Holtzman Carly S, Bhatia Shaun, Cotler Joseph, Jason Leonard A
Center for Community Research, Department of Psychology, DePaul University, Chicago, IL 60604, USA.
Center for Community Research, DePaul University, Chicago, IL 60604, USA.
Diagnostics (Basel). 2019 Mar 2;9(1):26. doi: 10.3390/diagnostics9010026.
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.
在评估运动后不适（PEM）方面一直存在相当大的争议，运动后不适是肌痛性脑脊髓炎（ME）和慢性疲劳综合征（CFS）的关键特征之一。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，最近一份联邦政府报告建议开发一种新的PEM测量方法。当前的研究涉及一个基于社区的参与性研究过程，旨在开发一种全面的PEM工具，关键的患者意见塑造了该工具的项目选择和整体设计。最终开发了一项调查，随后由1534名患者社区成员完成。这项调查的结果表明，这种症状有一些关键领域，包括触发因素、症状发作和持续时间，而这些在以前的PEM工具中往往没有得到全面评估。这项研究表明，患者与研究人员合作测量定义ME和CFS的关键症状能带来独特的益处。
