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…

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 💙

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.

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

📢 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.

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.

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

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…

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

Hasn't been released to the general public yet.

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

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…

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

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

"The overall theme here is that people try to push away the reality of the situation so it does not affect them. Protective distancing. It is a sense of control. It makes the illness and its horrors belong to others, something that does not concern them or will not happen to

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

"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

"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.

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

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