Diagnosing, assessing and treating long COVID

Diagnosing long COVID, or post-acute sequelae of SARS-CoV-2 infection (PASC), is challenging for clinicians. With up to 200 possible symptoms, heterogeneous presentations and no definitive diagnostic test, the diagnosis is a clinical one.

In this episode, Dr. Kieran Quinn, a general internist and palliative care physician at Mount Sinai and Bridgepoint Hospitals in Toronto, emphasizes the importance of judicious diagnostic testing in patients with suspected long COVID.

Dr. Quinn, who is co-author on three “Five Things to Know…” articles published in CMAJ that cover diagnosing, assessing and treating long COVID, suggests that limited routine blood work and, occasionally, an echocardiogram or pulmonary function test may be sufficient to make the diagnosis without the need for extensive testing and consultations.

The episode also features the personal experience of Suzie Goulding, the founder of COVID Long Haulers Canada, a support group for people struggling with long COVID, who shares her journey with the illness and her ongoing recovery process.

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Transcript

Dr. Mojola Omole:

Hi, I'm Mojola Omole.

Dr. Blair Bigham:

I'm Blair Bigham. This is the CMAJ podcast.

Dr. Mojola Omole:

Today we are going to be talking about what we've learned about long COVID. Oftentimes when we talk about COVID, we focus on transmission and prevalence, but in this episode we really want to focus on long COVID.

Dr. Blair Bigham:

So we're going to start by talking to a patient who got COVID right at the beginning of the pandemic and has been suffering ever since, and then we're going to talk to an expert who is the author of the "Five Things To Know" papers in CMAJ. So Jola, I don't know about you, but I'm finding that I'm always wondering if vague symptoms are long COVID, and the trouble I have is that it could be anything, right? Are you seeing long COVID in clinic for people with chronic diarrhea or abdominal pain? How do you see people with long COVID?

Dr. Mojola Omole:

So, I actually have seen a few people that I've referred back to their family physician saying, "I think you should consider long COVID," because oftentimes patients come in and give me the history. They're having GERD-like symptoms is their number one complaint and just disturbances, whether it's diarrhea, constipation, chronic abdominal pain, bloating, and then they'll also mention, because I'll ask them “Any other  symptoms, any fatigue?” And they'll say, "You know what? I'm constantly tired. I can't get off the couch ever since I got COVID back in..." And that's usually when it clicks for me, because I'm like, "Well, you had COVID maybe a year ago and that ever since then it's been a constellation of symptoms with the fatigue, the brain fog, loss of strength." And so I often just write back to the family doctor that obviously I would scope them, because I thought that's what we're supposed to do, but this "Five Things You Need To Know" is actually quite informative that instead of making it a diagnosis of exclusion, if you have this criteria, you don't need to go through all the tests.

Because, oftentimes, they're sent to me to rule out is there something going on intra-abdominally in their GI system that's giving them the symptoms, but most likely it is all long COVID.

Dr. Blair Bigham:

And I'm so glad we have these "Five Things" articles to talk about today and to talk to an expert, because in the emergency department it is so tempting to go deep and to start digging and to refer, refer, refer. And so hopefully we can take some things away that help us simplify sorting out long COVID. Jola, should we jump right into it?

Dr. Mojola Omole:

Suzie Goulding contracted COVID-19 in March of 2020, at the very beginning of the pandemic here in Canada. Nearly three years later, she continues to experience a wide range of symptoms. Suzie's the founder of the COVID Long Haulers Canada, a support group for people struggling with long COVID. Suzie, thank you so much for joining us today.

Suzie Goulding:

Great, thanks so much for having me.

Dr. Mojola Omole:

So Suzie, let's just go back to March of 2020, when you first contracted COVID. What were your symptoms at that time?

