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重新审视肌痛性脑脊髓炎/慢性疲劳综合征(ME/CFS):疾病的生物学基础及支持患者的建议

Reframing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Biological Basis of Disease and Recommendations for Supporting Patients.

作者信息

Agarwal Priya, Friedman Kenneth J

机构信息

Rutgers Robert Wood Johnson Medical School, Rutgers University, New Brunswick, NJ 08901, USA.

Department of Medicine, Rowan-Virtua School of Osteopathic Medicine, Stratford, NJ 08084, USA.

出版信息

Healthcare (Basel). 2025 Aug 5;13(15):1917. doi: 10.3390/healthcare13151917.

Abstract

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a worldwide challenge. There are an estimated 17-24 million patients worldwide, with an estimated 60 percent or more who have not been diagnosed. Without a known cure, no specific curative medication, disability lasting years to being life-long, and disagreement among healthcare providers as to how to most appropriately treat these patients, ME/CFS patients are in need of assistance. Appropriate healthcare provider education would increase the percentage of patients diagnosed and treated; however, in-school healthcare provider education is limited. To address the latter issue, the New Jersey Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association (NJME/CFSA) has developed an independent, incentive-driven, learning program for students of the health professions. NJME/CFSA offers a yearly scholarship program in which applicants write a scholarly paper on an ME/CFS-related topic. The efficacy of the program is demonstrated by the 2024-2025 first place scholarship winner's essay, which addresses the biological basis of ME/CFS and how the healthcare provider can improve the quality of life of ME/CFS patients. For the reader, the essay provides an update on what is known regarding the biological underpinnings of ME/CFS, as well as a medical student's perspective as to how the clinician can provide care and support for ME/CFS patients. The original essay has been slightly modified to demonstrate that ME/CFS is a worldwide problem and for publication.

摘要

肌痛性脑脊髓炎/慢性疲劳综合征(ME/CFS)是一项全球性挑战。全球估计有1700万至2400万患者,其中估计60%或更多未被诊断出来。由于没有已知的治愈方法,没有特定的治疗药物,残疾持续数年甚至终身,且医疗服务提供者对于如何最恰当地治疗这些患者存在分歧,ME/CFS患者需要帮助。适当的医疗服务提供者教育将提高被诊断和治疗的患者比例;然而,校内医疗服务提供者教育是有限的。为了解决后一个问题,新泽西肌痛性脑脊髓炎/慢性疲劳综合征协会(NJME/CFSA)为健康专业学生开发了一个独立的、激励驱动的学习项目。NJME/CFSA提供年度奖学金项目,申请者就与ME/CFS相关的主题撰写一篇学术论文。该项目的成效通过2024 - 2025年度一等奖奖学金获得者的论文得以体现,该论文探讨了ME/CFS的生物学基础以及医疗服务提供者如何改善ME/CFS患者的生活质量。对于读者而言,这篇论文提供了关于ME/CFS生物学基础的最新认知,以及一名医学生对于临床医生如何为ME/CFS患者提供护理和支持的观点。原文经过了轻微修改,以表明ME/CFS是一个全球性问题并用于发表。

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