Many thanks to Margaret Parlor and the National ME/FM Action Network for an excellent Patient Pre-Conference in Montreal, which took place on the afternoon on day #1 of the Montreal ME/CFS Canadian Collaborative Team Conference.
Margaret Soden moderated the meeting, which was attended by patients and patient groups from around Canada. This is the first time Canadian patients have come together to meet to discuss how to address our communities' unmet needs. Also at the meeting were staff from the BC Women's Hospital's Complex Chronic Diseases Program.
The Society's Larry Dawe introduced Dr. Ray Copes, Chair, Task Force on Environmental Health, and Chief, Environmental and Occupational Health. Dr. Copes presented on the Task Force - Interim Report Update. The Ontario report was commissioned by the Ontario Minister of Health, but is a valuable tool for all Canadian jurisdictions, as it reflects the issues that ME and FM patients face with health care systems throughout the country. Stigma, severe shortage of knowledgeable doctors, absence from medical school curricula, a lack of accepted medical guidelines, and lack of research were identified by the report as problems that need to be addressed. The Network collected responses to the Task Force Interim Report from patients and patient groups, and submitted them to Dr. Copes at the meeting.
Margaret Parlor followed with a presentation on Diagnosis & Treatment Protocols, going through the history of the different protocols which have emerged. A discussion ensued about the challenges posed by having so many ME protocols. Margaret identified the Institute of Medicine's criteria as good for screening patients, with the Canadian Consensus Criteria (CCC) better for properly diagnosing. The meeting agreed that something easy-to-use was required for family doctors, who are usually the first port of call for patients. The IACFS/ME's ME/CFS Primer for Clinical Practitioners (2014 revision) was also recommended at the meeting, as an updated version of the CCC.
Diagnostic criteria for FM have their own issues. Margaret outlined the history of FM protocols, which began by including trigger points for diagnosis. In 2003 other symptoms were added. But the 2010 criteria dropped trigger points altogether, as have all subsequent criteria. Unlike ME, FM was taken on by a specialty - rheumatologists - but this is changing. Dr. Arseneau told the meeting that he had recently presented to a group of rheumatologists, and many had said they did not believe FM was a rheumatological condition.
Margaret raised the concern that patients diagnosed with FM were not being screened for ME, despite the fact that many patients have both conditions. The result is that many patients are not identified as having post exertional malaise (PEM), and are prescribed exercise for their FM, which is harmful for their ME.
The meeting then broke into four groups to brainstorm Care Pathways in an ideal world. The most common themes included campaigns to address stigma, doctor education, care for severely ill patients, agreement on diagnostic and treatment guidelines for the whole country. There was a discussion as to whether a center for excellence model was better than a model run by specialists in the community. There seemed to be agreement that a synthesis of both models is needed.
Dr. Copes, who was scheduled to fly home after his presentation, stayed for the whole meeting. He and his team certainly have an abundance of patient feedback to include in their final report.
And the rest of us have a lot of ideas and tools to use for advocacy with our own provincial governments. Here in BC the Society is working on a paper on Unmet Needs to take to the Minister of Health and other provincial decision makers, and it looks like we've found some strong partners at this meeting for our campaign. We'll keep you posted.