This looks like an interesting and much needed project.
In Neunkirchen-Seelscheid in Germany, a housing project is being planned especially for severely ME/CFS sufferers with 24-hour assistance.
sozialhummel.de/wohn...
Ondertussen liggen veel Long Covid patiënten al 5 jaar te creperen. En vele PAIS patiënten al decennia - ikzelf dus al ruim 7,5 jaar, waarvan nu bijna 5 vrijwel volledig bedgebonden en in het donker.
Er gebeurt nu eindelijk wel iets, ook in Nederland, maar het is laat, langzaam en weinig (een druppel op een gloeiende plaat) en er komt maar geen lange termijn en overkoepelend plan. Over adequate preventie is er al helemaal radiostilte.
Er gloorde ook iets van hoop; met zo ontzettend veel nieuwe patiënten tegelijkertijd, op deze wereldwijde schaal, moest er wel verandering komen toch? Toch...?
Helaas is de ernst van deze PAIS (Post Acute Infectieuze Syndromen) decennia lang genegeerd en slecht of niet onderzocht.
Het was en is enorm heftig om zoveel mensen zoveel aspecten van hun leven te zien verliezen, terwijl jij weet wat voor ellende en gebrek aan zorg hun te wachten staat.
#5JaarLongCovid
5 jaar geleden keek ik, als toen al huisgebonden ME patient, aan de zijlijn mee hoe Covid een ravage aanrichtte.
Het leed is enorm, evenals de economische schade.
Beste overheid, waar blijft sterk beleid?!
#NietHersteld #5JaarLongCovid #5YearsLongCovid #LongCovidAwarenessDay2025
Al snel (bij ons patiënten tenminste) werd duidelijk dat een grote groep patiënten niet herstelde. Geen verrassing zou je denken, want dit was ook het geval bij eerdere SARS en MERS en bij vele andere infecties.
Graphic met een witte achtergrond met daarop de tekst in zwart: ‘5 Jaar Long Covid nog steeds #NietHersteld’, waarbij #NietHersteld in een blauw vlak staat. Eronder staat in witte tekst in een blauw vlak: ‘Long Covid Awareness Day 2025’ en eronder een blauw pijltje. Bovenin staat het logo van Berlin Buyers Club in het zwart en een smiley met x oogjes.
🚨5 jaar Long Covid, nog steeds #NietHersteld !
Op 15 maart, #LongCovidAwarenessDay2025, is het tijd voor actie! Want ook al zie je ons misschien niet, we zijn er nog wel. En hoe er nu met deze groep omgegaan wordt kan niet langer! Samen kunnen we van ons laten horen! ✊💙 Doe je mee? #LongCovid🧵
It’s hard to explain the hope I had at the beginning of the pandemic. I was scared, but I also thought we were going to become a more inclusive society. We would care more about chronic illness.
Having that hope ripped away and replaced with eugenics & fascism has been incredibly painful.
An off label medication list has been compiled for cover from the Austrian Health Insurance Fund for ME/CFS and Post Covid Sydrome (long Covid) www.meduniwien.ac.at/web/referenz...
I’ve used ChatGPT to translate them in the replies below this post in case it helps anyone else 🧵
Apparently, yet another well-respected figure of Long COVID research has said that we should move past the use of questionnaires and start doing trials using only biomarkers, so here is yet another thread on why that’s confused and harmful to sick people. Buckle up!
Gecondoleerd 🫂💔
💔 sterkte op alle vlakken 🫂
Before you judge a disabled person for the way they’re coping with the messiness of life …consider the sickest you ever were. Maybe it was a flu or an infection thst required surgery
Try and remember the pain, fatigue & crushing monotony of it
Now imagine knowing it would never end. Then be kinder
Interesting background information, I am now even more puzzled (and disappointed!) by the Cochrane decision.
🫂💔
Screenshot of abstract
8-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves.
Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol
tandfonline.com/doi/full/10....
#MEcfs #CFS
Agree that this is an important missing piece (also in ME research). Plays a big part, especially in severe patients. I could not participate in any clinical trial (even if they would be there) because of this.
Even Mast Cell stabilizer I had to start at a tiny dose to not set off the whole system.
The last half of the 1990s was when the false image of ME/CFS as a
“yuppie“ disease began to crumble, thanks to good work done by Leonard Jason and others like this west coast group. I had been ill for over 13 years before the CDC finally acknowledged that Black people like me could have ME/CFS.
Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here.
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social
Day 10/20
I'm afraid of men by Vivek Shraya
#BookSky💙📚
#Books
#BookChallenge
Day 9/20
Red star over China by Edgar Snow
#BookSky💙📚
#Books
#BookChallenge
Day 8/20
Comfortable with uncertainty by Prima Chödrön
#BookSky💙📚
#Books
#BookChallenge
Yes ... Although observing and analyzing them was quite interesting! I found a (hopefully THE) nest today under a house plant, so it should be over soon.
Het Achterhuis door Anne Frank
Day 7/20
The Diary of Anne Frank
#BookSky💙📚
#Books
#BookChallenge
Oh, I loved that book. As an ME patient myself the complete shrinking of one's world really resonated with me. Currently I have (uninvited) ants to observe, but they are pretty fast - would love watching a snail.
Day 6/20
The Idiot by Fyodor Dostoevsky
#BookSky💙📚
#Books
#BookChallenge
A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
