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肌痛性脑脊髓炎/慢性疲劳综合征的进展:过去、现在与未来

Advances in ME/CFS: Past, Present, and Future.

作者信息

Friedman Kenneth J

机构信息

Retired, Plantation, FL, United States.

出版信息

Front Pediatr. 2019 Apr 18;7:131. doi: 10.3389/fped.2019.00131. eCollection 2019.

Abstract

The forerunner of what is today termed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was described by the U.S. Public Health Service in 1934. At the present time, we still do not know its cause and/or how to detect it by routine clinical laboratory tests. In consequence, the pathological nature of ME/CFS has been overlooked and the disease has been stigmatized by being mislabeled as psychosomatic or somatoform illness. Such misperceptions of the disease have led to insufficient research exploration of the disease and minimal to absent patient care. A 2015 Institute of Medicine report on the illness declared ME/CFS a disease affecting up to 2.5 million Americans and chastised the U.S. government for doing little to research the disease and to support its patients. Clinicians who currently treat this disease declare it to be more devastating than HIV/AIDS. A comparison of the histories of the two diseases, an examination of the current status of the two diseases, and a listing of the accomplishments that would be needed for ME/CFS to achieve the same level of treatment and care as currently experienced by patients with HIV/AIDS is provided.

摘要

1934年,美国公共卫生服务部门描述了如今被称为肌痛性脑脊髓炎/慢性疲劳综合征(ME/CFS)的前身。目前,我们仍然不知道其病因和/或如何通过常规临床实验室检查来检测它。因此,ME/CFS的病理性质被忽视了,并且该疾病因被错误地贴上心身疾病或躯体形式障碍疾病的标签而受到污名化。对该疾病的这种误解导致了对该疾病的研究探索不足,以及患者护理极少甚至没有。2015年医学研究所关于该疾病的一份报告称,ME/CFS是一种影响多达250万美国人的疾病,并指责美国政府在研究该疾病和支持其患者方面做得很少。目前治疗这种疾病的临床医生宣称它比艾滋病毒/艾滋病更具毁灭性。本文提供了对这两种疾病历史的比较、对这两种疾病现状的审视,以及ME/CFS要达到与目前艾滋病毒/艾滋病患者所享有的相同治疗和护理水平所需取得的成就清单。

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