The question "what do I wear today??" The answer for several hundred students at the habfurt school center was quickly found yesterday: it definitely had to be something blue. The young people set a sign in the form of a blue ribbon and wanted to draw attention to a rare disease that has hardly been taken into account by research so far: CFS/ME, chronic fatigue syndrome, or myalgic encephalomyelitis. With the symbol and their signatures, the schoolchildren want to support a plea to the federal government that research be carried out in this field.
Schuler’s mother falls ill
"A mother of one of our schoolchildren is ill with CFS, and so the schoolchildren stumbled upon the initiative of mathias ilka", angelika reinhart from the "living room" explains the origin of the action. Class 9b of the secondary school took the initiative and contacted mathias ilka. His then 23-year-old son simon fell ill three years ago.
At first everything looked like a harmless cold, then the young man collapsed several times at work. Why, that remained puzzling at first. No examination revealed any findings, but simon’s condition deteriorated visibly. He was in pain, ended up in a wheelchair. At the institute for medical immunology at the charite in berlin, they finally got to the bottom of the disease. Simon is now a total nursing case.
Exhaustion in the affected
His illness is a systemic disease with disturbances of the nervous system, the immune system and the hormonal system. At the same time, it causes debilitating fatigue and exhaustion in those affected, especially during physical exertion. Doctors often diagnose depression, and sufferers are admitted to rehab or psychiatric centers. However, the activities there worsen the disease, because the patients need rest above all else.
Peter kirchner, the former mayor of kirchlauter, knows this, too. One of the daughters suffers from CFS, so it was an honor for him to participate in the ribbon cutting with grandson rafael-peter on his shoulders.
There are around 300,000 sufferers in germany – but no therapy, no chance of a cure, not even recognition as an organic disease. Which for the relatives also means a fight with health and care insurance companies.
Support from politicians
Matthias ilka has set himself the goal of collecting 50,000 signatures to campaign before the german parliament’s health committee for research into ME/CFS. He has already made contact with federal politicians. Since yesterday, he has been joined by mdb sabine dittmar, a physician who is familiar with the problems of rare diseases. Mdl steffen vogel, mayor gunther werner, members of the parents’ council of the various schools, school administrators, the managing director of the school center association horst hofmann, many teachers and many more schoolchildren met yesterday with the school gong on the sports field on durerweg to hand in their signatures.