The ME|FM Society of BC is pleased to share exciting news about our new ME patient-oriented research
Updated: Feb 19
Patient-oriented research awards funded in brain imaging and physiology for Myalgic Encephalomyelitis in British Columbia
The ME/FM Society of BC (myalgic encephalomyelitis and fibromyalgia) is pleased to announce the successful funding of two research projects aiming to apply neuroimaging and neurophysiological tools to help patients living with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome.
ME is a debilitating disease that usually follows an infectious onset, characterized by a marked reduction in functioning and a severe worsening of symptoms after even minimal exertion. It is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems. Over 77,000 British Columbians are estimated to have the condition according to Statistics Canada.
Both research awards are funded and supported by BC SUPPORT Unit Fraser Centre, an organization that promotes patient-oriented research (POR). Partnering in this way means that patients are part of the research teams and collaborate in the construction of the project from beginning to end, bringing a valuable perspective that may be missing in traditional research. These two projects have been initiated by patients involved with the ME/FM Society of BC and facilitated by the BC SUPPORT Unit Fraser Centre team.
The first funded project builds on previous research showing signs of brain inflammation in ME patients and will use brain imaging techniques such as functional MRI (magnetic resonance imaging) and MRS (magnetic resonance spectroscopy). The project will include a patient panel discussion session together with recruitment/enrolment of over 20 ME patients and control participants for a MRI scan. The analysis plan includes testing the feasible and reliable detection of MRI brain changes in ME. The research team includes Dr. Xiaowei Song, a clinical neuroimaging senior scientist at Surrey Memorial Hospital, Fraser Health, Dr. Luis Nacul, Research and Medical Director of the Complex Chronic Diseases Program at BC Women’s Hospital and the Women’s Health Research Institute and patient partners. The MRI project has also obtained supplementary funding to support the training of young investigators in conducting patient-oriented neuroimaging research.
The second project will explore the potential of electro- and magneto-encephalography tools (EEG and MEG) to support more accurate diagnosis of ME, confirm clinical observations, stratify patients into subtypes, and predict therapeutic response. The long-term goal is to establish a sustainable collaboration between clinicians and scientists led by forementioned Dr. Luis Nacul from BC Women’s Hospital and Dr. Vasily Vakorin, a scientist at the Behavioral and Cognitive Neuroscience Institute (BCNI) at Simon Fraser University (SFU), as well as patient partners.
Through a total investment of $40,000, ME has been introduced to scientists and clinicians who are experts to their discipline, but new to the field of ME, and who will work together with established ME experts. Importantly, both projects provide an exceptional opportunity for students at SFU to gain hands-on experience in neuroimaging, neurophysiology and clinical research and learn about clinical conditions such as ME from three different perspectives: patients, clinicians, and neuroscientists.
ME/FM Society of BC is thrilled to be an active partner in these projects and thankful to the BC SUPPORT Unit Fraser Centre for helping research partners join forces in exploring neuroimaging and neurophysiological approaches to understand the pathology and find biomarkers of ME.
We encourage you to share widely!
While this is great news for our community, the best news will be when we have results on the first study and funding on an actual study on the second project. In the meantime, through this research we are spreading awareness about ME and the need for biomedical research.
We thank BC SUPPORT Unit-Fraser centre for their funding and their support, and highlighting our research partners.
Many of you will ask how to become research participants on the MRI study.
The patient recruitment will be done in a systematic manner using the BC Women's Complex Chronic Diseases Program (CCDP) "permission to be contacted" list. The eligibility criteria are fairly tight, so only eligible patients will be contacted. It is hoped that a larger study will stem from this pilot with wider eligibility criteria.
There will be opportunities to participate in patient panels in the near future, so keep an eye on our society’s announcements when the time comes to recruit participants for these events.