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A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

We propose a framework for the treatment, rehabilitation, and research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using a natural history of disease approach to outline the distinct disease stages, with an emphasis on cases following infection to provide insights into preventio...

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Autores principales: O'Boyle, Shennae, Nacul, Luis, Nacul, Flavio E., Mudie, Kathleen, Kingdon, Caroline C., Cliff, Jacqueline M., Clark, Taane G., Dockrell, Hazel M., Lacerda, Eliana M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8835111/
https://www.ncbi.nlm.nih.gov/pubmed/35155455
http://dx.doi.org/10.3389/fmed.2021.688159
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author O'Boyle, Shennae
Nacul, Luis
Nacul, Flavio E.
Mudie, Kathleen
Kingdon, Caroline C.
Cliff, Jacqueline M.
Clark, Taane G.
Dockrell, Hazel M.
Lacerda, Eliana M.
author_facet O'Boyle, Shennae
Nacul, Luis
Nacul, Flavio E.
Mudie, Kathleen
Kingdon, Caroline C.
Cliff, Jacqueline M.
Clark, Taane G.
Dockrell, Hazel M.
Lacerda, Eliana M.
author_sort O'Boyle, Shennae
collection PubMed
description We propose a framework for the treatment, rehabilitation, and research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using a natural history of disease approach to outline the distinct disease stages, with an emphasis on cases following infection to provide insights into prevention. Moving away from the method of subtyping patients based on the various phenotypic presentations and instead reframing along the lines of disease progression could help with defining the distinct stages of disease, each of which would benefit from large prospective cohort studies to accurately describe the pathological mechanisms taking place therein. With a better understanding of these mechanisms, management and research can be tailored specifically for each disease stage. Pre-disease and early disease stages call for management strategies that may decrease the risk of long-term morbidity, by focusing on avoidance of further insults, adequate rest to enable recovery, and pacing of activities. Later disease stages require a more holistic and tailored management approach, with treatment—as this becomes available—targeting the alleviation of symptoms and multi-systemic dysfunction. More stringent and standardised use of case definitions in research is critical to improve generalisability of results and to create the strong evidence-based policies for management that are currently lacking in ME/CFS.
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spelling pubmed-88351112022-02-12 A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome O'Boyle, Shennae Nacul, Luis Nacul, Flavio E. Mudie, Kathleen Kingdon, Caroline C. Cliff, Jacqueline M. Clark, Taane G. Dockrell, Hazel M. Lacerda, Eliana M. Front Med (Lausanne) Medicine We propose a framework for the treatment, rehabilitation, and research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using a natural history of disease approach to outline the distinct disease stages, with an emphasis on cases following infection to provide insights into prevention. Moving away from the method of subtyping patients based on the various phenotypic presentations and instead reframing along the lines of disease progression could help with defining the distinct stages of disease, each of which would benefit from large prospective cohort studies to accurately describe the pathological mechanisms taking place therein. With a better understanding of these mechanisms, management and research can be tailored specifically for each disease stage. Pre-disease and early disease stages call for management strategies that may decrease the risk of long-term morbidity, by focusing on avoidance of further insults, adequate rest to enable recovery, and pacing of activities. Later disease stages require a more holistic and tailored management approach, with treatment—as this becomes available—targeting the alleviation of symptoms and multi-systemic dysfunction. More stringent and standardised use of case definitions in research is critical to improve generalisability of results and to create the strong evidence-based policies for management that are currently lacking in ME/CFS. Frontiers Media S.A. 2022-01-28 /pmc/articles/PMC8835111/ /pubmed/35155455 http://dx.doi.org/10.3389/fmed.2021.688159 Text en Copyright © 2022 O'Boyle, Nacul, Nacul, Mudie, Kingdon, Cliff, Clark, Dockrell and Lacerda. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Medicine
O'Boyle, Shennae
Nacul, Luis
Nacul, Flavio E.
Mudie, Kathleen
Kingdon, Caroline C.
Cliff, Jacqueline M.
Clark, Taane G.
Dockrell, Hazel M.
Lacerda, Eliana M.
A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
title A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
title_full A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
title_fullStr A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
title_full_unstemmed A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
title_short A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
title_sort natural history of disease framework for improving the prevention, management, and research on post-viral fatigue syndrome and other forms of myalgic encephalomyelitis/chronic fatigue syndrome
topic Medicine
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8835111/
https://www.ncbi.nlm.nih.gov/pubmed/35155455
http://dx.doi.org/10.3389/fmed.2021.688159
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