‘Mass disabling event’: advocates fear tsunami of long COVID patients as Omicron spreads unchecked

Jan Willis knew she had COVID-19 after she got back home to Victoria in March 2020. At the time, much like the situation today, PCR tests were being reserved for health-care workers, hospitalized patients, and outbreak management. But she didn’t need one.

Willis, 67, had been travelling across South and Central America on a cruise ship, and knew she’d come into contact with people who were infected by the pandemic virus, so it wasn’t a surprise when she developed symptoms herself—body pains, blurred vision, and diarrhea.

What did come as a surprise, though, were the strange ongoing medical issues that developed after she recovered from the illness.

“My doctor was confused for a long time because I would suddenly have these weird things happen,” Willis told Capital Daily. “ I would wake up and I couldn't see, you know, I had blurry vision for like four hours. Or I would have a sudden coughing fit out of the blue for no reason as if I had pneumonia, and then it would just be gone.”

Some of those symptoms have lasted to this day. At times, Willis’s body temperature suddenly drops down to life-threatening levels, with no prelude or apparent cause. She still sometimes goes to bed wearing a sweater, woolen socks, and a hat, to keep herself as warm as possible. On top of these symptoms, Willis has lost her hearing eight different times—each time, it has been revived by taking Prednisone, a corticosteroid drug.

In trying to diagnose the cause of these symptoms, Willis has seen her family doctor multiple times and had an MRI done. “Everything always shows up as being normal, but the symptoms are not normal,” she said.

The only explanation, one that her doctor diagnosed her with, is that Willis has long COVID.

Long COVID is a post-viral syndrome that many people develop after recovering from COVID-19, and causes symptoms that can last upwards of three months. Exactly how many people develop long COVID symptoms remains disputed, with some studies estimating 10% while others say it’s more than 50%.

Very little is known about what causes long COVID, and as a result there’s no treatment for the condition overall. There are over 200 symptoms that can manifest in someone who has recovered from COVID-19, ranging from headaches and dizziness to debilitating fatigue and brain fog, organ damage, heart palpitations, and chest pains.

“I've had to seek out counselling to deal with the roller coaster ride of not knowing what to expect each day,” Willis said.

Jonah McGarva started the group Long COVID Canada to advocate for people like him: people whose lives have been turned upside down by the new chronic condition. McGarva was healthy and had no underlying conditions before he contracted COVID-19 in March 2020.

Before the virus changed everything, McGarva says he used to work round the clock as a sound engineer, and led a vibrant social life full of travel.

“I've had to basically say goodbye to the life that I've led for 42 years,” he said. His interview with Capital Daily was postponed several times due to his health complications. Before talking to us, he says he had to steel himself for mental and physical exhaustion that comes from holding a long conversation. “I have to prepare for it. I have to rest consistently,” he said, adding that he spends up to 16 hours a day sleeping.

In addition to chronic fatigue that leaves him with no energy to do the simplest of tasks, McGarva now suffers from brain fog, a recurring cough, blurry vision, heart palpitations, and has also been diagnosed with early onset emphysema.

For people like McGarva, who are unable to work because of their long COVID symptoms, there’s little to no financial support available beyond 15 weeks of Employment Insurance benefits.

“Myself and many other patients who got sick in the first and second wave were lucky because CERB was set in place, but that cut off for many of us in January or February of 2021,” he said. “So I've been without any financial assistance, other than leaning on my wife and her working three jobs to support us both.”

At the moment, with COVID-19 tests being severely restricted for most British Columbians, compensation from WorkSafeBC is also difficult to obtain.

Dr. Karina Zeidler, a Vancouver-based family physician and co-founder of advocacy group Protect our Province BC, lays this out using the example of a teacher who might contract COVID-19 at school—where there are few to no measures to prevent transmission of the virus—and then develops long COVID symptoms.

“They're not going to be able to get a test or show that they got COVID at work, and so they're not going to get any compensation from WorkSafeBC,” Zeidler said.

