What’s it like to live with, or treat, long-Covid?

You’re listening to a Frequency Podcast Network production, in association with City News.

Jordan Stop me if this sounds familiar: we’re all gonna get COVID. It’s just a matter of time. Especially nothing you can do. Might as well just get it over with. Look, after this long, I understand that sentiment. When it feels like something bad is inevitable, taking the punch and moving on can be a viable strategy. The problem here, though, is with getting over it.

News Clip #1 Patients who are quite surprised that they’re still sick.

News Clip #2 Doctors at a new clinic say shortness of breath and dozens of other post-COVID symptoms are being discovered.

Jordan As you will hear directly from someone who lives with it today, COVID that never really goes away is very real. And it’s not fun. It can change your entire life. And as you’ll also hear today from somebody who tries to help those with long COVID, we still just don’t know enough about who gets long COVID and why, about the symptoms. There are hundreds of them. About treatment, we’re not sure yet. And about what long COVID looks like in year 2,3,5,7, we don’t know. So, yes, you might get COVID, you might have had it already and you might get it again. That’s just life now, I guess. But this is why you shouldn’t want to just get it over with. And if you do, well, at least now you’ll understand what “over it” might mean.

I’m Jordan Heath-Rawlings. This is The Big Story. We have two guests today. First, Dr. Marina Wasilewski, a scientist at the Sunnybrook Health Sciences Center in Toronto, part of a team of researchers looking at how long COVID affects patients quality of life. Hello, Dr. Wasilewski.

Dr. Marina Wasilewski Hi, Jordan.

Jordan Thanks for joining us.

Dr. Marina Wasilewski Thanks for having me.

Jordan I want to start with this because this is a term that we’ve been hearing for almost two years now, and I still don’t really know what it means. Do we have an official definition or diagnosis of long COVID for the research that you’re doing?

Dr. Marina Wasilewski Yeah. Defining long COVID has definitely been a challenge for a couple of reasons. Firstly, there’s a lot of variation in what people experiences long COVID symptoms, which makes it really tough to come up with a neat and tight definition based on symptoms. Second, there’s a lot of debate around how long symptoms need to last for it to be considered long COVID. And thirdly, there’s a lot of tension between or some tension between healthcare providers and researchers and patients themselves about naming the condition. So the term long COVID, I don’t know if a lot of people know, was actually coined and used by patients themselves early on in the pandemic to capture this experience of ongoing and prolonged COVID symptoms. And this really emerged from patients going online trying to explore whether others were having similar experiences. And it turned into one of the largest worldwide mobilizations of peer support and grassroots advocacy for recognition of this emerging condition.

On the flip side of that health experts did establish sometime last year the official clinical diagnosis of post-acute sequelae of SARS-CoV-2–ie. PASC, which, aside from being a mouthful, doesn’t really honour the lived experiences of patients who still prefer using long COVID. So the terminology has been a challenge. But all of this said we’ve moved to a place of greater agreement on the official definition. And the consensus so far amongst most is that long COVID is defined as a collection of symptoms that develop during or after a COVID infection, and this can either be a confirmed or suspected COVID infection and symptoms that continue for twelve or more weeks.

Jordan What do we know about how many Canadians are suffering from this or have suffered from this? I feel like we hear a ton of anecdotal stories about it, and we also hear that it’s far more of a problem than we realize, but I don’t think I’ve ever seen an actual estimate.

Dr. Marina Wasilewski Yeah. So all we have right now are estimates, and we’re estimating that anywhere between ten to 30% of people who get COVID will experience long COVID. So, if we’re thinking about Canada, that translates to almost 400,000 people on the low end and up to nearly 1.2 million Canadians on the higher end. And it’s important to remember that this is our estimate based on current case counts, meaning that we can likely expect the number of people with long COVID to keep increasing as COVID cases continue to rise.

Jordan How much do the symptoms and their intensity vary from person to person? We often hear about mild and severe COVID. Is there mild and severe long COVID?

Dr. Marina Wasilewski Yeah, there’s a really wide range of variability and symptoms, and that’s actually arguably one of the most unique aspects of long COVID. I think. Right now, our current running count of symptoms reported by people is upward of 200 at this point. My research group’s ongoing study of people with Monk COVID is finding that on average, a single person experiences roughly 18 symptoms, with the most common ones being things like forgetfulness dizziness or lightheadedness, trouble concentrating, shortness of breath and chest pain. And the cognitive symptoms are especially consistent with other studies that have also found people commonly report things like headaches and brain fog.

