Jordan Heath-Rawlings: If you’ve never had COVID-19, obviously you’re one of the lucky ones. If you did have COVID and it was awful and you recovered and you’re healthy now, guess what? You’re still pretty damn lucky.
News Clip: The quality of life that I have now is probably about a two. There are days, I feel like a 90 year-old, 90-pound old lady. I’ve got depression now and anxiety, because of all this.
Jordan Heath-Rawlings: You have probably heard the terms long COVID or long haulers by now. Those are people whose symptoms stick around for weeks, or more likely months, and in some cases, a year or longer. How long will those symptoms stick around? We actually don’t really know. Will those symptoms ever go away? We don’t know that either. So what do long haulers need in terms of care and therapy and rehab in order to get their lives back? We are only just starting to learn that, there aren’t a lot of resources, and there is a long way to go. If you are a heart attack survivor, for instance, there are programs to help you rehab your cardio health. We have programs to recover from a massive knee injury or cancer or a stroke or whatever– any life-changing medical event. We can provide the care for those things because we know a lot about their typical recovery process. With COVID, we’re just flying blind. Not only do we not know what we don’t know, it’s going to take a heavy investment to find out, and then to provide the resources to actually rehab the thousands of Canadians who are currently suffering from long COVID. So should we maybe get started? Because it’s been almost a year now for many of these folks. And they are still waiting to feel healthy again. I’m Jordan Heath-Rawlings. This is The Big Story. Cynthia Mulligan is a reporter with CityNews. She covers the provincial government in Ontario, but she’s also obviously been covering COVID a lot the past year, including keeping up a dialogue with some long haulers. Hello, Cynthia.
Cynthia Mulligan: Hello, Jordan.
Jordan Heath-Rawlings: So here’s a question. This is a term that I’ve been hearing about and a lot of people have been hearing about for almost a year now. Do we have an actual medical definition for COVID long haulers? Or is it still kind of a nebulous thing?
Cynthia Mulligan: It’s still very nebulous. In fact, even though it’s been a year, doctors point out, it’s only been a year when it comes to fully understanding COVID. And they think that it’s going to be years to come. So we know that some people are impacted long after they are considered recovered from COVID. They are called long haulers. There’s a new term emerging as well that’s just long COVID. And the number of people that are estimated to suffer months later, in many cases a year later, from the debilitating life altering side effects, it’s staggering. In Canada one researcher that I was talking to believes that it’s 10% to 20% of all people who have had COVID. And this is whether they were– had mild symptoms and never hospitalized or were in ICU. And if you do the numbers, Jordan, it’s actually staggering. That means in Ontario alone, there would be 35,000 to 65,000 people who are considered recovered, but are still very much suffering from COVID.
Jordan Heath-Rawlings: How widely did the symptoms associated with long haul COVID range? You know, I think we’ve heard a ton about, you know, the acute symptoms and what to watch for and when to get tested. But when you speak to people who have been dealing with this for months, like, what are they actually dealing with?
Cynthia Mulligan: So it really varies from person to person, and even they will say, it varies from day to day. So many complainant brain fog, debilitating brain fog, where they can’t remember anything, they can barely string a sentence together. Others talk about lack of taste, or night jolts, where they wake up with these severe jolts or almost like a Parkinson’s-like tremors? Others complain of crushing fatigue. Like they can’t walk to a store and, you know, a year ago they were running 10km a day, and now they can’t make it around the block. They have to stop. It’s really all over the map. One young man described it as being somebody standing on your chest all day long and you can’t take a breath. From the people that I’ve been speaking to, they have had a year of isolation and feeling trapped in their bodies. And these were healthy, previously healthy people. Now, a year later, some of them are saying they’re starting to feel a little bit better, but it’s so painfully slow. So one woman, Lorraine Graves, told me with a big smile on her face, she was able to taste something sweet for the first time in a year.
Jordan Heath-Rawlings: Wow.
