Anil van der Zee

especially with the light, is extremely hard for me, I missed quite a few words and said some funky things.

So it’s best to follow along with the subtitles. Brain fog is a real beast!

Thanks for watching, and please share.

Even if you don’t care!

Merci!!

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#severeME

YouTube video by Anil about ME Health(s)care *** Severe ME Day 2025

Health(s)care.

A short talk for the 8th of August #severemeday2025 about how healthcare can be a frightening place for those of us living with severe ME.

We urgently need things to change. We need support, and you can help.

Because speaking,

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#pwME
www.youtube.com/watch?v=qVDw...

Plenaire sessie op laatste dag #Internistendagen over #PAIS (post-acute infectiesyndromen) door Joost Wieringa met aandacht voor post-COVID, Q-koortsvermoeidhedssyndroom, post-sepsissyndroom en persisterende klachten na behandeling voor Lyme.

Photo of Anil and his cat. A man with medium skin tone and facial hair lies in darkened room as his cat looks on. Text: "Severe ME has almost made me forget about the dancer in me." Anil van der Zee Former professional ballet dancer.

"Severe ME has almost made me forget about the dancer in me." Anil van der Zee Former professional ballet dancer.

See more stories from people with Severe Myalgic Encephalomyelitis: www.meaction.net/2019/08/08/t...

#pwME #myalgicE

YouTube video by Patient-Led Research Collaborative Patient-Led Research Collaborative | Patient-Led Research Fund (PLRF) 2025 Webinar

Great talk by Braeden Charlton during the Patient-Led Research Fund (PLRF) 2025 Webinar about skeletal muscle abnormalities in Long-Covid and ME.

Honored that we patient representatives were mentioned as well. 🙏

It starts at 13:15

youtube.com/watch?v=eqV7...

What Doesn't Kill You...

Or?

Anways, my short story about ME.

www.instagram.com/reel/DMyZiVJ...

Unmasking the 'Zombie' Cells: The shocking link between ME/CFS and Long Covid New research from Stellenbosch University suggests a potential link between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID, highlighting the role of senescent cells in dise...

"Now, researchers from Stellenbosch University believe they may have found a common underlying factor linking #MECFS and #LongCovid: zombie-like cells hiding in our blood vessels."

iol.co.za/weekend-argu...

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights

BÖP rückt lang ignorierte Erkrankung ins Licht ME/CFS verdient mehr Bewusstsein im Gesundheitssystem

In Austria the Association of Psychologists issues a press release on #ME.

"Associate Professor Dr. a.o. Univ.-Prof. Dr. Beate Wimmer-Puchinger:

The foundation of any effective support is the recognition of #MECFS as a serious physical illness."

www.ots.at/presseaussen...

Frontiers in immunology - 14

BIOLOGIE VAN EEN VERWAARLOOSDE ZIEKTE - 14
Herhaling van de vertaalde delen door Millions Missing Holland.
Lees deel 14 op: me-cvsvereniging.nl/frontiers-of...

1) An impressive dataset on ME/CFS was just published by the research team of Ian Lipkin.

They tested multiple proteins and metabolites in 56 ME/CFS patients and 51 controls before and after exercise and cytokines in response to mimics of viral, bacterial, and yeast infection.

Gut bacteria could diagnose long Covid and chronic fatigue syndrome, researchers find It is estimated that 404,000 people in the UK have chronic fatigue syndrome or ME, according to Action for ME

"“Despite diverse data collection methods, common disease signatures emerged in fatty acids, immune markers, and metabolites,” Dr Oh said. “That tells us this is not random. This is real biological dysregulation."

#pwme #myalgicE #millionsmissing

www.independent.co.uk/news/health/....

Being a good researcher involves more than conducting biomed research, it also means truly listening to & seeing the patient community, so that your work is consequently relevant to the disease and helps accelerate progress. That, too, requires talent.

Well done!

amsterdamumc.org/en/research/...

Solve-Funded Post-Exertional Malaise and Long Covid Study Featured in Leading Journal - Solve ME/CFS Initiative Dr. Rob Wüst published a Solve-funded study in "Trends in Endocrinology & Metabolism" examining how Long Covid and ME/CFS affect muscles and physical functioning.

Big congrats to Ramsay Research Grant winner Dr. Rob Wüst and team for the publication of their Solve-funded study in
"Trends in Endocrinology & Metabolism" re: how diseases like #LongCovid & #MECFS affect muscle physiology.

Read our summary of the study here solvecfs.org?p=42318.

