ME/CFS patients are fighting for visibility and for their lives: For many years, people with ME/CFS were let down by politics and the healthcare system. Now research is gaining momentum – too late for some, but others can still have hope.

Light, sounds, touch – Mia can barely bear them anymore. For years, ME/CFS has forced her into darkness and isolation. Her sister Johanna have up her plans for the future to support Mia. To keep their hope from fading, Mia and Johanna paint a star on the wall for every good moment.

“Don't put off your joy until it's too late”—that was Kathi's motto in life. Her friends Joana and Johanna describe her as a free spirit who loved life. Until her ME/CFS took that very life away from her: confined to bed 24/7 and trapped inside her own body. "She said goodbye by saying that she would so love to keep living, but she has to go because she simply can’t keep going anymore," her friends recall.

Just two stories out of an estimated 40 million people affected worldwide — 650,000 of them in Germany. These figures were published by the German Society for ME/CFS. Due to decades of underfunding, research is still in its infancy. But with the National Decade Against Post-Infectious Diseases, new funds are flowing into ME/CFS research. For Mia, this offers hope; for Kathi, it’s too late. What motivates those affected? What is the current state of research? What shortcomings must policymakers address? And are there prospects that offer cause for optimism?

Featuring:

Prof. Dr. med. Carmen Scheibenbogen, leading researcher for ME/CFS, Charité Berlin
MdB Prof. Dr. Karl Lauterbach, former Federal Minister of Health (2021-2025)
Johanna Müller, Protagonist TRU Doku, takes care of her sister Mia
Joana Welsing and Johanna Wolff, friends of Kathi, who chose assisted suicide because of a severe case of ME/CFS

Moderation: Eric Mayer, ZDF

Panel by 37° and TRU Doku