Cynthia Mulligan: I know. It’s shocking. Another sign of her progress– and this actually made me so sad– she said, well, now I can sit up in bed and I’m not on oxygen anymore. That’s her progress a year later.
Jordan Heath-Rawlings: And so these aren’t people who necessarily had like really awful cases of COVID, and they’re also not people who have had symptoms sticking around for, you know, two or three weeks or a month afterwards, you feel kind of crappy. These are people who are still dealing with it, like a year later.
Cynthia Mulligan: Exactly. And what’s interesting is, so these were the early victims of COVID. They came down with it, you know, in March when there was such mass panic and nobody really knew what to do. Many of these people have not been formally tested, and tested positive for COVID, because back in the early days in March, they weren’t testing people unless they had a travel history. None of these people did. So they were basically sent home from the hospital. None of them were actually in ICU or hospitalized for a great period of time. So they’re not the most severe cases. So the doctors have to still figure out how to unlock the mystery of COVID. It’s no longer just a virus that we believed only initially attacked the lungs. It can attack so many parts of the body. For example, the kidneys, the liver, the heart, the brain, the nervous system. They think that basically the immune system is overdoing it and almost attacking their own bodies. But they don’t know why and they don’t know who will get attacked, who will have this happen to, the age or what triggers it, or even worse, how to make it better, how to help them recover. We are hearing anecdotally– and so many studies will be needed to be done on this Jordan– but we’re hearing that more women are suffering from the long haul syndrome, than men. But doctors are saying, well, maybe it’s because women are more in tune with their bodies and more likely to speak out than men, who are more reluctant perhaps to raise this issue. We’re also hearing that some people who are COVID long haulers who get a vaccine are feeling better. So, would that help reset the system? We don’t know. And Dr. Anthony Fauci was talking about that last week as well in the US. So a lot more studies need to be done on this to see if that’s really the case, or if it’s just anecdotal, or if they were on their way to recovery anyways.
Jordan Heath-Rawlings: I’m going to ask you in a minute about, you know, what kind of help is available to these folks. But first maybe describe their journeys and what they’ve done. So, you know, you have COVID, and the symptoms don’t go away. So what do you do when they don’t go away? What did these people do?
Cynthia Mulligan: Well, they’ve been going from doctor to doctor to doctor. Sometimes they’re not even taken seriously. A common theme is that many doctors are telling these people it’s in their heads. And they’re saying, are you kidding me? We’re in the middle of a pandemic. This is not in my head. I was sick and I’m still sick. So one gentlemen, Alex Wilson, young man, two little boys, he was a carpenter. He was fit. He showed me pictures of him sailing and doing all this physical activity and it’s been a year and he still can barely move. He only survives on pain meds every day. And it’s taken a massive emotional, mental health toll on him. He’s now suffering from depression and anxiety. He has gone to so many doctors and had so many tests, which all come back negative. Nobody can explain to him what is wrong with him. And there’s this incredible fear that they all live with, that they might have a good day and then they’ll go for a walk and then it causes a relapse.
Jordan Heath-Rawlings: Oh man.
Cynthia Mulligan: Once they start feeling better, they’re living with this fear that they’re not really better. And in many cases he says it happens. Like Lorraine Graves was telling, me she lives in British Columbia, we did a Zoom call and she said, you know, I know that if I can gear myself up to do a Zoom call with you, say we talk for half an hour, 45 minutes, if I did a second Zoom call the same day, she says she wouldn’t be able to get out of bed the following day. So they have to pace themselves so very carefully. And nothing is certain anymore in their lives.
Jordan Heath-Rawlings: You know, I mentioned in the intro that we have developed rehab and therapy and programs for people who recover from other life-changing medical events, whether that’s, like, knee surgery or heart attacks or whatever. Are we moving to develop programs or therapy for COVID victims, long haul COVID victims?
