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Caring for someone with severe ME – DanPadLab
A running journal of the realities of caring for someone with severe ME.
Bluesky · Hashtag
#SevereME
59
posts · 30d
21
users
2
posts / day
2.8
posts / user
+ 280% vs last week
#SevereME is an active hashtag on Bluesky. In the last 30 days, 21 people shared 59 posts with it — around 2 a day. Activity is up 280% versus the previous week, peaking on Aug 25 with 5 posts.
#SevereME posts per day (last 30 days)
Related tags
Tags most often used together with #SevereME.
Posts with #SevereME
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 💙
#SevereME #MEcfs #PwME
1/
1 6 18
5/5
pharmakologischer Forschung:
eine medizinethische Auseinandersetzung mit der desolaten Versorgung,
die Anerkennung gesellschaftlicher Verantwortung und endlich konkrete Hilfe für
ME/CFS-Betroffene.
@bmg-bund.bsky.social
#PEM #SevereMe #VerySevereMe
#MeKills #NoGET
#Stigmatisierung
3 11 158
Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark.
This looks really amazing!!
vimeo.com/user10350947...
#pwme #myalgicE #millionsmissing #severeME
1 11 19
„Bitte, bitte helfen Sie mir!“
Ein Satz,den viele ME/CFS
Betroffene nur noch schriftlich äußern können –
weil auch Sprechen zu
#PEM Crashs führen kann.
Die Unterstellung,
dieser Zustand sei
„psychisch bedingt“,
ist nicht nur absurd -
sondern lebensgefährlich.
#MEcfs #ME #SevereME #PEM #MEKills
5 52 127
1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME.
It is one of the only places where the sickest patients can receive specialised care.
We need this everywhere!!
#pwme #myalgicE #millionsmissing #severeME
6 52 124
Dear doctors & therapists:
When patients say:
“I crash after brushing my teeth,”
“Sleep doesn’t help,”
“Even short talks knock me out,”
or “I feel flu-sick every day” - think #PEM.
Not depression.
This is #MECFS.
Protect. Don’t activate.
#MEAwarenessMonth #NoGET #SevereME
1 55 120
Bei der diesjährigen ÖGPH (Österreichische Gesellschaft für Public Health) Tagung unter dem Titel „Unified Health in a Globalised World“ war #SevereME und #VerySevereME in den 7 nominierten Abstracts (aus über 300 Einreichungen) für den Horst Noack Preis vertreten.
#MECFS
oeph.at/oegph-2026/
1/2
2 4 21
TRAILER: Buried Alive with M.E.
I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm.
People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death.
#pwme #millionsmissing #severeME
1/
5 51 99
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 💙
#SevereME #MEcfs #PwME
1/
1 6 18
Seriously, we get erased so fast, faster than our most vulnerable peers even
gofundme.com/f/save-nevra
PayPal.me/SaveLizNevra
#pwME #mecfs #severeME #verysevereME
0 1 1
When will things change?! #SevereME
@jennywi.bsky.social
A teenage severe ME patient has v. recently had her front door smashed in by police and her mum taken away and put in a cell after the GP made a complaint. Mum is still on bail and not permitted to make contact with her daughter, who had two policemen put on 24-hour guard duty by her bed.
0 2 3
This trip, some of the ways Soph and I connect became harder for her and rarer as a result. She also skipped half of the lunches so I saw her less. Everything gets taken from us eventully.
#severeME #MECFS #pwME
21/09/2026 Losing connection
padpadpadpad.netlify.app/….
0 1 2
#MEcfs folks, they're so close to £23k - still not their stretch target, but close. I've just put in another £250, I can't afford more right now. If you can add a few quid, it all helps. May come to nothing but, personally, I feel better knowing that this work is happening. #SevereME
Firstname Lastname #FuckTrump @notunpackedyet.bsky.social
Ps. I know you'll have a lot of responses, and you may already be aware, but it's interesting to note that a group of ppl in ME community have been taking legal action over government inaction: NHS care for ME now share.google/8T1umLrKRla4...
share.google
0 3 6
Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark.
This looks really amazing!!
vimeo.com/user10350947...
#pwme #myalgicE #millionsmissing #severeME
1 11 19
Having a case of “I don’t wanna go to the dentist”. It’s hard having to do things I know will make me worse.
My body wants to rest, not push really hard and be out of the house for hours.
The last day I drove was to the dentist 2 years ago. Haven’t driven since. Never recovered. #SevereME #mecfs
1 0 6
"A Special Tribute to Anil van der Zee | 2026 Amsterdam ISLC-PAIS Conference"
Thanks to Fred Verdult for his talk and for organizing the honor. Thanks to Michael Chapman for the video of this special moment.
vimeo.com/whei/anil-ro...
#pwme #myalgicE #millionsmissing #severeME
vimeo.com
A Special Tribute to Anil van der Zee | 2026 Amsterdam ISLC-PAIS Conference
A special moment during the 2026 Amsterdam ISLC-PAIS Conference Patient Recap Session. Fred Verdult shares the news that Anil van der Zee has received a Royal Honour from the Mayor of Amsterdam, recog...
0 5 13
Apparently sitting up for a minute to stare forlornly at my TV is a luxury I can't afford.
#severeME #lowspoons #millionsmissing #imtiredofthis #chronicillness
1 0 3
Danke @annachristinam.bsky.social, @lucimair.bsky.social, Silvia Wojczewski, @astridhainzl.bsky.social, @leiss.bsky.social, @kathrynhoffmann.bsky.social & alle Studienteinehmer:innen! 🙌💪💐
#SevereME #VerySevereME #MECFS
2/2
0 1 10
Bei der diesjährigen ÖGPH (Österreichische Gesellschaft für Public Health) Tagung unter dem Titel „Unified Health in a Globalised World“ war #SevereME und #VerySevereME in den 7 nominierten Abstracts (aus über 300 Einreichungen) für den Horst Noack Preis vertreten.
#MECFS
oeph.at/oegph-2026/
1/2
2 4 21
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