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'It could happen to you': What you need to know about long COVID

A B.C. doctor breaks down the who-what-when-why of post-COVID conditions.
Long COVID: You've heard the words, but what does it really mean? And why should you care? Protect Our Province BC answers those questions.

By now, everyone has heard the term long COVID. But what does it really mean, and how serious is it?

Protect Our Province BC, a coalition of health-care professionals, scientists and community advocates who are working to advocate for COVID awareness, is promoting COVID Awareness Week this week (April 3 to 7).

One of the group’s major concerns is long COVID, which it calls a “serious and increasingly prevalent condition” in B.C. and beyond.

According to Statistics Canada, as of last August it affected 1.4 million people in Canada — or about 15 per cent of those who’ve been infected with COVID.

In March, Canada’s chief science adviser issued a report warning that Canada could be facing a “mass disabling event” because of long COVID.

The issues surrounding long COVID were the subject of a PoP BC briefing, titled "It Could Happen To You," on March 29.

Dr. Ric Arseneau, a Coquitlam-based internal medicine physician and a clinical professor at the University of British Columbia, served as the B.C. physician lead for the provincial ECHO education program for long COVID.

He shared his expertise with Dr. Susan Kuo, a family physician and clinical associate professor at UBC. Here are some of the highlights from the briefing:

What is long COVID?

Arseneau noted the “post acute sequelae” of SARS-CoV-2 infection — essentially, everything that happens after COVID infection — includes a complex array of issues.

The Mayo Clinic has divided those into three groups:

  • those with tissue damage: This group includes patients with such outcomes as lung scarring, heart disease and blood clots.
  • those with no identifiable tissue damage: These patients present with post-viral syndrome and usually have symptoms such as fatigue, sleep disturbance, brain fog and other unexplained symptoms.
  • those with psychiatric/psychological consequences: These include depression, anxiety and post-traumatic stress disorder.

Arseneau pointed out the three categories aren’t mutually exclusive: you could see a patient who has tissue damage and chronic fatigue syndrome, along with anxiety or depression.

What causes long COVID?

“The predominant theory right now is that it’s an overwhelm of the stress system that stays in the ‘on’ position,” Arseneau said.

Patients have activated glial cells — cells that make up about 80 per cent of the brain.

“Microglia become activated and set off local neuro-inflammatory process, which turns on the immune system, which turns on the fight-or-flight system and has consequences on the body,” he said.

It can occur after any COVID infection, even those that present as “mild” illness.

What do you see in patients with long COVID?

“Patients with long COVID usually present with symptoms of COVID, but after the acute infection, they continue to have or continue to get worse with fatigue, sleep disturbance, brain fog, pain and unexplained symptoms,” Arseneau said.

Those “unexplained” symptoms can be anything but tend to fall into three main categories:

  • gut problems
  • dysautonomia — improper functioning of the autonomic nervous system, which most often presents as POTS (postural orthostatic tachycardia syndrome), where the heart beats faster than normal while going from sitting or lying down to standing up
  • brain symptoms

In all, Arseneau said, more than 200 symptoms have been described — symptoms that, in many cases, aren’t easy to pinpoint.

“And when you work them up, all the tests come back normal, which some physicians unfortunately interpret as ‘there’s nothing wrong.’ And so I make the distinction between ‘We can’t find anything’ and ‘There’s nothing wrong,’” he noted.

He noted long COVID is a “syndrome-based” diagnosis, which means there are criteria set out and patients will fall along a spectrum.

In the mild version, it will be something like what’s been seen in teens and young adults after mono, when they may be out of commission for months but then get back to normal.

In more severe cases, patients will fulfil the criteria for chronic fatigue syndrome and/or fibromyalgia. Plus, they can present with symptoms such as migraines, irritable bowel syndrome and other things that fall into a spectrum of disorders called “central sensitivity syndromes.”

How many people in B.C. are currently affected by long COVID?

Arseneau noted an estimated 10 per cent of people who get COVID will be affected by long COVID.

Protect Our Province notes that, with almost 80 per cent of the province having been infected with COVID, that could mean that, at any given point in time, 500,000 British Columbians have symptoms lasting longer than three months following COVID infection.

“We’re not sure how many of those people will get completely better, how many of those will be partially better or how many of those will have persistent symptoms of chronic fatigue syndrome, fibromyalgia,” Arseneau said.

“What we worry about is the flood of patients we’re going to see moving forward and the consequences not only at the individual level, but at the societal economical level.”

What can you do to protect yourself from developing long COVID?

Arseneau says the first message is simple: you may be over COVID, but COVID isn’t over you.

That means continuing to take precautions to prevent yourself from being infected in the first place.

“I still behave the same way that I did two years ago. I think it’s nice to hope that COVID is over, but it’s not,” he said.

The second important factor is immunization, he said.

And third? If you’re in one of the risk groups and you do get COVID, get Paxlovid as soon as you can.

Which brings up another challenge: access to Paxlovid.

B.C. has restricted Paxlovid access to a small subset of people, focusing on those who are immunocompromised, clinically extremely vulnerable, or who are 70 and older with three or more chronic conditions.  Those who are Indigenous and those who are unvaccinated or unboosted can qualify at younger ages and/or with fewer chronic conditions.

(You can see the entire list of criteria at the Province of BC website.) 

Arseneau said he believes B.C.’s restrictions on Paxlovid access are an error in policy.

He noted the province’s initial guidelines were designed to prevent hospitalization and death.

“They weren’t looking at preventing morbidity,” he said. “And so, for patients who already have chronic fatigue syndrome, or patients who already have COVID, getting it a second time might mean a new lower level of function.

“Those patients are at high risk of further morbidity, and I think preventing long COVID in the way that I’ve defined it is just as important as preventing the tissue damage, preventing hospitalization and preventing death.

“In fact, we’re probably going to have a bigger impact on society by preventing the morbidity than we are by preventing the hospitalization.”

B.C.’s long COVID clinics are now closed. What does that mean for patient care?

The province had four in-person clinics in its Post-COVID-19 Interdisciplinary Clinical Care Network, but those were turned into an online service as of April 1.

Arseneau said the closure of the long COVID clinics was another “policy error” — one of a few that he says have made the process of getting treated for long COVID more challenging than it should be.

In the beginning, he noted, it was made difficult for patients to even access the long COVID clinics, as a positive test was required at a time when there was little screening available. Then, at one time, access was restricted to hospitalized patients only — which, he noted, is a good way to identify people with actual tissue damage, but not all the other long COVID patients.

“Out of all the patients I’ve seen, I’ve only had one or two patients who’ve been hospitalized,” he said. “The vast majority of patients who’ve been severely disabled just had a regular flu-like illness not requiring treatment, not requiring hospitalization,” he said. “I think that, unfortunately, they’re closing early, before we see the big wave.”

Arseneau said he and the small number of physicians around B.C. who are specializing in long COVID will do their best to handle all the patients, but he warned it’s not sustainable.

“It’s unfortunate those clinics are being closed when we most need them,” he said.

Where can long COVID treatment go from here?

Arseneau is hopeful Canada will choose to dedicate funding to research into long COVID, now that the issue has received attention in high-profile ways — including the Canadian science adviser’s warning that long COVID will be a “mass disabling event” in Canada.

He’d like to see more education for physicians on long COVID, with an ongoing series of education sessions for family doctors so that they have a “toolkit” to help them manage long COVID patients.

For the full video conversation, check out the Protect Our Province BC website.

Follow Julie MacLellan on Twitter @juliemaclellan.
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