Fennell Patricia A, Dorr Nancy, George Shane S
Albany Health Management Associates, Inc., Albany, NY 12203, USA.
Department of Psychology, The College of Saint Rose, Albany, NY 12203, USA.
Healthcare (Basel). 2021 May 9;9(5):553. doi: 10.3390/healthcare9050553.
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.
患有重症和极重症肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）的人遭受着巨大的痛苦。这种痛苦源于这些患者所经历的无数损失、这些损失带来的悲痛、作为一种鲜为人知且存在争议的慢性病患者常常遭遇的持续污名，以及他人和医疗保健界对这种疾病的反应可能导致的创伤。这篇综述文章通过慢性病的芬内尔四阶段模型来审视ME/CFS患者的痛苦。该阶段框架采用系统方法，阐述了痛苦对患者的影响，可用于帮助临床医生、患者、家属和护理人员理解并应对患者的经历。我们强调了严重程度、不确定性、模糊性和慢性病程这些概念及其在ME/CFS患者所忍受的痛苦中所起的作用。一个综合案例用于说明重症和极重症患者的生活。文章给出了针对治疗ME/CFS患者的医疗保健提供者的建议，并强调了提供者理解重症和极重症患者所经历的强烈痛苦的重要性。
