Tschopp Rea, König Rahel S, Rejmer Protazy, Paris Daniel H
Department of Epidemiology and Public Health, Swiss Tropical and Public Health Institute, Allschwil, Switzerland.
University of Basel, Switzerland.
J Taibah Univ Med Sci. 2023 Jan 4;18(4):876-885. doi: 10.1016/j.jtumed.2022.12.019. eCollection 2023 Aug.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic and debilitating multifactorial disease. Adequate patient care is challenged by poor knowledge among health care professionals and the historical misconception that the disease is psychological in nature. This study assessed the health-related challenges faced by patients with ME/CFS in Switzerland and examined whether they receive adequate health care.
Quantitative and qualitative data were collected through a self-administered questionnaire between June and September of 2021, among 169 patients with ME/CFS in Switzerland.
The mean age at diagnosis was 38.8 years. Only one-third of ME/CFS affected children and youth were correctly diagnosed before their 18th birthday. The mean time from disease onset to diagnosis was 6.7 years, and patients had an average of 11.1 different appointments and 2.6 misdiagnoses. A poor diagnosis rate and insufficient disease knowledge among health professionals in Switzerland led 13.5% of the patients to travel abroad to seek a diagnosis. Most patients (90.5%) were told at least once that their symptoms were psychosomatic. Swiss patients expressed high dissatisfaction with the health system and indicated that physicians lacked knowledge regarding ME/CFS. Therapies prescribed by physicians or tried by patients, as well as their perceived efficacy, were described. Graded Exercise Therapy (GET) was perceived as harmful by patients, whereas pacing, complementary/alternative medicine, and dietary supplements and medications to alleviate symptoms were reported to be helpful to varying degrees.
This study highlights that poor disease knowledge among health care providers in Switzerland has led to high patient dissatisfaction, and delays in ME/CFS diagnoses and prescription of inappropriate therapies, thus adding to patient distress and disease burden.
肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）是一种复杂的慢性衰弱性多因素疾病。医疗保健专业人员对该疾病了解不足，加上历史上存在认为该疾病本质上是心理性的误解，给患者的充分护理带来了挑战。本研究评估了瑞士ME/CFS患者面临的与健康相关的挑战，并调查了他们是否获得了充分的医疗保健。
2021年6月至9月期间，通过自填式问卷收集了瑞士169例ME/CFS患者的定量和定性数据。
诊断时的平均年龄为38.8岁。只有三分之一受ME/CFS影响的儿童和青少年在18岁之前得到正确诊断。从疾病发作到诊断的平均时间为6.7年，患者平均有11.1次不同的就诊经历和2.6次误诊。瑞士医疗专业人员的诊断率低和对该疾病的知识不足，导致13.5%的患者出国寻求诊断。大多数患者（90.5%）至少有一次被告知其症状是心身性的。瑞士患者对医疗系统表示高度不满，并指出医生缺乏关于ME/CFS的知识。描述了医生开的或患者尝试的治疗方法及其感知疗效。患者认为分级运动疗法（GET）有害，而据报告，调整节奏、补充/替代医学以及缓解症状的膳食补充剂和药物在不同程度上有帮助。
本研究强调，瑞士医疗保健提供者对疾病的了解不足导致患者高度不满，ME/CFS诊断延迟和不适当治疗方法的开具，从而加重了患者的痛苦和疾病负担。
