Guelph researchers look for answers on lasting misery of coronavirus long-haulers

Researchers at the University of Guelph are trying to determine why months after infection with COVID-19, some people are still battling crushing fatigue, lung damage and other symptoms of the novel coronavirus.

Dr. Melanie Wills, director at the G. Magnotta Lyme Disease Research Lab, said when the pandemic hit in early spring, they saw a potential similarity between COVID-19 and Lyme disease — some patients just don't seem to get better.

"This also happened with SARS when it swept through Toronto in 2003 and that was mostly contained in hospitals at that point, but there were health-care professionals who picked it up, and when they recovered from it, they didn't actually regain their previous state of health," Wills told CBC News. 

"So we already had a warning sign that a virus very similar to COVID-19 was giving chronic complications and so we started to imagine this study back in the spring thinking, 'OK, there might be some sort of phenomenon that's going to happen with COVID-19.'

"And then over the summer, we really started to see in the news media these stories of long-haulers beginning to surface and that's when we said, 'Yes, we're on track.' We kind of saw this coming and now we need to jump into this and really figure out what's going on," Wills added.

Evidence suggests these effects can last for years

People with more severe infections might experience long-term damage not just in their lungs, but in their heart, immune system, brain and elsewhere. 

Evidence from previous coronavirus outbreaks, especially the severe acute respiratory syndrome (SARS) epidemic, suggests these effects can last for years.

Jackie Loree, a respiratory nurse in Kitchener, Ont. is a COVID-19 long-hauler. She tested positive for coronavirus in April, and eight months later she is still experiencing its effects.

"I still have very similar symptoms as to the acute phase. I still have chest pain being the worst, and sometimes I have a little bit of shortness of breath and I do have some difficulty concentrating. But for the most part, neurologically, I have been quite spared," Loree told CBC Kitchener-Waterloo's The Morning Edition. 

"My circulation is poor, I still have bouts of nausea, I lost a great deal of my hair throughout this process and every day is different. I always have symptoms every day and it's very difficult. It's emotional and I can't always cope very well."

Loree said she went back to work four months after the initial illness but is still unable to work full time.

"Some days are challenging to get through," she said.

"[There's] the ongoing left side chest pain and there are no answers for this, and that's the difficulty with COVID-19. Us long-haulers, most of us test negative for everything that we are tested for, and we don't have answers and we don't feel well," Loree added.

With the pandemic raging across the globe and an indication that some patients are not getting better, Wills said high rates of ongoing complications could be expected.

"It's a quality of life issue for increasing numbers of people, it's a consideration for the health-care system and the burden that it's going to face in the long term as we try and deal with these health complications; it's a concern for the economy if people can't participate the way that they want to, it is a multifaceted issue," Wills said 

"It's like a snowball rolling down a hill with COVID now and so my question is, if we are seeing a chronic fatigue syndrome or fibromyalgia syndrome emerging from the COVID, is that finally going to shine a spotlight on these types of diseases that have been really ignored to our own peril?"

"I think research like this is really positioned to open up that Pandora's box to figure out what's going on and we're well positioned to do it as well because we studied the Lyme disease population," she said.

Jennifer McDonald, a Waterloo, Ont., nurse knows from personal experience just how serious the virus can be. She was bedridden for nearly two weeks after getting sick with COVID-19 this spring.

After the worst of the illness had passed, McDonald said she still dealt with lingering symptoms, including fatigue and significant hair loss.

"Probably three quarters of my hair fell out," she said.

"I would say I have a pretty strong immune system based on my past health. But I have to say, I've never been in bed for 12 days in all of my life, and this one did that to me."

Treating those with lasting symptoms

What researchers find will be crucial in treating those with lasting symptoms and trying to prevent new infections from lingering.

And Wills said even though COVID-19 vaccines are on the horizon, the research is still very important.

"I think it's important to acknowledge that even if we begin to emerge from this pandemic situation in the next couple of months, it's already raged through society for a considerable amount of time," Wills said. 

"There are people who will have these lingering presentations and they will want answers. And so even if COVID-19 is not a problem or it's less of a problem a year from now, all of the people who've been affected by it up to that point deserve to be treated fairly and to to have their condition investigated so that we can at least provide some level of care. 

The other piece, of course, is that when we're evaluating chronic complications of infectious disease, there's a sense that it's going to dovetail, it's not going to be fully unique to COVID-19. This is going to help propel research into chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, none of which are going to go away with a COVID-19 vaccine."