I have just returned from Montreal where I attended the first ever National Conference on ME/CFS . I always leave ME/CFS meetings feeling less alone. I met physicians new to the field who attended the meeting to learn more and researchers new to the field who aren’t put off by the stigma and lack of research funding. I talked to several patient advocates: Diane Ching from the ME Society of Edmonton, Elizabeth Sanchez and Sherri Todd from BC, Margaret Parlor, Lydia Neilson & co. from the National ME/FM Action Network, Cort Johnson from Health Rising, Scott Simpson from Missing Millions Canada, Alison Rae of Action CIND and more. I’m sure many of these will write more detailed accounts of the meeting.
On Thursday May 3rd experienced clinicians presented a course for health care professionals. I have posted the powerpoint presentation from my talk on the interface between ME/CFS and psychiatry on my “Publications” page. Go to the Publication tab and scroll about half way down to “Invited Addresses”. It is second from the top. In it I discuss the prevalence of psychiatric disorders in ME/CFS , how to differentiate ME/CFS from psychiatric disorders, how to manage emotional symptoms in ME/CFS and lastly the issues of suicide and Medical Assistance in Dying in people with ME/CFS.
While this educational event occurred in one auditorium, the ME/FM Action Network hosted a patient forum to gain consensus on unmet needs of those suffering with ME/CFS. Dr. Ray Copes the chair of the Ontario Task Force was in attendance. The Task Force has been formed to advise the Government of Ontario on the creation of a center of excellence to treat patients with ME/CFS, FM and MCS, to serve as a research hub and a source of education of practitioners in the province. Task force staff were making copious notes and hopefully the views of the patient advocates will be be reflected in the plan.
On Friday May 4th, researchers from all over the world (Canada, US, Germany, UK, Australia & Sweden) shared their findings. Key attendees included Ron Davis from Stanford, Cindy Bateman from the Horne Bateman Center, Nancy Klimas and Alison Bested from Nova South Eastern University. The BC Chronic Complex Disease Clinic was well represented. Linda Tannenbaum from the Open Medicine Foundation and Vikky Holets Whittemore from NIH both spoke. I overheard many attendees discussing the high quality of the research, the collaborative spirit and their hopefulness for the field. There is a sense we may nearing the tipping point of societal acceptance and research quality allowing real gains to occur.
Concurrently, a patient education day was taking place in another room. I presented a short talk on Neuroplasticity and whether it may have therapeutic potential in ME/CFS. This power point has been posted on my “Publications” page. Go to the Publication tab and scroll down to “Invited Addresses”. It is at the top. For those who are interested, I hope to present a more detailed public talk on Neuroplasticity later this summer to share what I have been learning over the past 4 years of study and practice.
Judy-Anne Wilson, Alison Rae and I presented on the Alberta Healthy Living Program ME/CFS Information Session. Apart from the video not working, it went well. We hope to be able to expand the course and will be meeting over the next months to determine the most efficient and effective way to do this. All ideas and partners are welcome. Our matching T-shirts (designed by Judy-Anne for the Session facilitators) made a statement.
The patient day webcast was recorded with the intention to make it available on line. I was told this may take several months.
On Saturday May 5th, researchers, clinicians and patient advocates met to brainstorm forming international research collaborations to improve health services to better meet the needs of patients with ME/CFS. Host, Dr. Alain Moreau facilitated a collaborative spirit. The brainstorming will continue as Dr. Moreau leads a grant application process to the CIHR (Canadian Institutes for Health Research) for a ME/CFS team grant. It is encouraging that the CIHR has designated funds for ME/CFS and that they sent representatives to the meeting. I talked to the CIHR director who indicated that he was convinced (early on the first day) that ME/CFS was real and deserved more support. The CIHR now has an agreement with the NIH in the US to collaborate on ME/CFS research. This is good news as it increases our capacity. There may also be opportunities to collaborate with a European Consortium representing 20 EU countries called EuroMEne.
All in all, a very enjoyable and encouraging 3 days.