Deep Read: Die Krankheit, die Millionen Menschen vom Leben ausschließt

Munich and Düsseldorf - Kathi, a 27-year-old woman from Cologne, contracted an infection in late summer 2022. She assumed it would pass soon, but her condition deteriorated dramatically over the following years. Eventually, she could only lie in a darkened room, unable to withstand light or noise. Kathi's only means of communication with her mother became physically writing letters to her hand.

The young woman was completely dependent on care. Kathi suffered from Myalgic Encephalomyelitis, commonly known as ME/CFS. This severe, chronic illness often follows infections like flu viruses, COVID-19, or Epstein-Barr virus. It can weaken the body so much that even minimal exertion drastically worsens the condition and traps sufferers in bed permanently.

Kathi ended her life through assisted suicide on March 3, 2026, at the age of 30. Her final words were "Fuck" before she activated the infusion that started her own death. In Germany, around 650,000 people are affected by ME/CFS, with more than half unable to work. The hidden figure suggests the number could be much higher, up to 1.5 million.

Doctors and experts note the disease frequently strikes young, athletic, ambitious individuals in the prime of their careers, often those who challenge themselves and spare little. Women are four times more likely to be affected than men. The consequences are not only medically catastrophic but also economically devastating. According to a model calculation by the ME/CFS Research Foundation and the data analysis company Risklayer, the disease causes societal costs of about 32.8 billion Euros annually in Germany, including income and productivity losses and medical care costs.

As the beginning of the cold and flu season approaches, the risk of new ME/CFS cases also increases. Despite affecting hundreds of thousands of people alone in Germany and causing billions in damages, the disease has been insufficiently researched for decades. With no approved causative therapy, things may be changing after decades of neglect from medicine and politics.