Joannes and Stephanie van der Linden came to Frankfurt from Friedberg to represent their son. “I go for Maarten Maria, invisible due to ME/CFS” is written on pieces of paper that they hold up. Maarten’s sisters are also demonstrating, and even the dog Frida has a piece of paper tied to her.
The 22-year-old Maarten himself cannot be there this Saturday in downtown Frankfurt, and he is otherwise excluded from everything that makes up a young man’s life. He suffers from severe chronic fatigue syndrome ME/CFS and has been in bed in the dark around the clock for a year and a half.
The previously incurable disease can probably be triggered by an infection with the Epstein-Barr virus, Covid-19, but also by a conventional flu infection or the herpes virus. Although an estimated 20 million people worldwide and 500,000 in Germany suffer from ME/CFS, very little is known about it. Maarten’s parents demand that this must change. Research must be promoted and there must be more diagnostic centers. Political and social recognition is also important: symptoms such as extreme sensitivity to light and noise must be taken into account when determining the level of care.
“My Tanja wants her life back”
Those suffering from ME/CFS are often too weak to demonstrate for themselves. Nevertheless, some sick people, some sitting in wheelchairs or leaning on walkers, took part in the silent demonstration that led through downtown Frankfurt on Saturday. Above all, relatives and friends took part in the “mourning procession”, which was organized by the nationwide initiative #Liegenddemo. “My Tanja wants her life back” or “I am a human being, get me out of here” are written on the posters; some of them show photos of those affected who have to wear eye and hearing protection because the slightest stimulation completely exhausts them.
Everyone joins in: Some relatives have also given their four-legged friends notes that indicate the fate of those suffering from ME/CFS. : Image: Aaron Leithäuser
Among the participants is a young man carrying his little daughter on his shoulders. His 32-year-old wife has been bedridden since an infection and the family has moved in with her in-laws to ensure care and support.
A man in his mid-sixties from near Fulda says he has been suffering from ME/CFS for 50 years, but the disease was only diagnosed at the Berlin Charité in 2006. He had known all these years that something was wrong with him and had had periods of severe exhaustion, but these were dismissed by those around him. The demonstration would cost him a lot of energy and he would probably have to spend a week in bed recovering afterwards, but it was worth it to him.
Ulf von Rauchhaupt Published/Updated: , Recommendations: 85 Joachim Müller-Jung Published/Updated: , Recommendations: 30 Matthias Trautsch Published/Updated: Recommendations: 36
The participants lie on the ground in front of the Römer town hall – representing the sick people who are lying at home. The Frankfurt “funeral walk” is part of a nationwide series of demonstrations organized by the #Liegenddemo initiative, which is scheduled to end on May 11th with a rally in front of the Bundestag.