A Red Deer lawyer says the lack of government funding for medical research into a disease that is shattering Canadian lives is shocking.
Brent Handel said myalgic encephalomyelitis/chronic fatigue syndrome, commonly known as ME/CFS, affects an estimated 800,000 in Canada. Severity of symptoms vary, but it’s a complex disease with no treatment.
“I’m familiar with the research because I need that to prove from a medical/legal point of view the legitimacy of my client’s claims. It was very obvious to me that this is a very devastating, real disease and it’s just not being funded,” Handel said.
Symptoms can include extreme exhaustion, joint pain, abdominal issues, cognitive problems, sensitivity to things like light, sound, odours, and foods, and more. The debilitating disease can leave people bed ridden and too weak to feed themselves or even talk.
ME/CFS can be triggered by an infection, surgery, another illness, accident or any other physical or emotional stressor, and seems to have a genetic component.
Handel, a personal injury lawyer, said it’s a disease that he has seen among clients through the years after being triggered by motor vehicle collisions. Often it has been mislabeled as being psychological in origin.
“I deal with these people so I know it’s not psychogenic. I talk to them. They want their lives back. They want to get back to work. They’re not depressed. A lot of them, interestingly, were high performers and they were successful.”
Handel, who has written about ME/CFS research in The Lawyers Weekly, recently received a response from federal Health Minister Jane Philpott about a letter he sent last fall regarding the lack of research funding for ME/CFS spent by the Government of Canada’s health research investment agency, the Canadian Institutes of Health Research (CIHR).
Late last year CIHR announced two $100,000 one-year grants to provide seed money to pursue more comprehensive funding opportunities for ME/CFS research. Funding will be available in April.
Handel said funding has been getting better, but it’s not enough.
“It’s really been years that government could have been funding research and probably would have had some significant answers or significant treatments by now.
“The funding of the research is woefully inadequate so there has to be a huge ramp up in dollars devoted to this disease.”
He said women have a higher risk for the disease and unfortunately they are often written off as having some sort of mental illness, a gender bias that has existed since Freud.
“That’s another thing that is so cruel about this disease. People have this legitimate suffering and nobody believes them. On top of it the government isn’t doing the research so they don’t even have hope that in the future maybe they will figure this out. Hardly anyone is working on it.”
Handel has been following the research of a U.S group Open Medicine Foundation, led by a world-renown geneticist Dr. Ron Davis at Stanford University who has a son with ME/CFS. Open Medicine is fast tracking research to find a cure.
For information on the disease, Handel recommends a TED talk by American Jennifer Brea who has ME/CFS.