News from The Netherlands

Protocol more important than the life of the patient. Dehumanizing health"care".
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?
 
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!!!
 

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
 
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)
 

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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
 
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