Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected.
Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected.
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DOI：
10.3390/healthcare9050553
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发表时间：
2021-05-09
期刊：
影响因子：
--
通讯作者：
George SS
中科院分区：
文献类型：
--
作者：
Fennell PA;Dorr N;George SS
患有肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）的严重和非常严重的人经历了深刻的痛苦。这种痛苦来自这些患者经历的无数损失，来自这些损失的悲伤，作为一个缺乏了解的人经常经历的持续的耻辱，有争议的慢性疾病，以及其他人和医疗保健社区如何应对这种疾病可能导致的创伤。这篇综述文章探讨了ME/CFS患者的痛苦，通过透镜的Fennell四阶段模型的慢性疾病。使用系统的方法，这个阶段框架说明了痛苦对病人的影响，可以用来帮助临床医生，病人，家人和护理人员理解和应对病人的经验。我们强调的严重性，不确定性，模糊性和慢性的结构和它们的作用，在ME/CFS患者所忍受的痛苦。一个复合病例的例子是用来说明严重和非常严重的影响患者的生活。医疗保健提供者治疗ME/CFS患者的建议，并强调供应商的重要性，了解严重和非常严重的影响患者的经验，强烈的痛苦。
People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.
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