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Hope and understanding slowly creep into Canada害羞草研究所檚 long COVID battle

Researchers still have a lot of work to do, but say progress slowly being made
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Sonja Mally misses her old life after being debilitated by long COVID for almost four years. Mally poses for a portrait in Toronto, Friday, Dec. 8, 2023. THE CANADIAN PRESS/Chris Young

Four years ago, Sonja Mally was a busy tattoo artist with a photographic memory and penchant for long hikes.

Now, the 38-year-old Toronto woman considers it a good day if she can do a small drawing, muster the energy to walk around the block or 害羞草研究所減erform very basic tasks.害羞草研究所

害羞草研究所淚t害羞草研究所檚 a hard thing to have to explain to people why maybe one day you might be doing fine and the next day you can害羞草研究所檛 find the words to complete a sentence,害羞草研究所 Mally said.

Debilitating long-COVID symptoms ended the career she loved and forced her to go on Ontario government disability payments, which she supplements with some part-time administrative work.

Mally害羞草研究所檚 world changed in March 2020, when she got what she thought was a mild cold 害羞草研究所 害羞草研究所渘othing that I thought was going to slow me down.害羞草研究所

害羞草研究所淚t was what happened afterwards that was devastating for me.害羞草研究所

That COVID-19 infection led to respiratory problems and extreme fatigue. Then came more terrifying symptoms, including brain fog so severe that the artist couldn害羞草研究所檛 draw a clock during a neurology exam, as well as 害羞草研究所渆xcruciating pain害羞草研究所 that 害羞草研究所渇elt like my veins were on fire.害羞草研究所

The biggest difference between now and then, Mally said, is that the health-care community now recognizes long COVID is real.

害羞草研究所淚 don害羞草研究所檛 have to have that battle with medical practitioners (anymore) trying to convince them that this condition that I have exists.害羞草研究所

A recent Statistics Canada report estimated 3.5 million people in Canada, or 11.7 per cent of the adult population, reported 害羞草研究所渓ong-term symptoms害羞草研究所 lasting at least three months after COVID-19 infection as of June 2023.

Many of those meet the World Health Organization害羞草研究所檚 definition of long COVID 害羞草研究所 also called post COVID-19 condition 害羞草研究所 which is 害羞草研究所渢he continuation or development of new symptoms three months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least two months with no other explanation.害羞草研究所

Forty-two per cent of the people in Canada reporting lasting symptoms had them for a year or more 害羞草研究所 and for many, they haven害羞草研究所檛 resolved, StatCan害羞草研究所檚 report said.

But Canadian doctors and scientists want long COVID patients to know that research is accelerating.

Long COVID Web, a research network of close to 600 health-care practitioners, scientists and patients across Canada, aims to not only help manage symptoms, but also find 害羞草研究所渟olutions to get rid of long COVID,害羞草研究所 said Dr. Angela Cheung, the network害羞草研究所檚 lead and a senior physician-scientist at University Health Network in Toronto.

Long COVID affects many different systems in the body, Cheung said, with the most common symptoms including fatigue, brain fog, cardiovascular problems and shortness of breath.

Cheung has seen many patients improve, and 害羞草研究所渜uite a few害羞草研究所 have even returned to their 害羞草研究所渂aseline害羞草研究所 functioning before COVID.

害羞草研究所淲hy some can return to baseline and others cannot, I害羞草研究所檓 not sure. But certainly it害羞草研究所檚 something that we need to better understand,害羞草研究所 she said.

Susie Goulding of Cambridge, Ont., got infected around the same time as Mally back in 2020 and said she could barely function with similarly life-changing symptoms.

She gradually improved enough to run her flower shop and care for her 15-year-old son, but she still struggles with lingering brain fog.

害羞草研究所淚 think I害羞草研究所檝e healed to a plateau,害羞草研究所 said Goulding, 56.

害羞草研究所淚 have a lot of issues with word-finding and with the stamina of my brain. I can only do so much.害羞草研究所

A few months into her illness, Goulding started a Facebook group called COVID Long-Haulers Support Group Canada. Three and a half years later, there are close to 20,000 members, she said.

害羞草研究所淚t just kills me when people join our group and they said they had no idea (this could happen to them). You know, it害羞草研究所檚 sad,害羞草研究所 she said.

Many long COVID patients live in fear of getting reinfected with COVID-19, or any other virus, because it can wipe out any recovery gains they害羞草研究所檝e made, said Goulding.

害羞草研究所淚t害羞草研究所檚 really like the world has forgotten about COVID and has moved on and all of the safety precautions that were meant to keep people safe are no longer there,害羞草研究所 she said.

害羞草研究所淎nd so we have to navigate through the world as best as we can with our safety parameters in mind.害羞草研究所

Mally had a glimpse of hope last year, when she was 害羞草研究所渇inally able to walk, go for little hikes again 害羞草研究所 I was just functioning on a much more normal kind of level.害羞草研究所

But she was only able to enjoy it for a couple of months before she caught a cold, despite taking precautions such as masking.

害羞草研究所淚 lost all that progress. I was in bed again for months and unable to do anything,害羞草研究所 she said. 害羞草研究所淚害羞草研究所檓 still trying to work my way back from that.害羞草研究所

One dangerous misconception is that long COVID only happened to people who were infected earlier in the pandemic, said researchers.

Cheung saidit害羞草研究所檚 possible the Omicron variant carries a smaller risk of long COVID than the previous Alpha or Delta variants did, but the risk is still significant becauseso many more people are infected with Omicron.

害羞草研究所淭his variant can and does cause long COVID,害羞草研究所 said Dr. Jim Russell, a professor of medicine at the University of British Columbia and another researcher for Long COVID Web.

There害羞草研究所檚 growing evidence that vaccinations not only protect against dying and hospitalizations but against long COVID too, Russell said.

Like Cheung, Russell is hopeful they will find ways to treat long COVID by getting at the root of what causes it.

害羞草研究所淚 can害羞草研究所檛 help but believe that between Europe, U.S., Australia, Canada, we害羞草研究所檙e going to start seeing breakthroughs within the next year,害羞草研究所 he said.

One of the main theories Russell is studying is overactive or sustained inflammation.

害羞草研究所淲hen you get infected, your body turns on an inflammatory response to kill the virus 害羞草研究所 and you need that inflammatory response to recover,害羞草研究所 Russell said.

害羞草研究所(But) this inflammation, unfortunately, doesn害羞草研究所檛 turn off in some people, and it keeps going for months,害羞草研究所 likely damaging organs including the lungs and the brain that lead to long COVID symptoms, he said.

Researchers are also looking at immune system dysregulation, disruption of the microbiome in the gut, damage to endothelial cells in organs and unusual persistence of the virus in the body as other plausible theories for causes of long COVID.

Goulding, who joined the patient advisory group for Long COVID Web, said these are encouraging developments for long COVID sufferers.

害羞草研究所淒on害羞草研究所檛 give up hope yet,害羞草研究所 she said.

害羞草研究所淲hen the research is just getting rolling, you know, there are going to be interventions that are going to help people.害羞草研究所

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