Pacing is a self-management technique that involves balancing activity and rest to try to prevent or reduce post-exertional malaise (PEM), the cardinal symptom of ME/CFS. While some people with ME/CFS use heart rate monitors, such as those built into smartwatches, to help them pace their activity levels, little is known about the experiences and attitudes of those with ME/CFS towards pacing using a heart rate monitor.
Therefore, in 2021, a research team from the University of Liverpool, led by Dr Nicola Clague-Baker from Physios for ME, worked with the Facebook Group “ME/CFS pacing with a HR monitor #2” to develop and distribute an online survey exploring experiences and attitudes towards pacing using a heart rate monitor for people with ME/CFS.
There were 488 people with ME/CFS who completed this survey, and results suggested that pacing with a heart rate monitor could be “beneficial for people with ME, leading to a better understanding of the condition and more activity for some individuals.” The research team also noted that what stood out for them was the “call for physiotherapists to have more knowledge about using heart rate monitors to pace activity, so that they could support patients who were new to the technique.”
Although this survey gave a broad overview of the experiences of pacing using heart rate monitors for people with ME/CFS, the authors recognised the need to provide a more ‘in depth’ understanding. To do this, those who completed the survey were also invited to take part in an online interview.
In total, 27 people got in touch and agreed to take part in this phase of the study. Once interviews were completed, the research team examined the participants’ responses, and identified eight themes. These were:
1.Benefits of heart rate monitors for pacing
These included an awareness of your own body like the impact hormonal changes close to the menstrual period, understanding effects of treatments, and support for disability assessments.
2. Negatives
This theme was consistent with findings from the survey, with negatives like financial limitations, initial restrictions imposed by staying below the limit which has been identified as not triggering PEM, and battery life of device.
3. Support
This related to specific types of support needed, such as that required to set up the device, and online support, such as that available within the Facebook support group.
4. Ideal design and different uses
Here, factors that had been useful were identified as:
- Heart rate variability: “Measuring my heart rate variability was a game changer for me in monitoring and understanding my illness. It is one of the things that has helped me most”
- Number of steps: “So I’ve noticed if I can stay, I would say 3,000 to 4,000 steps are probably my maximum before I’d have any payback”
- Sleep quality and quantity: “The best thing is the sleep monitoring … I know how ready I am for the day”
- Time over limit, zones and resting heart rates: “Watching my daily RHR and hours of upright activity have been the most helpful things in managing my PEM.”
- Oxygen levels, temperature and blood pressure: “I’ve been monitoring BP to get correct medication … it is my BP that gets too high not my HR”
Additional features that would be beneficial were also identified:
- A device designed for illness not for healthy people.
- An immediate alarm, ideally a vibration, as a noise can be intrusive and alarming.
- Easily adjustable.
- Good battery life.
- Accurate, simple and a good visual screen.
- Additional information, including echocardiogram and other heart data, calories burned, blood sugar and sweat.
It is worth noting that one interviewee added a note of caution, “I don’t think I would add anymore because it just becomes too much.”
5. Barriers
Several barriers were identified, including family, work and life challenges, other conditions, devices not designed for ME/CFS, use with children, and severe ME/CFS and fluctuating conditions.
6. Body awareness/intuition
The use of pacing with an HRM allowed at least 15 of the interviewees to become more intuitive about their body and the limits to their activities, with one participant stating that “after using the heart rate monitor, my intuition was much better.”
7. Acceptance
Here the participants reflected on the importance of accepting their limits, and not dwelling on what they had lost.
8. Recommendations
Participants made recommendations for what would improve pacing, these included:
- “Much more support and training for healthcare staff in the use of HRM as a care management tool is required to enable effective support for all ME CFS patients”
- “Should be standard medical equipment, covered by insurance and dispensed by trained pros … upon receiving ME/CFS diagnosis”
- Recognition that although it is an “excellent tool” it “takes time to learn.”
This research had the following limitations, which were acknowledged by the researchers:
- The sample was not representative of all those with ME/CFS: Interviewees were all white, and survey respondents and interviewees were mainly from the UK and Europe.
- Potentially biased sample: Those who took part in the study were generally those who had experienced benefits of pacing using a heart rate monitor, the results may not be the same for those who had not had a positive experience.
- ME/CFS diagnosis was not confirmed: Although those who took part in the study all confirmed that they experienced PEM, it was not possible to confirm a diagnosis of the disease using internationally recognised diagnostic criteria.
Overall, findings from the study suggest that using heart rate monitors to support pacing may be beneficial to people with ME/CFS, but there are some limitations, including that standard devices are not developed for those with ME/CFS in mind. More research, specifically randomised controlled trials, is needed to assess the safety and efficacy of pacing using heart rate monitoring, and to identify what makes a device more suitable for people with ME/CFS.
