As the number of people struggling with long-term COVID complications grows, a New Brunswick researcher is launching a study to better understand the experiences of Canadian patients in the pandemic’s most recent waves.
Last year, Mount Allison University biology professor and researcher Vett Lloyd began the first phase of her national study looking at the chronic complications of COVID-19 in patients from the pandemic’s first two waves.
“We were looking at risk factors (for long-COVID), and the long-term goal was to follow up and also look at some genetic and biological correlates to really nail down what might be a risk factor,” Lloyd said in an interview.
“We’ve completed the first part, and people were wonderful. We got … a very good cross-section of the demographics, which I’m really excited about. It’s not just a handful of bored people.”
More than 700 Canadians from every province and “most” of the territories participated, and Lloyd recently completed a report on the first study that will soon be published on her research website.
“What we found out from them is in terms of symptoms, long-COVID in Canadians looks like long-COVID everywhere else,” Lloyd said.
“That’s not a big surprise because people, we’re the same species no matter where we are, so we experience it the same way.”
‘They needed integrated care’
Lloyd described long-COVID as a set of symptoms typical for post-infectious syndrome. This syndrome, she explained, isn’t only caused by COVID. It’s also caused by other known and unknown infections and viruses.
“It’s a suite of neurological symptoms, brain fog, constant pain, and crushing fatigue,” she said. “Those are the main ones. There are between 50 and 100 other common symptoms. So we’ve certainly documented that (in the first study).”
The survey also found that during the pandemic’s first wave, Canadian patients struggled to get appropriate care due to the multiple symptoms that characterized their illness. Even if their primary health care provider believed they were ill, Lloyd said getting the integrated care their complex illnesses required was challenging.
“They were initially getting frustrated with the way the health care system functions. We have the primary health care provider as a gatekeeper, and they send you to a specialist who is a specialist for one particular area,” Lloyd said.
“But if you have a multi-system illness, that’s really not helping you, and that’s true of all these post-infectious syndromes. They needed integrated care.”
In Nova Scotia, long-COVID patients who meet established criteria receive that kind of care through the Integrated Chronic Care Service (ICCS) in Fall River.
Last month, Nova Scotia Health (NSH) health services manager Ashley Harnish told the Halifax Examiner their team was expecting an influx of long-COVID patients in early March. That’s when the start of the Omicron wave hit the 12-week mark.
Harnish wanted to ensure Nova Scotians still suffering three months post-COVID infection completed the NSH symptoms survey form. That form, she said, provides valuable information about the COVID-19 recovery of Nova Scotians. It also serves as the access point for anyone who requires an assessment with the post-COVID navigator and further care at ICCS.
Lloyd believes as the number of Canadian long-COVID patients rise, more jurisdictions will have to open similar facilities to keep up with the demand from patients experiencing COVID-19-related multi-system illnesses.
A roadmap for subsequent waves
She and her team will soon launch a follow-up survey with participants from their first study to learn more about how those wave one and wave two patients are now doing.
“That’s going to be helpful because it’ll be a roadmap for people who are getting sick in waves three, four, and five,” Lloyd said.
“Overall there seems to be a general trend where most people slowly get better, but we really want to have a better roadmap than ‘most people slowly get better.’ That’s really vague.”
They also plan to reach out to participants from the first study who are living in New Brunswick and Nova Scotia. They’re seeking those who indicated an interest in future studies and in providing blood samples for analysis.
Lloyd said there will be collection sites just outside of Halifax and Moncton. They’ll use those blood samples to determine whether patients are genetically predisposed to this kind of multi-system illness, or if they were previously exposed to something that made them more susceptible to subsequent infections.
“Epstein-Barr virus is the usual culprit. We’re looking at that, but also some other viruses and bacteria. So basically, is it bad luck in your life, or was it bad luck when your parents were making you,” she said.
“If we can figure out what it is, there are many tools that can be used to boost or tweak the immune system performance. We just have to know what the problem is first.”
Wanted: Long-COVID patients from waves 3 to 5
While the first study captured the experiences of patients in the first two waves of the pandemic, Lloyd is now re-launching it to do the same for long-COVID patients in the most recent waves. Canadians who contracted COVID-19 during waves three, four, and five and have long-COVID can access the survey here.
With soaring COVID-19 case numbers during the Omicron wave and estimates that 10% to 20% of those who contract the virus will struggle with long-COVID, Lloyd is concerned the number of people impacted by long-term effects will significantly increase.
“There’s been speculation ‘Will Omicron suddenly be different and not cause long-COVID?’ Answer? We’ll find out really, really soon,” Lloyd said.
“There’s no reason to think that this variant of the virus would be different than the other variants because these post-infection syndromes are triggered by so many different things and you don’t have to be very, very sick to get long-COVID.”
While long-COVID is frequently characterized as having a persistent lingering symptom or symptoms three or more months post-infection, Lloyd said it’s important to recognize many people’s lives are still turned upside down even if they’re feeling better at the 12-week mark.
“That (definition) still means that someone has been incapacitated for up to three months. That’s a quarter of the year. That’s devastating,” she said.
“I’m not a good patient. If I’m sick for two or three days, I find that almost intolerable. I just can’t imagine what six weeks would be like, let alone months to two years.”
‘An outcome other than dead or alive’
Lloyd said one bright spot uncovered during the first survey was patient experiences improved overall between waves one and two. She’s hopeful that continues to be the case for struggling patients who contracted COVID-19 during waves three to five.
“Early in the pandemic people didn’t know long-COVID (was going to be a thing) but they should have. It was predictable because we saw it with SARS,” Lloyd said.
“But there wasn’t general awareness that there would be an outcome other than dead or alive. As that became understood, the number of people who reported being treated dismissively decreased.”
She points to the World Health Organization (WHO) as having been helpful. The WHO crafted clinical definitions along with detailed information and a checklist of symptoms for what it calls post COVID-19 condition.
Lloyd added that ongoing “significant” international research efforts to identify long-COVID risk factors are also very encouraging.
‘We will still be getting COVID’
“Why do some people get long COVID and some people don’t? Once you know what the difference is you can start trying to address that,” Lloyd said.
“Unfortunately, we will still be getting COVID. It’s not gone away. If we can control it so that a higher proportion get over it quickly, that is a huge benefit in terms of less human suffering. Which is the point.”
Lloyd, a renowned tick and Lyme disease researcher, is hopeful researchers will also use what they learn about long-COVID and apply it to other multi-system debilitating illnesses like chronic Lyme disease, fibromyalgia, and chronic fatigue syndrome.
She said it doesn’t matter what triggers these illnesses — they’re all similar and patients need the same kind of help.
“What I would like to see is a response that helps people as they try to regain their health, so it means reconfiguring our health care system to some extent,” she said.
“But that’s long overdue and providing more holistic integrating health care is long overdue. It was probably going to be pushed by economics, so this is just one more shove in that direction.”