'Living in limbo': Canadians with long-lasting symptoms call for COVID-19 research, support

For Elisa Harvey-LaPlante, the symptoms of her months-long illness came on quickly.

It was back in February when she first got chills and a dry cough. Then more symptoms kept rolling in for the 52-year-old Toronto resident, including headaches, dry eyes, thrush, weeks of chest pain and, at times, a feeling that she couldn't breathe.

"I think part of that was all of a sudden realizing, 'I think I have COVID,'" she said.

Harvey-LaPlante is now recounting those weeks of anxiety in the backyard of her east-end home, where she's spent much of the past four months recovering with little medical support. Some of her symptoms haven't completely gone away, and she still faces lingering fatigue that ebbs and flows.

"It was a very frightening couple of months," she said. "And to this day, I have not had a doctor check me out."

Harvey-LaPlante is now one of more than 50 Canadians with long-lasting symptoms of possible or confirmed COVID-19, who've all signed an open letter to the country's chief medical officers of health, including Ontario's own Dr. David Williams.

The group's plea, amid rising awareness of lengthy recovery times for some people infected with the novel coronavirus virus, was sent on Tuesday.

It calls for officials to research long-lasting cases of COVID-19, ensure medical support is provided, and implement standards for diagnosing the illness for patients who don't have positive test results.

"Without any medical answers or insight into our condition, we are left living in limbo, unable to access treatment and therapies, and filled with uncertainty about our futures," the letter reads.

'Doctors don't believe us'

In the early days of her illness, Harvey-LaPlante said a physician told her through a teleconference appointment that she likely had COVID-19 based on her symptoms. But one supposed telltale sign she never had was a fever — so at that time, she didn't meet the criteria to get tested.

Months later, in May, Harvey-LaPlante finally did get a COVID-19 test once the criteria were broadened, but by that point it came back negative.

"Doctors don't believe us, family members or employers don't believe us," said Ottawa resident Chandra Pasma, who had a similar experience with a strange, long-lasting set of symptoms this year, and no positive test results to explain it.

"Often we're the only person doctors are seeing with this condition, so they don't have the research to go on yet because it's so new."

Pasma, who helped organize the open letter, believes her whole family wound up infected with COVID-19, and previously shared her experience with CBC News.

Her group's letter stresses how health guidance in Canada has directed many people to manage their symptoms at home to ease the burden on the medical system, which wound up having unintended consequences on people with milder cases.

"As a result, many Canadians have not contacted their doctors despite experiencing ongoing symptoms," the open letter reads.

"Others have tried to seek medical care and have been dismissed, either for not having a positive test or because they are told COVID-19 does not last beyond two weeks. It is therefore impossible to say how many Canadians are experiencing a lingering COVID-19 illness or longer-term, possibly permanent, disability as a result of the illness."

Dr. Iris Gorfinkel, a Toronto family physician and researcher, said the medical community needs to gain an accurate sense of how many people are experiencing prolonged symptoms to understand the full spectrum of the illness.

She also stressed it's crucial for physicians to rule out other possible illnesses before settling on a diagnosis, despite many patients' focus on COVID-19.

"We have no confirmatory test for the long-haulers, making it more difficult to know, is that necessarily what we're dealing with?" Gorfinkel said. "To be safe, all patients have to have other diagnoses excluded."

But diagnosing COVID-19 remains challenging, since much remains unclear about how it affects the body.

Ontario's chief medical officer reviewing letter

As the pandemic progresses, the medical community is growing increasingly aware of multi-organ impacts and symptoms beyond the respiratory system — with various theories emerging that it's largely an illness of the blood vessels, or one that can prompt a potentially-dangerous overreaction from the immune system.

As for how long symptoms can last, many medical professionals now acknowledge some people may be ill for long stretches of time.

The COVID-19 symptom tracking app developed at King's College London, which has been downloaded by roughly four million people globally, has reported that 10 per cent of people had symptoms at 25 days and five per cent were still ill one month later, noted several authors of a recent column in the British Medical Journal.

"We hear anecdotal reports of people who have persistent fatigue, shortness of breath," said Dr. Jay Butler, the deputy director of infectious diseases at the U.S. Centers for Disease Control, in a media briefing on June 25.

"So, how long that will last is hard to say."

Research unpacking the full nature of how the virus operates, and why it may cause long-lasting health issues, will take time.

In the meantime, there's no word if Ontario's officials will take new action on the recommendations from patients who say their wellbeing has suffered amid months of fear and sickness.

"Ontario, along with the other Chief Medical Officer's of Health across Canada, has received the letter and is reviewing it in detail," a spokesperson for the health ministry said in a statement.

Harvey-LaPlante said until there's more research and support, the focus will remain only on the most dire cases where people wind up hospitalized or dying, but not on the untold number of Canadians who are struggling with symptoms behind closed doors.

"A mild case isn't always mild," she said.