A thousand patients, family members and caregivers gathered on the Malieveld in The Hague on Sunday afternoon. Sylvia van de Donk from Helmond was one of them. They drew attention to the long-term consequences of infectious diseases such as Q fever, long Covid, ME, mononucleosis and Lyme disease. “I have prepared for a long time to be present, but I have to recover from this for weeks,” says Sylvia, who has had ME since 2008.
According to the organization of the protest, there are approximately hundreds of thousands of people in our country who have not recovered after an infectious disease. They have a post-acute infectious syndrome (PAIS).
54-year-old Sylvia is one of them. She was diagnosed with ME in 2008. On Sunday morning she traveled to The Hague to make her voice heard. “I’m exhausted, but it was heart-warming to be able to be present at the protest,” she says at home in the evening.
“I won’t be able to talk tomorrow because I’m so exhausted”
In recent weeks she has had to arrange a lot to be there. “I probably won’t be able to talk tomorrow because I’ll be so exhausted. That’s why I have food and drinks ready for the next few days, so I don’t have to worry about this anymore.”
Yet it was a conscious choice to go to the protest. According to her, there are also people who are no longer able to be physically present. “That’s why I was extra motivated.”
For those who could not be there, there were empty wheelchairs with photos of the patients on the Malieveld. In addition, a minute’s silence was held for deceased patients.
What is ME?
Myalgic encephalomyelitis (ME) is a long-term illness in which people quickly become exhausted from doing things that are very normal for others. For example, by walking, reading, talking or thinking. Complaints often only become worse hours after exertion and can last for days or weeks. The disease makes the body less able to produce and use energy.
“My wife and I took care of our daughter for 22 years”
Lou Corsius from Etten-Leur also went to the protest with his son. “My daughter has been sick for 22 years.” She also suffered from ME. “I took care of her together with my wife. We have always done this with love.”
At the age of 63, he took early retirement to care for his daughter. She died in 2023. Now he makes his voice heard for those who can no longer do so. “Scientific research is needed and it would be very helpful if the number of patients were registered nationally. This way we can gain more insights and recognition,” he says.
Sylvia also advocates better care and good policy. “There are many more people with these diseases who need your support. From your neighbor to someone from the government. This really requires action in the short term.”