Getting a diagnosis

While there is no known treatment for long COVID’s full complement of symptoms, BC has four post-COVID recovery clinics located in the lower mainland whose purpose is to support people who develop these symptoms, refer them to medical and mental health specialists, and collect data and conduct research to try and find causes and treatment for long COVID. People who live outside the lower mainland can access these clinics virtually.

According to the BC health ministry, 2,800 people have been accepted for care at these clinics as of Jan. 13, 2022. Experts like Zeidler say the number of people living with long COVID is far greater than those who have been able to access them.

Besides people who fell ill between January and May 2020 and weren’t able to get a COVID-19 test, like Willis, these long COVID clinics only accept people who have had a positive PCR or serology test, and have been referred to them by a primary care provider.

The issue of people needing a positive test to get into a clinic but not having access to one during the Omicron wave is soon to be resolved. In an email to Capital Daily, the BC Ministry of Health said the post-recovery COVID-19 clinics won’t require patients to submit a PCR test as a condition of acceptance as of March 1, 2022. But they’ll still need to be referred by a physician or nurse practitioner, which continues to pose a problem.

According to Zeidler, long COVID is difficult for health-care workers to pinpoint for a number of reasons, even when a patient did have access to a PCR test. ​​“The issue there is that… they may have had a positive COVID test six months ago, so it might not be at the forefront of what we're asking [about],” she said.

Physicians also aren’t always cognizant of long COVID when they look to diagnose patients who come in with one of the long list of symptoms associated with it. Diagnostic methods like Willis’s MRI don’t catch long COVID.

“Depending on your primary care physician, or whoever it is that you're seeing, a lot of people are being told, ‘Well, there must be nothing wrong with you, or maybe this is because of stress or psychosomatic,’ and are dismissed, even though their condition is hugely disabling,” Zeidler said.

People who were asymptomatic and had COVID-19 without knowing it, or those who contracted the virus but couldn’t get a test for any other reason are also at risk of developing long COVID.

Another factor that compounds the issue is the severe doctor shortage in places like Greater Victoria, where few adults have a family doctor and three walk-in clinics have shut down in the last three weeks. Zeidler says she’s most concerned about people who are unable to get treatment or a referral to the post-COVID recovery clinics because of this health-care crisis. Even with a referral, long COVID clinics tend to be selective and have long wait times to get in. McGarva, for example, had to wait 18 months and rely on rigorous advocacy from his family doctor, in order to be accepted.

Based on current case counts—and conservative estimates that 10% of the population that has contracted COVID-19 will develop post-recovery complications—Zeidler believes at least 30,000 people in BC will have to deal with long COVID in the coming months. While there is some research that suggests vaccines could lower the chances of a breakthrough case developing into long COVID, studies are in their preliminary stages and their findings, so far, are conflicting.

“Right now the government and public health have told us over and over again… that they're not interested in stopping transmission of the virus, they're only interested in stopping hospitalizations,” Zeidler said.

Though federal chief public health officer, Dr. Theresa Tam, recommends people infected with COVID-19 self-isolate for 10 days after they test positive or symptoms appear, BC’s provincial health officer, Dr. Bonnie Henry advised vaccinated people to return to work or school as soon as their symptoms subside, with no minimum isolation period necessary.

“As long as we are feeling well, in this new context we can and must continue going to work, going to school and socializing safely in our small groups,” Henry said on Jan. 21. “We cannot eliminate all risk.” In BC, health policies and guidelines are already treating COVID-19 like the common cold.

“The problem with that is that it ignores long COVID,” Zeidler said. “If you're just going to let Omicron rip through the entire population… then what are we going to do about all of the people who are going to end up with long COVID? It's going to be a mass disabling event.”

With testing severely limited, independent experts have used modelling to estimate that about 13,000 people are contracting the highly transmissible Omicron variant each day in BC—about eight times the official daily case count.

Inconclusive research

There is some hope on the horizon for those who have had two doses of the COVID-19 vaccine and become infected during the fourth or fifth waves of the pandemic.

