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在肌痛性脑脊髓炎/慢性疲劳综合征(ME/CFS)病例中对残疾进行医学记录。

Medically Documenting Disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Cases.

作者信息

Comerford Barbara B, Podell Richard

机构信息

Law Offices of Barbara Comerford, Paramus, NJ, United States.

Robert Wood Johnson Medical School, Rutgers, The State University of New Jersey, New Brunswick, NJ, United States.

出版信息

Front Pediatr. 2019 Jul 2;7:231. doi: 10.3389/fped.2019.00231. eCollection 2019.

Abstract

Patients with severe myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS) experience debilitating physical and cognitive symptoms, which often result in the need to file disability claims. A significant number of ME/CFS patients are children or adolescents. ME/CFS patients often turn to physicians who are not trained to recognize and diagnose ME/CFS, and who might or might not understand that ME/CFS is a multi-system primarily physical illness. Such misperceptions can adversely affect the doctor-patient relationship, the clinical outcomes, as well as the results of disability claims. According to the National Academies of Science, Engineering and Medicine, "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome… This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort. ME/CFS can severely impair patients' ability to conduct their normal lives." The prevalence of MECFS among children and adolescents has been estimated variously as between 0.11 and 4% (1). A large percentage of children and adolescents with ME/CFS suffer from orthostatic intolerance due to one or both of these syndromes: Neurally Mediated Hypotension (NMH) and Postural Orthostatic Tachycardia Syndrome (POTS). These elements of ME/CFS often respond well to proper treatment (2, 3).

摘要

重症肌痛性脑脊髓炎/慢性疲劳综合征(ME/CFS)患者会出现使人衰弱的身体和认知症状,这常常导致他们需要提交残疾索赔申请。相当一部分ME/CFS患者是儿童或青少年。ME/CFS患者常常求助于未接受过识别和诊断ME/CFS培训的医生,这些医生可能理解也可能不理解ME/CFS是一种主要影响多系统的身体疾病。这种误解会对医患关系、临床结果以及残疾索赔结果产生不利影响。根据美国国家科学院、工程院和医学院的说法,“83.6万至250万美国人患有肌痛性脑脊髓炎/慢性疲劳综合征……这种疾病的特征是极度疲劳、认知功能障碍、睡眠异常、自主神经症状、疼痛以及其他因任何形式的劳累而加重的症状。ME/CFS会严重损害患者正常生活的能力。”据估计,儿童和青少年中ME/CFS的患病率在0.11%至4%之间(1)。很大一部分患有ME/CFS的儿童和青少年因以下一种或两种综合征而患有体位性不耐受:神经介导性低血压(NMH)和体位性心动过速综合征(POTS)。ME/CFS的这些症状通常对适当的治疗反应良好(2,3)。

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