Former professional ballet dancer | Bed- and wheelchair bound M.E. patient | Using ✖️ to raise awareness for #pwME | #IACI #art2cureME #pwme #millionsmissing
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1) OMG we did it‼️‼️
In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands
piped.video/J0ywwLIfH_w?si=FGIv…
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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
theguardian.com/commentisfre…
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Anil van der Zee © retweeted
Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.
New @wecrunchme visual on this topic 💙
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Anil van der Zee © retweeted
Prof Simon Carding on BBC Radio Norfolk yesterday discussing DISCOVER-ME, a €7.6 million international ME/CFS research project. His team in Norfolk, along with more than 20 institutions across Europe and Canada, are investigating the biological mechanisms of the disease.
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Anil van der Zee © retweeted
Zondag 25 oktober: PAIS protestwake in Den Haag
🕯️ Er zijn meer dan 700.000 mensen met PAIS in Nederland. Mensen die uit de maatschappij verdwenen zijn, maar die we nooit mogen vergeten. Daarom is er door twee patiënten en hun naasten een PAIS Protestwake georganiseerd op zondag 25 oktober voor de Tweede Kamer in Den Haag.
🍁 Dit is de laatste dag van het herfstreces, en de volgende dag is er een rondetafelgesprek met PAIS als thema.
🕒 De start is op zondag 25 oktober om 15.00 uur bij de ingang van de Tweede Kamer. Het is geen uitgebreid opgezet protest zoals het PAIS protest vorig jaar op het Malieveld. De organisatie is in handen van twee patiënten en hun naasten op persoonlijke titel. Long Covid Nederland steunt deze actie.
➡️ Wil je deelnemen? Meld je dan aan via nl.surveymonkey.com/r/R6BS7G…
❗️Kom alleen als je belastbaar genoeg bent, of vraag een mantelzorger of naaste om aan te sluiten. Er zijn waarschijnlijk geen stoelen of andere voorzieningen aanwezig.
🖥 Wil je op de hoogte blijven? Volg @paisprotestwake op instagram en Facebook.
#PaisProtestwake #LongCovid #PAIS #TweedeKamer
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Anil van der Zee © retweeted
📢 Our paper is published in Oxford Open Immunology:
The @ERASE_LC evaluated whether a 5-day course of intravenous remdesivir is feasible, safe, and acceptable for people living with Long COVID.
This is the first study to specifically examine remdesivir as a treatment for LC.
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Anil van der Zee © retweeted
Voortzetting Long Covid expertisecentra: motie in januari aangenomen, ondanks tegenstem van de regeringscoalitie.
Voortbestaan garanderen en voortzetting van activiteiten: studie, behandeling, diagnostiek.
Nu komt @ministerVWS met een haast symbolisch bedrag van 1 miljoen.
Dat is drastisch afschalen, meerdere locaties sluiten, veel minder patiënten. En het bijzonder schaarse personeel met enige klinische ervaring, direct weer wegjagen. Zo kun je absoluut niet de in de motie genoemde activiteiten voortzetten.
Als de Minister gaat claimen hiermee de motie te hebben uitgevoerd, spuugt ze op de Tweede Kamer. Dat kan de oppositie niet laten passeren.
Long Covid zorg:
-tot 2025 stond er 50 miljoen per jaar op de VWS begroting: paramedisch
-in 2025-2027 is het 9 miljoen per jaar: expertisecentra
-In dit kabinetsplan gaan we naar 1 miljoen per jaar
De ziektelast is niet door 50 gedeeld.
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The rush to dismiss severe ME or Long Covid in the media may harm you or your loved ones in the future. anilvanderzee.com/the-rush-t… via @AnilvanderZee
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Anil van der Zee © retweeted
Congratulations to @AnilvanderZee : awarded Knight in the Order of Orange-Nassau for his years of advocacy for people with ME and other PAIS. virology.ws/2026/09/02/trial…
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Anil van der Zee © retweeted
With ME/CFS, grief and hopelessness may be appropriate responses to severe illness and absent treatment.
Psychotherapy can support coping.
But presenting improved coping as improvement of the disease shifts medical failure onto patients and turns positivity toxic.
#MECFS
ALT Black-and-white stick-figure illustration: A severely ill person lies exhausted in bed. A psychotherapist sits casually in an armchair with crossed legs and holds a grotesquely grinning mask in front of the patient’s face. In the background, a medical professional leaves the room, taking an IV stand, medical equipment and a doctor’s bag. The image symbolises toxic positivity being offered as a substitute for somatic medical care.
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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/bestp…
#pwme #myalgicE #millionsmissing #severeME
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Anil van der Zee © retweeted
De haast om ernstige ME of Long Covid in de media weg te wuiven kan jou of je dierbaren in de toekomst schaden.
Scherpe blog @AnilvanderZee over de tragedie die #ME of #LongCovid is.
#pwME #millionsmissing
anilvanderzee.com/de-haast-o…
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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-t…
#pwme #myalgicE #millionsmissing
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themselves (anymore) because they were able to recover."
"ME and IACI are not rare diseases that cannot happen to you or your family members. They are very prevalent after often rather mild and common infections, and for many they cause lifelong illness."
"Every time you try
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to make it an issue of others, when you dismiss ME, you are also worsening the situation either for yourself or your loved one in the future."
You can read the blog on my website.
anilvanderzee.com/the-rush-t…
#pwme #myalgicE #millionsmissing #severeME
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"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 @miketweetchap for the video of this special moment.
vimeo.com/whei/anil-royal-ho…
#pwme #myalgicE #millionsmissing #severeME
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Anil van der Zee © retweeted
"It turned out the study was full of holes."
Highlights Dutch insurance physician Jim Faas discussing the problems with the £5M PACE trial for #MECFS on Dutch TV in 2017.
“I had to drop out as I got more and more ill.”
John Kieboom talking about how he became bedridden following the exercise therapy he was prescribed for #MECFS. Dutch TV report following the release of the PACE trial data in 2017. #MECFSScandal
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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.
piped.video/NgBPfuMtA6s?is=TgKO…
#pwme #severeME
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Today it is 3 years ago that my friend Céline Corsius passed away.
Read my post about her life and passing.
Our fight for justice, unfortunately not just for better health care, continues.
Also for those who are not with us anymore.
m.facebook.com/story.php?sto…
#pwme
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Vanaf vandaag is deze hand-out mét stappenplan ter ondersteuning van patiënten met post-acuut infectieuze ziektes gratis te downloaden via:
devragendokter.nl/webshop/pr…
#pwme #myalgicE #millionsmissing #severeME #LongCovid #lyme #QVS #postsepsis #PAIZ #PAIS #IACC
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