Sick for a year, Ontario COVID long-haulers are fighting for recognition, and help

Sonja Mally has been trying to finish the same book for a year.

Once a voracious reader, the 35-year-old finds herself staring at a paragraph in The Hidden Life of Trees," a bestseller about their need to be in connected forest communities.

She's stuck, unable to turn the page, hoping that one day she will wake up and finally feel better.

I'm a completely different person than I was a year ago," she said over the phone on a sunny day in early March near the anniversary of getting - and staying - sick with COVID-19.

It's a hard pill to swallow, but I'm still praying that there's a way out of this."

For many Canadians, the last 12 months have felt like being stuck inside the movie Groundhog Day," trapped in an endless cycle of tedious lockdowns with nothing to do and nowhere to go.

But for Mally and others who were infected with COVID in that first wave last spring and never got better, it's been a year of sickness. They're left searching for answers, and treatment. Among the most isolated, they fear they'll be left behind, as the world moves on and vaccines mean the end" of COVID is on the horizon for most.

Uncounted and unrecognized, an unknown number of Canadian long-haulers are still struggling with a constellation of symptoms, from shortness of breath, to fatigue, heart palpitations, gastro issues, and trouble concentrating, a condition they refer to as brain fog." Many, like Mally, who was a tattoo artist, are unable to get back to work.

Their plight has been recognized by top U.S. infectious diseases expert Dr. Anthony Fauci, who gave the condition an official name-Post-Acute Sequelae of SARS-CoV-2 (PASC) - in late February. It has also been acknowledged by officials at the World Health Organization, with director general Tedros Adhanom Ghebreyesus telling reporters at an October press conference the virus poses a range of serious long-term effects" to a significant number of people."

Estimates on how many people continue to have symptoms of COVID weeks after infection vary. Some studies put it at 10 per cent.

A network of publicly funded dedicated post-COVID care clinics has been established in the U.K., bringing together experts from different fields to understand impacts on the entire body. They're also popping up in some parts of the U.S. to deal with this growing public health problem.

But in Ontario, long-haulers are still fighting for recognition, and help.

Public health officials can't count" them because they don't follow them past two weeks, said Susie Goulding, who started COVID-19 Long-Haulers Support Group Canada," a Facebook group with more than 12,000 members, after getting sick herself in March. They're way behind the ball."

Goulding, who still struggles with symptoms including brain fog, has started a petition asking for, among other things, dedicated long-haul clinics.

Asked about this, Ministry of Health spokesperson David Jensen said in an email that, working with Ontario Health and Local Health Integration Network, hospitals can choose to fund clinics in their areas through their global budgets, such as clinics for COVID-19 long-haulers."

There are a handful of these across the province, including a rehab program in Toronto that's part of the University Health Network, and a clinic in London, Ont.

While they are a step in the right direction," Goulding says, they're definitely not all-encompassing" and there are huge gaps in care. Especially for those, like herself and Mally, who were never hospitalized.

It's not a co-ordinated effort," says the 53-year-old, who believes the province needs to fund a network of clinics, similar to what the National Health Service has done in the U.K. Those clinics accept not just people with positive tests, but those who reasonably believe they had COVID-19," according to a National Health Service notice on their creation.

Why some people, even those who were healthy and young or middle-aged, never seem to get better while others barely have symptoms, is still a mystery. But there are many looking for answers.

Small strokes, a documented symptom in some COVID patients, may be behind lingering brain issues. Other experts have noticed there seem to be more women impacted than men, and have suggested a hormonal connection.

The U.S. National Institutes of Health launched a cross-country study in late February to identify the causes and hopefully find some way of treating long-haulers.

There are early anecdotal reports that some have found their symptoms improved by the vaccine, but more evidence is needed.

And there are various research projects ongoing in Canada to study the full spectrum of people who have COVID that can connect long-haulers to care, including a national one called CANCOV (the author of this article, who had COVID last spring but is not a long-hauler, is participating in that study).

But as Goulding points out, research depends on grant money, and not everyone is eligible for the limited spots in available studies and hospital clinics.

Many, like her and Mally, did not get Polymerase Chain Reaction (PCR) COVID tests in the first wave because of a testing shortage.

Some studies accept antibody tests that show the likelihood of past infection, but antibodies can fade after a few months, so survivors don't always get a positive result.

This happened to Tracey Thompson, who also contracted COVID in mid-March but is left without a piece of paper" to prove she had it.

She's sitting in her Parkdale apartment, talking on the phone. Later she will make herself a bowl of cereal. If things are going well, she will go for an eight-to-12-minute walk.

And that is like a victory," she says.

A former chef who in the before times was one of those people who didn't even have aspirin in the house," the 52-year-old now hopes to have the energy to make one hot meal a day."

She had to get rid of her Greyhound-Great Dane mix, Gordie, because she couldn't take care of her.

She's a bit better than she was six months ago. There were moments then she thought she wouldn't make it. But she still deals with crushing, indescribable fatigue" and other symptoms like brain fog, and tachycardia (abnormal heart rate).

I've had a sore throat for 12 months so I'm kind of used to that now," she says.

She spends a lot of her time on Facebook support groups and the Slack group created by a U.S.-based Body Politic.

There's a channel just for little daily triumphs, Thompson says.

People will be like, I got to brush my teeth today' and we're all like sending cheer emojis and clapped hands emojis, like good for you, you got this thing done that you wanted to,'" she adds.

She wants to see a place where all of our data can be collected together and assessed under the knowledge that these are symptoms of long COVID," instead of trying to explain the situation to family doctors and being shunted to different specialists, like she has been.

It needs to be understood cohesively instead of as a bunch of separate bizarre symptoms," she adds.

Dr. Zeina Chemali a psychiatrist and neurologist at Massachusetts General Hospital, runs a long-hauler clinic there that tries to do this. The youngest patient is 25.

She focuses on the neuropsychiatric COVID," helping people with issues such as brain fog, while her colleagues work with long-haulers experiencing cardiac and lung impacts.

The clinic offers a multidisciplinary treatment plan," bringing in experts from different fields to look at COVID's impacts on different organs. It includes physical therapy, medication and even cognitive behavioural therapy.

The patient is actually really embraced, I would say, by multiple specialists coming at what they are feeling and experiencing every day," said Chemali in a phone interview from Boston. Some people are now better and even back to work, others still need help.

It's kind of a spectrum, but I don't want to paint a grim picture," she said, adding it's key to listen to patients and believe them when they say they're not themselves.

That's something Mally feels acutely.

She lacks the focus, the stamina, to return to work as a tattoo artist, and has some vision problems in one eye. She can't focus on sketching. She finds rolled up socks in the fridge. She can't remember the names of birds, plants, sometimes friends.

She's finally regained some of her sense of smell and taste (it first came back as everything tasting rotten and a constant burning smell that left her wandering around her house thinking she set something on fire).

But it's still dull.

When I go outside for walks I don't smell anything, even when I get near pine trees and cedar trees," she says.

Like Thompson, she's starting to finally see some small improvements, and is doing better than she was in the first half of the year when she was bed-bound" for five months. She's cautiously optimistic that a recent referral to a specialist in chronic fatigue syndrome might help.

The last year has been spent cloistered inside her house, with only her roommate for company. She teared up when one doctor held her hands to feel her veins, she hadn't been touched in so long.

And as vaccines pave the way for most of society to get back to normal life, she's still hoping she can find a way to rejoin her community.

If the world just moves on instead, she says, there's going to be thousands and thousands of people left in the dark."

May Warren is a Toronto-based breaking news reporter for the Star. Follow her on Twitter: @maywarren11