“It’s kind of like in Harry Potter, when the dementors come and they suck away all of your energy,” says Kathleen Dennis, a former Toronto health-care worker living with a condition called myalgic encephalomyelitis, or ME/CFS.
ME/CFS is a misunderstood complex multi-system chronic illness usually triggered by a viral or bacterial infection. It’s estimated to affect more than 600,000 Canadians, making it more common than breast cancer, Parkinson’s disease and multiple sclerosis combined. Though not exclusive to COVID-19, the pandemic has exacerbated the situation as more people become infected, and re-infected.
ME/CFS’s hallmark symptom, post-exertional malaise (PEM), also known as post-exertional symptom exacerbation, can affect people differently, but is generally defined as the worsening of symptoms after even minor physical or mental activity. Symptoms triggered by PEM can start 12 to 48 hours after exertion and leave even mild and moderately ill patients bedridden with debilitating “crashes” that can last for weeks or months at a time.
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Despite its prevalence and life-limiting symptoms, ME/CFS is unlikely to be found in most medical school textbooks or curriculums across the country. Research has been underfunded and for decades the illness has been largely dismissed as psychiatric in nature. Women make up roughly 80 per cent of those with the illness, which experts say has likely contributed to its stigmatization and general dismissal.
For decades, official guidance in Canada has recommended exercise and cognitive behavioural therapy to treat ME/CFS. Researchers have now confirmed what many patients have voiced for decades: exercise actually causes ME/CFS symptoms to worsen, often leading to significant and disabling setbacks. The National Institute for Health and Care Excellence (NICE) in the U.K. only revoked their recommendation for clinical guidance for a treatment known as graduated-exercise therapy in 2021, after years of patient advocacy.
There is currently no known cure for ME/CFS. And with the exception of a handful of specialists scattered throughout the country, little meaningful support for patients outside of online peer-support groups.
But research interest in ME/CFS and other similar illnesses is growing as post-viral conditions have become even more common during the pandemic. Recent reports show that in Canada, 30 to 40 per cent of patients who were not hospitalized from SARS-CoV-2 experience symptoms 12 weeks post-infection. A further 10 to 30 per cent of those infected with SARS-CoV-2 report persistent neurological and other symptoms after six months. A recent study found that 58 per cent of long COVID patients surveyed met the scoring threshold for PEM, meaning more than half of those with long COVID meet the diagnostic criteria for ME/CFS and suggesting that in many instances, these illnesses are likely one in the same.
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