J Health Psychol. 2017 Aug;22(9):1168-1176. doi: 10.1177/1359105317703787. Epub 2017 May 11.
The PACE investigators' citation of a patient survey might mislead readers into thinking that the experience of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) supports PACE findings. In fact, patient survey evidence directly contradicts the results of the PACE trial. A review of survey data published between 2001 and 2015 reveals that for most patients, graded exercise therapy leads to worsening of symptoms, cognitive behavioural therapy leads to no change in symptoms, and pacing leads to improvement. The experience of people with ME/CFS as reflected in surveys is a rich source of information, made more compelling by the consistency of results. Consequently, patient survey evidence can be used to inform practice, research and guidelines. Misrepresentation of patient experience must be vigorously challenged, to ensure that patients and health professionals make decisions about therapies based on accurate information.
PACE 研究人员引用患者调查可能会误导读者，让他们认为肌痛性脑脊髓炎/慢性疲劳综合征 (ME/CFS) 患者的体验支持 PACE 的研究结果。事实上，患者调查证据直接与 PACE 试验的结果相矛盾。对 2001 年至 2015 年期间发表的调查数据的审查表明，对于大多数患者，分级运动疗法会导致症状恶化，认知行为疗法不会导致症状改变，而调整生活节奏会导致症状改善。调查中反映的 ME/CFS 患者的体验是丰富信息的来源，其结果的一致性更具说服力。因此，患者调查证据可用于为实践、研究和指南提供信息。必须坚决反对对患者体验的歪曲，以确保患者和卫生专业人员根据准确的信息做出治疗决策。