Suzie Goulding:

Well, it started off as an ear, nose, throat kind of cold. It was nothing that was too concerning, overly, and four days later it turned into a barrage of symptoms that would continue to ebb and flow, and more symptoms to come on. So it started off as ENT with a paralyzed throat, then a terrible cough, a pain in the ear. I had what I thought was a sinus infection, did two courses of antibiotics and nothing touched that. I had difficulty swallowing. It was like I was choking on things as I tried to swallow any liquids. The cough lasted for weeks and weeks. Then it went into my digestive tract and I had symptoms of GERD with terrible gas coming on and heartburn. Then it went into the flu, sort of, with stomach pains and cramps and diarrhea, went into my heart where I was having chest pains, tachycardia, irregular heartbeats, atrial fibrillation. It felt like I was having cardiac arrest at one point. It was pretty scary. It was really disconcerting.

Dr. Mojola Omole:

I can't imagine. So did your first acute symptoms, did they ever settle down or is it just some just rolled up on top of the others?

Suzie Goulding:

Some of the symptoms settled down and some of them stayed, yes. So the heart symptoms I'm still dealing with today, the neurological symptoms I'm still dealing with today. I have episodes where I have atrial fibrillation, tachycardia, regular heartbeats -  that I deal with regularly, but not every day, sort of on and off. And then I have a lot of brain fog, which really doesn't describe the way it affects your memory. It's feels more like having Alzheimer's or dementia. And then there's my throat still isn't back to pre-COVID health. I still have problems swallowing and just feels like the one side is much weaker than the other.

Dr. Mojola Omole:

So what was it like at the worst for you? Can you describe what a day in your life would feel like, not necessarily feel like, but what you would be going through?

Suzie Goulding:

Well, let me take it back to when I was in the throes of the virus, and those days were just really life-changing. I wasn't able to move off of a couch. The fatigue was so great. Just to lift your head or to get up to decide to go to the washroom to brush your teeth was just a terrible, extremely wiping experience. I just laid on the couch for months and months. The brain fog was really debilitating. It was really difficult to drive. I was a hazard in my own house. I left the stove on and almost burned the house down. I would forget when I was speaking, mid-sentence, what I was talking about, words were really difficult to pull out of my mind. At one point, I forgot my son's name. And, yeah, it was really difficult just doing things on the daily. Now, things did resolve, some symptoms did resolve, like the ear pain and the sinus issues. Those tapered away. The gastrointestinal issues did get less, but now I have GERD where I can't eat a lot of the foods that I used to love. So I have to change my diet completely. And yeah, just living with it, symptoms come and go, and so some days I'll be having great days where I feel like I'm 90% recovered, and then I'll go through phases where I'll have a relapse and feel like I am dealing with things back in 2020 that I was dealing with. So it's really the rollercoaster ride. The “ronacoaster” is what people call it.

Dr. Mojola Omole:

Wow. That sounds harrowing to be quite honest. How did your family physician initially respond when you came to them with your constellation of symptoms?

Suzie Goulding:

It was early in the pandemic, and really not a lot was known about COVID. It was known to be a respiratory issue. So I didn't have any of the telltale symptoms. I didn't have any shortness of breath and I didn't have any fever. So I went to her with these bizarre symptoms that were happening to me and we both shrugged our shoulders and said, "I don't know." I didn't get much help. I did get the support that I needed from her, because she said, "You can get through this. I'm sure you're fine. You don't have a fever. You don't have issues with your breathing. You don't have COVID. Don't worry about it. Don't worry. You'll be okay." So she tried to help me as best she could without any knowledge of this new virus and what was going on, so we were both left out in left field, except for I was the one who had the lived experience.

Dr. Mojola Omole:

Of course, eventually you did find some therapy that helped. Tell us more about that.

Suzie Goulding:

Right. Well, through the work that I do with the support group, I was in contact with some researchers out of McMaster University, and they had something called VoxNeuro, which was an executive functioning testing. This was facilitated out of the Pillars of Wellness in Burlington, and so I went in for an assessment to evaluate my executive cognitive functioning. And I did the testing and it showed severe deficits in all areas. And so I was able to access a plan of action of rehab in the clinic. They were starting to treat long haulers, and they took me on as a case study. And so I was able to get care from a physiotherapist, an occupational therapist, a naturopath, counseling, speech therapy, and acupuncture. And they all worked together on my symptoms to try and alleviate some of the issues that I was having. And so it was a wonderful experience to be able to access care... It was a clinic that dealt with a lot of brain injuries, that's their specialty, and so I ended up in the right place at the right time.

