Coping with fatigue in children with mitochondrial myopathy

The PowerMe study started at Radboudumc to map fatigue and quality of life of children with mitochondrial myopathy. After brainstorming with healthcare providers and patients, the researchers developed a self-management program: PowerME. A program consisting of a website with various modules and assignments, supplemented with sessions with a therapist (both live and digital).

The researchers tested this program in 8 patients, aged between 8 and 18, with fatigue complaints. Each participant participated in the study for a total of 33 weeks with the aim of learning how to cope better with fatigue. Weekly questionnaires about fatigue resulted in a tailor-made self-management program that aligns with the personal goals of the participants.