Experiences of pacing with a heart rate monitor for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Background People living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) often use pacing with a heart-rate monitor (HRM) to manage their activity intensities to minimise time spent over their anaerobic threshold; however, there is little research related to their experiences of this approach.Objective To explore the experiences of people with ME/CFS of pacing with an HRM.Methods 488 people with ME/CFS completed an online international survey, and 27 agreed to online follow-up semi-structured interviews. The open answers from the survey and the data from the interviews were analysed using reflective thematic analysis.Results 87% of the survey participants and 88% of the interviewees were female. 49% of the survey participants and 44% of the interviewees were between 35 and 50 years. Their ME/CFS severity ranged from mild to severe. Some themes matched the questions: Benefits, Negatives, Support and Ideal Design, and some themes emerged from the data: Barriers, Body awareness/Intuition, Acceptance and Recommendations.Conclusions This study produced further insights into pacing with an HRM not previously published related to benefits, ideal design and support. New themes were also identified: Body awareness/Intuition, Barriers, Acceptance and Recommendations. The majority of people with ME/CFS in this study felt that pacing with an HRM is a useful management tool, but randomised controlled trials are needed to determine who benefits and identify guidelines to minimise the negatives and reduce the barriers for people with ME/CFS.