very large tiger trapped in a very small cage chewing on the bars.”
"Marcia: Life with severe ME is like screaming into the void"
https://thesicktimes.org/2026/03/20/marcia-life-with-severe-me-is-like-screaming-into-the-void/
"Hope is tricky business. On the one hand it keeps me alive, it fuels my tenacity, it helps me take a deep breath and do my best to understand other people’s perspective so I can better build communication bridges."
