Anil van der Zee
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anilvanderzee.bsky.social
Anil van der Zee
@anilvanderzee.bsky.social
Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using BlueSky to raise awareness for #MyalgicE | #IACC I #PAIS

#art2cureME #pwme #millionsmissing
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1) OMG we did it‼️‼️

In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before.

They speak candidly about their experiences

youtu.be/J0ywwLIfH_w?...
Doctors as Patients (with subtitles)
YouTube video by Anil about ME
youtu.be
Het posturaal orthostatisch tachycardie­syndroom in de psychiatrische spreekkamer

www.tijdschriftvoorpsychiatrie.nl/nl/tijdschri...
Tijdschrift voor Psychiatrie
Uitgave van de Stichting Tijdschrift voor Psychiatrie waarin participeren de Nederlandse Vereniging voor Psychiatrie en de Vlaamse Vereniging voor Psychiatrie.
www.tijdschriftvoorpsychiatrie.nl
November 6, 2025 at 8:08 PM
Eindelijk een NTVG-artikel dat long covid biomedisch benadert en inzet op ondersteuning i.p.v. het oude CGT/GET-model. Er zitten nog wat haken en ogen aan, maar het is wel een stap in de goede richting. 👏

🔗 drive.google.com/file/d/1D1XU...

#LongCovid #pwme #PAIZ #millionsmissing
November 3, 2025 at 4:38 PM
Goed de aandacht voor de Long-Covid-expertisecentra, maar het artikel negeert decennialange ervaringen met ME/PAIZ: behandelmethoden zijn niet nieuw en PEM is al lang bekend. Nijhof mag mooi weer spelen. We mogen geschiedenis en patiëntenstem ME niet vergeten...

www.volkskrant.nl/wetenschap/s...
Speciale centra voor postcovid zijn een jaar open: ‘Stapsgewijs krijgen patiënten iets meer kwaliteit van leven’
De eerste Nederlandse expertisecentra voor postcovid openden een jaar geleden de deuren. Hebben de patiënten, die bijna allemaal extreem vermoeid zijn, er al wat aan? ‘We zorgen voor de patiënten en t...
www.volkskrant.nl
November 1, 2025 at 12:54 PM
"My preliminary work with students has identified a similar trend in #longCOVID exercise studies [...] The mixing of participants who may and may not respond normally to physical loading is probably also now confounding results in LC literature.”

www.medscape.com/viewarticle/...
No Evidence Supports Using Graded Exercise for ME/CFS
Studies examining the effects of activity-based interventions haven’t required post-exertional malaise as a core criterion for the now-termed ‘myalgic encephalomyelitis/chronic fatigue syndrome.’
www.medscape.com
October 31, 2025 at 2:48 PM
Not about ME, but a great take down of the popular book written by Bessel van der Kolk.

I hadn't heard of the work by Michael Scheeringa. So that will be my next stop.

josepheverettwil.substack.com/p/the-body-k...
The Body Keeps the Score is Bullshit
The popular book from the "world's most famous living psychiatrist" is riddled with blatant misrepresentations
josepheverettwil.substack.com
October 24, 2025 at 11:06 AM
New study finds sex-based differences in ME: women show faster heart rates & reduced blood flow when standing, while men have higher blood pressure & more oxidative stress, pointing to distinct cardiovascular patterns.

www.sciencedirect.com/science/arti...
Sex-related cardiometabolic differences in ME/CFS patients
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, debilitating, and multisystem disease that affects more females than males. …
www.sciencedirect.com
October 23, 2025 at 10:26 PM
A great documentary aired on Dutch national TV about self-employed Long Covid patients and their struggle to get insured, largely due to a lack of understanding and awareness about what #LongCovid actually entails.

Fragment below with English subtitles.

youtu.be/87wMwUFwEoQ?...
Long-Covid. Self-Employed. Sick. Uninsured.
YouTube video by Anil about ME
youtu.be
October 12, 2025 at 11:05 PM
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
October 4, 2025 at 11:26 AM
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/...
‘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...
www.nrc.nl
October 3, 2025 at 12:50 AM
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....
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...
www.tandfonline.com
October 2, 2025 at 1:00 PM
"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...
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.
link.springer.com
September 24, 2025 at 12:23 PM
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?...
Anouk Slaghekke - Vortrag auf der ME/CFS-Fachtagung 2025 des Fatigatio e.V. (OmU)
YouTube video by Fatigatio e. V.
youtu.be
September 23, 2025 at 8:20 PM
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...
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www.instagram.com
September 20, 2025 at 12:35 PM
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...
‘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.
www.doq.nl
September 19, 2025 at 12:47 PM
Reposted by Anil van der Zee
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...
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 …
corsius.wordpress.com
September 18, 2025 at 8:45 AM
Reposted by Anil van der Zee
September 16, 2025 at 7:32 PM
Reposted by Anil van der Zee
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
Myalgic Encephalomyelitis (ME) - HSE.ie
www.hse.ie
September 9, 2025 at 2:46 PM
Reposted by Anil van der Zee
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
Nederland faalt op preventie én behandeling van chronische post-infectieziekte
YouTube video by Kasper C. Jansen
youtu.be
August 30, 2025 at 5:22 PM
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?...
Nederland faalt op preventie én behandeling van chronische post-infectieziekte
YouTube video by Kasper C. Jansen
youtu.be
August 30, 2025 at 3:58 PM
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?...
Sander Zurhake
YouTube video by David M Tuller
youtu.be
August 26, 2025 at 11:42 AM
Reposted by Anil van der Zee
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...
Trial By Error: Keystone Gathering Update; Anil's Severe ME Day Video; Fractured Care for Post-Infectious Illness | Virology Blog
By David Tuller, DrPH Keystone gathering round-up from Sick Times Many prominent Long COVID researchers gathered in Santa Fe, New Mexico, last week to discu ...
virology.ws
August 21, 2025 at 5:39 PM
"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....
“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...
bmcmedicine.biomedcentral.com
August 20, 2025 at 11:15 AM
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...
Health(s)care *** Severe ME Day 2025
YouTube video by Anil about ME
www.youtube.com
August 7, 2025 at 9:06 PM
Reposted by Anil van der Zee
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.
April 18, 2025 at 8:04 AM
Reposted by Anil van der Zee
"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
August 5, 2025 at 7:39 PM