Experiences of pacing with a heart rate monitor for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2026, Clague-Baker et al

[Nightsong]

Abstract:

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.

Link | PDF (Fatigue: Biomedicine, Health & Behavior, June 2026, open access)

 

[Trish]

I'm not convinced a trial is necessary or feasible. It's not a treatment whose efficacy cna be measured in any way I can think of, it's an aid to daily personal management in the same way noticing when you are starting to need to lie down, or when you need to take a pain med, according to symptoms are management strategies.

Realistically most people's lives are such that HRM is only a minor adjunct that reminds us to listen to our bodies and helps us give ourselves permission to take a break, I think.

So would a 'treatment group' wear a heart rate monitor and be instructed to stop and rest every time their heart rate monitor buzzes to tell them they have gone over their limit? And a control group be told to take notice of their symptoms and stop and rest when they feel they need to, without the aid of a heart rate monitor? The only outcome measure I can think of for such a study would be frequency, duration and severity of PEM episodes for each group. I doubt there would be much if any difference.

 

[Jonathan Edwards]

Yes, I think to produce anything genuinely useful we need a much better idea of what HRM is expected to tell us and quite complex trials comparing different interventions.

As a rule a randomised controlled trial does no ttell you who benefits. It only tells you whether there is likely to be a benefit across a population. That needs to be established first before one even asks 'who benefits'.