And so I did receive this care, and many of my symptoms were helped from the care that I received.

Dr. Mojola Omole:

How soon after you started the treatment plan did you start noticing a difference?

Suzie Goulding:

Well, I was in treatment for three months and I went sometimes three times a week, and I really noticed about the third week that I was maybe feeling some differences. By the fourth week it was noticeable. I had issues like balance that was very challenging. I was falling over a lot. It was difficult to read. And what they realized was that my eyes weren't tracking properly, so I did a lot of work with exercises for that, specifically. I did a lot of speech therapy as well as the acupuncture. My body responded very well to the acupuncture. And so, yeah, a few symptoms, four weeks, five weeks, six weeks really started to improve.

Dr. Mojola Omole:

It's almost been three years since all of this started for you, and if you were to look back, what would you say would have made this experience easier for you, more tolerable for you?

Suzie Goulding:

I think one of the main things that would've made things easier would be to be believed right from the beginning. We know now that most people don't have positive PCR tests, and doctors should be able to clinically diagnose patients. So I think if that had been the case, then it's easier to access care.

Dr. Mojola Omole:

Your family doc, did you feel as if they thought that your symptoms weren't real?

Suzie Goulding:

No, I never experienced that she thought my symptoms weren't real. She just never would say that they were from long COVID. One minute I would go to her and she'd say, "We can't say that this is COVID," and then the next minute she'd say, "Well, I can't say that you didn't have COVID." So it was a little bit exasperating not to have someone believe in you. And even not just your doctor, but friends and family. And there's just so much dismissive behavior that people... There's a big stigma living with long COVID, and people just really forget to be kind and compassionate towards people who have chronic illness, and especially when it's an invisible illness where brain injuries is something that you wouldn't know unless you had it, what's going on. It's difficult to see what's happening in these people's bodies.

Dr. Blair Bigham:

Suzie, tell me more about how you came to create the support group and what that's meant to you.

Suzie Goulding:

Well, in June of 2020, after I made it to the hospital and - finally getting PCR tested, the tests came back negative. And I approached my doctor and she said, "Well, there you go. You never had COVID. You're fine. You'll be fine." And at that point in time, I knew that there was a window of opportunity for testing and that there was no way I could get a positive test. So I felt like I knew more than she. And so I just wanted to reach out to find other people who were not recovering, like myself, and to be able to speak with one another and find out what the heck was going on, so I started a support group and people started to join and, shortly after people started joining, the media reached out and wanted to hear our stories.

And we grew to a group of 18,000 members, and now we're networking and collaborating with the research communities and we're a ground for recruitment for them, and some of the admin team taking courses at a University of Calgary to become PACR researchers, patient engagement community researchers, and we're just finishing up our study on long COVID. So the support group is really a safe place for people to come to be acknowledged. It's judgment-free, it's friendly, and it's a very supportive community. It's also full of information that we have collected for three years, the latest of all of the research papers, of media interviews, the latest seminars and videos of what's going on in the long COVID world. And so there's a lot of information. And so people share their stories and share their pain. People are really suffering. There's a sense of grief that people go through with losing your old person. And so trying to find who you are and what you're capable of and how to live your new life in your new body is quite an experience.

Dr. Mojola Omole:

I think that really sums it up really nicely. Thank you so much for sharing your story with us. I think that it's really important to hear people who are living with long COVID tell their stories in such a powerful manner, so thank you so much for sharing that with us.

Suzie Goulding:

You're very welcome. Thanks so much for having me.

Dr. Mojola Omole:

Suzie Goulding is the founder of COVID Long Haulers Canada. She joins us from Cambridge, Ontario.