The other sort of interesting thing about long COVID is that it’s very episodic, so that means that people can experience symptoms in a fluctuating and irregular way. So often people talk about it as peaks and valleys. So there may be a period during which symptoms subside and things are going pretty well, only to be followed by a period where symptoms are once again exacerbated, with serious and negative consequences for that person’s life. So it’s sadly not always a linear trajectory where somebody initially feels bad, has lots of symptoms, and then with time, gets better and better until the symptoms go away. So it’s definitely very variable based on the person.

Jordan Have we seen this with any other virus in humans. Is this a new thing where the symptoms can vary so much? Not everybody gets it for the same amount of time. They can go and come back. It doesn’t sound like anything I’ve heard of.

Dr. Marina Wasilewski Yeah. So it is similar in some ways to other post viral illnesses. We’ve been hearing a lot of comparisons to chronic fatigue syndrome, so I don’t think that this is necessarily new, but I think the scale of it is what’s really striking right now, and especially in this day and age of information sharing and the Internet. I think knowledge is spreading a lot faster than it may have in the past, and I think we’re more aware in real time of what’s developing.

Jordan How the heck do you treat an illness like this that can have up to 200 different symptoms that can vary in terms of how intense they are and how long they last for? That sounds like a nightmare.

Dr. Marina Wasilewski Yeah. I think it’s very individualized. So it’s going to depend a lot on people’s individual symptoms, how it’s impacting their life and what that requires. So I don’t think that this is going to be a one size fits all approach. I think it’s going to be a lot more precise and tailored to individual people’s needs. And again, it depends on what their symptoms are and how it’s impacting their quality of life and day to day activities and how to help them maintain participation in those things that matter.

Jordan We’ve known about this post viral illness for almost two years now. How have our treatments evolved over that time? Are we making progress, helping long COVID patients get better?

Dr. Marina Wasilewski I think we’re definitely making a lot of progress, especially in the same way that COVID was a novel virus. Long COVID is a novel condition, and so we are very literally learning about it, simultaneously addressing the condition in real time. So if you think about it from that perspective, I think we’ve made some really great strides already. But given that long COVID is so varied and we don’t have a complete understanding yet, unfortunately, that translates to us not having a single treatment or medication yet for long COVID.

Jordan So it’s basically clinicians across the country, across the world dealing with individual patients who present different symptoms and trying to just battle those symptoms, I guess, as best they can, rather than trying to figure out one magic bullet for this condition.

Dr. Marina Wasilewski Yeah, absolutely. Right now, in the absence of a, quote unquote cure for long COVID, our best plan of attack for people who are suffering through the symptoms is to help them manage those symptoms and to increase their quality of life as much as possible and reduce the negative effects on their day to day. And in a lot of ways, that’s sort of where the rehabilitation sector comes in, which is my area of discipline and research.

Jordan We’re going to get to rehab in just 1 second, but I have one more question about the condition itself, and that is what do we know about what causes it in some patients? Do we know anything about what makes one person more likely to get it than another? Do you know what I’m asking here?

Dr. Marina Wasilewski Yes. At this point, I think we still haven’t narrowed in on exactly what causes long COVID or what might put someone at increased risk. So with COVID infection itself, we do know that certain people with certain risk factors like high blood pressure, diabetes, or obesity are likely to have a more serious acute infection. But we’re finding that these risk factors are not very clearly translating to experiencing long COVID. And so that’s another puzzling thing about long COVID is that it’s not actually dependent on the severity of the initial infection. So it’s very possible that somebody may have had COVID, had a very mild bout of it, and was fine initially, but months later is now experiencing these symptoms of long COVID.

So it’s not really clear right now what the underpinning cause of it is. One of the running hypotheses. And the science is definitely very much still evolving on this. But one of the hypothesis is that COVID infection might cause an autoimmune response. So meaning that your immune system starts to attack your body’s own healthy cells, tissues or organs. We see this in diseases like rheumatoid arthritis, where the body attacks healthy joints and causes inflammation and pain. So the overactive immune response results in what are called auto antibodies. And what a growing body of research is discovering is evidence of these auto antibodies in the blood of people with long COVID. So I know that there are many research groups that are looking at this hypothesis in this chain of research right now.