#PEM

De afgelopen weken heb ik samen met collega’s bij @nieuws.nos.nl stevige verhalen gemaakt waar we vragen stellen bij de veiligheid van behandelingen voor ME/CVS. Daarover is (onterecht) controverse ontstaan. Zie hieronder een handig overzicht van de verhalen, de kritiek van artsen en mijn ‘rebuttal’

YouTube video by David M Tuller Sander Zurhake

A must watch interview‼️‼️

Shows how deeply informed you must be to push back against a medical system still promoting outdated, harmful treatments for #kidswithME & the amount of intimation you can get.

Don’t miss it — TY @zurhake.bsky.social & @davetuller1.bsky.social

youtu.be/WFxTpuGuiI4?...

YouTube video by UMC Utrecht Informatievideo EnergiseME studie WKZ | UMC Utrecht

Teleurstellende omschrijving van ME.

Het kernsymptoom PEM wordt geen één keer genoemd!!!

Het is net als een item over reuma maken maar ontstoken gewrichten of pijn en stijfheid niet te noemen.

Wanneer krijgt het WKZ niet nou eens goed?

#kidswithME #LongCovidkids #pwme

youtu.be/i_x5s7q40yE?...

We celebrate our six year anniversary It is now six years since the formation of Physios for ME, when four physiotherapists with a shared goal – to improve physiotherapy care for people with ME – got together online, gave ourselves a name...

It's our six year anniversary!

To celebrate, the four of us spent a lovely weekend together, plotting and planning what our seventh year will look like.

You can read a whole recap of our year in our latest blog post here
www.physiosforme.com/post/we-cele...

On the right side of the image, Dr. Chris Armstrong is smiling and standing in front of a large scientific poster. On the left side, there's a curved light purple design element. At the bottom, bold navy text reads: “The Science Behind Hope,” with smaller text below: “An Update from Dr. Chris Armstrong.”

Dr. Chris Armstrong presents a detailed overview of a key area of investigation: how #pwME may rely more heavily on amino acids to produce energy, especially when the usual energy sources like fats and sugars aren’t being used efficiently.

🔗Watch now: ow.ly/EyCT50WhtVP

A journalist for a major Dutch broadcast network covered the potential harms of CBT/GET for kids with ME/CFS. Some of the Dutch wing of the CBT/GET ideological brigades pushed back. virology.ws/2025/06/25/t...

"Dokters als Patiënten" in de Huisartsvandaag.nl.

Mocht je onze film nog niet hebben bekeken dan kan dat hier:

youtu.be/J0ywwLIfH_w?...

#pwme #myalgicE #millionsmissing

Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’ The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.

A personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them. Please read ⬇️
theconversation.com/ignored-blam...

Voor als je geen LinkedIn hebt:

acrobat.adobe.com/id/urn:aaid:...

📢 OPEN BRIEF – Meer dan 100 ondertekenaars - artsen, psychologen en andere zorgprofessionals - zijn klaar voor verandering in de zorg voor kinderen en jongeren met ME/CVS. | Tanya Hautermans 📢 OPEN BRIEF – Meer dan 100 ondertekenaars - artsen, psychologen en andere zorgprofessionals - zijn klaar voor verandering in de zorg voor kinderen en jongeren met ME/CVS. Naar aanleiding van de NOS...

📢 OPEN BRIEF – Meer dan 100 ondertekenaars - artsen, psychologen en andere zorgprofessionals - zijn klaar voor verandering in de zorg voor kinderen en jongeren met ME.

Lezen, delen en op LinkedIn reageren zodat het aandacht krijgt. Dank jullie wel!

www.linkedin.com/posts/tanya-...

Hehe. Yes. I use whatever I can to raise awareness about ME and I still have some followers there. I check here from time to time but I tend to forget. Too many apps these days. 😉

Screenshot of Peter Hulsof from the short film. He is sitting in a grey chair with a large plant behind him.

#DoctorsAsPatients

“I think when you experience it yourself, only then do you realise how much impact it can have”

Peter Hulshof
Child & Adolescent Psychiatrist

www.youtube.com/watch?v=J0yw...

#Doctors #Psychiatrist

YouTube video by Anil about ME Doctors as Patients (with subtitles)

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In this film, 5 medical doctors open up about living with Post-acute infection syndromes (PAISs) / Infection-associated chronic conditions (IACCs) like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long COVID, & Chronic Lyme disease:

youtu.be/J0ywwLIfH_w

Thank you for sharing Elke! 🙏🙏

#LongCovid
#ME