Dr. Blair Bigham:

Dr. Kieran Quinn is co-author of three Five Things to Know articles in CMAJ looking at diagnosing, assessing and treating long Covid. Kieran thanks for joining us.

Dr. Kieran Quinn:

Thanks, Blair. It's really my pleasure to be here.

Dr. Blair Bigham:

Let's jump right into it. We just spoke to Suzie who has been suffering from long COVID, and she describes a very wide range of symptoms: neurological, GI, constitutional. How common is that, and what is the most common presentation of long COVID?

Dr. Kieran Quinn:

It's a great question, Blair. Sadly, people suffer with many different symptoms. There's over a hundred symptoms, some people would say 200 symptoms, that people with long COVID experience. Certainly the by far and away the most common one that people tell me who whom I look after, including Suzie, is fatigue. And that fatigue is not simply the kind of fatigue that I might describe after staying up too late on a night on call. It's a different kind of fatigue related to energy reserves, and it's commonly called post-exertional fatigue or post-exertional malaise whereby even mild exertion, either physically or cognitively, can precipitate a prolonged deficit of energy where people have a one or two day hangover almost of no energy. And you can imagine how that might affect their day. If they're doing something simply trying to look after their children or going to work or supporting a partner, that can result in devastating fatigue that goes for a long time. The other common symptoms and things that people tell me about are shortness of breath. It's a respiratory virus. It's common that people have respiratory consequences.

There are sleep disturbances, mood disturbances with anxiety and depression, foggy thinking, this cognitive slowing or brain fog as people have called it, and heart palpitations or a racing heart. Those are among the most common. But as I said, the list is immense.

Dr. Blair Bigham:

So if someone comes into the emergency department and says they have fatigue and brain fog, I mean, I'm doing a CAT scan of their head, I'm checking their CBC to see if they have a GI bleed, I'm checking their urine for UTI. How do we diagnose long COVID when its symptoms are somewhat overlapping with so many other conditions?

Dr. Kieran Quinn:

Absolutely. They're very heterogeneous. Everybody has a different mix of symptoms, and I think that's one of the reasons it's so challenging for us as providers to sort out and help people, especially in the emergency room setting, like you said. 

Let's talk about the definition, which is evolving even as we speak. So in 2021, the World Health Organization proposed a consensus definition based on a panel of over 200 people with lived experience, caregivers, researchers, clinicians, policymakers, and what they arrived at was that long COVID is defined as persistent or lingering symptoms three months or longer after somebody's suspected or confirmed SARS-CoV-2 infection, and that those symptoms last for at least two months in duration. Finally, that they're not due to some other underlying medical condition that somebody may have. And I think that gets to your initial question or some of the challenges we face when you have non-specific symptoms or overlapping symptoms with other conditions, is how far do we need to go to try to figure out or rule out the other potential causes of that?

Dr. Blair Bigham:

Do they have to have had documented COVID? Let's say they don't have a RAT or a PCR from when they were sick and it's three months later. Are you sending off antibodies? Do you have to know that they had COVID, or can you just go based on their description of what's been going on?

Dr. Kieran Quinn:

Well, I think a lot of it comes down to people's comfort level with diagnostic uncertainty, or comfort in having a limited set of investigations to make a confident diagnosis. And I think one of the issues I see in current times is that people and providers are heavily or increasingly reliant on the diagnostic tests to tell them the diagnosis when, as we all know, it's a history and physical that are really the most important aspect. That being said, I think if somebody has a good story, good history of a clear respiratory like illness in the last couple of years, it's almost always going to be COVID in these days, whether they had a PCR or a rapid antigen test to confirm that. And then they have these symptoms that start to come up beyond that, and they don't have an obvious diagnosis like heart failure that seems to be decompensating staring at you in the face, then I think one of your leading differential diagnoses needs to be long COVID. 

