"Patients who were NOT IMPROVED were more likely than those IMPROVED to have neuropathy, gastroparesis, and overactive bladder symptoms." #pwme #myalgicE #millionsmissing onlinelibrary.wiley.com/doi/10.1111/...

WHO Europe Director Dr. Hans Kluge said at this year’s Invest in ME conference: “ME is a severe multisystem physical disease!”. www.instagram.com/reel/DZKJrvs... #pwme #myalgicE #millionsmissing

Shoutout to some excellent German psychologists working on #LongCovid - check out the link for who they are

1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME. It is one of the only places where the sickest patients can receive specialised care. We need this everywhere!! #pwme #myalgicE #millionsmissing #severeME

Pity the author didn't review the negative studies in PAIS. Brain Retraining doesn't work. New preliminary data from the AIR trial is a good example. The effect is similar to natural recovery & fluctuations of the disease. Gupta scored even a bit worse than TAU. www.linkedin.com/posts/me-cfs... 🧠

🧵OF KEY CONCERNS We've now read Alan Levinovitz's WIRED piece on Long Covid. Our concern isn't that it discusses psychological theories. Our concern is that it repeatedly conflates criticism of evidence with creating a "climate of fear". Those are not the same thing. /1

1) This paper provides the a structured, transdisciplinary care guide for people with #severeME in home settings. The guide fills a major gap in professional knowledge and supports both family caregivers and health professionals in delivering safe, stabilizing care for people with severe ME.

Since April, Salzburg has been home to Austria's first nationwide outpatient clinic for #pwME. From the get go there are many patients who are looking for treatments. It shows how people are desperate for treatments. on.orf.at/video/143251... #LongCovid #millionsmissing

Last May, a team of researchers led by Braeden Charlton and including ME Research UK-funded researcher Associate Professor Rob Wüst published a pre-print paper, which made a case against deconditioning as a primary cause of ME/CFS symptoms. Read more: tinyurl.com/3zntm88j #mecfs #cfs #pwme

Wow. Unser Paper hat heute 776 Reads bei Researchgate.net. Vorgestern waren es noch 156. Was ist da passiert? 🤯

An interview with Professor Chris Ponting, a geneticist at the University of Edinburgh, about the recently announced follow-up to DecodeME called Sequence ME & Long Covid. virology.ws/2026/05/31/t...

1) Impressive paper from Iwasaki’s lab pointing at autoimmunity in a subgroup of Long Covid patients. They replicated previous experiments of antibody transfer causing symptoms in mice. A couple of findings that stand out…

Buried Alive with M.E from Anil Van Der Zee @anilvanderzee.bsky.social www.youtube.com/watch?v=XhrA... Screenshot from Science for ME weekly update #MEcfs #PwME

Podcast over ergotherapie voor mensen met PAIZ. #pwme #myalgicE #LongCovid #lyme #QVS #postsepsis #PAIZ #PAIS #IACI #IACC #MillionsMissing open.spotify.com/episode/7LOv...

"Pais & vree op de boerderij" Mooi om deze drive te zien voor 't opzetten van prikkelarme woningen voor mensen met ME/PAIZ. Hier zal nog flink over gediscussieerd moeten worden welke vorm dit zal & moet krijgen, maar dat dit in Medisch Contact besproken wordt vind ik zeker positief! #pwme #PAIS

Summertime - and the living is easy? #pwme #myalgicE #millionsmissing #severeME #isolation

How feasible is this form of CBT when patients report crashes due to the intervention? We don't know how many people actually had ME and PEM, but it doesn't sound that great or feasible to me.... #pwme #myalgicE #millionsmissing #cbt #PEM @davetuller1.bsky.social See next post below 👇👇

Important WOZ article about brain retraining, but the description of “pushing through” is more nuanced imo. www.woz.ch/2621/long-co... I wrote about it here: www.linkedin.com/posts/anilva... Anyways great to see! Well done! #pwme #LongCovid #mindbody #brainretraining #millionsmissing

Mijn hemel wat een stuk door psychiater Tom Molmans in de Volkskrant! Enorme bewondering! Geen blad voor de mond. Duidelijke taal! Respect!! #LongCovid #pwme #myalgicE #lyme #QVS #postsepsis #PAIZ #PAIS #IACI #IACC #MillionsMissing www.volkskrant.nl/columns-opin...

