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.
18.01.2026 13:58 — 👍 20 🔁 6 💬 11 📌 6
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.
2/
“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
Je kunt mijn reactie hier lezen: anilvanderzee.com/waarom-het-n...
22.12.2025 14:32 — 👍 0 🔁 0 💬 0 📌 0
Zeer opmerkelijk, maar zover ik weet is de inhoudelijke invloed van de voorzitter op het rapport minimaal. Dit lijkt meer voor de vorm en zal weinig aan het rapport zelf veranderen. Wat mij betreft zouden alle auteurs van het alternatieve feiten NTVG-stuk over Long-Covid moeten opstappen.
22.12.2025 14:32 — 👍 0 🔁 0 💬 1 📌 0
2) pattern is not seen in depression, anxiety, chronic stress, neurodegenerative, or inflammatory brain diseases, where CRH neurons are usually present and often overactive. If confirmed, this points to a potentially unique hypothalamic pathology in ME.
#pwme #myalgicE #millionsmissing
1) Dutch researchers found an unexpected and profound abnormality in ME: instead of increased CRH activity, there were almost no CRH-producing neurons visible in the hypothalamus, with strongly reduced CRH in fibers to the pituitary.
me-cvsvereniging.nl/nieuwsberich...
According to ChatGPT this
5) I was. Right now I have “just” severe ME.
Anyway, I sincerely hope never to experience that again, but without effective treatments you really never know.
And that's scary AF...
#pwme #myalgicE #millionsmissing #severeME
4) Sometimes people refer to me as having very severe ME in my current state, but that is not the case. When I watch more recent videos and see how well I can speak or handle light, phones, and laptops, I am light years away from how I was then. At that time I was close to very severe ME, or maybe
20.12.2025 14:44 — 👍 7 🔁 1 💬 1 📌 0
3) my vocal cords.
This was one of my first attempts to speak longer sentences again. Listening to my voice brings back the fragility of my state at the time, but also the trauma of not receiving any care when I was in desperate need of it. It is quite shocking to hear it again.
Sometimes people
2) After a virus I was unable to eat because of MCAS complaints and lost a lot of weight. I was also unable to speak properly for a couple of years. I could only manage a few words, mostly whispering. Speaking would make me crash because I could not push the air out of my lungs or properly use
20.12.2025 14:44 — 👍 4 🔁 1 💬 1 📌 0
