Anil van der Zee
@anilvanderzee.bsky.social
Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using BlueSky to raise awareness for #MyalgicE | #IACC I #PAIS #art2cureME #pwme #millionsmissing
Most of the PAIS disease burden is ME. We need to communicate that better. I'm really glad about all the media attention for PAIS in the Netherlands right now, and glad that ME is being mentioned more and more often. (Thread transposed from Dutch) 1/10
A long time ago, on a website now owned by a fascist, there was a wonderful and supportive community of patients, doctors and researchers, and people who were a bit of each. We'd have insightful discussions on ME pathophysiology, the latest research papers and clinical trial methodology. 🧵
"Minister Sophie Hermans trekt na 2027 geen geld meer uit voor de zes expertisecentra voor zorg en onderzoek naar #longcovid. Een ramp, vinden artsen en patiëntenorganisaties." www.trouw.nl/binnenland/a...
Artsen en patiënten ontdaan over het stopzetten van de financiering van expertisecentra long covid
Minister Sophie Hermans trekt na 2027 geen geld meer uit voor de zes expertisecentra voor zorg en onderzoek naar long covid. Een ramp, vinden artsen en patiëntenorganisaties.
trouw.nl
Minister Sophie Hermans stelt dat ze gezien de begroting geen geld heeft. In mijn optiek is dat een kwestie van prioriteiten. Als PAIZ een prioriteit was, dan was er zeker meer mogelijk geweest dan wat er nu gebeurt. archive.today/Me6cJ #protestwake #PAIZ #PAIS #myalgicE #millionsmissing
"Er is volwaardige zorg nodig. De zorgvraag is groot en complex. ‘Het veld’ kan dit niet zelfstandig oplossen zonder regie vanuit de overheid, en patiënten hebben het helemaal gehad met hun eigen onzichtbaarheid. Perspectief ontbreekt." #PAIS #PAIZ www.volkskrant.nl/columns-opin...
Opinie: Een jaar na het eerste PAIS-protest in Den Haag is het nog steeds donker
Er is volwaardige zorg nodig voor patiënten met een postacute infectieuze ziekte (PAIS). Het zorgveld kan dit niet zelfstandig oplossen zonder regie vanuit de overheid, en patiënten hebben het helemaa...
volkskrant.nl
Beth Dobbin on being bedbound, Anil van der Zee on suicide, and patient vs doctor knowledge... virology.ws/2026/10/19/t...
Trial By Error: Some Things I've Read Recently...BBC on Olympic Sprinter with Long COVID; Anil van der Zee on Suicide; Physician vs. Patient Knowledge | Virology Blog
By David Tuller, DrPH Olympic Sprinter Bedbound for 22 Hours a Day The BBC has profiled Beth Dobbin, a top-level sprinter who is, per the story’s headline, ...
virology.ws
Wie komt er 25 oktober naar de #PAIS-wake om de politiek op te roepen eindelijk een einde te maken aan de decennialange verwaarlozing en mishandeling van mensen met een #PAIZ? Jullie hulp is gezien de schrijnende situatie waar mensen in leven dringend nodig. See you there?!
A blog about the multiple reasons why I keep fighting. Why I thus far stay alive. "The fight against the injustice done to the patient community is a big driver. I just can't and won't shut up about it!!!” anilvanderzee.com/staying-aliv... #pwme #myalgicE #millionsmissing #severeME #MECFS
Staying Alive Is My Protest - Anil van der Zee
With the sadly increasing number of people with ME passing away, not uncommonly dying due to suicide or euthanasia, sometimes weekly, I often get asked why I keep holding on with severe ME, or if I ev...
anilvanderzee.com
My thoughts about the film Complicated, with children who have EDS/hEDS, where they and their families are not being take seriously. With child protective services as a result. Medicine needs to do better! www.facebook.com/share/p/1XDf... #EDS #hEDS #pwme #myalgicE #millionsmissing
"Twenty years after the start of the largest Q fever epidemic in history, Health Minister Hermans offers apologies on behalf of the cabinet. Tens of thousands of people in North Brabant were infected by nearby goat farms." youtube.com/shorts/90Xro... #QVS #QFS #PWME #MECFS #PAIS
Dutch Government Finally Apologizes to Q Fever Community
YouTube video by Anil about ME
youtube.com
Sometimes it can feel like things are standing still. Especially for severe ME patients who can't easily participate in research. But in the Netherlands, they are being included. archive.today/8DqOm #pwME #longcovid #QVS #lyme #PAIS #severeME
Indrukwekkend stuk met Caroline Van Kessel door ellen de visser. Sorry zou al een beginnetje zijn Sophie Hermans. #QVS #LongCovid #lyme #postsepsis #pwme #myalgicE #millionsmissing #PAIZ #PAIS #IACI #IACC www.volkskrant.nl/wetenschap/l...
