爱泼斯坦-巴尔病毒感染性单核细胞增多症后，对患有肌痛性脑脊髓炎/慢性疲劳综合征的年轻人进行的一年随访。
One-year follow-up of young people with ME/CFS following infectious mononucleosis by Epstein-Barr virus.
作者信息
Pricoco Rafael, Meidel Paulina, Hofberger Tim, Zietemann Hannah, Mueller Yvonne, Wiehler Katharina, Michel Kaja, Paulick Johannes, Leone Ariane, Haegele Matthias, Mayer-Huber Sandra, Gerrer Katrin, Mittelstrass Kirstin, Scheibenbogen Carmen, Renz-Polster Herbert, Mihatsch Lorenz, Behrends Uta
机构信息
MRI Chronic Fatigue Center for Young People (MCFC), Children's Hospital, TUM School of Medicine, Technical University of Munich and Munich Municipal Hospital Schwabing, Munich, Germany.
Institute of Medical Immunology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt Universität zu Berlin and Berlin Institute of Health (BIH), Berlin, Germany.
出版信息
Front Pediatr. 2024 Jan 18;11:1266738. doi: 10.3389/fped.2023.1266738. eCollection 2023.
BACKGROUND
Infectious mononucleosis after primary infection with Epstein-Barr virus (EBV-IM) has been linked to the development of myalgic encephalomyelitis/chronic fatigue-syndrome (ME/CFS) in children, adolescents, and young adults. Here, we present clinical phenotypes and follow-up data from a first German cohort of young people with ME/CFS following EBV-IM.
METHODS
12 adolescents and 13 young adults were diagnosed with IM-triggered ME/CFS at our specialized tertiary outpatient service by clinical criteria requiring post-exertional malaise (PEM) and a history of confirmed EBV primary infection as triggering event. Demographic information, laboratory findings, frequency and severity of symptoms, physical functioning, and health-related quality of life (HRQoL) were assessed and re-evaluated 6 and 12 months later.
RESULTS
Young adults displayed more severe symptoms as well as worsening of fatigue, physical and mental functioning, and HRQoL throughout the study, compared to adolescents. After one year, 6/12 (54%) adolescents no longer met the diagnostic criteria for ME/CFS while all young adults continued to fulfill the Canadian consensus criteria. Improvement in adolescents was evident in physical functioning, symptom frequency and severity, and HRQoL, while young adults showed little improvement. EBV serology and EBV DNA load did not correlate with distinct clinical features of ME/CFS, and clinical chemistry showed no evidence of inflammation. Remarkably, the median time from symptom onset to ME/CFS diagnosis was 13.8 (IQR: 9.1-34.9) months.
CONCLUSIONS
ME/CFS following EBV-IM is a severely debilitating disease often diagnosed late and with limited responses to conventional medical care, especially in adults. Although adolescents may have a better prognosis, their condition can fluctuate and significantly impact their HRQoL. Our data emphasize that biomarkers and effective therapeutic options are also urgently needed to improve medical care and pave the way to recovery.
背景
初次感染爱泼斯坦-巴尔病毒后发生的传染性单核细胞增多症（EBV-IM）与儿童、青少年及青年的肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）的发生有关。在此，我们展示了德国首个EBV-IM后发生ME/CFS的青年队列的临床表型及随访数据。
方法
在我们的专科三级门诊，依据需要劳力后不适（PEM）以及确诊的EBV初次感染史作为触发事件的临床标准，对12名青少年和13名青年诊断为IM引发的ME/CFS。评估了人口统计学信息、实验室检查结果、症状的频率和严重程度、身体功能以及健康相关生活质量（HRQoL），并在6个月和12个月后进行重新评估。
结果
与青少年相比，在整个研究过程中，青年的症状更严重，疲劳、身体和心理功能以及HRQoL恶化。一年后，6/12（54%）的青少年不再符合ME/CFS的诊断标准，而所有青年仍符合加拿大共识标准。青少年在身体功能、症状频率和严重程度以及HRQoL方面有明显改善，而青年改善甚微。EBV血清学和EBV DNA载量与ME/CFS的不同临床特征无关，临床化学检查未显示炎症迹象。值得注意的是，从症状出现到ME/CFS诊断的中位时间为13.8（四分位间距：9.1 - 34.9）个月。
结论
EBV-IM后的ME/CFS是一种严重致残的疾病，诊断往往较晚，对传统医疗的反应有限，尤其是在成年人中。尽管青少年可能预后较好，但其病情可能波动并显著影响其HRQoL。我们的数据强调，迫切需要生物标志物和有效的治疗选择来改善医疗护理并为康复铺平道路。
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