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.


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

Just Posted

Main door at Cranes Crossing, Prince Rupert’s homeless shelter, on March 5. Northern Health issued a public notice of potential exposure occurring at the shelter between Feb. 22 and 24. (Photo: K-J Millar/The Northern View)
COVID-19 Public Exposure Notice issued for Prince Rupert’s homeless shelter

Northern Health said possible exposure between Feb. 22 and 24

Air Canada cancelled flights to Prince Regional Airport on Jan. 23, 2021 due to loss of ridership during COVID-19. An Air Canada Rouge takes off from Montreal in March 20, 2020. (THE CANADIAN PRESS/Graham Hughes)
BC Liberals call for immediate action and support for B.C. airports

Prince Rupert Regional Airport and others across the province struggle with COVID-19 effects

Paul Williams rector of St. Andrews Cathedral in Prince Rupert sits in front of the 95-year-old pipe organ on March 5. The church has put out a community call for volunteers to play the instrument to keep it fresh and operational. (Photo: K-J Millar/The Northern View)
St. Andrews Cathedral pipe organ needs players to make it sing

Prince Rupert volunteers who want to practice their playing skills are welcome

Alex Campbell, Velna Nelson, Beatrice Robinson and Ellen Mason take part in the Sm’algyax Word App and website launched by School District 52 on March 1. (Photo: Supplied by Roberta Edzera)
Prince Rupert SD 52 launches new Sm’algyax word app and website

Database for new language resources stems back more than 30 years

The welcome sign is the first thing new employees moving to Prince Rupert will see as they drive the road into the city. The ‘Prince Rupert - Make it Home’ employment campaign to draw people to the region was launched on Feb. 16. (Photo: K-J Millar/The Northern View)
Stakeholders respond to employee recruitment campaign housing ‘disconnect’

‘Prince Rupert -Make it Home’ is 5-year recruitment and retention campaign

Provincial health officer Dr. Bonnie Henry updates B.C. on the COVID-19 situation. (B.C. government)
Dr. Bonnie Henry predicts a ‘post-pandemic world’ for B.C. this summer

‘Extending this second dose provides very high real-world protection to more people, sooner’

Malawian police guard AstraZeneca COVID-19 vaccines after the shipment arrived in Lilongwe, Malawi, Friday March 5, 2021. Canada is expecting its first shipments of AstraZeneca vaccine next week. (Associated Press/Thoko Chikondi)
B.C.’s daily COVID-19 cases climb to 634 Friday, four more deaths

Currently 255 people in hospital, 66 in intensive care

A crashed helicopter is seen near Mt. Gardner on Bowen Island on Friday March 5, 2021. Two people were taken to hospital in serious but stable condition after the crash. (Irene Paulus/contributed)
2 people in serious condition after helicopter goes down on Bowen Island

Unclear how many passengers aboard and unclear where the helicopter was going

Surrey Pretrial in Newton. (Photo: Tom Zytaruk)
B.C. transgender inmate to get human rights hearing after being held in mostly male jail

B.C. Human Rights Tribunal member Amber Prince on March 3 dismissed the pretrial’s application to have Makayla Sandve’s complaint dismissed

Supporters rally outside court as Pastor James Coates of GraceLife Church is in court to appeal bail conditions, after he was arrested for holding day services in violation of COVID-19 rules, in Edmonton, Alta., on Thursday March 4, 2021. THE CANADIAN PRESS/Jason Franson
‘Law remains valid:’ Pastor accused of violating health orders to remain in jail

The Justice Centre for Constitutional Freedoms is representing the pastor

The Netflix logo on an iPhone. B.C. delayed imposing sales tax on digital services and sweetened carbonated beverages as part of its response to COVID-19. Those taxes take effect April 1, 2021. THE CANADIAN PRESS/AP, Matt Rourke
B.C. applies 7% sales tax on streaming, vaping, sweet drinks April 1

Measures from 2020 budget were delayed due to COVID-19

Chief Don Tom of the Tsartlip First Nation was outraged after Green MLA Adam Olsen revealed on social media that the community had been experiencing a COVID-19 outbreak – a fact the First Nation had chosen to keep private to avoid racist backlash as experienced by the Cowichan Tribes when an outbreak was declared there in January. (Black Press Media file photo)
B.C. First Nation ‘outraged’ after Green MLA reveals COVID-19 outbreak

Tsartlip First Nation chief shares concerns about racist backlash, MLA apologizes

A lawyer wears a face mask and gloves to curb the spread of COVID-19 while waiting to enter B.C. Supreme Court, in Vancouver, B.C., Friday, Aug. 28, 2020. British Columbia’s highest court has sided with the land owner in a dispute over public access to public land. THE CANADIAN PRESS/Darryl Dyck
B.C. high court finds in favour of large landowner in fight over access to pair of lakes

The Nicola Valley Fish and Game Club launched legal action after the cattle company blocked road and trail access

Prime Minister Justin Trudeau holds a press conference in Ottawa Friday, March 5, 2021. THE CANADIAN PRESS/Sean Kilpatrick
Trudeau holds firm on premiers’ health-care funding demands, COVID-19 aid comes first

Premiers argue that the current amount doesn’t keep pace with yearly cost increases of about five per cent

Most Read