Hieber Hannah, Pricoco Rafael, Gerrer Katrin, Heindrich Cornelia, Wiehler Katharina, Mihatsch Lorenz L, Haegele Matthias, Schindler Daniela, Donath Quirin, Christa Catharina, Grabbe Annika, Kircher Alissa, Leone Ariane, Mueller Yvonne, Zietemann Hannah, Freitag Helma, Sotzny Franziska, Warlitz Cordula, Stojanov Silvia, Hattesohl Daniel B R, Hausruckinger Anna, Mittelstrass Kirstin, Scheibenbogen Carmen, Behrends Uta
MRI Chronic Fatigue Center for Young People (MCFC), Pediatrics, Children's Hospital, TUM School of Medicine and Health, Technical University of Munich, 80333 Munich, Germany.
Institute of Medical Immunology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Augustenburger Platz 1, 13353 Berlin, Germany.
J Clin Med. 2024 May 28;13(11):3168. doi: 10.3390/jcm13113168.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating multisystemic disease characterized by a complex, incompletely understood etiology. To facilitate future clinical and translational research, a multicenter German ME/CFS registry (MECFS-R) was established to collect comprehensive, longitudinal, clinical, epidemiological, and laboratory data from adults, adolescents, and children in a web-based multilayer-secured database. Here, we present the research protocol and first results of a pilot cohort of 174 ME/CFS patients diagnosed at two specialized tertiary fatigue centers, including 130 (74.7%) adults (mean age 38.4; SD 12.6) and 43 (25.3%) pediatric patients (mean age 15.5; SD 4.2). A viral trigger was identified in 160/174 (92.0%) cases, with SARS-CoV-2 in almost half of them. Patients exhibited severe functional and social impairment, as reflected by a median Bell Score of 30.0 (IQR 30.0 to 40.0) and a poor health-related quality of life assessed with the Short Form-36 health survey, resulting in a mean score of 40.4 (SD 20.6) for physical function and 59.1 (SD 18.8) for mental health. The MECFS-R provides important clinical information on ME/CFS to research and healthcare institutions. Paired with a multicenter biobank, it facilitates research on pathogenesis, diagnostic markers, and treatment options. Trial registration: ClinicalTrials.gov NCT05778006.
肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）是一种使人衰弱的多系统疾病，其病因复杂且尚未完全明确。为推动未来的临床和转化研究，德国建立了一个多中心ME/CFS登记处（MECFS-R），以在基于网络的多层安全数据库中收集成人、青少年和儿童全面的纵向临床、流行病学和实验室数据。在此，我们展示了来自两个专业三级疲劳中心诊断的174例ME/CFS患者的试点队列的研究方案和初步结果，其中包括130例（74.7%）成人（平均年龄38.4岁；标准差12.6）和43例（25.3%）儿科患者（平均年龄15.5岁；标准差4.2）。在160/174例（92.0%）病例中发现了病毒触发因素，其中近一半是新冠病毒。患者表现出严重的功能和社会障碍，Bell评分中位数为30.0（四分位间距30.0至40.0），以及通过简短健康调查问卷评估的较差的健康相关生活质量，身体功能平均得分为40.4（标准差20.6），心理健康平均得分为59.1（标准差18.8）。MECFS-R为研究和医疗机构提供了有关ME/CFS的重要临床信息。与多中心生物样本库相结合，它有助于对发病机制、诊断标志物和治疗方案的研究。试验注册：ClinicalTrials.gov NCT05778006。
