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Review

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

1
Albany Health Management Associates, Inc., Albany, NY 12203, USA
2
Department of Psychology, The College of Saint Rose, Albany, NY 12203, USA
*
Author to whom correspondence should be addressed.
Academic Editors: Kenneth J. Friedman, Lucinda Bateman and Kenny Leo De Meirleir
Healthcare 2021, 9(5), 553; https://doi.org/10.3390/healthcare9050553
Received: 31 March 2021 / Revised: 3 May 2021 / Accepted: 4 May 2021 / Published: 9 May 2021
(This article belongs to the Special Issue ME/CFS – 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 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. View Full-Text
Keywords: ME/CFS; Chronic Fatigue Syndrome; severely and very severely ill; trauma; grief; chronic illness; fatigue; suicide; stress; uncertainty ME/CFS; Chronic Fatigue Syndrome; severely and very severely ill; trauma; grief; chronic illness; fatigue; suicide; stress; uncertainty
MDPI and ACS Style

Fennell, P.A.; Dorr, N.; George, S.S. 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 2021, 9, 553. https://doi.org/10.3390/healthcare9050553

AMA Style

Fennell PA, Dorr N, George SS. 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. 2021; 9(5):553. https://doi.org/10.3390/healthcare9050553

Chicago/Turabian Style

Fennell, Patricia A., Nancy Dorr, and Shane S. George 2021. "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 9, no. 5: 553. https://doi.org/10.3390/healthcare9050553

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