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.

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.

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.