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Perspective

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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Dr. Jack S. Remington Laboratory for Specialty Diagnostics, Palo Alto Medical Foundation, Palo Alto, CA 94301, USA
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Four Peaks Healthcare Associates, Flagstaff, AZ 86004, USA
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Independent Consultant, Riverside, IL 60546, USA
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Independent Consultant, Waterford, CT 06385, USA
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Independent Consultant, Burlingame, CA 94010, USA
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Author to whom correspondence should be addressed.
Academic Editors: Kenneth J. Friedman, Lucinda Bateman and Kenny Leo De Meirleir
Healthcare 2021, 9(10), 1331; https://doi.org/10.3390/healthcare9101331
Received: 30 August 2021 / Revised: 27 September 2021 / Accepted: 29 September 2021 / Published: 6 October 2021
(This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. The most severely ill patients may need total care. Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. Recently published clinical guidance provides updated information about ME/CFS but advice on caring for the severely ill is limited. This article is intended to fill that gap. Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management. We also provide suggestions to support the busy provider in caring for these patients by leveraging partnerships with the patient, their caregivers, and other providers and by using technology such as telemedicine. Combined with compassion, humility, and respect for the patient’s experience, such approaches can enable the primary care provider and other healthcare professionals to provide the care these patients require and deserve. View Full-Text
Keywords: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); chronic fatigue syndrome (CFS); myalgic encephalomyelitis (ME); severely affected (housebound) patients; very severely affected (bedbound) patients; chronic disease; primary care; home health care myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); chronic fatigue syndrome (CFS); myalgic encephalomyelitis (ME); severely affected (housebound) patients; very severely affected (bedbound) patients; chronic disease; primary care; home health care
MDPI and ACS Style

Montoya, J.G.; Dowell, T.G.; Mooney, A.E.; Dimmock, M.E.; Chu, L. Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare 2021, 9, 1331. https://doi.org/10.3390/healthcare9101331

AMA Style

Montoya JG, Dowell TG, Mooney AE, Dimmock ME, Chu L. Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare. 2021; 9(10):1331. https://doi.org/10.3390/healthcare9101331

Chicago/Turabian Style

Montoya, Jose G., Theresa G. Dowell, Amy E. Mooney, Mary E. Dimmock, and Lily Chu. 2021. "Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" Healthcare 9, no. 10: 1331. https://doi.org/10.3390/healthcare9101331

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