Understanding myalgic encephalomyelitis/chronic fatigue syndrome

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterized by unexplained persistent and disabling fatigue. There is ongoing debate within the medical community about the influence of psychosocial and physiological factors and the stigmatization that people living with ME/CFS can experience. Management of ME/CFS is often challenging and patients may be presented with a wide range of treatment options. The current study, a collaboration between researchers in the Departments of Family Medicine (Vanstone) and Anesthesia (Busse, Zeratkaar), explores how participants who experienced sustained symptom improvement understand and navigate their recovery process.  To date, the research team has completed 33 interviews with individuals who have experienced some degree of symptom improvement or recovery from ME/CFS. It has been heard from participants that they understand themselves to work independently to manage their symptoms and to identify new therapies to try to improve their condition. Through analysis, the research team has developed a theory of how people with ME/CFS learn about and select interventions to try, and then how they use their experiences to make decisions about ceasing, continuing, or adapting those therapeutic efforts. This project is nearing completion and will be presented at the Canadian Association for Health Services and Policy Research Conference in May 2023 and at the Society for Academic Primary Care Scientific Meeting in July 2023.