Managing energy, and shaping care: insights from adults with myalgic encephalomyelitis/chronic fatigue syndrome through co-production workshops

Background
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, debilitating condition characterized by severe fatigue that is not relieved by rest and is often exacerbated by physical or mental activity. A key challenge for individuals with ME/CFS is energy management and to date, the only recommended strategy is “activity pacing.” This approach involves balancing activity and rest to avoid overexertion and minimize the risk of symptom exacerbation, commonly known as “post-exertional malaise”. A recent systematic review highlighted significant shortcomings in activity pacing interventions for ME/CFS, noting that they lacked rigor, were brief, and did not follow guidelines or integrate recommended technology, limiting their relevance for modern energy management. To address these gaps, the present study aimed to explore ME/CFS patients’ and health practitioners’ perspectives on approaches to energy management, how their understanding of energy management has evolved over time, and their recommendations for future interventions concerning energy management.

Methods
Eight individuals with ME/CFS participated in six 1-hour-long online co-production workshops with two researchers, with the option to provide input through written responses. Additionally, three health practitioners shared their perspectives via email. Thematic analysis of the data identified several key recommendations for improving ME/CFS care.

Results and Conclusions
Workshops highlighted the need for early support, healthcare provider training, and public education to combat stigma and misconceptions around ME/CFS. Participants emphasized patient collaboration, research-informed practices, rigorous research, multidisciplinary teams, and the integration of technologies like mHealth, along with a comprehensive approach including sleep, diet, and psychological support for better symptom management and activity pacing.