Kingdon Caroline, Giotas Dionysius, Nacul Luis, Lacerda Eliana
Department of Clinical Research, London School of Hygiene & Tropical Medicine, Faculty of Infectious and Tropical Diseases, London WC1E 7HT, UK.
Healthcare (Basel). 2020 Jul 4;8(3):197. doi: 10.3390/healthcare8030197.
Many people with severe Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) commonly receive no care from healthcare professionals, while some have become distanced from all statutory medical services. Paradoxically, it is often the most seriously ill and needy who are the most neglected by those responsible for their healthcare. Reasons for this include tensions around the complexity of making an accurate diagnosis in the absence of a biomarker, the bitter debate about the effectiveness of the few available treatments, and the very real stigma associated with the diagnosis. Illness severity often precludes attendance at healthcare facilities, and if an individual is well enough to be able to attend an appointment, the presentation will not be typical; by definition, patients who are severely affected are home-bound and often confined to bed. We argue that a holistic model, such as ''Compassion in Practice'', can help with planning appointments and caring for people severely affected by ME/CFS. We show how this can be used to frame meaningful interactions between the healthcare practitioners (HCPs) and the homebound patient.
许多重症肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）患者通常得不到医疗专业人员的护理，而有些人已与所有法定医疗服务脱节。矛盾的是，往往病情最严重、最需要帮助的人却被负责其医疗保健的人员忽视得最厉害。造成这种情况的原因包括：在缺乏生物标志物的情况下准确诊断病情的复杂性所带来的压力、关于少数可用治疗方法有效性的激烈争论，以及与该诊断相关的切实存在的污名。疾病的严重程度常常使患者无法前往医疗机构就诊，而且如果患者身体状况允许能够赴约就诊，其症状表现也不典型；从定义上来说，受严重影响的患者居家不出，常常卧床不起。我们认为，诸如“实践中的同情”这样的整体模式有助于安排预约，并为受ME/CFS严重影响的患者提供护理。我们展示了如何利用这种模式来构建医疗从业者（HCPs）与居家患者之间有意义的互动。