‘Laat de minister sorry zeggen voor het wegkijken na de Q-koortsepidemie’
De grote Q-koortsepidemie van zo’n twintig jaar geleden ruïneert nog altijd het leven van velen, weet Caroline van Kessel. Als voorzitter van de patiëntenorganisatie hoort ze de schrijnendste verhalen...
volkskrant.nl
"Ineens begreep ik waarom het maar niet wil vlotten met de zorg voor mensen met ernstige psychiatrische aandoeningen en ME/CVS, fibromyalgie en PAIS. Hun ziekte is niet sexy genoeg." www.medischcontact.nl/opinie/blogs... www.medischcontact.nl/opinie/blogs...
Sorry, uw ziekte is niet sexy genoeg
Wie heeft volgens u meer recht op behandeling? Een patiënt met een hersentumor of iemand met levercirrose? Iemand die lijdt aan een depressie of een patiënt met leukemie? Iemand met fibromyalgie of me...
medischcontact.nl
Really proud to publish this piece by @octoberk.bsky.social on Long COVID in prisons. "All those who spoke to @thesicktimes.org lacked Long COVID–informed medical care, but more than that, they lacked access to basic information about the disease." thesicktimes.org/2026/09/29/i...
I interviewed five people with Long COVID in prison. They are invisible in the system. - The Sick Times
While there are no data sources on Long COVID in prison, experts suspect rates of the disease may be higher there than in the general population. They face high reinfection risks and poor access to me...
thesicktimes.org
Almost nine out of ten people with #LongCovid do not fully recover from their symptoms. They have to learn to live with them. This is shown in a study by researchers from Frisius MC and the UMCG in Groningen. For the study, 1,200 people were followed over the past three years. #PAIS #pwme
Great 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
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
theguardian.com
George Monbiot@georgemonbiot.bsky.social · last mo.Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
theguardian.com
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
A 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.com/the-rush-to-... #pwme #myalgicE #millionsmissing
The rush to dismiss severe ME or Long Covid in the media may harm you or your loved ones in the future. - Anil van der Zee
The last couple of weeks my social media has had a lot more traffic. Partly due to my own story in the media, but also because other people with (very) severe ME or infectious associated chronic illne...
anilvanderzee.com
"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
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...
vimeo.com
Teenagers and siblings Anna and Moritz have very severe ME. They lie in darkened rooms only meters apart, yet they have not seen each other for almost a year. Watch this short heart wrenching segment from a documentary about ME. youtu.be/NgBPfuMtA6s?... #pwme #severeME
Vanaf 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
Ties en Siem (5 en 10) lopen voor hun zieke moeder met ME. Steunen jullie deze helden en daarmee ook biomedisch onderzoek? supporta.com/optw/1gjwl4v... #pwme #myalgicE #severeME #MEcvs #PAIZ #PAIS #IACI #IACC #MillionsMissing
https://www.doneeramsterdamumc.nl/mecvs – Amsterdam UMC Foundation – Supporta
Wij lopen voor onderzoek naar ME/CVS ❤️ Hoi! Wij zijn Ties en Siem en wij doen mee aan de Dam tot Damloop om geld in te zamelen voor de Amsterdam UMC Foundation. Met onze actie willen we helpen om ...
supporta.com
My 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. #pwme #myalgicE #millionsmissing youtu.be/zFwaPS5c6RI?...
My illness is not part of my identity
YouTube video by Anil about ME
youtu.be
Mijn reactie op een uit de duim gezogen stressmodel voor "CVS" in Medisch Contact. www.linkedin.com/posts/anilva... #pwme #myalgicE #millionsmissing #severeME #MEcvs
CVS: de menselijke aap zit vast in een mediakooi! | Anil van der Zee
Zucht, weer een ongefundeerd stressmodel… Het rattenmodel dat Keppel Hesselink aanhaalt laat misschien zien dat langdurige, milde stress neuro inflammatoire veranderingen kan veroorzaken. Dat is inte...
linkedin.com
For 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 www.mdpi.com/2227-9032/9/...
“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee.bsky.social Discusses his Royal Honor” By David Tuller @davetuller1.bsky.social virology.ws/2026/09/06/t... #MEcfs #PwME #SevereME
