Lorraine Graves poses in this undated handout photo. Lorraine Graves barely has the energy to hold a pen some days as “brain fog” leaves her forgetful and sudden worsening vision has her increasing the font size on her computer. Graves, a COVID-19 “long hauler,” is being treated at a clinic in Vancouver for a variety of symptoms after she first became ill in March. THE CANADIAN PRESS/HO — Lorraine Graves

Lorraine Graves poses in this undated handout photo. Lorraine Graves barely has the energy to hold a pen some days as “brain fog” leaves her forgetful and sudden worsening vision has her increasing the font size on her computer. Graves, a COVID-19 “long hauler,” is being treated at a clinic in Vancouver for a variety of symptoms after she first became ill in March. THE CANADIAN PRESS/HO — Lorraine Graves

COVID-19 clinics for ‘long haulers’ aim to treat patients stuck in limbo

Symptoms that are similar to disabling chronic fatigue syndrome may continue for a few weeks or months

Lorraine Graves barely has the energy to hold a pen some days as “brain fog” leaves her forgetful and sudden worsening vision has her increasing the font size on her computer.

Then there’s the ringing in her ears, insomnia and difficulty breathing, not to mention anxiety about her chances of recovering from COVID-19 after 10 months of visiting multiple specialists for tests to rule out damage to her lungs, kidneys, heart and other organs.

“On bad days, I’m so discouraged,” said Graves, a journalist at a community newspaper in Richmond, B.C., though she’s only able to work a few hours a week.

Graves and all three members of her family became infected around the same time last spring, but only she has remained sick with a variety of symptoms that have her living in limbo.

At one point, she had such a hard time breathing that the air in her lungs seemed to be replaced by “tapioca pudding.”

“I remember thinking I should call the notary and make sure our wills are all up-to-date because this is not looking good. The next morning, I just couldn’t do it. I was too sick.”

Researchers around the world are trying to unravel the mystery of so-called long COVID to help patients afflicted with an assortment of debilitating symptoms, though they are typically excluded from statistics related to COVID-19 or considered recovered. Some, like Graves, were diagnosed with COVID-19 by their family doctors based on symptoms, not a positive test, in the early days of the pandemic when testing was not offered widely.

“We didn’t recover. We survived,” said Graves, who was referred to a clinic where “long haulers” are treated and studied in order to better understand the cause of their ongoing illness while others recover within a few days or don’t have any symptoms at all.

Graves said she has so far had a virtual appointment with a general internist at a clinic at St. Paul’s Hospital, which is part of a network of three sites in the Vancouver area and is believed to be the only such provincially funded initiative in Canada.

What she has learned so far from Dr. Jesse Greiner is that patients like her must recognize their physical, cognitive and emotional limits or risk the consequences of “overdoing it,” which could simply mean worrying about the future.

Greiner, who did not speak specifically about Graves’s case, said educating patients to manage their illness is a big part of treatment as symptoms come and go and new ones seem to develop after people exert themselves beyond what their body is capable of handling.

“People will say ‘I went for a long bike ride because I thought I was getting better.’ A day later, they crashed and all the symptoms came back,” he said, adding emotional experiences and anxiety over symptoms are enough to trigger recurrence up to three days after such stress.

“The cognitive one is a big one in that people try to return to work, using their brain to do complex tasks, and that can flare symptoms,” he said, adding patients often feel like they’re in a “never-ending loop” as symptoms persist.

The most tragic cases involve young, athletic patients who once climbed mountains and guided people through the backcountry but now are unable to walk up a flight of stairs, Greiner said.

“Try to figure out which things in your life are causing you to flare your symptoms and try to reduce those. And then gradually, over time, your ability to do things will return. And I have seen that,” he tells patients while also advising them to practise mindfulness and slowly increase their physical activity.

Symptoms that are similar to disabling chronic fatigue syndrome may continue for a few weeks or months and addressing them will take time, similar to those after a concussion, although COVID-19 amounts to whole-body trauma, not just to the brain, Greiner said.

“I do suspect that some people may never recover, but I’m hoping that through the education and bringing awareness to these sorts of typical patterns that the number will be as little as possible,” he said.

The COVID-19 clinics involve teams of specialists including neurologists, cardiologists, rheumatologists, psychiatrists, dermatologists, physiotherapists and nurses, said Greiner.

ALSO READ: Host arrested, attendees fined $17K after alleged party in Vancouver penthouse

Dr. Angela Cheung, an internal medicine specialist and scientist at University Health Network in Toronto, is one of two physicians leading the Canadian COVID-19 Prospective Cohort Study, which is aiming to recruit about 2,000 patients from Ontario, Quebec and British Columbia and perhaps Alberta, Saskatchewan and Manitoba.

