A report released Thursday by Canada's chief science adviser says she considers COVID-19 the "head" of the pandemic but long COVID its "tail" as the illness inflicts significant harm on individuals, their families and potentially the country's economy.
Dr. Mona Nemer said about 10 to 20 per cent of people with COVID-19 develop long COVID after they have recovered from infection and struggle with a variety of symptoms ranging from high blood pressure and an irregular heartbeat to medically undefined symptoms such as chronic fatigue, brain fog, muscle pain and blurred vision.
"Some patients have not recovered two to three years after the initial infection and it is uncertain whether a proportion may ever fully recover," Nemer said of the condition that lacks consensus on a clear definition and diagnostic criteria, affecting claims for social assistance, disability supports and insurance by those who can no longer work.
"Future socio-economic implications for Canada may be far-reaching and require planning and monitoring," she said about the wider fallout of long COVID, also known as post COVID-19 condition or PCC.
"Analysis of the socio-economic impact of PCC from other countries, including the United Kingdom and the United States, indicates significant impacts on the labour market and the Gross Domestic Product (GDP), in addition to health costs and demands."
Canada could face a "mass disabling event" because it's increasingly clear that COVID-19 raises the risk of several chronic diseases including diabetes and hypertension, Nemer said, adding the number of people afflicted with long COVID may be greater than expected due to the lack of established diagnostic criteria.
Statistics Canada said late last year that about 15 per cent of adults in the country reported some long COVID symptoms at least three months after a positive COVID-19 test, amounting to 1.4 million people.
Nemer made 18 recommendations, including the establishment of a Canada-wide research and clinical care network, along with standardized assessments and clinical guidelines.
"At the clinical level, an important question will be whether PCC/long-COVID is a single disease, or a constellation of conditions requiring distinct treatment and follow up," the report says.
In response, the federal government on Thursday announced $29 million in funding for the development of clinical guidelines and the creation of an online network where researchers and clinicians can share information about long COVID with each other and the public.
The Public Health Agency of Canada said $20 million will go toward the Long COVID Web research network, to be led by Dr. Angela Cheung, a senior physician scientist with Toronto's University Health Network.
The funding, from the Canadian Institutes of Health Research, will allow Cheung to work with about 300 researchers, clinicians and people with long COVID to develop diagnostics, treatments and rehabilitation.
Cheung said researchers across the country will now have a chance to share resources and learn from each other.
"We will conduct webinars to share our results and we will connect with provincial and professional bodies, for example, like the Ontario College of Family Physicians," Cheung said, adding the public will have access to the network.
PHAC said the remaining $9 million will go to McMaster University to develop clinical practice guidelines for those who have recovered from a COVID-19 infection but continue to struggle with symptoms.
Specialized long COVID clinics and rehabilitation services are available in some provinces, including British Columbia, Alberta, Ontario and Quebec.
But their exact number and locations are not readily available and patients endure long wait times for any services they could access, Nemer's report says.
British Columbia has four clinics, after one closed and merged with another last September, a spokesperson with the Health Ministry said in an emailed response.
However, all the clinics will close on April 1 and shift to a virtual clinic, the ministry said, citing a declining number of referrals.
It said that in May 2021, there were 755 referrals to the clinics but that number dropped to 80 in each of October, November and December 2022.
The shift to a single virtual clinic, from one site each in Vancouver, Surrey, Abbotsford and Victoria, will offer "provincewide access to care," the ministry said.
“Currently, more than 1,500 patients across the province are accessing these services and they will continue to get the care they need."
Susie Goulding, who founded an online support group for "long haulers," said a lack of family doctors to make referrals could be partly to blame for why people may not be attending some clinics.
"It's just hasn't been easy to gain access to these clinics," Goulding said from Cambridge, Ont., adding some people have become bedridden and need to be prioritized for care.
"There's a lot of anxiety for that and for not having proper care with your doctor and thinking, 'What's going to happen to me?' There's a lot of emotional duress and strain in losing your job and losing your wages. How are you going to support yourself in this economy?"
As part of the complex and mysterious spectrum of symptoms, Goulding said some people believe they smell dirty diapers, cigarette smoke and rotting garbage when those smells do not exist, sometimes leading to further stigma from health-care providers and even their own families.
"It's public messaging that's missing. There's a complete disconnect with doctors not knowing, three years into it, doctors still not even believing that long COVID exists. There's a problem, and the problem needs to be addressed," she said.
Goulding became infected with COVID-19 in March 2020. A year later, as her list of symptoms grew, she sought help at a brain injury clinic in Burlington, Ont., where for three months she saw a physiotherapist and occupational and speech therapists. She also received acupuncture and counselling.
"I think I have the best chance of recovering," said Goulding, who said she is getting some relief from dizziness, vision problems, a sore ear and brain fog. But other issues, such as swollen vocal cords, an inability to recall simple words and gastrointestinal problems come and go.
In her report, Nemer also noted there are very few studies on the "important area of research" involving children with long COVID.
Pam Milos of Regina said her 11-year-old son, Ian Milos, was infected with COVID-19 in March 2021, along with herself and five other family members.
Her son was initially the least sick of all of them but then developed inexplicable symptoms including muscle pain, chronic fatigue and extreme sensitivity to noise, leaving the family to "walk on eggshells," she said.
It wasn't until last November that a pediatrician diagnosed him with long COVID, she said, adding health-care staff at an emergency department have suggested he's faking his symptoms to get attention.
Milos said her son went from an active child who rode his bike and scooter and played basketball to missing a lot of school. When he does attend, he sometimes comes home and falls asleep at 4 p.m. from extreme fatigue.
He now sees an occupational therapist and counsellor but her extended benefits have long run out so she is paying about $400 a month, said Milos, a teacher, who was forced to take on a second job as a tutor.
"It's taking a toll on me mentally too because I have not been able to help him for 18 months," she said. "I am at the point where I'm thinking, 'Is he ever going to be a regular kid again?' "
This report by The Canadian Press was first published March 9, 2023.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
Camille Bains, The Canadian Press