ME/CFS: Invisible illness fights for more attention and research!

ME/CFS: Invisible illness fights for more attention and research!

As of August 12, 2025, over half a million people in Germany are affected by ME/CFS, a disease that was classified as a neurological disorder by the World Health Organization in 1969. This includes around 80,000 children and young people who suffer from this serious, incurable multisystem disease. The ongoing vicious cycle of ignorance surrounding ME/CFS means that many sufferers do not receive appropriate support and treatment. Scientists and artists have a special responsibility to make the invisible visible, says Lilli Hallmann from the Bauhaus University Weimar.

As part of the Weimar Art Festival 2025, the film “UNREST” by Jennifer Brea will be shown, which impressively documents the challenges and suffering of people with ME/CFS. After the screening, there will be a panel discussion in which, among others, Jürgen Dusel, the Federal Government Commissioner for the Affairs of People with Disabilities, and Bruno Kolterer, a specialist in pediatric and adolescent medicine, will take part. The aim of the discussion is to address the invisibility of the disease and ways to de-discriminate those affected.

Event and engagement

The event, organized by Lilli Hallmann and Dr. Katrin Richter, was supported by the diversity fund of the Bauhaus University Weimar and the Thuringia State Center for Civic Education. Admission is free and online participation is also possible via the NichtGenesenKids website. In Weimar and around the world, buildings were also lit up blue as part of the “Light up The Night 4 ME” awareness campaign to draw attention to the problem.

Parallel to these events, a demonstration for the International “Severe ME Awareness Day” took place in Hanover on August 9, 2025. At the #LyingDemo, numerous participants lay on the floor to demonstrate for the seriously ill patients who cannot leave their beds. Mayor Monica Plate and members of the Lower Saxony state parliament gave greetings while sufferers and experts spoke about the pressing challenges in dealing with ME/CFS.

Urgent demands

The protesters called, among other things, for the promotion of biomedical and clinical research and the establishment of interdisciplinary competence centers to offer those affected better support. The need for low-threshold information for medical professionals and authorities was also pointed out. The lack of recognition of the illness by nursing care insurance companies makes it difficult for many relatives to adequately support the affected family members. Applications for social and insurance benefits are often rejected.

In Germany, the number of unreported cases of ME/CFS patients is high due to a lack of diagnostics. Until 2020, no funds were allocated to medical education, while small amounts have been made available to support these issues since 2020. Few professionals are familiar with ME/CFS and its associated conditions, which further complicates the situation. Facilities such as the immunodeficiency clinic at the Berlin Charité and the outpatient clinic for children's immunology at the Technical University of Munich are among the few contact points.

The current situation shows that there is an urgent need to raise awareness of ME/CFS and give those affected the visibility and support they urgently need. The activities in Weimar and Hanover are steps in the right direction, but there remains a lot to do.