Anil van der Zee

Happy animal day to my best buddy in the world Mr Grigor, who shines his light even on the darkest days, and is the best assistant ever!

#pwme #myalgicE #millionsmissing

‘Ik dacht: jemig, ik heb heel veel patiënten die dit hebben’ Multisysteemziekte: Voor zowel huisarts als patiënt gaat de vaak ongrijpbare ziekte ME vaak gepaard met een moeizame zoektocht. Huisarts Jojanneke Kant en haar patiënt Sophie Smeets vertellen over het...

Zeer indrukwekkend artikel met huisarts Jojanneke Kant en haar (ook) patiënt Sophie Smeets.

Het lezen waard!

#pwme #myalgicE #LongCovid #lyme #QVS #postsepsis #PAIZ #millionsmissing

www.nrc.nl/nieuws/2025/...

True, forgot about that. Will add it elsewhere. Thanks.

Specialised care for severely affected ME/CFS patients A specialised care unit for severely and very severely ill ME/CFS patients opened in 2021. The results from the first 3 years are reported.People with ME/CFS who were diagnosed according to the Can...

A special care unit for severe ME patients in Norway.

About 50% improved, but they tended to be younger.

Also some felt things could be better, but still we need these type of units in every country. Several.

www.tandfonline.com/doi/full/10....

Burden of Disease in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Scoping Review - Applied Health Economics and Health Policy Objective Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious chronic and complex multi-system disease characterised by symptoms such as post-exertional malaise, fatigue, cognitive impairment and pain. Diagnosis is based on international consensus criteria, and no curative treatment is available. In the USA, its prevalence is estimated at 0.42% among adults, with women affected three times as often as men. Prevalence is expected to increase due to the COVID-19 pandemic. In addition to its severe symptoms, ME/CFS has a substantial economic impact. This scoping review aimed to systematically examine the global health, social and economic burden of ME/CFS. Methods We conducted a systematic literature search following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) guidelines in six databases and supplemented it with a citation search. We assessed study quality using a modified version of the Mixed Methods Appraisal Tool. Results We included 20 studies that assessed costs (n = 16), disability-adjusted life years (DALYs) (n = 3), employment rates (n = 1), and school attendance (n = 1) as indicators of disease burden. Reported costs per patient ranged from USD 2,916 to USD 119,611, with indirect costs accounting for the largest proportion. DALYs reported for the USA ranged from 0.714 million in 2016 to 5.77 million in 2022. Conclusion ME/CFS imposes a substantial health, social and economic burden of disease. Discrepancies in estimates are probably due to differences in study samples, methodologies, cost components, and healthcare systems. Because ME/CFS is assumed to be underdiagnosed, its true burden may be even higher.

"Reported costs per patient ranged from USD 2,916 to USD 119,611, with indirect costs accounting for the largest proportion. DALYs reported for the USA ranged from 0.714 million in 2016 to 5.77 million in 2022.

#pwme #myalgicE #millionsmissing

link.springer.com/article/10.1...

YouTube video by Fatigatio e. V. Anouk Slaghekke - Vortrag auf der ME/CFS-Fachtagung 2025 des Fatigatio e.V. (OmU)

Really love this work by Anouk Slaghekke. It fits 100% with how I from day 1 experienced exertion. No oxygen in my skin, muscles, head and elsewhere. Well done!!!!

#pwme #myalgicE #LongCovid #millionsmissing #PEM #CPET

youtu.be/wAXq4yplOcs?...

Dank aan huisarts Jojanneke Kant dat ze ons, mensen met een PAIZ, zichtbaar probeert te maken.

Je bent een heldin. Je geeft ons hoop.

Wie volgt haar voorbeeld?

#ikbennietonzichtbaar

#pwme #myalgicE #millionsmissing

www.instagram.com/p/DO0qZpWjAf...

‘Vermoeidheid dekt de lading niet, PAIS-patiënten zijn uitgeput’ - DOQ Jojanneke Kant leerde via haar patiënten hoe ingrijpend PAIS is en hoe groot het kennisgebrek onder zorgverleners hierover nog altijd is.

