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

A dose of COVID-19 vaccine is prepared at a vaccination clinic in Montreal’s Olympic Stadium on Tuesday, Feb. 23, 2021. THE CANADIAN PRESS/Paul Chiasson
39 new cases of COVID-19 in Interior Health region

The total number of cases in the region since the pandemic began is now at 7,334

A rainbow shining on Kelowna General Hospital on May 12, 2020 International Nurses Day. (Steve Wensley - Prime Light Media)
New COVID cases trending down in Interior Health

24 new cases reported Thursday, Feb. 25, death at Kelowna General Hospital

From left: Councillor Lucy Taylor, Councillor Barry Banford, Councillor Bill Haring, Mayor Merlin Blackwell, Councillor Lynne Frizzle, Councillor Lyle Mckenzie and Councillor Shelley Sim. (District of Clearwater photo)
Council to consider raising taxes in 2021

The District of Clearwater council is considering a tax increase this year… Continue reading

A nurse performs a test on a patient at a drive-in COVID-19 clinic in Montreal, on Wednesday, October 21, 2020. (THE CANADIAN PRESS/Paul Chiasson)
30 new COVID-19 cases, five more deaths in Interior Health

This brings the total number of cases to 7,271 since testing began

FILE – A COVID-19 vaccine being prepared. (Olivia Sullivan/Sound Publishing)
B.C. seniors 80 years and older to get COVID vaccine details over next 2 weeks: Henry

Province is expanding vaccine workforce as officials ramp up age-based rollout

A health worker holds a vial of AstraZeneca vaccine to be administered to members of the police at a COVID-19 vaccination center in Mainz, Germany, Thursday, Feb. 25, 2021. The federal state of Rhineland-Palatinate, start with the vaccination of police officers in internal police vaccination centers. (Andreas Arnold/dpa via AP)
B.C. officials to unveil new details of COVID vaccination plan Monday

Seniors and health-care workers who haven’t gotten their shot are next on the list

An investigation is underway after a man was shot and killed by Tofino RCMP in Opitsaht. (Black Press Media file photo)
Man shot and killed by RCMP near Tofino, police watchdog investigating

Investigation underway by Independent Investigations Office of British Columbia.

B.C. Supreme Court in Vancouver on Tuesday December 11, 2018. THE CANADIAN PRESS/Darryl Dyck
B.C.’s compromise on in-person worship at three churches called ‘absolutely unacceptable’

Would allow outdoor services of 25 or less by Langley, Abbotsford and Chilliwack churches

Baldy Mountain Resort was shut down on Saturday after a fatal workplace accident. (Baldy Mountain picture)
Jasmine and Gwen Donaldson are part of the CAT team working to reduce stigma for marginalized groups in Campbell River. Photo by Marc Kitteringham, Campbell River Mirror
Jasmine’s story: Stigma can be the hardest hurdle for those overcoming addiction

Recovering B.C. addict says welcome, connection and community key for rebuilding after drug habit

A Vancouver restaurant owner was found guilty of violating B.C.’s Human Rights Code by discriminating against customers on the basis of their race. (Pixabay)
Vancouver restaurant owner ordered to pay $4,000 to customers after racist remark

Referring to patrons as ‘you Arabs’ constitutes discrimination under B.C.’s Human Rights Code, ruling deems

Nanaimo children’s author and illustrator Lindsay Ford’s latest book is ‘Science Girl.’ (Photo courtesy Lindsay Ford)
B.C. children’s writer encourages girls to pursue the sciences in new book

Lindsay Ford is holding a virtual launch for latest book, ‘Science Girl’

Pig races at the 145th annual Chilliwack Fair on Aug. 12, 2017. Monday, March 1, 2021 is Pig Day. (Jenna Hauck/ Chilliwack Progress file)
Unofficial holidays: Here’s what people are celebrating for the week of Feb. 28 to March 6

Pig Day, Canadian Bacon Day and Grammar Day are all coming up this week

Most Read