Our research
The ME|FM Society of BC has a Research Committee that works to engage in research projects in various capacities. We have partnered with other research entities to co-lead our own projects and we are patient partners on externally led projects. For more information about our projects, or with interest to partner in research, please contact research@mefm.bc.ca.
BC Patient Experience Survey Report (October 2025)
The ME|FM Society of BC, in partnership with National ME Action Network, BC Lyme Society, and ME Victoria Association, conducted the largest survey of ME/CFS, fibromyalgia, Long COVID and Lyme patient experiences ever undertaken in British Columbia.
1,045 British Columbians shared their healthcare experiences, representing the full spectrum of patient populations across the province - from those accessing specialized illness-focused clinics to hundreds navigating care through family physicians and community providers. Respondents came from all BC health authorities, including urban, rural, and suburban communities.
The findings reveal systemic healthcare challenges affecting patients province-wide. The consistency of experiences across all patient groups and geographic regions demonstrates these are not isolated incidents but system-wide gaps in provider education, resources, and care coordination.
Key findings include:
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93% had negative healthcare experiences
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75% said their healthcare providers lack basic knowledge about their conditions
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75% experienced simply not being believed
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35% reported 11 or more different types of negative experiences
Click here for a 13-page easy to read summary designed for patients, caregivers, and advocates. Includes key findings, patient quotes, and a printable one-page summary for your healthcare provider.
A Multimodal Magnetic Resonance Imaging Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Feasibility and Clinical Correlation
This 2024 MRI study identifies possible differences in several brain functions between ME/CFS patients and healthy controls.
Unmet Needs of British Columbians living with ME (Unmet Needs)
Unmet Needs is a preliminary project sponsored by the following organizations. The project explored both clinician and patient perspectives.
MRI project
In 2019 a collaboration between neuroscientist Dr Xiaowei Song at Surrey Memorial Hospital (BC), Dr Luis Nacul at BC Women’s and ME|FM Society of BC received a small grant to study brain functioning for patients living with ME. This research project, while slowed down by COVID-19, is still ongoing. It involved performing brain MRI and magnetic resonance spectroscopy on nearly 20 patients and 5 controls, which constitutes a pilot project. We hope this research represents the beginning of a bigger partnership.
ICanCME research network
In August 2019, a $1.4M catalyst grant from the Canadian Institute for Health Research (CIHR) funding the development of the ICanCME Research Network. ICanCME brings together researchers and patients within its governance and working group activities. ME|FM Society of BC remains closely connected to the activities of ICanCME.