A new preprint, non-peer-reviewed research paper from Israel studied over 3,000 people who filled out an online questionnaire, and their findings suggest that two doses of the vaccine may protect people against long COVID.

“Vaccination with at least two doses of COVID-19 vaccine was associated with a substantial decrease in reporting the most common post-acute COVID-19 symptoms,” the authors wrote. This study looked at people who tested positive between March 2020 and November 2021, before the emergence of the Omicron variant.

BC PHO Dr. Bonnie Henry took this information one step further. At a press conference on Jan. 21, 2022, Henry said that while the data is still incomplete, there is evidence to suggest that for people who are vaccinated and had milder illness from COVID-19, the risk of developing long COVID symptoms is “dramatically” lower.

“Previously in the Delta wave, we saw that two doses of vaccine reduced the risk of long COVID, if you did get infected, by over 50%, and we have no reason to think it would be any less than that with Omicron,” Henry said.

When asked where the PHO got that statistic, the Ministry of Health told Capital Daily, in an email, “It is too early to know whether there is a lowered risk of people experiencing persistent post-COVID symptoms here in BC after they were double vaccinated,” and noting that “reports from other jurisdictions show this may be the case.”

The government says it will be studying its own data to see if the Israeli study holds for BC.

Another preprint, non-peer-reviewed study released in November 2021, this time from the US, looked at around 10,000 vaccinated individuals and found that at least one dose of the vaccine did not appear to impact the likelihood of developing long COVID symptoms down the road. Worldwide, studies are still being conducted to gauge how much of an impact vaccines have on the likelihood of a breakthrough case developing into long COVID.

“The problem that we're having is that many of these studies will have different definitions of long COVID, different ways that they are following people, different symptoms that they would attribute to long COVID,” Zeidler said.

She herself seems cautiously optimistic that two or three doses of the vaccine could reduce the risk of long COVID by some degree, but says there’s no data to back that up yet, especially for the Omicron variant, which has only been around for about two months.

Another concerning trend is the possible increased risk of diabetes among children 30 days after they get infected by COVID-19—an issue being studied by the US CDC. When asked whether children on Vancouver Island are being diagnosed with diabetes at an unusually high rate, based on the CDC study, an Island Health spokesperson said they “do not have any data” on the subject.

‘It’s like a tsunami is hitting’

In Canada and in BC, while long COVID has ostensibly not been a priority from a public health communications standpoint, there are several studies being undertaken to understand the syndrome and document its impacts.

Much of the research in BC is happening at the post-COVID recovery clinics through the Post-COVID-19 Interdisciplinary Clinical Care Network, and the provincial health ministry says data from this research will hopefully be made public in early 2022.

Federal health authorities have been quicker to act. McGarva was a member of the organizing committee for the Canadian Institutes of Health Research virtual conference on Long COVID in June 2020. He is also a part of a University of Toronto study meant to officially document the lived experiences of COVID long-haulers.

But advocates like McGarva and Susie Goulding, co-founder of the COVID Long-Haulers Support Group Canada, say more research funding is needed, as is more awareness surrounding long COVID overall.

“There are going to be thousands more long haulers from Omicron, and nothing has been set up. There's no urgency in the messaging behind long COVID,” Goulding said.

Goulding, herself a long COVID patient, set up the long-haulers’ support group as a way for individuals to find peer support and information, at a time when their symptoms are either dismissed by health-care professionals or they’re unable to access any medical attention at all.

“People are able to vent, they're able to ask questions to people who are going through the same thing,” Goulding said. “Community level information is exchanged—so things like which clinics are opening up, which doctors are presently informative of long haul [COVID]—because we're finding that even two years into the pandemic, there are so many medical personnel that don't recognize long COVID.”

Like others, Goulding fears that allowing the Omicron variant to spread almost unchecked across BC and other provinces means that a few months down the road, the health-care system will have to deal with hundreds of thousands more long COVID patients.

“It's like a tsunami is hitting and we're not prepared,” she said.