Abstract：
BACKGROUND: Myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or ME/CFS) is a debilitating, complex, multisystem illness. Developing a comprehensive understanding of the multiple and interconnected barriers to optimal care will help advance strategies and care models to improve quality of life for people living with ME in Canada.
OBJECTIVE: To: (1) identify and systematically map the available evidence; (2) investigate the design and conduct of research; (3) identify and categorize key characteristics; and (4) identify and analyse knowledge gaps related to healthcare system barriers for people living with ME in Canada.
METHODS: The protocol was preregistered in July 2022. Peer-reviewed and grey literature was searched, and patient partners retrieved additional records. Eligible records were Canadian, included people with ME/CFS and included data or synthesis relevant to healthcare system barriers.
RESULTS: In total, 1821 records were identified, 406 were reviewed in full, and 21 were included. Healthcare system barriers arose from an underlying lack of consensus and research on ME and ME care; the impact of long-standing stigma, disbelief, and sexism; inadequate or inconsistent healthcare provider education and training on ME; and the heterogeneity of care coordinated by family physicians.
CONCLUSIONS: People living with ME in Canada face significant barriers to care, though this has received relatively limited attention. This synthesis, which points to several areas for future research, can be used as a starting point for researchers, healthcare providers and decision-makers who are new to the area or encountering ME more frequently due to the COVID-19 pandemic.
OBJECTIVE: To: (1) identify and systematically map the available evidence; (2) investigate the design and conduct of research; (3) identify and categorize key characteristics; and (4) identify and analyse knowledge gaps related to healthcare system barriers for people living with ME in Canada.
METHODS: The protocol was preregistered in July 2022. Peer-reviewed and grey literature was searched, and patient partners retrieved additional records. Eligible records were Canadian, included people with ME/CFS and included data or synthesis relevant to healthcare system barriers.
RESULTS: In total, 1821 records were identified, 406 were reviewed in full, and 21 were included. Healthcare system barriers arose from an underlying lack of consensus and research on ME and ME care; the impact of long-standing stigma, disbelief, and sexism; inadequate or inconsistent healthcare provider education and training on ME; and the heterogeneity of care coordinated by family physicians.
CONCLUSIONS: People living with ME in Canada face significant barriers to care, though this has received relatively limited attention. This synthesis, which points to several areas for future research, can be used as a starting point for researchers, healthcare providers and decision-makers who are new to the area or encountering ME more frequently due to the COVID-19 pandemic.
摘要：
背景：肌痛性脑脊髓炎（ME，也称为慢性疲劳综合征或ME/CFS)是一种使人衰弱的疾病，复杂，多系统疾病。全面了解最佳护理的多重和相互关联的障碍将有助于推进战略和护理模式，以提高加拿大ME患者的生活质量。
目的：目的：（1）确定并系统地绘制现有证据；（2）调查研究的设计和进行；（3）确定和分类关键特征；（4）确定和分析与加拿大ME患者医疗保健系统障碍相关的知识差距。
方法：该方案于2022年7月进行了预注册。同行评议和灰色文献进行了搜索，患者合作伙伴检索了其他记录。符合条件的记录是加拿大人，包括患有ME/CFS的人，并包括与医疗保健系统障碍相关的数据或综合。
结果：总计，1821条记录被确认,406进行了全面审查，包括21个。医疗系统障碍源于对ME和ME护理的潜在共识和研究的缺乏；长期污名的影响，难以置信,和性别歧视；医疗保健提供者对ME的教育和培训不足或不一致；以及由家庭医生协调的护理异质性。
结论：在加拿大，患有ME的人在护理方面面临重大障碍，尽管这受到的关注相对有限。这种合成，这指出了未来研究的几个领域，可以作为研究人员的起点，医疗保健提供者和决策者，他们是该地区的新手，或者由于COVID-19大流行而更频繁地遇到ME。
目的：目的：（1）确定并系统地绘制现有证据；（2）调查研究的设计和进行；（3）确定和分类关键特征；（4）确定和分析与加拿大ME患者医疗保健系统障碍相关的知识差距。
方法：该方案于2022年7月进行了预注册。同行评议和灰色文献进行了搜索，患者合作伙伴检索了其他记录。符合条件的记录是加拿大人，包括患有ME/CFS的人，并包括与医疗保健系统障碍相关的数据或综合。
结果：总计，1821条记录被确认,406进行了全面审查，包括21个。医疗系统障碍源于对ME和ME护理的潜在共识和研究的缺乏；长期污名的影响，难以置信,和性别歧视；医疗保健提供者对ME的教育和培训不足或不一致；以及由家庭医生协调的护理异质性。
结论：在加拿大，患有ME的人在护理方面面临重大障碍，尽管这受到的关注相对有限。这种合成，这指出了未来研究的几个领域，可以作为研究人员的起点，医疗保健提供者和决策者，他们是该地区的新手，或者由于COVID-19大流行而更频繁地遇到ME。
