Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A Patient-Driven Survey
Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A Patient-Driven Survey
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DOI：
10.3390/diagnostics9010026
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发表时间：
2019-03-02
期刊：
影响因子：
3.6
通讯作者：
Jason, Leonard A.
中科院分区：
文献类型：
--
作者：
Holtzman, Carly S.;Bhatia, Shaun;Jason, Leonard A.
运动后不适（PEM）是肌痛性脑脊髓炎（ME）和慢性疲劳综合征（CFS）的定义特征之一，对PEM的评估存在相当大的争议。虽然已经开发了一些自我报告问卷来评估这种症状，但没有一个是全面的，最近的一份联邦政府报告建议开发一种新的PEM措施。目前的研究涉及一个以社区为基础的参与式研究过程，努力开发一个全面的PEM工具，与关键的病人输入塑造项目的选择和工具的整体设计。最终制定了一项调查，随后由1534名患者社区成员完成。这项调查的结果表明，有这种症状的关键领域，包括触发，症状发作和持续时间，这往往没有得到全面评估，在以前的PEM工具。这项研究表明，患者与研究人员合作测量ME和CFS的关键症状可以带来独特的益处。
Considerable controversy has existed with efforts to assess post-exertional malaise (PEM), which is one of the defining features of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). While a number of self-report questionnaires have been developed to assess this symptom, none have been comprehensive, and a recent federal government report has recommended the development of a new PEM measure. The current study involved a community-based participatory research process in an effort to develop a comprehensive PEM instrument, with critical patient input shaping the item selection and overall design of the tool. A survey was ultimately developed and was subsequently completed by 1534 members of the patient community. The findings of this survey suggest that there are key domains of this symptom, including triggers, symptom onset, and duration, which have often not been comprehensively assessed in a previous PEM instrument. This study indicates that there are unique benefits that can be derived from patients collaborating with researchers in the measurement of key symptoms defining ME and CFS.