A new survey suggests chronic fatigue syndrome may be far more prevalent in Canada than previously thought, and more widespread than many more well-known conditions.
The suggestion is based on a Statistics Canada survey in which respondents were asked whether their doctor had diagnosed them with chronic fatigue or its more recently introduced name, myalgic encephalomyelitis (ME). The survey shows some 560,000 Canadians report that they have the disease -- a 36.7 per cent increase over previous results from 2014. The number also suggests the disease may be more common than breast cancer, Parkinson's disease and multiple sclerosis combined.
Advocates say the results are a call to action for federal and provincial governments, whom they say need to step up their funding for chronic fatigue research.
"We try to tell the government how important it is to get research money," Lydia Neilson, founder of the National ME/FM Action Network, told CTV News. "We are being accepted more and more."
Neilson also hailed the survey results as an indicator that more doctors are believing patients and diagnosing them with the disease, which causes sufferers to experience profound exhaustion, loss of concentration, muscle pain and unrestful sleep.
"It is even worse than we thought," she said.
Some who suffer from ME require round-the-clock care, and in severe cases, feeding tubes are required to keep them alive.
Calgary-based psychiatrist Eleanor Stein, who specializes in treating patients with chronic fatigue, says the condition can be debilitating for many, and that psychological treatment is often not enough.
"What my patients need most urgently is good medical care," she said. "These people are suffering and they have nowhere else to go."
Stein expressed hope that the survey results will prompt more medical schools to include the condition in their curricula.
She says many of her patients struggle with basic daily chores such as making a trip to the grocery store, and are in need of real medical care and assistance.
"I get phone calls and emails in my office every day from people in despair, because they don't know how to survive," she said. "They can't do things for themselves because of the seriousness of their condition."
Scott Simpson, who has been diagnosed with ME, said at his worst he's been completely housebound because of the disease.
"I couldn't walk maybe more than 10 metres," he said. "I would feel more sick."
Simpson says hopes Minister of Health Jane Philpott will respond to this latest survey by pumping more funding into chronic fatigue research.
"I think the numbers show it's a tipping point, but the big question is, is Health Minister Philpott going to act on it?" he said.
Philpott's office acknowledged the survey results in a statement, saying that the government backs exploring the disease further. "Through the Canadian Institutes of Health Research, we are supporting promising research to better our understanding of (myalgic encephalomyelitis/chronic fatigue) which will ultimately help to improve the health and well-being of Canadians," Philpott's press secretary, Andrew MacKendrick, said in the statement.
The CIHR has issued a $100,000 grant to a University of Alberta researchers to investigate one of the potential root causes of the issue. The organization is also preparing to launch a competition to award at least $70,000 in grants to researchers in the area of ME.
Advocates say they're glad the government is investing in ME, but they want to see more money put toward a disease that is still difficult to trace in the blood of those who suffer from it.
"Now it's our turn for chronic fatigue syndrome," Neilson said.
With files from CTV's medical specialist Avis Favaro and producer Elizabeth St. Philip
