Healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis: a scoping review

Background Myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or ME/CFS) is a debilitating, complex, multi-system 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. Objectives 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 analyze 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. Funding This study was funded by the University of Calgary (VPR Catalyst Grant) and the Interdisciplinary Canadian Collaborative ME (ICanCME) Research Network (New Frontier ME Discovery Grant). ### Competing Interest Statement ES is a retired physician who provides paid online educational services to people with ME and related diseases. MM was a member of the Ontario Task Force on Environmental Health. SM was the leader of the Nanaimo ME Support Group and involved in the related Physicians Survey. The ICanCME Research Network was funded by a 2019 Catalyst Network grant awarded by CIHR-Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA). During manuscript preparation, RT accepted a position within CIHR-IMHA. RTs involvement with ICanCME was restricted to the publication of existing studies and was terminated thereafter. ### Funding Statement This study was funded by the University of Calgary (VPR Catalyst Grant) and the ICanCME Research Network (New Frontier ME Discovery Grant). During this scoping review, RT was funded by a CIHR Postdoctoral Fellowship. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data produced in the study are contained in Table I and II. Online Supplementary Material can be found at: . Please contact the authors to request additional information.