By Courtney Craig, D. C.
This May 3rd to May 5th marked the first annual Canadian Collaborative Team Conference at the CHU Sainte-Justine Hospital, Montreal. The conference brought together American and Canadian, patient and clinician, scientist and activist. Collaboration was indeed a major theme—with a focus on leveraging innovation to advance ME/CFS research. Day 1 introduced clinicians to the diagnosis and management of ME/CFS. Speakers stressed the importance of refining the diagnostic process. An accurate diagnosis was deemed the most important factor in patient care and in some cases is therapeutic. Canadian Clinicians presented a unique multidisciplinary approach with the establishment of large centers focused on the complex multi-system needs of patients.
A research-heavy day followed with parallel patient-centered sessions. Here, advocacy groups came together to brainstorm new projects in a post-Unrest ME/CFS world. Projects beyond May 12th and Millions Missing were suggested to continue the campaign throughout the year. Medical school education, leveraging technology and social media, legislative persistence, and education events targeted to industry, lawmakers, and philanthropists were all suggested.
Researchers from Europe introduced the European Network on ME/CFS (EUROMENE), a collaborative research network of 20 European countries. Their working groups include biomarker discovery, socioeconomics, clinical, and epidemiological focus. The hope is that EUROMENE can provide a framework for a similar group in North America.
Further, an Australian initiative was presented to establish biobanks and research databases for data sharing. With a focus on collecting “big data,” research groups across the globe can compare findings from larger cohorts of patients and controls for more robust studies. Indeed many researchers in attendance underscored the need for improved standards in research practices to allow for reproducibility and higher impact studies.
Above all, attendees agreed that putting the patient at the center of future efforts would be essential. In using patient data, understanding patient needs, and using patients as a means of disseminating information, research and advocacy will move forward.
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Courtney Craig is a member of the AMMES Medical and Scientific Advisory Board. She received her clinical training at Palmer College of Chiropractic, Florida, and studied exercise science at the College of William and Mary. She holds an MA from the University of Bridgeport’s Human Nutrition Institute.
Image: Left to right: Vicky Whittemore, Dr. Derya Unutmaz, and Dr. Maureen Hanson