A network of Canadian scientists is trying to make up for lost time in the search for a standard diagnostic test and treatment for a debilitating, poorly understood disease that had long been dismissed as a psychological illness.

Myalgic encephalomyelitis ― commonly known as chronic fatigue syndrome (ME/CFS) ― is a multi-system disease that affects approximately 580,000 Canadians of all ages, according to the Canadian Institutes of Health Research (CIHR).

"ME is probably the last medical enigma of the 21st century," said Alain Moreau, a Montreal-based scientist who heads the newly created Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network, or ICanCME. (It's pronounced "I can see M.E.")

ME/CFS affects more people than Parkinson's disease, breast cancer or multiple sclerosis combined in Canada, according to Moreau, who is also a professor of medicine at the Université de Montréal.

Yet the federal government only started significantly funding ME/CFS research in August 2019, when it announced a $1.4-million grant to Moreau's network.

ME is probably the last medical enigma of the 21st century. - Alain Moreau

That's after its scientific panel had previously rejected a grant application in 2016, Moreau said, suggesting it was not a disease.

ME/CFS was formally recognized as a disease by the World Health Organization and the U.S. Centers for Disease Control and Prevention decades earlier.

"This disease is now recognized by very solid science," said Moreau, pointing to published research by U.S. scientists that identified distinct biomarkers in blood samples of patients diagnosed with ME/CFS.

But those findings haven't yet resulted in a simple test that can be administered in a standard medical laboratory setting.

ICanCME includes scientists and physicians across Canada, as well as 200 ME/CFS patients in Quebec, who make up the largest cohort of people regularly tested as part of the research.

No known cause

Part of the $1.4-million grant funds Moreau's own research, which focuses on subtle changes at the cellular level to patients after they undergo a mild stress test that involves wearing an arm cuff that administers gentle vibrations.

Another network team at the University of Alberta's Li Ka Shing Institute of Virology is focused on studying cytokine biomarkers for ME/CFS. Cytokines refer to a category of proteins involved in cell behaviour.

The most common symptoms of ME/CFS are extreme fatigue, vision changes, sensitivity to sound and light, or sudden unexplained exhaustion. The symptoms can range in severity, Moreau said, and in some cases, patients have spontaneously recovered.

"Eighty-five per cent of the patients that we are testing are unique individuals that are so severely affected they are housebound, which means that we need to send a clinical research nurse to do the testing," he said.

While the causes of ME/CFS are not known, researchers have observed that approximately half of diagnosed patients had a viral or bacterial infection prior to onset of their symptoms.

"Probably there are some genetic predispositions that will increase your susceptibility. But at the end of the day, why we can't recover from those infections while others will … this is still part of the mystery of ME," said Moreau.

'I could barely get my arms up to drive'

When Marie-Josée Ménard, 48, began experiencing constant dizziness and a lack of concentration in 2010, the Montreal teacher said she believed it was burnout.

"I couldn't get up. I was either always sleeping or not sleeping at all. I was hurting everywhere. I didn't have any voice. I didn't have any energy. There were days I could barely get my arms up to drive," she said.

Ménard's doctor diagnosed her with severe depression and prescribed antidepressants. But after an unrelated surgical procedure, the symptoms worsened to the point where the mother of two couldn't get out of bed.

Yet, she said, "some days I can be very much like normal."

Despite being diagnosed with ME and participating in research, Ménard said she still encounters a prevailing attitude that the disease isn't real.

"It was in my head," she recalls being told. "People around me were just telling me, I should just get on with it: 'You're just tired, everybody gets tired and it will go away.'"

Disputed treatment

For decades, ME/CFS patients were prescribed psychotherapy and exercise to help manage the illness.

But that strategy was disputed by an expert panel report published in 2015 by the U.S. Institute of Medicine, which found increasing physical activity had no benefit and actually caused more harm to ME/CFS patients.

A web page about ME/CFS maintained by Health Canada which referred to "psychotherapy" and "exercise" as treatment options was archived in February 2019 .

The experimental drug Ampligen was developed to treat ME/CFS, but since it was not approved for sale by the U.S. Food and Drug Administration over questions around its effectiveness, it's not widely distributed.

ME patients are sometimes prescribed other medications to treat individual symptoms.

Geneticist Ron Davis and his wife, Janet Dafoe, care for their son, Whitney Dafoe, a 35-year-old photographer who has ME/CFS and is bedridden. (Ron Davis)

Experts say one of the challenges of diagnosing, treating or researching ME/CFS is there is no single medical specialty dedicated to the illness.

"We know the brain is involved. We know the immune system is involved. We know the gut is involved. We know the endocrine system is involved," said Ron Davis, a genetics professor at Stanford University. "So that makes it a very systemic disease, which actually makes it a very bad disease."

Davis, who is world-renowned for pioneering technology used in the Human Genome Project, now leads the Open Medicine Foundation , an international consortium of scientists focused on ME/CFS research. The foundation also co-operates with Canadian researchers.

Davis has witnessed the ravages of the disease firsthand, as his 35 year-old son, Whitney, is completely bedridden, can't speak and requires a feeding tube as a result of ME/CFS.

"It's a horrible disease," he said. "It's not like they're going to be sick for a few weeks and then die. They're going to have this over a normal lifespan. So it's years — if not decades — of suffering."

The Open Medicine Foundation's first project is to find a biomarker that could be used to test for ME/CFS — something that Davis says would provide the disease with more acceptance in the medical field.

"I've seen so many doctors say, 'Well, if you don't have a diagnostic molecular test, then I don't believe the disease exists,'" said Davis.

Davis and his colleagues have already piloted a test that successfully identified the blood samples of a small group of patients with ME/CFS.

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