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Wat geschiedkundige context m.b.t. de UWV overwinning van donderdag. Kwestie die al 30 jaar speelt! 1997 in het AD "rechtspraak lijkt roulette voor ME-patiënten" #UWVreselijk #MyalgischeEncefalomyelitis #MECVS

1) Had a look at the REGAIN, a randomized trial of the supplement oxaloacetate for Long Covid. The primary outcome (Chalder Fatigue Scale) had a clear null result, suggesting oxaloacetate did not improve fatigue.

🟦 ME CVS 🟥 DE CENTRALE RAAD 🟨 LIVESTREAM TERUGKIJKEN 🔲 voor wie het gemist heeft of nog eens rustig opnieuw wil kijken (duurt 20 minuten) 🔲 dat kan hier, link 👉 media.rechtspraak.nl/MediaSite/Play…

1) Korean researchers developed a small eye-tracker that might be useful to assess fatigue. It uses CCPC (cylindrical carbonnanotube-paper-composite) sensors built into a wearable eyeglass frame to monitor eye movements and blinking.

An exceptional study from Stanford found that lymphocytes from ME/CFS & #LongCOVID patients show elevated oxidative stress, disrupted redox balance, and mitochondrial damage. These abnormalities lead to excess energy use by immune cells, which may contribute to severe fatigue

1) The research team of Wenzhong Xiao took a closer look at the muscle samples from ME/CFS participants in the intramural NIH study. They analyzed metabolic pathways and found downregulation of the alanine and aspartate as well as the arginine and proline metabolism pathways.

ME Wetenschap Centraal - video 23/28: Rob Wüst: Bloedsomloop & signaaloverdracht Op onze site de video (met de door ons geëditte ondertiteling) podcast versie en volledig uitgeschreven transcript voor als bewegend beeld en geluid teveel voor je is. 👇 mecentraal.wordpress.com/2025/07/21/me-…

This is so sad to hear that she passed away days after this post...

I had a dream about a special service for people with ME, involving sex workers who truly understand what ME entails. Of course, I was helped too. It was a beautiful dream—like a sign that something like this needs to exist! 😇😂🤘 #pwme #myalgicE #millionsmissing

ME Science Centraal, a collab project of NMCB consortium for biomedical research on ME and patient platform ME Centraal Videos featuring Patients' Questions to Scientists Video’s 20-23: Rob Wüst on his project MuscleME English subs available youtube.com/playlist?list=… #MECFS

1) 🇪🇸 New study from the Spanish research group of Elisa Oltra. Previous research suggested that Sars-Cov-2 could awaken ancient retroviral genes (HERV-W envelope protein) but this study found that HERV-W ENV is increased in ME/CFS and fibromyalgia patients as well.

Another coroner in England issues "report to prevent future deaths" in case of ME-related death. virology.ws/2025/07/21/tri…

🟦 LongCovid 🟥 bij kinderen 🔲 opmerkelijk artikel in AD vandaag 🔲 off-label medicatie: behandeldilemma zo mogelijk nog groter dan bij volwassenen? door Ellen van Gaalen met kinderarts Danilo Buonsenso Danilo.Buonsenso_Surf4Children

I wonder why everyone is more concerned about courageous doctors prescribing off label treatments for long covid than about how we as patients are gaslit and left to rot in our beds. 1/

archive.vn/MeYid Medicatie blijft uit voor kinderen met long covid: ‘Mijn lichaam doet zóveel pijn dat het niet uit te leggen is’ ad.nl/binnenland/med…

Really a well researched and insightful piece even dating back to 412 BCE. Well worth the read so that we don't make the same mistakes again... thinkglobalhealth.org/article/long-f…

1) 🇬🇧 In the UK, the delivery plan for ME/CFS has finally been published. Here's what it says about scientific research on ME/CFS...

Please sign ✍🏼 and share 🙏🏻 Savannah is in a UK hospital, she has very severe ME complicated by paralysing pain. She is suffering from neglect that has caused infections, and under threat of discharge to an FND service (dangerous for pwME). change.org/p/save-savanna…

1) The Bragée clinic in Sweden published an uncontrolled study to test if intravenous saline improves symptoms in ME/CFS patients with dysautonomia.

Words of Karen Hargrave @karenlhargrave.🦋.social are so true. Over the past 3 years I've met & photographed many #pwME trapped in bedrooms, desperate for appropriate care. Info on exhibition and book tinyurl.com/58khuv8z #MECFS #DocumentaryPhotography #InvisibleIllness #ChronicIllnessAwareness