𝗟𝗲𝘃𝗲𝗻 𝗺𝗲𝘁 𝗠𝗘/𝗰𝘃𝘀 - 𝗵𝗲𝘁 𝘃𝗲𝗿𝗵𝗮𝗮𝗹 𝘃𝗮𝗻 𝗜𝘀𝗮𝗯𝗲𝗹 Isabel werd ziek tijdens een fantastische periode van vier jaar wonen, werken, sporten en genieten in haar vrije tijd in het buitenland. Ze was wel vaak ziek. Die periodes dat het slechter ging volgden elkaar steeds korter na elkaar op,

Rückschläge und neue Ansätze für die Therapieforschung: Eine Zusammenfassung wichtiger Inhalte der #MECFS Konferenz von Charité und MECFS Research Foundation 2026 @riffreporter.bsky.social www.riffreporter.de/de/wissen/me...

Indrukwekkende film over mannen met de ziekte ME. #ME-awarenessday

Thank you so much @anilvanderzee.bsky.social for these insightful interviews and to all who participated. Watch and learn about living with an illness that is as good as invisible to society and ignored by health care. We need recognition of ME and action now!

"Both ivabradine and propranolol reduce tachycardia and symptoms in POTS, supporting their use, but variability in response suggests that individualized treatment selection is warranted." Gezondheidsraad over #LongCovid. 👆 👆 www.sciencedirect.com/science/arti...

Gelukkig hebben we een journalist zoals @zurhake.bsky.social die goed op de hoogte is van de materie. Zo belangrijk dat de journalistiek niet kritiekloos meehuppelt met wat écht een veel sterker advies had moeten zijn. nos.nl/l/2614245 #LongCovid #pwme #PAIS #millionsmissing

Endlich online! Open Access. Pünktlich zum ME/CFS Awareness Day unser Text gegen die Psychologisierung von Long COVID und ME/CFS 💐 Danke an @privilegienschreck.bsky.social @ffhambu.bsky.social @postx.bsky.social @buechnerronja.bsky.social www.thieme-connect.com/products/ejo...

#MEAwarenessDay #MEAwarenessMonth #pwme #myalgicE #millionsmissing #MECFS #art2cureME

‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

For #MEAwarenessday I interviewed 8 men about their experience with ME. As far as I'm aware there's never been a film with just men talk about ME. Make sure to check out and please share!! #myalgicEman #pwme #millionsmissing #millionsmissing #severeME #MECFS youtube.com/watch?v=z_MC...

M.E. Kills Wow, this work is incredible!! I haven't been able to read everything yet, but it's already an emotional roller-coaster. Make sure to check out the beautiful, emotional & intimate art works!! www.aquietstorm.me/myalgic-ence... #pwme #myalgicE #millionsmissing #severeME #art2cureME

Wat een mooie film van @anilvanderzee.bsky.social en wat zal hem dat fysiek ongenadig veel gekost hebben. Veel mensen vinden het raar dat ik nog steeds ffp2-maskers draag en dit toont waarom: ME heeft me al zó beperkt en doe wat ik kan om te voorkomen dat ik volledig huis- of bedgebonden word. #pwme

I love that Anil has found a way to *dance* despite the horrific states his body is forcing him to endure. In awe of the resilience + creativity of our communities and this really feels like a sea change… TW; #severeME owning the language of “living death”. V powerful 🔥

Buried Alive with ME. A film by Anil van der Zee about the hell of living with #SevereME. A must-see. Part of M.E. Kills exhibit for A Quiet Storm, an online gallery featuring art of #pwME. ME Awareness Day - May 12, 2026 #MillionsMissing #MEkills #CureME #MEAwarenessMonth #NEISvoid

“You mourn yourself while still alive. And others move on as if you’ve already died.” Buried Alive with M.E. — a new film by Anil van der Zee (13 mins) Extraordinary work from someone who is so severely affected by #MECFS

🎾🦠 This winter Raducanu stated she was having lingering effects from a virus. We don't have many other details, but it is clear the media ignores the risk of infection associated chronic diseases and all we've learned from #LongCOVID/& the COVID-19 pandemic. thesicktimes.org/2026/04/28/p...

