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.

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.
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DOI:
10.3389/fmed.2021.688159
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发表时间:
2021
影响因子:
3.9
通讯作者:
Lacerda EM
Lacerda EM
中科院分区:
医学3区
文献类型:
--
作者:
O'Boyle S;Nacul L;Nacul FE;Mudie K;Kingdon CC;Cliff JM;Clark TG;Dockrell HM;Lacerda EM

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我们提出了一个治疗、康复和研究肉芽肿性脑脊髓炎/慢性疲劳综合征(ME/CFS)的框架,使用自然病史方法来勾勒出不同的疾病阶段,重点是感染后的病例,以提供对预防的见解。放弃根据各种表型表现对患者进行亚型划分的方法,转而沿着疾病发展的路线进行重新划分,可能有助于确定疾病的不同阶段,每个阶段都将受益于大型前瞻性队列研究,以准确描述其中发生的病理机制。通过更好地了解这些机制,可以针对每个疾病阶段进行专门的管理和研究。疾病前期和疾病早期阶段需要采取管理策略,通过重点避免进一步的侮辱、充分的休息以便能够恢复以及活动的节奏,来降低长期发病率的风险。较晚的疾病阶段需要更全面和量身定制的管理方法,治疗--当这种方法可用时--以缓解症状和多系统功能障碍为目标。在研究中更严格和标准化地使用病例定义,对于改善结果的概括性和为管理制定强有力的循证政策至关重要,而这是ME/CFS目前所缺乏的。
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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