@ramsestemmerman.bsky.social"Arnaud Denis was een bekende Franse acteur, theaterregisseur/toneelschrijver. Na een operatie voor een liesbreuk in 2023 kreeg hij ernstige gezondheidsproblemen, waaronder chronische pijn en #MEcvs (myalgische encefalomyelitis/chronisch vermoeidheidssyndroom)."
@eileenparkes.bsky.socialThanks for writing this #millionsmissing
@crashmargulies.bsky.socialNew blog post: Memorializing ME/cfs Deaths - Arnaud Denis
@anilvanderzee.bsky.socialGreat rant by George Monbiot about the fact despite new guidelines patients with ME are still poorly treated in the UK. Unfortunately it doesn't seem be much better elsewhere such as the Netherlands...
#pwme #myalgicE #millionsmissing #severeME #LongCovid #PAIS #IACI
@cludaix.bsky.socialYour skeet is a slap in the face of every person that experienced trauma and ongoing sickness because of covid, imho. It is still supported by science to wear a mask and every time i see someone with a mask i don't feel alienated at all but SEEN, respected and not forgotten! #millionsmissing
@anilvanderzee.bsky.socialWow. 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!!
@anilvanderzee.bsky.socialA blog about the response of many denialist dismissive cognitive dissonance comments on social media whenever they are confronted with very severe ME in the media.
@anilvanderzee.bsky.social"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.
@alex-wears-crocs.bsky.socialApparently sitting up for a minute to stare forlornly at my TV is a luxury I can't afford.
#severeME #lowspoons #millionsmissing #imtiredofthis #chronicillness
@anilvanderzee.bsky.socialVanaf vandaag is deze hand-out mét stappenplan ter ondersteuning van patiënten met post-acuut infectieuze ziektes gratis te downloaden via:
www.devragendokter.nl/webshop/prod...
#pwme #myalgicE #millionsmissing #severeME #LongCovid #lyme #QVS #postsepsis #PAIZ #PAIS #IACC
@anilvanderzee.bsky.social@anilvanderzee.bsky.socialMy illness is not part of my identity.
Some late‑night, off‑the‑cuff rambling about the notion that some people make their illness part of their identity.
This was partly in response to that Telegraph article.
@lawerne.bsky.socialAmen.
Was für eine Odyssee. Verschenkte Lebenszeit. Ein Desaster. Und unsagbar traurig.
Bin mittlerweile bei einem Bell-Score von 10 angekommen. ✌️
Warum hat man nicht früher E I N M A L richtig hingekuckt?
#mecfs #severemecfs #longcovid #me/cfs #millionsmissing
@anilvanderzee.bsky.socialMijn reactie op een uit de duim gezogen stressmodel voor "CVS" in Medisch Contact.
@anilvanderzee.bsky.socialFor World Suicide Prevention Day. Adult patients affected by ME are at an increased risk of death by suicide, but as a health care professional you can help instead of harm.
#pwme #myalgicE #millionsmissing #severeME #suicidepreventionday
@crashmargulies.bsky.social@crashmargulies.bsky.socialEssay too long? Like images instead? Here's a shortened version!
#MEcfs #PENE #PEM #MillionsMissing
[A thread of slides with an orange, scarlet, blue, and teal textured background. Each slide says, "read more @ crashmargulies.dreamwidth.org " Full alt text on each img]
@stpaulsbay.bsky.socialA hyper-reactive MR creates a cellular "cortisol steal" that traditional tests can't see. Your blood work looks "normal," but your tissues are starving for glucocorticoids that are being stolen in the cell. Why isn’t anyone demanding clinical trials on receptor kinetics?
#Millionsmissing
#pwMe