On 30 November, the very first PAIS Protest will take place: the first ever national demonstration for recognition, better care and policy for people with Post Acute Infectious Syndromes, such as Long Covid, Q fever, Lyme disease, Post Sepsis and ME.
PAIS Protest
In the Netherlands, hundreds of thousands of people are disappearing. Not suddenly, in one fell swoop, but slowly: day by day, quietly fading from society. Young people, in the prime of life, with their whole future ahead of them. Even worse: children. They lie at home, sometimes alone in bed, lonely, in the dark.Welcome: this is the world of PAIS (Post Acute Infectious Syndromes). It can be acquired through pure bad luck, for example through Long Covid, Q fever, Lyme disease, Post Sepsis and ME. It can happen to any of us, including you, and it does happen every day. The number of patients is growing quietly but steadily. Society looks the other way, just as quietly.
This has to change now. That's why we're taking action! With #NietHersteld (Not Recovered), we are fighting for long-term policy and inclusion for all PAIS patients.
That means:
1. Recognition for PAIS patients
2. Structural investment in research into the various PAIS
3. Better care for PAIS
4. Long-term appropriate policy
On 30 November 2025, we are organising a demonstration on the Malieveld in The Hague to stand up for this group together.
There will also be an impressive installation of a large number of wheelchairs. This visualises all the people who cannot be there physically because they are too ill.At the same time, there will be an online protest so that everyone can participate. Because even when we organise online, we make an impact.
This protest is our fist against the disappearance
Malieveld, The Hague & Online
THE ONLINE PAIS PROTEST
The online protest is for anyone who cannot come to the Malieveld but still wants to join the protest. Even when we make our voices heard online, we can still make an impact! Will you join us?
Go to online protest info
Want to do more?
Can you help on site or can you help us make this protest big? All support is desperately needed!
From the sofa, from bed, and for those who can make it to the streets: with our action group, we are drawing attention to the hundreds of thousands of people in the Netherlands who are #NietHersteld (Not Recovered) because they have Post Acute Infectious Syndrome (PAIS).
We are a collective of PAIS patients who have united to fight for better conditions. We have been active since March 2023 and have done various things, such as: a photo campaign, email campaigns, writing input for the first Long Covid debate and the elections, talks with politicians, #NietHersteld (Not Recovered) - the Podcast and other content. We have also collaborated with other patient organisations on an election agreement and a petition to open outpatient clinics.
If the past five years, in which Long Covid has been on the rise, have shown us anything, it is how our society treats the chronically ill. Hundreds of thousands of people fell ill and were no longer able to participate: a mass disabling event. Instead of this prompting society to become more accommodating to sick people, the position of disabled people did not improve during that periodand is now under even more pressure. Our struggle is also a struggle for disability justice.Ultimately, it affects us all: anyone can become ill. Unfortunately, our lived experiences and decades of dealing with various PAIS mean that in our current society, this means that anyone can disappear. We may be #NotRecovered, but together we stand – or lie – stronger. Together we demand change. Together we take a stand against disappearing.
English
On 30 November, the very first PAIS Protest will take place: the first ever national demonstration for recognition, better care and policy for people with Post Acute Infectious Syndromes, such as Long Covid, Q fever, Lyme disease, Post Sepsis and ME.
PAIS Protest
In the Netherlands, hundreds of thousands of people are disappearing. Not suddenly, in one fell swoop, but slowly: day by day, quietly fading from society. Young people, in the prime of life, with their whole future ahead of them. Even worse: children. They lie at home, sometimes alone in bed, lonely, in the dark.Welcome: this is the world of PAIS (Post Acute Infectious Syndromes). It can be acquired through pure bad luck, for example through Long Covid, Q fever, Lyme disease, Post Sepsis and ME. It can happen to any of us, including you, and it does happen every day. The number of patients is growing quietly but steadily. Society looks the other way, just as quietly.
This has to change now. That's why we're taking action! With #NietHersteld (Not Recovered), we are fighting for long-term policy and inclusion for all PAIS patients.
That means:
1. Recognition for PAIS patients
2. Structural investment in research into the various PAIS
3. Better care for PAIS
4. Long-term appropriate policy
On 30 November 2025, we are organising a demonstration on the Malieveld in The Hague to stand up for this group together.
There will also be an impressive installation of a large number of wheelchairs. This visualises all the people who cannot be there physically because they are too ill.At the same time, there will be an online protest so that everyone can participate. Because even when we organise online, we make an impact.
This protest is our fist against the disappearance
Malieveld, The Hague & Online
THE ONLINE PAIS PROTEST
The online protest is for anyone who cannot come to the Malieveld but still wants to join the protest. Even when we make our voices heard online, we can still make an impact! Will you join us?
Go to online protest info
Want to do more?
Can you help on site or can you help us make this protest big? All support is desperately needed!
From the sofa, from bed, and for those who can make it to the streets: with our action group, we are drawing attention to the hundreds of thousands of people in the Netherlands who are #NietHersteld (Not Recovered) because they have Post Acute Infectious Syndrome (PAIS).
We are a collective of PAIS patients who have united to fight for better conditions. We have been active since March 2023 and have done various things, such as: a photo campaign, email campaigns, writing input for the first Long Covid debate and the elections, talks with politicians, #NietHersteld (Not Recovered) - the Podcast and other content. We have also collaborated with other patient organisations on an election agreement and a petition to open outpatient clinics.
If the past five years, in which Long Covid has been on the rise, have shown us anything, it is how our society treats the chronically ill. Hundreds of thousands of people fell ill and were no longer able to participate: a mass disabling event. Instead of this prompting society to become more accommodating to sick people, the position of disabled people did not improve during that periodand is now under even more pressure. Our struggle is also a struggle for disability justice.Ultimately, it affects us all: anyone can become ill. Unfortunately, our lived experiences and decades of dealing with various PAIS mean that in our current society, this means that anyone can disappear. We may be #NotRecovered, but together we stand – or lie – stronger. Together we demand change. Together we take a stand against disappearing.
https://www.hetpaisprotest.nl/