“Brush teeth — rest, go to the bathroom — rest, eat — lie down again. And when meeting friends, set a timer for 20 minutes because there simply isn’t the strength for more.”
This is the daily reality for Larisa (name changed), a young woman living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition once thought to be rare but now increasingly common, according to the German ME/CFS Society.
ME/CFS causes intense exhaustion that does not improve with rest. Those affected often suffer from sleep disturbances, cognitive difficulties, and circulatory problems. The World Health Organization classified ME/CFS as a neurological disease as early as 1969. It can occur at any age but is most frequently diagnosed in people between 30 and 40 years old.
Before the COVID-19 pandemic, around 17 million people worldwide were estimated to have ME/CFS, with approximately 250,000 cases in Germany. However, post-pandemic figures have doubled, reaching about 620,000 affected individuals in Germany by 2023. Experts note that women are three times more likely to suffer from the syndrome than men.
For Larisa, “life means making plans, making decisions, feeling, worrying, and interacting with the world around her. But all her body can do is lie quietly, think about nothing, and feel nothing.” She adds, “Honestly, everything I do is a battle. And I am constantly losing these battles.”
Currently, there is no cure for ME/CFS that targets the root causes. Treatment focuses on managing symptoms such as pain, sleep problems, circulatory issues, and anxiety.
