“With glowing hearts we see thee rise”
From the Canadian National Anthem
The tides are indeed rising for chronic fatigue syndrome (ME/CFS). Just three years ago, a grant application to create “an interactive and coherent Canadian network in ME/CFS” was turned down in a horrifying manner. The reviewer stated that there is “no evidence that CFS is a disease,” that it is most likely, instead, “an artifact of medical specialization,” that strikes “hard-driving” confrontational individuals who have a “high anxious” coping style. To top it off, the reviewer also wrongly stated that depression was an established risk factor for developing ME/CFS.
The grant application was denied. It was as if ME/CFS had been thrust back 30 years – and in a land which produced the Canadian Consensus and International Consensus Criteria. That of course, didn’t go over well with Canadian advocates who fought back harder than ever.
Since then, the Canadian government has done an about-face. It’s produced one international conference and made its first long-term commitment to ME/CFS – a $1.4 million, five-year research program. Plus, the Canadian Broadcasting Corporation (CBC) just came out with a stellar article and TV spot on ME/CFS (see below). Things are looking up in Canada.
I hope to find out how Canadian advocates turned that disaster of a review into an opportunity, but one thing is clear – having Alain Moreau on board – the researcher leading the effort – has made a major difference. Moreau and his collaborators put through two grant applications and Moreau chaired the Montreal Conference at the hospital he worked at, CHU Sainte-Justine. When the press wants to know something about ME/CFS, they go to Moreau. That’s pretty notable given that not so long ago Moreau didn’t know anything about ME/CFS.
Given that we want many more Moreaus to pop up, it’s instructive to ask how Moreau got involved. It essentially came from something very basic – people talking to other people about ME/CFS and asking for their help.
First, Christian Godbout, a Montreal patient, enrolled an influential doctor in our cause. That doctor asked the best researcher he knew of – Alain Moreau – to take a deeper look, and when Moreau did, he, as many researchers do, became intrigued. (For the most part, all you really need to get many researchers interested in this disease is to have them take a deeper look. Then the disease enrolls them.)
ME/CFS really enrolled Moreau and here we are a couple of years later with Moreau leading a greatly expanded Canadian effort on ME/CFS.
The point is that you never know what effect your words or actions are going to have.
While the five-year $1.4 million Canadian effort funded by the Canadian Institutes of Health Research (CIHR) isn’t a huge amount of money, it represents a tremendous step forward for a country which is emerging from a pretty long and dark winter.
For years, Health Canada – the voice of Canadian Health Care – recommended psychotherapy and exercise for ME/CFS. (That webpage was ditched in February of this year.) The fact that the reviewer mentioned earlier felt secure enough to publicly spew his or her antediluvian opinions meant that he/she was probably not alone.
Common sense seems to be prevailing, though. Earlier this year, the Canadian Minster of Health, Ginette Petitpas Taylor, embraced ME/CFS research stating:
“Our government is proud to support the work of researchers pursuing improved quality of life for people living with myalgic encephalomyelitis, their families and caregivers. With this investment, we will advance research into ME, work towards developing testing and treatment options, better medical education, and, ultimately, better help for patients.” The Honourable Ginette Petitpas Taylor, Minister of Health
As Moreau noted, it’s best to think of the $1.4 million as the beginning of something rather than the end. It’s a start – the first beachhead ME/CFS has established in the Canadian research funding game. With the CIHR devoting almost $500 million a year to medical research funding it certainly has room to grow. Who knows what time will bring?
“This $1.4 million is just the beginning of something. We know we need much more money, for sure, but yesterday’s announcement was a big step for all of us.” Moreau
The effort in Canada is being substantially helped by another important partner – the media. The Canadian Broadcasting Corporation’s Aug, 2019 article on the new research effort got quickly to the gist of the matter by contrasting the disease’s prevalence with how little funding it is getting.
The short but powerful video and the longer article that went online yesterday went further. The video featured a teacher whose years of crushing fatigue and near paralysis were dismissed by doctors as depression. It clearly stated that psychotherapy and exercise were not effective, and noted the efforts by Ron Davis to find a diagnostic biomarker. It’s a very welcome video.
The article, “After long-awaited recognition, serious research begins on chronic fatigue syndrome“, was even better. It noted that, with 580,000 Canadians suffering from the disease, the Canadian government had lagged behind in funding and featured Ron Davis and his ill son, Whitney.
None of this has taken place in a vacuum. The CBC cited the Institute of Medicine report that paved the way for the NIH-funded ME/CFS research centers. The NIH’s reinvigoration of ME/CFS research and the existence of the new centers surely bolstered the grant for the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network, or ICanCME – which will reportedly be collaborating with the NIH centers.
It’s all part of the expanding “arc of progress” for ME/CFS that Carol Head talked about ME/CFS has has many unmet needs – so many as to seem insurmountable at times, but then all works of great endeavor seem impossible at times. Better to focus, as Carol Head suggested, on the arc of progress – which with the new funding and excellent reception that ME/CFS is being given in the Canadian media, is now upwards.