Experience and attitudes towards Pacing using a heart rate monitor: survey results
A survey by researchers who were led by the Physios for ME group, found over 30 benefits to the use of heart rate monitors (HRM) by people with ME (PwME). The monitors reduced the severity of ME, and severity and duration of PEM, but a lack of knowledge meant some people were misusing their devices.
“The concerning aspect of the use of the HRM was that some participants were using too high a level of estimated VAT or were attempting to use zones when working with the heart rate monitor. “
The main difficulties identified in using the monitors were lack of support, financial cost and too restrictive. “There is a clear need for people with ME and healthcare professionals advising them to know how to use these devices specifically for ME.”
Over 100 devices were used by participants with the most popular being the Apple watch, followed by Garmin, Fitbit and Polar devices. The results show that all the devices have the potential to improve the level of severity of ME, the severity of PEM and rate of recovery from PEM, independent of whether a chest strap is used, but there is a need for a more bespoke device that is easy to use with functions designed for people with ME.
The researchers say: “It is important to recognise that HRM is a management tool that needs to be used in conjunction with many other management strategies such as rest, prioritising, and planning. HRM is not a cure for ME, but it can be used as a management tool with the potential to help most PwME.”
An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome by Nicola Clague-Baker, Todd Davenport, Mohammed Madi, Kathryn Dickinson, Karen Leslie, Michelle Bull, Natalie Hilliard in Work, 2023, pp. 1-10, 13 March 2023 [DOI: 10.3233/WOR-220512]
Research abstract:
BACKGROUND:
Myalgic encephalomyelitis (ME) is a complex, multi-system neurological condition. The defining feature of ME is post-exertional malaise (PEM) with over 30 symptoms triggered by physical, cognitive, emotional and social activity. The cause of PEM is unclear but one area of research using cardio-pulmonary exercise tests show a reduced ventilatory anaerobic threshold (VAT) with repeated tests leading to PEM.
Pacing with heart rate monitoring (HRM) provides feedback to maintain activity intensity below the VAT. There is only one piece of research investigating the use of HRM although a number of guidelines recommend it.
OBJECTIVE:
To identify the experiences and attitudes of people with ME towards HRM.
METHODS:
A 40 question online survey was devised and released on ME websites, Twitter and Facebook pages. People with ME read the information sheet and followed an online link to the survey. The survey was open for three weeks and all answers were anonymous.
RESULTS:
488 people with ME completed the survey. Most participants were female, 35-50 years and with a reported illness of greater than 5 years. Over 100 types of HR monitor used. Over 30 benefits and over 30 negatives identified. HRM reduced severity of ME and severity and duration of PEM.
CONCLUSION:
Although there are limitations, HRM has many benefits including helping PwME to understand and manage their PEM and support them to increase their activities, including work. There is a need for more research and education of healthcare professionals in the safe use of HRM.
