News from The Netherlands

Turtle said:
Protocol more important than the life of the patient. Dehumanizing health"care".
Click to expand...
If a protocol causes someone to die of negligence, that protocol needs to be smashed into the ground with extreme prejudice. No such thing as a good protocol that allows that.

Might as well go with the No country for old men quote for this, it's picture perfect:
If the rule you followed brought you to this, of what use was the rule?
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Patients with ME will not be mentioned in a protocol for years to come.
Though it is a lenghty proces, euthanisia is easier to get than treatment that can be lifesaving.
Bottomline: "We are not helping ME/CFS patients when they need our help; only when life become unbearable we will lend a helping hand.
Because we have no expertise whatsoever about ME/CFS we hide behind protocols".
Cowards!!!
 

#NietHersteld

www.hetpaisprotest.nl www.hetpaisprotest.nl

AI translation:
#NIETHERSTELD
the PAIS protest
30 November 2025
Malieveld, The Hague
& Online

the PAIS protest​

In the Netherlands, hundreds of thousands of people are disappearing. Not suddenly, all at once, but slowly — day by day — quietly fading out of society. Young people, in the middle of their lives, with their whole future ahead of them. Even worse: children. They lie at home, sometimes confined to bed, lonely, in the dark.

Welcome to the world of PAIS (Post-Acute Infection Syndromes). It can strike anyone through sheer bad luck — for example, after Long Covid, Q fever, Lyme disease, Post-Sepsis, or ME. It can happen to any of us — and it does, every single day. The number of patients is steadily, silently growing. Meanwhile, society looks away — just as quietly.
This must change. That’s why we’re taking action now!

With #NietHersteld (“#NotRecovered”), we are fighting for long-term policies and inclusion for everyone with PAIS. That means:

  1. Recognition for PAIS patients
  2. Structural investment in research into the different PAIS
  3. Better care for PAIS
  4. Long-term, appropriate policy
On 30 November 2025, we are organizing a demonstration at the Malieveld in The Hague, to stand together and raise our voices for this group. There will also be a powerful installation made up of many empty wheelchairs — representing all those too ill to attend in person.

At the same time, there will be an online protest, so that everyone can take part. Because when we organize online, we make an impact too.

This protest is our stand against disappearing ✊

Sunday 30 November 2025 — 14:00
the PAIS protest
Malieveld, The Hague & Online
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Im surprised how much more common long covid seems to be in people under 25! I knew there was a difference, but never would have expected it to be this big.

However, I am even more surprised to see the rates of long covid grow so much. March 2025, 2,4% of young people had long covid. In june this rose to 4.1%
In adults it stayed the same!
Is the same happening in other countries? I am confused what could cause this.

(Not sure if its worth its own thread)

Post-covid | RIVM

In juni 2025 steeg het percentage jongeren met langdurige klachten na een coronabesmetting van 2,4% naar 4,1%. Als deze langdurige klachten na coronabesmetting langer dan drie maanden duren, wordt dit ook wel post-covid of long-COVID genoemd. De resultaten op deze pagina horen bij het zestiende...
www.rivm.nl www.rivm.nl

Post-covid | RIVM

Van de volwassenen had 2,6% in juni 2025 al meer dan drie maanden klachten na een coronabesmetting. Dit is vergelijkbaar met de percentages in eerdere metingen. Nog eens 3% gaf aan dat ze eerder zulke klachten hadden, maar daar inmiddels van waren hersteld. Dit zijn de resultaten van het...
www.rivm.nl www.rivm.nl
 

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Nice to meet you there aline. It's not your i well me in the capacity to come but i hope it will work out. Where are you coming from

en i am One of the organisaties from this protest

Its beginning to look a lot like a demo but still to weeks to go so very exciting
 
www.groene.nl

Wat kunnen we wél aan ziektes als ME/CVS doen?

De ziekte van Tess van Brakel is niet alleen ongeneeslijk, maar ook onbegrepen. Terwijl buiten het leven doorgaat, ligt zij in bed, gegijzeld door haar ziekte. Haar huisarts kan ‘niets voor haar doen’ – en dat was het dan. Wat weten we precies over ME? En wat kunnen we wél doen?
www.groene.nl www.groene.nl

Google Translate link.

3300-word essay by author:
Tess van Brakel is working on a novel in which she explores how illness slowly reshapes a life. This essay is an intimate side project of that project, written from the daily reality of a body that is no longer self-evident.
Click to expand...

AI Summary:

The last bit of body​


Hunger and Isolation
The author describes ME as a consuming, chronic “hunger,” a relentless exhaustion that makes even basic bodily functions difficult. While life outside continues, she remains confined to bed, increasingly unseen and forgotten. ME is incurable and lacks a clear endpoint, creating a life defined not by dying, but by never truly living.

Nature and Severity of ME
ME (also called ME/CFS) is presented as a complex multisystem disease marked by neuro‑immunological and cognitive dysfunction. The NICE guidelines classify it from Mild to Very Severe; progression can occur and is often permanent. Only about 5% fully recover—mostly young people—while 55% worsen. The author, forty years old and declining, identifies herself with this last group.

Misunderstanding and Medical Neglect
Despite its prevalence—more common than MS, Parkinson’s or cystic fibrosis—ME remains severely underfunded and scarcely taught. Many doctors dismiss symptoms as psychosomatic, leading to misdiagnosis, harmful treatments, and, in extreme cases, life-threatening neglect. The author recounts being told repeatedly that nothing could be done and describes the deep loneliness of being denied both care and understanding.