Cynthia Mulligan: So if you compare Canada to the UK, the UK in November started setting up rehab clinics across the country. I believe they have around 81 right now. Canada has a handful. Let’s say six or eight. There aren’t that many. And what COVID long haulers are saying is that they’re geared more on research than they are on actual rehab. They are begging for rehab. Lorraine Graves, for example, can’t get rehab for her respiratory issues. And they say that they’re just not going to get better without it. In the UK, they have a website for long haulers to show them what the different symptoms are, the ongoing symptoms, and how to help them. We don’t have anything like that in Canada.
Jordan Heath-Rawlings: What kind of therapy do they do at those clinics in the UK?
Cynthia Mulligan: It’s a variety of things, because everybody needs something different. Like Lorraine Graves, she needs respiratory therapy desperately. She can’t find it anywhere. Now, we do know that the Canadian Institute of Health Research has announced that they’re going to do some research into how to predict who will get long haul, how to prevent it, and how to treat it. But that could take months and months to find anything of substance for these people. And their huge fear, Jordan, is that they are going to be forgotten. That once everybody is vaccinated, everybody’s just going to move on. And they’ll still be dealing with this long-term, life-altering impact. As Lorraine said, I asked her, are you hopeful that you’ll get your life back? And she said, I try not to think about it because I’ll just cry.
Jordan Heath-Rawlings: Have you asked anybody in government? I know you cover the Ontario government, but has anybody asked the federal government or the British Columbia government about what we’re going to do here?
Cynthia Mulligan: That’s my next step in this ongoing sort of look at long haul, Jordan, to talk to the feds about this. The Ontario government doesn’t even track how many long haulers there are. There’s no data. They’re not even tracking it. How do you help this massive group of people if you’re not even keeping track of them?
Jordan Heath-Rawlings: Well, and we don’t, as you mentioned off the top, there’s no medical definition for who would even qualify if you were going to track it, right?
Cynthia Mulligan: Exactly. Now we do know from SARS that there was a long lasting impact from SARS. The people who got it, they tracked them for several years and many did not fully recover, and many suffered what they said was PTSD, and that there were severe mental health implications from it. I suspect we are going to see, years later, the same thing with COVID long haulers. And I think that they need to be recognized. And I think there needs to be a concerted effort to help them. I think, you know, in the ongoing panic of COVID, and now we’re in the third wave– what officials are calling the third wave– you know, the emphasis has been on trying to get it under control, trying to prevent it, dealing with the hospital capacity issues, and getting people vaccinated. I don’t think there’s been a lot of thought into how we’re going to help the people who are still suffering.
Jordan Heath-Rawlings: Well in the absence of that, how can people in the community, or our neighbours, help people who are struggling with this? Because, to your point, if the numbers suggest it’s going to be tens of thousands of people in each province, like, we are going to know these people. They’re not going to be that invisible because there’s too many of them.
Cynthia Mulligan: Well, I think we have to take them seriously. I think we have to offer them, you know, mental support and help. You know, if it’s getting groceries once a week for your neighbour who has this. But I think they want to be believed. They want to be taken seriously. And they feel that a lot of people don’t understand what they’re going through and they desperately need that. That’s one first step. But they want people to speak out on their behalf. Otherwise, they feel that they’re not going to get anywhere at all. And they feel they need centres where there are multiple doctors that have different specialties so that you have somebody, if it’s your liver being impacted, or the brain fog, or, you know, whether it’s your kidneys, or the tremors that you have a different specialist that understands each of these parts of your body, and what the best treatment options would be. And don’t forget, you know, a lot of people don’t have coverage for rehab. Or if they do, it’s going to run out very, very quickly. So they need financial assistance as well. Many of them have lost their businesses, they’ve lost their livelihoods. Susie Golding was a florist and she cannot work, has not been able to work for a year. And she’s not making any money. Alex Wilson as well. He said he will never recover financially as a carpenter from all the lost work. And he doesn’t know when he’s going to be able to work again. But they can’t get work and they’re not getting financial assistance. And the scary part, Jordan, is doctors are saying younger and younger people are now getting COVID in the third wave, and they’re getting sicker, because it’s more deadly or causing way more side effects. So even if you don’t have the COVID long haul symptoms, the scarring of the lungs could impact people for the rest of their lives. So this isn’t over. And we have to understand that the third wave is hitting younger people who will have a lot longer to live like this.
