Rowe Katherine
Department of General Medicine, Royal Children's Hospital, Melbourne, Victoria, Australia.
Adolesc Health Med Ther. 2023 Jan 4;14:13-26. doi: 10.2147/AHMT.S317314. eCollection 2023.
This paper reviews the current understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and whether any treatment strategies have been effective. ME/CFS is a condition of as yet unknown etiology that commonly follows an infective process. It includes a new onset of fatigue (of more than 3-6 month duration and not relieved by rest), post-exertional malaise, cognitive difficulties and unrefreshing sleep, and frequently orthostatic intolerance, somatic symptoms and pain. Long COVID has renewed interest in the condition and stimulated research with findings suggestive of a multisystem neuroimmune disease. There are no definitively effective treatments. Despite earlier recommendations regarding graded exercise therapy and cognitive behavior therapy, the current recommendations are managing symptoms, with lifestyle management and supportive care. This paper provides an outline of strategies that young people and their families have reported as helpful in managing a chronic illness that impacts their life socially, physically, emotionally, cognitively and educationally. As the illness frequently occurs at a time of rapid developmental changes, reducing these impacts is reported to be as important as managing the physical symptoms. Young people face a mean duration of 5 years illness (range 1-16 years) with a likely residual 20% having significant restrictions after 10 years. Their feedback has suggested that symptom management, self-management strategies, advocacy and educational liaison have been the most helpful. They value professionals who will listen and take them seriously, and after excluding alternative diagnoses, they explain the diagnosis, are supportive and assist in monitoring their progress. Remaining engaged in education was the best predictor of later functioning. This allowed for social connections, as well as potential independence and fulfilling some aspirations. The need to consider the impact of this chronic illness on all aspects of adolescent development, as part of management, is highlighted.
本文回顾了目前对肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）的认识，以及是否有任何治疗策略有效。ME/CFS是一种病因尚不明确的疾病，通常继发于感染过程。它包括新发疲劳（持续超过3 - 6个月且休息不能缓解）、运动后不适、认知困难和睡眠不佳，还常伴有体位性不耐受、躯体症状和疼痛。长期新冠引发了对该疾病的新关注，并刺激了相关研究，研究结果提示这是一种多系统神经免疫疾病。目前尚无明确有效的治疗方法。尽管早期推荐了分级运动疗法和认知行为疗法，但目前的建议是通过生活方式管理和支持性护理来管理症状。本文概述了年轻人及其家庭报告的有助于管理这种对他们的社交、身体、情感、认知和教育生活产生影响的慢性病的策略。由于该疾病常发生在快速发育变化时期，据报道减少这些影响与管理身体症状同样重要。年轻人患病的平均时长为5年（范围为1 - 16年），10年后可能仍有20%的人有显著限制。他们的反馈表明，症状管理、自我管理策略、宣传和教育联络最有帮助。他们重视愿意倾听并认真对待他们的专业人员，在排除其他诊断后，这些专业人员会解释诊断结果、给予支持并协助监测他们的进展。继续接受教育是后期功能状况的最佳预测指标。这有助于建立社会联系，以及实现潜在的独立和达成一些愿望。强调了在管理过程中需要考虑这种慢性病对青少年发展各个方面的影响。