Cheung, who works at a post-COVID clinic at Toronto General Hospital, said treatment is based on symptoms and could mean some patients are provided with steroid inhalers to calm inflammation in the airway from prolonged coughing while others may get medication to slow their heart rate.

The study, currently funded by the Canadian Institutes of Health Research, also involves the collection of data on caregivers as well as genetics in an effort to understand why some people in a family don’t recover from the illness.

“This is the million-dollar question,” Cheung said. “Is it the genetic makeup or is it because of how they react in terms of their immune system?”

Based on data from severe acute respiratory syndrome, it’s believed about 10 per cent of COVID-19 patients may remain ill a year after the initial onset of symptoms, she said, adding more research is needed to determine how the suffering of thousands of people across the country could be alleviated.

However, Cheung said a co-ordinated national approach is needed, such as in the United Kingdom, to establish clinics and fund research, though that is unlikely in Canada because health care is under provincial jurisdiction.

Camille Bains, The Canadian Press


Like us on Facebook and follow us on Twitter.

Want to support local journalism during the pandemic? Make a donation here.

Coronavirus

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Asymptomatic testing will now be available for "priority groups" who are most likely to spread the COVID-19 virus to vulnerable or at-risk populations. File photo by THE CANADIAN PRESS
Alberta identifies 1,516 new COVID-19 cases on Sunday

Central zone has 1,849 active cases

A damaged unicorn statue is shown in a field outside of Delia, Alta. in this undated handout photo. It’s not often police can report that a unicorn has been found, but it was the truth Saturday when RCMP said a stolen, stainless-steel statue of the mythical beast had been located in a field not far from where he’d been taken. THE CANADIAN PRESS/HO, RCMP *MANDATORY CREDIT*
Mounties get their unicorn; stolen statue of mythical beast found in Alberta field

Police are still looking for suspects, and have called in their forensics experts to help

There were six additional deaths across Alberta reported over the past 24 hours, bringing the death toll to 1,926 since the beginning of the pandemic. (File photo)
The Longhorn Saloon and Grill has opened its patio for outdoor diners. (Facebook photo)
Town of Ponoka launches new temporary seasonal patio program

The Town of Ponoka has launched a new Temporary Seasonal Patio Program… Continue reading

Deputy Prime Minister and Minister of Finance Chrystia Freeland responds to a question during Question Period in the House of Commons Tuesday December 8, 2020 in Ottawa. The stage is set for arguably the most important federal budget in recent memory, as the Liberal government prepares to unveil its plan for Canada’s post-pandemic recovery even as a third wave of COVID-19 rages across the country. THE CANADIAN PRESS/Adrian Wyld
Election reticence expected to temper political battle over federal budget

Opposition parties have laid out their own demands in the weeks leading up to the budget

Each spring, the Okanagan Fest-of-Ale is held in Penticton. This year, as a result of the COVID-19 pandemic, the festival will not be held. However, beer is still available. How much do you know about this beverage? (pxfuel.com)
QUIZ: How much do you really know about beer?

Put your knowledge to the test with this short quiz

Pall Bearers carrying the coffin of the Duke of Edinburgh, followed by the Prince of Wales, left and Princess Anne, right, into St George’s Chapel for his funeral, at Windsor Castle, in Windsor, England, Saturday April 17, 2021. (Danny Lawson/Pool via AP)
Trudeau announces $200K donation to Duke of Edinburgh award as Prince Philip laid to rest

A tribute to the late prince’s ‘remarkable life and his selfless service,’ the Prime Minister said Saturday

A vial of some of the first 500,000 AstraZeneca COVID-19 vaccine doses that Canada secured. THE CANADIAN PRESS/Carlos Osorio
Canada’s 2nd blood clot confirmed in Alberta after AstraZeneca vaccine

The male patient, who is in his 60s, is said to be recovering

The funeral of Britain’s Prince Philip in Windsor, England, on Saturday, April 17, 2021. Philip died April 9 at the age of 99. (Kirsty Wigglesworth/AP)
PHOTOS: Prince Philip laid to rest Saturday as sombre queen sits alone

The entire royal procession and funeral took place out of public view within the grounds of Windsor Castle

Prime Minister Justin Trudeau looks on as Deputy Prime Minister and Finance Minister Chrystia Freeland responds to a question during a news conference on Parliament Hill in Ottawa, Tuesday, Aug. 18, 2020. THE CANADIAN PRESS/Adrian Wyld
Expectations high as Trudeau Liberals get ready to unveil first pandemic budget

The Liberals will look to thread an economic needle with Monday’s budget

Doses of the Moderna COVID‑19 vaccine in a freezer trailer, to be transported to Canada during the COVID-19 pandemic. THE CANADIAN PRESS/Nathan Denette
Pfizer to increase vaccine deliveries in Canada as Moderna supply slashed

Moderna plans to ship 650,000 doses of its vaccine to Canada by the end of the month, instead of the expected 1.2 million

Most Read