heart rate monitor – American ME and CFS Society

Abstract:

Background: The high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated with Long COVID. However, there is first a need to evaluate the feasibility of undertaking randomised controlled trials of interventions for the condition. We aimed to co-produce a feasibility study of non-pharmacological interventions to support people with Long COVID.

Methods: A consensus workshop on research prioritisation was conducted with patients and other stakeholders. This was followed by the co-production of the feasibility trial with a group of patient partners, which included the design of the study, the selection of interventions, and the production of dissemination strategies.

Results: The consensus workshop was attended by 23 stakeholders, including six patients. The consensus from the workshop was to develop a clinical trial platform that focused on testing different pacing interventions and resources. For the co-production of the feasibility trial, patient partners selected three pacing resources to evaluate (video, mobile application, and book) and co-designed feasibility study processes, study materials and undertook usability testing of the digital trial platform.

Conclusion: In conclusion, this paper reports the principles and process used to co-produce a feasibility study of pacing interventions for Long COVID. Co-production was effective and influenced important aspects of the study.

Source: Turner GM, McMullan C, Aiyegbusi OL, Hughes SE, Walker A, Jeyes F, Adler Y, Chong A, Buckland L, Stanton D, Davies EH, Haroon S, Calvert M. Co-production of a feasibility trial of pacing interventions for Long COVID. Res Involv Engagem. 2023 Mar 30;9(1):18. doi: 10.1186/s40900-023-00429-2. PMID: 36997975; PMCID: PMC10061378. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10061378/ (Full text)

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.

Source: Clague-Baker N, Davenport TE, Madi M, Dickinson K, Leslie K, Bull M, Hilliard N. An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome. Work. 2023 Mar 13. doi: 10.3233/WOR-220512. Epub ahead of print. PMID: 36938766. https://content.iospress.com/articles/work/wor220512 (Full text)