Heel goed stuk!! Even lezen en delen!

“Hoe eenzaam voel je je als patiënt als jouw dokter, de persoon waarop je je hoop hebt gevestigd, niet weet wat jouw aandoening inhoudt?”

Jojanneke Kant - huisarts.

#pwme #myalgicE #millionsmissing

www.doq.nl/vermoeidheid...

Veel sterkte vandaag. Céline wordt gemist. Wat haar en veel medepatiënten is aangedaan is kindermishandeling. De NVK vindt dit klaarblijkelijk nog steeds ok. Schandalig!!

Psychologisering van de ziekte ME leidde tot overlijden van Céline en een groot aantal lotgenoten. (bericht bewerkt op 18 september 2025)                                                       Onze dochter Céline is op 18 september 2023 op 32 jarige leeftijd overleden door euthanasie. Zij …

Psychologisering van de ziekte ME leidde tot het overlijden van onze dochter en zus Céline.
Helaas wordt de ziekte nog steeds gepsychologiseerd terwijl er zeer veel wetenschappelijke bewijs is dat het een lichamelijke ziekte betreft.

corsius.wordpress.com/2024/08/03/p...

On Thursday there will be a preliminary injunction against the hospital. Pls help by reading & sharing this 🙏 #SaveSanne

@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social

Super good news and glad to hear your part of the steering group. Thank you! 👍🙏

The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group

The process so far has been extremely progressive

I am hugely optimistic that a world-leading guideline will be produced

#pwME #MECFS

YouTube video by Kasper C. Jansen Nederland faalt op preventie én behandeling van chronische post-infectieziekte

Nieuwe video! Met veel dank aan het journalistieke werk van
@zurhake.bsky.social (NOS), @anilvanderzee.bsky.social en Anja de Loos.

Nederland faalt op preventie én behandeling van chronische post-infectieziekte. Amper druk op vaccineren, veel druk op gevaarlijke therapie.

youtu.be/zJtxUEeS_Ds

. @desnijtafel.bsky.social 👍

2) ook een stuk van "Doctors as Patients" wordt getoond.

Zeer de moeite waard om te bekijken. Well done!!!

#kidswithME #LongCovidkids #pwme #myalgicE #millionsmissing

YouTube video by Kasper C. Jansen Nederland faalt op preventie én behandeling van chronische post-infectieziekte

1) Zeer sterk pleidooi door Kasper C. Jansen over de dwang en drang van behandelingen met CGT/GET bij kinderen met ME/PAIZ.

Dit naar aanleiding van de berichtgeving van de NOS journalist @zurhake.bsky.social, de open brief aan de NVK en VGCt door zorgverleners, en

youtu.be/zJtxUEeS_Ds?...

YouTube video by David M Tuller Sander Zurhake

Goed nieuws!

De Nederlandse ondertiteling is toegevoegd aan 't interview van @davetuller1.bsky.social met NOS-journalist @zurhake.bsky.social over de dwang en drang van behandelingen met CGT/GET bij kinderen met ME/PAIZ. #kidswithME

Veel kijkplezier, en ook graag delen!!

youtu.be/WFxTpuGuiI4?...

News bits: Update on Keystone gathering from
@thesicktimes.org; Severe ME Day video from
@anilvanderzee.bsky.social; Medscape article from @miriametucker.bsky.social on fractured care for postinfectious illness. virology.ws/2025/08/21/t...

“Have you considered that it could be burnout?”—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome - BMC Medicine Background People reporting long COVID (LC) or post-COVID-19 vaccination syndrome (PCVS) not only suffer from their symptoms but also from stigmatization. Despite ample account and characterization of...

"People reporting LC or PCVS are subject to stigmatization and psychologization. From a patient perspective, psychologization appears to be an important driver of stigmatization and negative outcomes."

bmcmedicine.biomedcentral.com/articles/10....

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!!

2/

#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,

1/

#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...