Jordan Okay, that’s enough about the mystery because it seems like it really is one. But what does the rehabilitation sector do for patients? Maybe give examples if you can, because as you mentioned, there’s so many different symptoms of this. What are you working on with someone?

Dr. Marina Wasilewski That’s a great question, Jordan, because honestly, I don’t think a lot of people are entirely clear on what rehab consists of, but it’s very goal focused. It’s individualized to each patient’s needs and aims to maintain or restore function across a number of areas of health, including physical health, emotional and social health. I think what’s becoming really clear to us now is that successfully managing long COVID requires rooting that care and therapy and what people want to achieve. So things like participating in daily activities, self care, getting back to work. And it’s exactly these types of goals that rehab professionals work with patients towards. So they help them manage their symptoms in a way that keeps them participating in the things that mean the most to them.

So right now, a lot of rehab for long COVID is focused on helping people manage fatigue and shortness of breath, especially. So you’ll hear a lot about breathing exercises and physical therapy that’s centered on pacing to make sure that people don’t over insert themselves. We’re also seeing a little bit more work in the areas of rehab psychology, given recognition of long COVID’s impact on mental and emotional health. But I really think we’re just scratching the surface on that, and we’re going to be really pleasantly surprised in the months and years to come with the progress we make in terms of collaboration between different care providers and researchers and disciplines to address even further the mental health and social well being of people with long COVID.

Jordan Do we have the resources in this country to rehab anywhere between 300,000 and 1.2 million long COVID sufferers?

Dr. Marina Wasilewski I think that’s the million dollar question. I think that’s what a lot of research groups are working on is to try to understand the extent of this issue and the impact that it has and what types of resources and funding allocation we need in order to ensure that people are getting the right care at the right time and in the right place.

Jordan What needs to happen for that to occur? Obviously, Canada is a big country. We talk all the time on this show about healthcare being a provincial issue, so response can be scattered from province to province. This is a nationwide problem. Like what do we do to help something on this scale?

Dr. Marina Wasilewski Yeah, I think long COVID is not an issue that’s going to be solved by any one person or any one health system in any single field. It is going to require a lot of collaboration and teamwork, likely more than what is happening right now. I think we definitely would benefit from greater recognition of the condition and national coordination of policies and funding that support recovery. And I’m hopeful that a lot of this will come as more research is done and policies can be established based on a wider range of evidence. The other thing that I think can make a huge impact is giving people with long COVID themselves a seat at the table to voice their own experiences and needs and to help shape health policies and practices so that they’re actually meeting their needs in a meaningful way. Ultimately, long COVID came from patient advocacy at a time where their condition was receiving little to no attention. And so without patients, we wouldn’t be where we are right now and moving forward. I think any efforts to support them, whether that be provincially or nationally coordinated, those efforts need to involve them and reflect their priorities.

Jordan Last question. How fluid is this situation? If we said goodbye now and we talk to gain in a month, how much would you know then that you don’t know now?

Dr. Marina Wasilewski I think we’d know a lot more in a month. Again, like I said, we’re learning minute by minute, hour by hour, in real time. There’s a lot that’s emerging, a lot of collaboration is happening, and so I don’t think I’d be surprised even a little bit if we knew was vastly different in a month than what we know now.

Jordan Marina, thank you so much for this. I feel like I have a clearer understanding of the problem.

Dr. Marina Wasilewski Thanks very much for having me, Jordan.

Jordan Dr. Marina Wasilewski, scientist at the Sunnybrook Health Sciences Center in Toronto.

Our second guest today, Susie Goulding, the founder of COVID Long-Haulers Canada, Canada’s largest online support group for survivors of COVID-19, and a COVID long-hauler herself. Hello, Susie.

Susie Goulding Hi, Jordan. Thanks for having me.

Jordan I want to start by asking you, when did you realize that you had what we’ve come to call long COVID? I’ve had a conversation with somebody who works in rehab and there really seems to be kind of a debate around how long it has to be before we meet that qualification.

Susie Goulding Right. Well, the acute stages, by the definition of the W.H.O., lasts up until twelve weeks. And at twelve weeks you’re sort of diagnosed with long COVID. I sort of started realizing I got COVID back in the early days of the pandemic in March of 2020. And when it was first a new virus to us here, it was supposedly thought that we would get better in a couple of weeks. And so I started to wonder as I wasn’t getting better, three, four weeks, five weeks, six weeks. It just seemed to continue on and more symptoms seemed to come on and I just really wasn’t getting better. So at twelve weeks, those are when the really ten to twelve weeks of really severe symptoms hit for me, with the brain fog and the heart palpitations and then things sort of wax and wane over time. But I think the twelve week mark is what the W.H.O. says and it’s sort of standardized across how we look at long COVID and get diagnosed.

