Physiotherapy Department, School of Health Sciences, Institute of Population Health, University of Liverpool, Liverpool, UK.
Physios for ME, UK.
Work. 2023;74(4):1225-1234. doi: 10.3233/WOR-220512.
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.
To identify the experiences and attitudes of people with ME towards HRM.
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.
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.
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.
肌痛性脑脊髓炎（ME）是一种复杂的多系统神经疾病。ME 的主要特征是活动后不适（PEM），其由身体、认知、情绪和社会活动引起，超过 30 种症状。PEM 的原因尚不清楚，但使用心肺运动测试的研究领域表明，反复测试会导致 VAT 降低，从而导致 PEM。通过心率监测（HRM）进行起搏可以提供反馈，以将活动强度维持在 VAT 以下。尽管有一些指南建议使用 HRM，但只有一项关于 HRM 使用的研究。
确定肌痛性脑脊髓炎患者对 HRM 的体验和态度。
设计了一个包含 40 个问题的在线调查，并在肌痛性脑脊髓炎网站、Twitter 和 Facebook 页面上发布。肌痛性脑脊髓炎患者阅读知情同意书并点击在线链接参与调查。调查持续了三周，所有答案均为匿名。
共有 488 名肌痛性脑脊髓炎患者完成了调查。大多数参与者为女性，年龄在 35-50 岁之间，报告的患病时间超过 5 年。使用了超过 100 种类型的 HR 监测器。确定了超过 30 个益处和超过 30 个弊端。HRM 降低了肌痛性脑脊髓炎的严重程度以及 PEM 的严重程度和持续时间。
尽管存在局限性，但 HRM 有许多好处，包括帮助肌痛性脑脊髓炎患者了解和管理 PEM，并支持他们增加活动量，包括工作。需要对医疗保健专业人员进行更多的研究和教育，以确保安全使用 HRM。
