N.L. needs to be better prepared for rise in long COVID cases, say patients

Thousands of people in Newfoundland and Labrador have been infected with COVID-19 and recovered since the pandemic began but for some — perhaps as many as 10 per cent of those who tested positive — the fight with the virus drags on with no clear end in sight.

Now some of them are calling on Newfoundland and Labrador to improve treatment for what's become known as long COVID or long-haul COVID: a condition in which a cluster of symptoms — often including chronic fatigue — persist long after initial infection with the virus that causes COVID-19.

Stacey Alexander of Corner Brook, who believes she was first infected with the virus two years ago, is one of the people calling for change.

"We're not set up to treat long COVID. There are no clinics. We don't even have basic care," she said. "We should be working with other groups that have experience with this. We can learn what some of the best care options are and how to help people with their symptoms."

Alexander expects there will be many more people with long COVID in the province after the Omicron variant caused coronavirus cases to spike.

"I'm hoping people will start paying more attention to it and we can get some help for people who are suffering and hopefully, eventually, come up with a cure," she said.

N.L. Health Department not tracking long COVID

Alexander said she was disappointed when Health Minister John Haggie said in a Jan. 26 briefing that his department is not tracking cases of long COVID.

"They're just not doing their jobs. We're two years into this pandemic. It's frustrating for those of us who are going through all of this and trying to get information and help," she said.

CBC News asked for an interview with Haggie for clarification, and for an interview about long COVID with Chief Medical Officer of Health Dr. Janice Fitzgerald but the Health Department declined both requests.

Long road to diagnosis

Alexander said she started experiencing gastro-intestinal symptoms — rather than the more common respiratory problems many COVID-19 patients have — in early 2020 but she struggled for months to get a diagnosis and treatment.

She was convinced early on that she'd become infected with the virus that causes COVID-19 but wasn't confirmed until she had an antibody test in February 2021.

It had been months, but Alexander's symptoms persisted, especially after exertion: exhaustion, night sweats, headaches, nosebleeds, neuropathy, thyroiditis and — perhaps the most unexpected of all for a woman in her early 30s — the first signs of menopause.

She says her own doctor,  and specialists in Corner Brook and St. John's, helped treat her symptoms but didn't identify the cause.

Finally a consultation with an Ontario endocrinologist confirmed her suspicion, calling it "classic post-COVID syndrome," said Alexander.

Infected in the Mount Pearl cluster

Amanda Porter's initial experience with COVID-19 was more typical than Alexander's.

She was part of the outbreak that was detected at Mount Pearl Senior High School in February 2021.

She tested positive on Feb. 16 and after a couple of weeks of flu-like symptoms started feeling better but then in early March she got sick again.

"I felt like I got the virus again almost," she said. "I actually felt worse. I couldn't get out of bed. I couldn't eat. My cough was actually worse," said Porter, who works with Eastern Health's diagnostic imaging department.

She had weeks of symptoms: trouble breathing, chest pains, increased heart rate, dizzy spells, light-headedness and something long COVID patients call "brain fog."

"It's like you have cognitive issues. I forget what I'm saying mid-sentence, I stutter. I forget how to spell common words," said Porter. 

It was Porter's family doctor who suggested she might have long COVID, she said. While she says she's received excellent care, she's worried Newfoundland and Labrador will soon be dealing with more long COVID patients than it can handle.

She said the provincial government should establish long COVID clinics: "teams of people like neurologists, virologists, physiotherapists and cardiologists. All these people together in a clinic devising a treatment plan for a specific patient."

Specialist predicts long COVID's prevalence will rise

Simon Décary, an assistant professor of rehabilitation at the University of Sherbrooke, says the evidence suggests 10 per cent of all people who test positive for the virus will have persistent symptoms 12 weeks after infection, meeting the World Health Organization's definition of long COVID.

"It is possible to do a clinical diagnosis but you need training and because of the complexity of clinical diagnosis many patients don't receive care, " said Décary, who's also the scientific director of a COVID research centre in Quebec.

It's too soon to know if Omicron is more likely to lead to long COVID or if vaccines reduce its risk, said Décary, but all provinces must prepare to see more cases of the condition.

"If you live with the virus, it means that you accept that every year there will be new cases of long COVID," he said.

"The problem is that we don't have a safety net, clinically, for these patients. So really it's just about building a safety net for people with the disease."

Long COVID recovery?

Almost two years after her first symptoms, Alexander, a primary school physical education teacher, hasn't returned to work but she's optimistic her long COVID nightmare will end.

"We're in the 21st century and we're capable of working together to come up with a plan. I just hope that the collaboration does occur so we can get there," she said.

Porter also hasn't returned to work but she's optimistic too.

"I'm hopeful because one of the specialists I spoke with had patients who are coming around," she said. "If this lasts another year, we'll do another year of this to, you know, get back to my normal self."

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