Unrest director documents debilitating life with chronic fatigue syndrome

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Jennifer Brea was in the prime of her life — working on her PhD at a prestigious university, newly married and living an active lifestyle when it all changed.  After contracting an infection, she never quite recovered.

"It was a really scary and isolating experience to have my body fall apart and to not have anyone be able to explain to me what was happening to or what I can expect ... I went to doctor after doctor and was often told I was stressed or depressed and it took me quite some time to get a diagnosis," she tells The Current's guest host Laura Lynch recalling that time.

The final diagnosis — she had myalgic encephalomyelitis which often gets called ME or chronic fatigue syndrome (CFS). It's a disease that afflicts 17 million people around the world. And 80 per cent of those who contract the disease find it is triggered by an acute infection.

She describes what it feels like to have ME as a broken battery, "mine only charges to about 40 per cent."

"I can look and sound completely normal as long as I stay within those boundaries but if I cross them, and I don't know I have crossed them until I have, then I have a cascade of symptoms.  Inflammation, sometimes pain, muscle weakness, sometimes I will just collapse on the floor in the middle of the hallway and I won't be able to lift my head," Brea explains.

 As she struggled to function with the debilitating symptoms, and finding the right help, she documented her life and the progress of her disease from the confines of her bed. The film, Unrest gets its Canadian premier at the Hotdocs festival in Toronto.

Until now research into the disease has yet to have any breakthrough because it is under-funded. But Brea is at the forefront of advocating for more funding for medical research into her condition and is helping to organize her third international day to demonstrate for ME in May.

More than 800,000 Canadians suffer from ME and/or Fibromyalgia. Earlier in April, the National ME/FM Action Network which represents those who suffer from this illness wrote to Prime Minister Just Trudeau urging him to dedicate more resources towards research and monitoring of this disease in Canada.  You can read the letter here. So far they have yet to receive a response from the Prime Minister's office.

Listen to the full segment at the top of this web post.

This segment was produced by The Current's Sujata Berry.