儿童重症肌痛性脑脊髓炎
Severe ME in Children.
作者信息
Speight Nigel
机构信息
Paediatrician, Southlands, Gilesgate, Durham DH1 1QN, UK.
出版信息
Healthcare (Basel). 2020 Jul 14;8(3):211. doi: 10.3390/healthcare8030211.
Abstract
A current problem regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the large proportion of doctors that are either not trained or refuse to recognize ME/CFS as a genuine clinical entity, and as a result do not diagnose it. An additional problem is that most of the clinical and research studies currently available on ME are focused on patients who are ambulant and able to attend clinics and there is very limited data on patients who are very severe (housebound or bedbound), despite the fact that they constitute an estimated 25% of all ME/CFS cases. This author has personal experience of managing and advising on numerous cases of severe paediatric ME, and offers a series of case reports of individual cases as a means of illustrating various points regarding clinical presentation, together with general principles of appropriate management.
摘要
当前，关于肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）的一个问题是，很大一部分医生要么未接受过相关培训，要么拒绝将ME/CFS视为一种真正的临床病症，因此无法对其进行诊断。另一个问题是，目前关于ME的大多数临床和研究都集中在能够行走并前往诊所就诊的患者身上，而对于病情非常严重（居家或卧床）的患者，相关数据非常有限，尽管据估计这部分患者占所有ME/CFS病例的25%。本文作者有管理众多严重儿童ME病例并提供相关建议的个人经验，并提供了一系列个别病例报告，以说明临床表现的各个要点以及适当管理的一般原则。
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本文引用的文献
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Dig Dis Sci. 2021 Apr;66(4):965-982. doi: 10.1007/s10620-020-06264-9. Epub 2020 Apr 23.
2
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Acta Paediatr. 2020 Apr;109(4):862. doi: 10.1111/apa.15181. Epub 2020 Feb 22.
3
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer.青少年肌痛性脑脊髓炎/慢性疲劳综合征的诊断与管理：入门指南
Front Pediatr. 2017 Jun 19;5:121. doi: 10.3389/fped.2017.00121. eCollection 2017.
4
Median arcuate ligament syndrome in the pediatric population.儿童人群中的正中弓状韧带综合征。
J Pediatr Surg. 2013 Nov;48(11):2261-70. doi: 10.1016/j.jpedsurg.2013.03.003.
5
The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers.肌痛性脑脊髓炎/慢性疲劳综合征患者及其照顾者的功能状态和健康状况。
BMC Public Health. 2011 May 27;11:402. doi: 10.1186/1471-2458-11-402.
6
Double-blind randomized controlled trial to assess the efficacy of intravenous gammaglobulin for the management of chronic fatigue syndrome in adolescents.双盲随机对照试验，以评估静脉注射丙种球蛋白治疗青少年慢性疲劳综合征的疗效。
J Psychiatr Res. 1997 Jan-Feb;31(1):133-47. doi: 10.1016/s0022-3956(96)00047-7.
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