Jordan Heath-Rawlings: We’ve been talking about therapy so far mostly in the physical sense. You’ve also mentioned mental health and PTSD and what kind of, you know, actual therapy will these folks need? And is there a branch of therapy that deals with this kind of thing? Like, it’s not really a chronic illness because we don’t know how long it’ll last, but it might be? Like, it’s just so confusing.
Cynthia Mulligan: It’s really confusing. And there’s no answer yet to that, Jordan. There just isn’t. There’s really nothing that has been created to help them physically and/ or mentally. There’s nothing right now for them.
Jordan Heath-Rawlings: And all the people that you’ve followed since this began, you began talking to them a year ago. You know, I’ve watched you kind of keep up with them month after month. You mentioned a couple of people have improved. Has anyone gotten better? Like fully better? Like actually gone and gotten their life back to the point where you’re like, okay, well, I don’t need you to be part of this project anymore, thank God. You know?
Cynthia Mulligan: No. Not out of the ones that I have been speaking to over the past year, nobody has said, Cynthia, I am a hundred percent better. They’re all still struggling. Now, some are struggling way more than others, but they are all still struggling.
Jordan Heath-Rawlings: Is there any– and I’m not asking you to be a medical professional here, just as somebody who’s talked to a bunch of them– like, is there any patterns that you see in terms of people getting better? Like, do you see most of them making at least small incremental improvements? Or is it just completely random?
Cynthia Mulligan: Every single one has said they are getting better, that they are seeing improvement. But that it’s still a very long way out to feel like they might possibly be able to say they are fully cured. And they resent the term that governments use as recovered because they said we’re not recovered. Like, please don’t consider us cured.
Jordan Heath-Rawlings: Do you think two years, four years from now, like this will be a new branch of medicine? Because it doesn’t seem to match anything that we’re familiar with.
Cynthia Mulligan: It doesn’t. I mean, SARS impacted way fewer people. We didn’t have the thousands and thousands of people impacted. So I do think that something needs to be done for these people, because there are so many of them. And we can’t forget about them. We can’t just leave them behind.
Jordan Heath-Rawlings: This is– now that we mentioned it, especially with vaccines rolling out– it kind of reminds me of the people of my parents’ generation, who spent the rest of their life with the aftereffects of polio before vaccines rolled out, right? Like a generation with, with a significant percentage of people, if not disabled than at least impacted for life.
Cynthia Mulligan: Absolutely. And in fact, Lorraine Graves mentioned polio as well. She made that a connection too.
Jordan Heath-Rawlings: Cynthia, thank you so much for taking the time to talk with us today. And keep tabs on those folks and let us know, because I know there’s probably a whole whack of people listening to this right now who really could use some good news about things actually getting better.
Cynthia Mulligan: I think a lot of people, let’s say all of us, need some good news these days. But yes, I will keep track and I will keep checking in with them. And one day I hope to be able to do a podcast with you on this and say, they’re so much better. Or at least, they’re getting the help that they need.
Jordan Heath-Rawlings: Cynthia Mulligan of CityNews. That was The Big Story, for more from us you can head to thebigstorypodcast.ca. If you want to search Cynthia’s name on there, you will find a heck of a lot of other episodes, all of them great. You can also talk to us on Twitter at @thebigstoryFPN or via email, firstname.lastname@example.org. And we’re in your podcast player, yes, the one you’re using right now, unless you’re on our website, in which case, great for you. But also you need to find a podcast player so you can follow or subscribe or rate us or leave us a review. Thanks for listening. I’m Jordan Heath-Rawlings. We’ll talk tomorrow.
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