Uncovering Risk Factors, Disease Subgroups, and the Life-Long Health Impacts of Myalgic Encephalomyelitis

About one in two hundred people have myalgic encephalomyelitis (ME), sometimes referred to as chronic fatigue syndrome (CFS). ME is an understudied illness. How symptoms and treatments vary across the lifespan of people with ME is unknown. This disease is associated with very poor health-related quality of life. There is no cure or effective treatment of symptoms and no biomedical understanding of what causes ME. Our project is intended to shine a light on the lifelong experiences of thousands of people with ME in Scotland. We will use electronic health record data within DataLoch to understand factors that pre-dispose them to the illness and the impact the disease has on their life and long-term health. We hope to find different illness patterns to better understand how subgroups of ME patients experience the disease over their lifetime, and to look for markers from clinical tests that could identify people with ME.