Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway.
Kielland, Anne, Liu, Jing, Jason, Leonard A·Journal of health psychology·2023
This study surveyed 660 people with ME/CFS in Norway to understand how different diagnostic criteria and symptoms affect their experiences with treatments and healthcare services. Most patients reported that available interventions had little benefit or made them feel worse. The researchers found that post-exertional malaise (a hallmark symptom where activity makes fatigue and other symptoms worse) was strongly linked to how patients tolerated different treatments, suggesting this symptom should be a key consideration when recommending interventions.