Thornton Eleanor J, Hayes Lawrence D, Goodwin Dawn S, Sculthorpe Nicholas, Prior Yeliz, Sanal-Hayes Nilihan E M
School of Health and Society, University of Salford, Salford, UK.
Lancaster Medical School, Lancaster University, Lancaster, UK.
Am J Med. 2025 Jun;138(6):1001-1009. doi: 10.1016/j.amjmed.2025.02.008. Epub 2025 Feb 15.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, debilitating condition characterized by severe fatigue that is not relieved by rest and is often exacerbated by physical or mental activity. A key challenge for individuals with ME/CFS is energy management and to date, the only recommended strategy is "activity pacing." This approach involves balancing activity and rest to avoid overexertion and minimize the risk of symptom exacerbation, commonly known as "post-exertional malaise". A recent systematic review highlighted significant shortcomings in activity pacing interventions for ME/CFS, noting that they lacked rigor, were brief, and did not follow guidelines or integrate recommended technology, limiting their relevance for modern energy management. To address these gaps, the present study aimed to explore ME/CFS patients' and health practitioners' perspectives on approaches to energy management, how their understanding of energy management has evolved over time, and their recommendations for future interventions concerning energy management.
Eight individuals with ME/CFS participated in six 1-hour-long online co-production workshops with two researchers, with the option to provide input through written responses. Additionally, three health practitioners shared their perspectives via email. Thematic analysis of the data identified several key recommendations for improving ME/CFS care.
Workshops highlighted the need for early support, healthcare provider training, and public education to combat stigma and misconceptions around ME/CFS. Participants emphasized patient collaboration, research-informed practices, rigorous research, multidisciplinary teams, and the integration of technologies like mHealth, along with a comprehensive approach including sleep, diet, and psychological support for better symptom management and activity pacing.
肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）是一种复杂的、使人衰弱的病症，其特征是严重疲劳，休息无法缓解，且常因体力或脑力活动而加重。ME/CFS患者面临的一个关键挑战是能量管理，迄今为止，唯一推荐的策略是“活动节奏控制”。这种方法包括平衡活动和休息，以避免过度劳累，并将症状加重的风险降至最低，这种症状加重通常被称为“运动后不适”。最近的一项系统综述强调了ME/CFS活动节奏控制干预措施存在的重大缺陷，指出这些措施缺乏严谨性、持续时间短，且未遵循指南或整合推荐技术，限制了它们在现代能量管理中的相关性。为了填补这些空白，本研究旨在探讨ME/CFS患者和健康从业者对能量管理方法的看法、他们对能量管理的理解如何随时间演变，以及他们对未来能量管理干预措施的建议。
八名ME/CFS患者与两名研究人员参加了六次为时1小时的在线合作生产研讨会，并可选择通过书面回复提供意见。此外，三名健康从业者通过电子邮件分享了他们的观点。对数据进行主题分析，确定了几项改善ME/CFS护理的关键建议。
研讨会强调了早期支持、医疗服务提供者培训和公众教育的必要性，以消除对ME/CFS的污名化和误解。参与者强调了患者合作、基于研究的实践、严谨的研究、多学科团队以及移动健康等技术的整合，同时还强调了包括睡眠、饮食和心理支持在内的综合方法，以更好地管理症状和控制活动节奏。