Jordan I’ve learned preparing for this episode, that there can be dozens, hundreds of different symptoms in a different person. For this, what were yours? And as best you can, what did it feel like during that time, ten to twelve weeks and beyond?

Susie Goulding So my symptoms started off. What’s interesting about long-haulers is that many long-haulers and the majority of us started off with a mild case of COVID. For me, it was just a very kind of tickle sore throat that I didn’t think would turn into anything. But four days into it, I felt like I got slammed in the back of my head with a two-by-four, just all this inflammation I could feel and I had great difficulty swallowing. It was like my throat was paralyzed on one side and I couldn’t swallow properly anymore. So then the symptoms sort of it was almost as though you can feel it moving through the different systems in your body. So what started out as sort of an ear, nose, throat issues, then traveled to gastrointestinal and then it was sort of like flu-like, and then symptoms of GERD started showing which I still have to today. And then it went for me, it completely missed my lungs and it went into my heart and then sort of ten to twelve weeks different issues started showing up in fatigue and brain fog. So the classic symptoms of COVID are the brain fog, the post-exertional malaise, the exhaustion. And I think a lot of heart issues like tachycardia. I mean, there’s just so many symptoms. Just as you said, there’s over 200 symptoms listed. And what’s interesting is that nobody presents the same, which makes things very difficult for our medical practitioners and trying to diagnose because not one long-hauler will look the same. We all have a different variation of symptoms.

Jordan How has your quality of life and everyday experience changed since then?

Susie Goulding Well, it’s been two years now and I did manage to access a rehab clinic that was treating long-haulers for three months of rehab. So I’ve asked the improved I still do have symptoms that I live with today. I still have issues with recalling of words. My memory is not like it used to be. I have gastrointestinal issues, and if I do too much, my symptoms will flare and I’ll get rashes on my body and different things happen. I think I forgot the question, sorry, this is what happens. This is the brain fog. You’ll be mid-sentence and complex thoughts where you try to grasp and hang on to something to bring it back. It just disappears from your mind as to what you were just talking about.

Jordan That sounds really difficult.

Susie Goulding It is difficult, especially funny for me. It’s the word fumbling. So I have to be really careful now. Quality of life. My life has changed. I had to change careers. I wasn’t able to do the job that I used to do. I was a floral designer in a busy, physically demanding environment and so I can no longer do that work. I’ve since changed to be a medic in the film industry and it’s like a desk job. But I also have to be careful. So when I get up for the day, I have to just kind of gauge the temperature outside because I can no longer take heat. Heat I find just fries my brain and I don’t do well in heat and I don’t do well in extreme cold. So temperatures really affect me. And if I do get caught in heat or cold, then my body will just like malfunction and I’ll be out for about three or four days trying to recover.

So I have to be really careful now and what I do and where I do and the things that I do. I’ve lost a lot of the life that I used to have. I used to be very physically active. I have a young son, he’s 13 years old and three dogs. And I just can’t get out and do the things that I used to do. I used to live a really full vivacious life and I’ve had to scale back on that by probably to about 70% of what I used to do on a daily basis. So it’s just like an energy sort of conservation that we just only have so much energy, whether it’s like cognitively, emotionally, you have to be careful of your output of energy so that you don’t end up doing too much and then ending up in a crash. I’ve had to learn to learn how to manage my symptoms and live with what I am dealing with today. I feel like I’m one of the lucky ones.

There are a lot of people in the group, in the support group who I’m able to work, who can’t go back to work and are actually bedridden, because there’s so many different syndromes that are associated with the symptoms that are involved. There’s POTS, Postural Orthostatic Tachycardia Syndrome and when people stand up, their heart rate goes up to 170. It takes 5 hours for it to come down if it all comes down. And so these people, they can’t manage, they have to have walking aides. So I feel like I’m one of the lucky ones in that I can manage my symptoms and I can work and I feel like on a good day I’m 80% to 90% recovered sometimes and if I’m careful then I can continue on that way. But there are people who are just as sick as they were two years ago and some people are getting worse. And so I feel like I’m one of the fortunate ones when I look at things in perspective.

