Anil’s film will be part of our upcoming online exhibition, ‘Myalgic Encephalomyelitis Kills’, which will be launched on May 12th! Check out his trailer!
Today is the last day to submit your artworks to us.
www.aquietstorm.me/open-call-me...
Inspired by German protests using body bags.
ME kills — directly, and through neglect.
Full film drops May 12 (ME Awareness Day).
NL folks: see it early at Ongebroken in Amsterdam, Apr 29–May 5.
🔗 aquietstorm.me
🔗 ongebroken.nl
See you there?
#pwme #myalgicE #millionsmissing #severeME
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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
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Have you tried yoga for long‑COVID?”Yes. Science did (again? Why FFS!!). It did NOTHING.
Yoga does not cure #longCOVID. But it does cure people telling me to try yoga.
Namaste anyways.
PS: they'll probably keep trying as this was feasibility study...
www.sciencedirect.com/science/arti...
Great analysis. The authors are overstating their findings.
It could also be that people have some quirks in the immune system that causes remains of viral fragments to stay longer even though they're not the cause of the symptoms itself? So it's more a result of than the cause?
Persistent SARS-CoV-2 Spike is Associated with Localized Immune Dysregulation in Long COVID Gut Biopsies
Watch out, a preprint with issues that will prevent publication in higher impact journals.
www.biorxiv.org/cont...
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A post for Long-Covid Awareness Day.
www.facebook.com/100061511663...
#LongCovidawaressday #LongCovid #PAIS #IACI #pwme #millionsmissing
Samuel’s (21) Death Should Not Be In Vain.
An emotional interview with Samuel’s mother about the development of #severeME after #longCOVID and how he later told her that he had decided to "choose" assisted suicide, as well as the impact this had on her.
youtu.be/OMe0PBRwD8I?...
Theo Kuiphof vertrekt niet alleen uit het bestuur van ME/CVS NL, maar legt nu ook zijn functie neer binnen het bestuur van de PAIS-alliantie. Zijn vertrek markeert opnieuw een belangrijke verschuiving binnen PAIZ organisaties.
paisalliantie.nl/vertrek-theo...
A few things I've read recently: Maryland supports Long Covid research, @anilvanderzee.bsky.social on CBT in the Netherlands, and thoughts on hope and chronic illness:
virology.ws/2026/02/11/t...
@davetuller1.bsky.social quoting @anilvanderzee.bsky.social
The times, they are a-changin’?
On some tentatively hopeful signs…
#LongCovid
#ME
"De keuze is simpel: blijven we betalen voor langdurige uitval, of investeren we nu in herstel, kennis en perspectief? Voor BV Nederland is het antwoord helder. Investeren in PAIS-centra en onderzoek is niet alleen rechtvaardig, maar vooral verstandig."
www.volkskrant.nl/columns-opin...
"Ellen de Visser (de Volkskrant) is verkozen tot Villamedia’s Journalist van het Jaar 2025.
Het was een indrukwekkend stuk, mede omdat 't zoveel extra inspanningen heeft gekost om deze groep samen in een groot stuk te beschrijven.
#LongCovid #severeME #PAIZ #PAIS
www.villamedia.nl/artikel/is-v...
Gaat ook over PAIZ in z'n geheel.
archive.ph/2026.01.29-0...
"That a 21-year-old, suffering from a severe illness, a dramatic lack of care, and a lack of hope, sees no other way than assisted suicide is a sign of collective failure."
#MECFS #severeME #millionsmissing
Savannah is asking for anyone who can to email the chief medical director at the hospital. The Canary has drafted a template email, which can be sent as is, or adapted.
Send an email to stop this abuse & improve care for Savannah before it's too late!
#severeME
www.thecanary.co/uk/analysis/...
I don't think the PACE trial was robust and don't argue that. I'm so sorry you are reading the book this way. I have several people with ME read the book. Let's connect off line; Wessely read a version of the writing & threatened to sue me if it didn't include the other side. Happy to talk offline.
Anil van der Zee “Are Dutch psychologists distancing themselves from graded activity in ME/CFS?” ME/CFS blogger and advocate Anil writes about an article from two Dutch clinical psychologists, Klaas Huijbregts and Luuk Stroink, who critiqued the rigid application of CBT for ME/CFS and its focus on graded activity. While Anil sees this as a positive development, he also highlights some remaining problems with their approach.
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“Are Dutch psychologists distancing themselves from graded activity in ME/CFS?” by @anilvanderzee.bsky.social
anilvanderzee.com/nemen-nederl...
Screenshot from latest Science for ME weekly update
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
„Papa, I can't live like this, please kill me.“
archive.ph/6K1AQ
#kidswithME #LongCovidkids #pwme #myalgicE #LongCovid #severeME
Amazing imagery at my old working place at the Ballet du Grand Theatre de Genève.
It feels a bit like how life with severe ME feels. Dragging yourself around in bed in a big ass (brain) fog.
www.facebook.com/share/v/1DRD...
“Are Dutch psychologists distancing themselves from graded activity in ME/CFS?” by @anilvanderzee.bsky.social
Thoughtful, well-referenced (but long) blogpost about the value or otherwise of CBT and psychologists in ME/CFS
anilvanderzee.com/are-dutch-ps...
#MEcfs #PwME #CFS #CVS #MEcvs
Eine berührende Geschichte von Tom, der schwer an #MECFS erkrankt ist, erzählt von seinem besten Freund Jonas.
Danke Euch sowie auch @anilvanderzee.bsky.social für diesen eindrücklichen Beitrag. 💙
Vielen Dank auch an das @zdfde.bsky.social 37Grad, fürs sensibilisieren und sichtbar machen. 🙏
Amazing touching portrayal of Tom with severe ME made by his best friend Jonas, who's a film student.
I was honored to have been asked to share some of my life with ME.
You can turn on ENG auto-generated subs.
Watch it, share it!
youtu.be/XTWIWqzaG2c?...
#pwme #severeME
2 Nederlandse psychologen schreven een kritisch stuk over CGT voor CVS & graded activity in het blad Gedragstherapie. Een goede ontwikkeling.
Toch stonden er ook nog steeds verschillende problematische delen in. Ik ben daarom diep in de materie gedoken.
anilvanderzee.com/nemen-nederl...
In deel 2 v/d podcast Chronisch Onbegrepen vertel ik over schade van GET, onderzoeken van Rob Wüst en hoe het is om als patiënt er bij betrokken te zijn, over onze film Doctors as Patiënts en een oproep aan onze gezonde medemensen.
tr.ee/SS4yvp9ijF
#pwme @MEcvsVereniging
New petition UK Save Savannah Victora-May - Prevent Another ME Tragedy.
Please sign this petition!!!
c.org/QrfRt55v9d
Fijn om dit op 1 januari te zien. Er wordt direct weer aan de weg getimmerd. Veel dank hiervoor @zurhake.bsky.social.
#pwme #myalgicE #LongCovid #lyme #QVS #postsepsis #PAIS #PAIZ #PAIS #IACI #IACC #MillionsMissing
www.nporadio1.nl/fragmenten/n...
At some point it will happen right?
Staying chronically optimistic...
Happy less crappy new year to you all!!
#pwme #myalgicE #millionsmissing #severeME #photophobia #hyperacusis #POTS #banPEM #art2cureME #canyouseeMEnow #balletdancer #zorgbetervoorME #chronicillness #science
2025 edition.
It never gets old...
#pwme #myalgicE #millionsmissing #millionsmissing #severeME
