Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected

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 experien...

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Main Authors:	Patricia A. Fennell, Nancy Dorr, Shane S. George
Format:	Article
Language:	English
Published:	MDPI AG 2021-05-01
Series:	Healthcare
Subjects:	ME/CFS Chronic Fatigue Syndrome severely and very severely ill trauma grief chronic illness
Online Access:	https://www.mdpi.com/2227-9032/9/5/553

id	doaj-03574aed082340e5ad23d80c9857ad0d
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spelling	doaj-03574aed082340e5ad23d80c9857ad0d2021-05-31T23:30:43ZengMDPI AGHealthcare2227-90322021-05-01955355310.3390/healthcare9050553Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely AffectedPatricia A. Fennell0Nancy Dorr1Shane S. George2Albany Health Management Associates, Inc., Albany, NY 12203, USADepartment of Psychology, The College of Saint Rose, Albany, NY 12203, USADepartment of Psychology, The College of Saint Rose, Albany, NY 12203, USAPeople 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.https://www.mdpi.com/2227-9032/9/5/553ME/CFSChronic Fatigue Syndromeseverely and very severely illtraumagriefchronic illness
collection	DOAJ
language	English
format	Article
sources	DOAJ
author	Patricia A. Fennell Nancy Dorr Shane S. George
spellingShingle	Patricia A. Fennell Nancy Dorr Shane S. George Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected Healthcare ME/CFS Chronic Fatigue Syndrome severely and very severely ill trauma grief chronic illness
author_facet	Patricia A. Fennell Nancy Dorr Shane S. George
author_sort	Patricia A. Fennell
title	Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected
title_short	Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected
title_full	Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected
title_fullStr	Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected
title_full_unstemmed	Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected
title_sort	elements of suffering in myalgic encephalomyelitis/chronic fatigue syndrome: the experience of loss, grief, stigma, and trauma in the severely and very severely affected
publisher	MDPI AG
series	Healthcare
issn	2227-9032
publishDate	2021-05-01
description	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.
topic	ME/CFS Chronic Fatigue Syndrome severely and very severely ill trauma grief chronic illness
url	https://www.mdpi.com/2227-9032/9/5/553
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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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