Jordan Thank you for that. I’m glad to hear you’re somewhat close to recovered. Anyway, I’m really interested in you can speak for yourself, obviously, but also just in terms of the discussions that happen in the group, what has your experience collectively been with Canada’s medical system? Are we ready for it? Do we know what we’re doing yet with this illness?

Susie Goulding That’s a great question and I think it sort of starts what we have to look at is how Canada reacted when the virus came to Canada and the focus of all efforts of the government were on the deaths and the recoveries. And there was never really a focus on any other issues as far as being sick in the medical community, as far as healthcare. So they really missed counting long COVID.

Jordan Is that changing now? It’s been two years.

Susie Goulding It’s slowly changing, but this is the problem. We’ve already accumulated this huge amounts masses of people and now we’re starting to deal with it. So it’s a very lagging situation where, if the government had proactively realized that this was happening then, now we wouldn’t be in this situation that we are with dire straits with people that continually growing and then we haven’t dealt with it. Like what are we going to do now?

So what’s interesting is that Canadian healthcare, there are different silos, like, right across the country. And the country really doesn’t work in tandem. Every province has their own healthcare and the way that they approach things. So it’s difficult to pass information along. And so the dissemination of information from the federal government just to get down to our G.P.s, it’s not happening at a fast rate. So there are still doctors today who have no idea of what long COVID is. They’ve never heard it. They live in communities maybe that didn’t have as many COVID cases. So there’s a gap of knowledge here where people who are ill are going to their doctors and their doctors are saying, well, this must be all in your head. Or I’ve never heard of this before, or they’re just not familiar because they don’t have the information given to them. So this is the gap of knowledge that I think that we’re dealing with because of the lack of communication and because of not jumping on things and getting things moving. So now people are dealing with their G.P.s that just don’t have the knowledge to be able to recognize and diagnose long COVID or even to believe them at some point. And it seems crazy that two years into a pandemic that your G.P. would not have any idea that long COVID exists, but it is still happening.

And so it’s very frustrating trying to reach out for health care exhausting as well as frustrating when the sickest that you’ve been in your life and you’re really just wanting to reach out for help and then you’re met with skeptical eyes saying, are you really sick or is this just something that you’re making up? Is it really that bad? And we just want to be met with good faith and with kind encouragement. And so it becomes really difficult.

Jordan My last question is, trying to help people like myself who are lucky enough not to, I think, know anybody struggling with long COVID or people who have not yet gotten COVID and have probably listened to you describe your symptoms and are pretty scared, frankly. What would you like the people who haven’t encountered it to understand about what long-haulers are going through?

Susie Goulding I think it’s been a really humbling experience, health wise, and just people really need to understand that a lot of people with long COVID are sort of going to be disabled and needing to have accommodations at work. And I’m trying to think of the word. And this is what’s so frustrating. So the word I’m trying to think of is, now I just forgot the question. Like this happens to me all day long and it’s just like simple words, but it’s about brain health and what’s going to happen in the long run. I’m having a lot of cognitive issues still and it’s hard to understand what’s happening. And again, so the more that I talk and the more the day goes on, the more my brain starts to shut down. And so if I really have to think about things I start losing my words a lot and other people have it in their energy output so if they do too much physically then they get slapped with fatigue. I get slapped with brain issues, like my brain just starts, literally, I can feel it just going it’s shutting down.

But yeah, so it’s scary because we just don’t know what’s going to happen to us in the future. It is moving in the right direction. There’s a lot of research that’s happening now but it just doesn’t meet the needs of really the reality of the situation is there’s hundreds of thousands of people. So it’s a much bigger issue than I think that they ever dreamed that it would be, and now we’re left scrambling trying to figure out how to handle this because it’s a mass disabling event. It’s moving in the right direction. There’s so many people who want to help and people that you spoke with for rehab and they do have a good understanding of the many symptoms that we have, but it’s just we’re going to need to put a lot of money into funding research and expediting it. Like long COVID needs to be a focus, it needs to be a priority, and right now it’s not.

Jordan Susie, thank you so much for sharing all this with us, and for being so raw, and I hope it gets better for you and for everyone. Here’s hoping.

Susie Goulding Thanks so much and it was a pleasure speaking with you today.

Jordan Susie Goulding, the founder of COVID Long-Haulers Canada. That was The Big Story.

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Thanks for listening. I’m Jordan Heath-Rawlings. We’ll talk tomorrow.

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