17 million people affected - and hardly anyone knows ME/CFS

Miguel Vieira is a man full of zest for life. When he opens the door to his home on a sunny day, there is little to suggest that he is ill. Only one thing stands out: The shutters in the living room are down – and that in broad daylight. Daylight is too harsh for him, it exhausts him, he will tell us later.

His dog follows Miguel Vieira wherever he goes and hardly lets him out of sight during the interview. "He saved me, " says Vieira, looking gratefully at his four-legged friend. Because even in the most difficult phases of his illness, he has overcome himself to go out with the dog. "It gave me a task, a daily goal."

Miguel Vieira was diagnosed with ME/CFS two years ago. This stands for the complicated name "Myalgic Encephalomyelitis / Chronic Fatigue Syndrome". He pushes us a post-it note with the long word written on it. "My wife wrote it down for me in case I forget during the interview, " he explains. One of the symptoms of the neuroimmunological disease is difficulty concentrating. He tells us that he rested for three days beforehand so that he could concentrate on the interview.

When you can no longer trust yourself

Many ME/CFS sufferers have severe pain, muscle cramps and cardiovascular problems, they feel flu-like and have trouble sleeping. "It's like having tendonitis all over my body, " says Vieira. "When I do something, the pain comes from one second to the next. Then I freeze and don't even know what I'm doing. Sometimes I can't find the words, or I twist them." He finds it difficult to trust himself because sometimes he simply falls asleep without realising it. "I just want to grab my mobile phone and suddenly wake up on the couch at four in the morning." He hardly dares to drive any more.