Consequences and Mortality
Though not officially terminal, ME is linked to deaths from heart failure, cancer, and especially suicide, which occurs six to eight times more often than in the general population. Severe ME can make minimal stimuli life‑threatening, yet patients usually lack access to palliative care. Cases like Sophia Mirza and Sanne van Enckvort illustrate how systemic failures can lead to preventable deaths.

Post‑Covid Increase and Harmful Guidelines
After Covid‑19, ME cases rose sharply; half of long‑covid patients meet ME criteria. Nevertheless, outdated and damaging treatments—particularly exercise‑based therapies—remain common in Dutch practice, despite evidence of harm. An open letter from hundreds of clinicians urges revision of pediatric and behavioral guidelines.

A Call for Care
The author emphasizes that doctors can act: show curiosity, reduce sensory load, explore available treatments, collaborate with ME‑literate specialists, or simply call to ask what is needed. Forgotten by most, she reflects on disappearing from the world while still alive, whispering to herself that “you don’t have to die from this”—even as the disease feels like a presence beside her.
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www.volkskrant.nl

667 dagen in het donker: hoe postcovidpatiënten uit de maatschappij verdwenen

Ze leven achter gesloten gordijnen, aan bed gekluisterd. Voor de allerziekste postcovidpatiënten in Nederland is er nog steeds geen passende hulp of zicht op genezing. Vier van hen gunden ons een blik in hun leven, hoe hoog de prijs ook was die ze daarvoor moesten betalen.
www.volkskrant.nl www.volkskrant.nl
"667 days in the dark"


Someone has made a reddit post that has already gotten a lot of traction as well:
 
Some more articles


https://archive.ph/VY3D7 These Amsterdammers are #NietHersteld and demand to be seen by politicians: 'The disease feels like a prison'

Long-COVID youth sound the alarm: "Our lives are at a standstill"
https://npo.nl/start/serie/kassa/seizoen-21_1/kassa_754/afspelen 23 minutes in
Article of it;
https://www.bnnvara.nl/kassa/artikelen/long-covid-jongeren-luiden-noodklok-ons-leven-staat-stil

Laura and Karin have post-COVID, their lives are stand still: 'If I want to shower, I have to schedule a whole day for it'
eenvandaag.avrotros.nl

Laura en Karin hebben postcovid, hun leven staat stil: 'Als ik wil douchen moet ik daar een hele dag voor inplannen'

Naar schatting kampen zo'n 90.000 Nederlanders langdurig met postcovid-klachten. De klachten zijn zo ernstig dat hun hele leven vrijwel 'on hold'...
eenvandaag.avrotros.nl eenvandaag.avrotros.nl

https://www.ed.nl/eindhoven/anneke-...je-nog-als-je-niet-meer-kunt-werken~af1ed703/ Anneke had to give up her job due to long covid: "who are you, if you cannot work anymore?"

https://www.nd.nl/leven/gezondheid/...e-en-ligt-twintig-uur-per-dag-op-bed-ze-is-la https://www.nd.nl/leven/gezondheid/...ligt-twintig-uur-per-dag-op-bed-ze-is-laLinda
Linda (43) has ME, and is by far not the only one, says protest group.

www.linda.nl

Kim (37) heeft long covid en strijdt voor erkenning: 'We leven achter gesloten deuren dus worden niet gezien'

Kim van Noord kreeg in 2022 de diagnose long covid. Haar leven is sindsdien veranderd. "Al bijna vier jaar leef ik veelal uit het zicht."
www.linda.nl
Kim (37) has long covid and fights for recognition: "we live behind closed doors se we aren't seen"


https://www.flair.nl/mijn-leven/kim-sophie-chronisch-ziek-besties~f30c344
Kim and Sophie are chronically ill and became online besties: 'We had never met before we decided to get matching tattoos'

www.nrc.nl

Column | Het recht van de gezondste

Ellen Deckwitz vraagt aandacht voor mensen die langzaam uit het openbare leven verdwijnen als gevolg van langdurige klachten na een infectie, PAIS,
www.nrc.nl www.nrc.nl
The right of the healthiest

www.jan-magazine.nl

'Long Covid veranderde mijn leven en dat van honderdduizenden anderen – daarom is er dít protest'

Op 30 november wordt in Den Haag het PAIS-protest gehouden: dit moet je erover weten.
www.jan-magazine.nl www.jan-magazine.nl
Long covid changed my life and that of houndredthousand others - thats why there is this protest

https://nos.nl/artikel/2592582-geld-voor-longcovidonderzoek-raakt-op-wanhoop-bij-patienten-groeit




Jullian bushoff (politician) has also made a twitter post:
Give a voice to those who suffer in silence.

Join the PAIS protest this coming Sunday for people with, for example, long-COVID, Q fever, Lyme disease, and ME/CFS.

Let's give a voice to those who would otherwise go unheard.

#protest #notrecovered #longcovid
 
Last edited:
Apologies if there are any duplicates, I’m just copying from elsewhere.

Post-Covid/Lyme/Q-fever/ME-demonstration in The Hague, The Netherlands,
against research cuts by Dutch government.

Go to NOS News report [at 2:20 in Dutch],
https://npo.nl/start/serie/nos-journaal/afleveringen/seizoen-25_22/nos-journaal_102069/afspelen

More...

Another TV item [16:35 in Dutch]
https://npo.nl/start/serie/eenvandaag/afleveringen/seizoen-12/eenvandaag_6009/afspelen

Photos,
https://archive.ph/https://www.trou...nstreren-tegen-het-grote-verdwijnen~bbd8bf34/
 
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