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Managing energy and shaping care – insights from adults with ME/CFS

A study (behind paywall) published in the American Journal of Medicine used co-production – a research method which involves including people who are not researchers in the design and conduct of research, to work alongside eight people with ME/CFS and three “health practitioners” to explore:


– Perspectives on approaches to energy management.
– How their understanding of energy management has evolved over time.
– Recommendations for future interventions concerning energy management.

Results highlighted “the need for early support, healthcare provider training, and public education to combat stigma and misconceptions around ME/CFS.”

Participants also emphasised the importance of “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.”


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