@tessamunt.bsky.social pls show this to the health minister! Tell her that her inaction means roughly 325k people with #SevereME in the UK continue to live like Anil describes here, in continuous suffering, with no end in sight. Why won't she take action? Why does she deny our basic human rights?

Le film “Buried alive with ME“ (”Enterré·e vivant·e avec l’EM”) a été mis en ligne aujourd’hui pour marquer le début du mois de sensibilisation à l’EM. Ce court métrage de 13 min a été réalisé par Anil van der Zee, un ancien danseur professionnel néerlandais atteint d'EM depuis près de 20 ans.

‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

Het artikel over de tentoonstelling "Ongebroken" die vandaag opent, en mijn digitale knutselwerkjes, ook nog even in de vorm zoals ie in de krant komt te staan. “Ongebroken” is tot en met 5 mei te zien in het Treehouse op het NDSM-terrein in Amsterdam. Zie ook www.ongebroken.nl

Wat een eer om voor de expositie “Ongebroken”, die morgen opent, een interview te mogen geven over mijn foto’s en films over mijn leven met ME. archive.is/5lNV6 “Ongebroken” is t/m 5 mei te zien in het Treehouse op het NDSM-terrein in Amsterdam: www.ongebroken.nl

A song and film made by the father of very severe ME patient Jonas. Some nice visuals. An original take. Yet also really heartbreaking to see. It's a cry for help!!! Watch it. Share it! #pwme #myalgicE #millionsmissing youtu.be/ZzpaYMSyAeo?...

Anil’s film will be part of our upcoming online exhibition, ‘Myalgic Encephalomyelitis Kills’, which will be launched on May 12th! Check out his trailer! Today is the last day to submit your artworks to us. www.aquietstorm.me/open-call-me...

TRAILER: Buried Alive with M.E. I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm. People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death. #pwme #millionsmissing #severeME 1/

Have you tried yoga for long‑COVID?”Yes. Science did (again? Why FFS!!). It did NOTHING. Yoga does not cure #longCOVID. But it does cure people telling me to try yoga. Namaste anyways. PS: they'll probably keep trying as this was feasibility study... www.sciencedirect.com/science/arti...

Persistent SARS-CoV-2 Spike is Associated with Localized Immune Dysregulation in Long COVID Gut Biopsies Watch out, a preprint with issues that will prevent publication in higher impact journals. www.biorxiv.org/cont... 1/10

A post for Long-Covid Awareness Day. www.facebook.com/100061511663... #LongCovidawaressday #LongCovid #PAIS #IACI #pwme #millionsmissing

Samuel’s (21) Death Should Not Be In Vain. An emotional interview with Samuel’s mother about the development of #severeME after #longCOVID and how he later told her that he had decided to "choose" assisted suicide, as well as the impact this had on her. youtu.be/OMe0PBRwD8I?...

Theo Kuiphof vertrekt niet alleen uit het bestuur van ME/CVS NL, maar legt nu ook zijn functie neer binnen het bestuur van de PAIS-alliantie. Zijn vertrek markeert opnieuw een belangrijke verschuiving binnen PAIZ organisaties. paisalliantie.nl/vertrek-theo...

A few things I've read recently: Maryland supports Long Covid research, @anilvanderzee.bsky.social on CBT in the Netherlands, and thoughts on hope and chronic illness: virology.ws/2026/02/11/t...

@davetuller1.bsky.social quoting @anilvanderzee.bsky.social The times, they are a-changin’? On some tentatively hopeful signs… #LongCovid #ME