I need your help. This cannot go on any longer!
On November 30, a protest will take place at the Malieveld in The Hague. This protest is for all people with a post-acute infectious syndromes (PAIS). Not just because we are ill, but especially because the way these diseases are treated makes the situation unbearable and needlessly worsens our suffering.
ME, described in the literature since at least the early 20th century, often after an infectious trigger, has been ignored, ridiculed, and psychologized for decades. Hardly any money has been invested in biomedical research, but plenty in harmful so-called “curative” behavioral interventions that have permanently made many people more severely ill. Including children.
The scientific, medical, journalistic, and political worlds have largely looked away for years. As a result, there are no effective treatments, and biomedical insights are still in their infancy. Out of desperation, we lose people almost weekly to neglect, suicide, or euthanasia. Not because they want to die or are depressed, but because of a lack of perspective and intense, hopeless suffering. This is entirely unnecessary if appropriate action had been taken. It is a massive scandal!!
You’d think that after all these years, we would have learned something?
Just look at Q fever: people with QFS have simply been abandoned. Dismissed. Forgotten. A scandal that continues to this day.
Chronic Lyme? Thousands of patients, but the system often acts as if it doesn’t exist. A scandal for which no one takes responsibility.
Post-sepsis syndrome? Only now is it starting to receive more attention. Too late for many. Scandal upon scandal.
And then Long Covid. In the Netherlands alone, about 450,000 people suffer from it. Just like with QFS, Lyme, and post-sepsis, a significant portion also develops ME. You’d think a pandemic of this scale would lead to real action. Journalistic attention is improving, but politically it remains mostly symbolic. Funding for biomedical research is still insufficient. Compared to the disease burden and the number of people suffering, this is a failure that can no longer be ignored.
I myself have been ill for 18 years since a CMV infection. I was once a professional ballet dancer, active and athletic. Now I’ve been housebound for 13 years, 10 of which I’ve been confined to bed and wheelchair. I live completely isolated in a darkened home, wearing earplugs and, when needed, a construction headset and sunglasses. Any minimal physical, cognitive, emotional, or sensory effort makes me sicker due to the hallmark of ME: post-exertional malaise. Because of sensory sensitivity, I hardly see anyone. This year, not a single friend has visited, because it’s hard to find the right moment.
And although I have a severe form of ME, there are people who are even sicker. People who need help 24 hours a day. Who can no longer turn themselves in bed. Who require tube feeding and often receive barely any medical support.
Even children are neglected like this for years. Parents are forced to take on the role of doctor or caregiver because doctors lack the education or look away out of sheer helplessness.
Even when there is sufficient support, knowledge and resources are lacking. Due to decades of disinterest, there is simply too little expertise and knowledge built up to treat people effectively.
Moreover, many people struggle to access social support or benefits, such as through the UWV (Dutch Employee Insurance Agency) or the WMO (Social Support Act). Help is denied or so complex that people with PAII often get completely stuck. This kind of injustice has to be fought in court, while they don’t have the energy for it and only get sicker from the process.
This is not just about the tragedy of these diseases, but about systemic failure. Unnecessary, inhumane failure.
It is a massive scandal!
That’s why there is a protest on November 30 at the Malieveld. Because many patients cannot be there themselves, including me, we ask everyone reading this: stand up for us! A PAIS can happen to anyone. Even people in your family or circle of friends. A disease without solutions, that completely halts your life, partly due to the inaction of the outside world.
We need your help to change that.
Will you come? Will you help? Can we count on you?
See you on November 30 at the Malieveld.
Because enough is enough. I’m counting on you!
Thank you!!!
