Myalgic Encephalomyelitis is my official diagnosis. In Canada it is against the law to even try to double-diagnose this illness. I'm hoping that this nationwide collaborative research effort is another indication that the end is in sight in terms of what's been happening to me, and too many others, despite already existing facts. Willful ignorance is reaching epidemic levels on all fronts.

Sonar

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Dr. Alain Moreau heads research network with federal grant money

Dr. Alain Moreau says more research is needed to better understand and treat Myalgic encephalomyelitis — a disease that brings lives to a halt, destroys careers and stifles dreams. (Isaac Olson/CBC)

Christiane Garcia's life came to a screeching halt more than three decades ago and hasn't been the same since.

"My life changed completely," she said, recalling the moment myalgic encephalomyelitis — previously known as chronic fatigue syndrome — began interrupting her daily routine. It started as a terrible cold and turned into a career-ending disease.

"When I first came down with it, I slept for four months."

So far the only treatment Garcia, 68, has received targets symptoms rather than the disease itself — offering band-aid solutions to a chronic condition that affects about 72,000 Quebecers, 580,000 Canadians and millions around the globe.

Despite the high number of people affected, the disease has been largely ignored by researchers, experts say.

"When doctors can't find a solution to something, they tend to say it doesn't exist," Garcia, who lives in Saint-Lazare, Que., said on CBC Montreal's Daybreak.

"That's the big problem this illness."

Finally, help may be on the way.

Dr. Alain Moreau, a scientific director at the Saint-Justine Research Centre in Montreal, is building a collaborative research network that will extend from coast to coast.

The network is being launched with the help of a $1.4-million grant from the Canadian Institutes of Health Research (CIHR).

In an announcement Thursday, the CIHR describes myalgic encephalomyelitis (ME) as a poorly understood, multi-system disease that is debilitating and can strike individuals of all backgrounds and at any age.

"With this investment, we will advance research into ME, work toward developing testing and treatment options, better medical education and, ultimately, better help for patients," Health Minister Ginette Petitpas Taylor said in a statement.

While the grant will get the wheels turning on building the network, Moreau said even more funding will be needed to better understand the disease and find solutions.

"This $1.4 million is just the beginning of something," he said.

"We know we need much more money, for sure, but yesterday's announcement was a big step for all of us."

Thousands struggle with the disease

More than a quarter of Quebec patients can't even make it into clinics for testing, as it can leave them bedridden around the clock, Moreau said.

Instead, researchers and medical professionals need to visit them in their homes. The disease affects cognitive function and can prevent people from doing even the most basic tasks.

"Taking a shower could create a big consequence for the patients and they may crawl into bed for the next 24 hours," he told Daybreak.

"Even though we know about this disease for the last five decades, research has been impaired by the lack of funding. But more importantly, the lack of trust."

Too often, he said, patients were told it was a psychological condition rather than a disease that creates a wide array of symptoms. The original name, chronic fatigue syndrome, only furthered that bias, he said.

But now more is known about ME.

The disease often starts with a viral infection, but exposure to certain metals, mould or arsenic can also trigger the condition, he said.

Still, more research is needed to better understand the causes and find treatments.

"We cannot afford to continue in the classic model where scientists are competing against each other," said Moreau.

The network of researchers will grow over time, he said. The hope is to offer more precise treatments to patients based on their symptoms in as little as two years while, at the same time, improving testing methods.

"It's a kind of triangle. We need to work with physicians, researchers and patients altogether," he said.

"This is what the network will do. It will bring people together to work together to make a difference."
https://www.cbc.ca/news/canada/montreal/myalgic-encephalomyelitis-canada-icancme-1.5257415