In 2022, the ME Association helped Physios for ME promote the survey that has today reported on the experiences and attitudes towards pacing with a heart-rate monitor. We would like to thank everyone who took part.
One of the study's authors, Kathryn Dickinson, represented HRM4Pacing, a group that helped to design the survey. They have been working with Physios4ME and Dr Clague-Baker for several years and provide support to anyone who would like to try using a heart-rate monitor to help them manage ME/CFS. They have a particular focus on people with severe ME/CFS:
Research: Clague-Baker et al (2023) An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome.
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.
FEEDBACK REQUIRED
Do you use heart rate monitoring to help manage symptoms of ME/CFS in particular to aim to either prevent or reduce the impact of Post-Exertional Malaise? If so, please email us to let us know about your experiences via feedback@meassociation.org.uk using the Subject Line: Pacing & HRM