How far should you go to investigate that? I mean, I think you have to use your clinical judgment and incorporate the values and preferences of the person in front of you. But in our articles and in our experience, myself and Angela Chung and Fahad Razak, who are the co-authors with me, in treating people with long COVID, often it's a very limited set of routine blood work and occasionally maybe something like an echo or a pulmonary function test, depending on the symptoms. And most of the time that's all you really need to make that diagnosis without a long cascade of other tests and consultations. And I think that's really important just to highlight, because remember the fatigue that you can precipitate by putting people through activities to get these tests and consultations done can leave them with nothing. We describe it as like waking up with an iPhone or a smartphone battery that's 5% charged and you have to somehow figure out how to get through your whole day on only 5%, and when that runs out, it's like a day or two to recharge it. So it's just, I think, important to keep that in mind.

Dr. Mojola Omole:

So Suzie talked about doctors not believing or just trying to find out exactly what's going on with her. How common is that a complaint amongst your patients?

Dr. Kieran Quinn:

Unfortunately, quite common. Hopefully increasingly less common with time. A lot of the advocacy groups have described that as feeling like they've been gaslit by their providers. And I think it's unfortunate that we as healthcare providers hold a special place in people's lives that they need to trust us that we have their best interests at heart and I think, in some cases, for a variety of reasons, that may not always be the case when it comes to busy practice or difficulty trying to sort out people's symptoms. I can't imagine, actually, what it must feel like if you went to your healthcare provider and they told you it's all in your head and it's not a real thing that you're experiencing. But again, I think that that speaks to our limited understanding of this new condition, and the opportunity that we see for improving education of society, including our healthcare providers, to understand what this is and how to validate and listen to people and support them as best we can.

Dr. Blair Bigham:

Kieran, once you've landed on that threshold to say, "Okay, this is long COVID. I'm not going to go chasing other diagnoses," what can you provide patients to help them experience improvement?

Dr. Kieran Quinn:

So I think it starts, and I would say this is the most important thing we can do for people right now in the current era, is simply validating that what they're going through is a real thing. We just simply don't have a test to give you a number and say, "This is the abnormality and it's definitive." This is a clinical diagnosis, just like heart failure is a clinical diagnosis, and we are confident in that. Beyond that, unfortunately, currently there are no approved treatments to actually make a difference in people's quality of life or any other outcome really in long COVID. What we do have are supportive treatments that are directed at specific symptoms, which we try to outline in the potentially treatable or potentially modifiable symptoms, which we highlight, which are sometimes common but not always the most common. That's something at least we can do something about. 

So for fatigue, we use a framework, the four Ps, pacing, positioning, planning, and prioritization, which is about energy conservation strategies and how to help people. There's some interesting work by my colleagues in rehabilitation medicine who are trying to look at using smart devices like smartwatches and things to titrate activity levels in a structured activity program to avoid a crash, but trying to build up their endurance. But it really comes down to those four P's that we counsel people, and that's easier said than done in a busy life where you're working and you have kids or other responsibilities. There are symptom-directed treatments for arrhythmias, for sleep disturbances, for mood disturbances. We outline those in our article. But I think the main point is that it's really all symptom based right now, and we're working hard. We have a trial we're about to launch, Angela and I in Toronto, called the RECLAIM Trial. There's a few other trials going on around the world looking for treatments, but it's a race against time right now where there's lots of people suffering and we don't have anything to offer.

Dr. Blair Bigham:

Have you found any correlation between treatment of acute COVID, like if they received a certain therapy, I don't know, Paxlovid, remdesivir, if they got budesonide puffers, if they got antidepressants, anything in the acute phase that you've identified that seems to ameliorate or reduce the impact of long COVID?

Dr. Kieran Quinn:

That's such an important question that until a week ago was top of my mind. Can we modify this ahead of time? Can we reduce your risk of developing it? The RECOVER Trial folks published a secondary analysis of people enrolled in RECOVER, which was dexamethasone for acute COVID, and showed that people who got dexamethasone early on in the trial, compared to those who didn't, had a lower likelihood of developing long COVID in the long run. Now, it's a secondary analysis of a randomized trial, so it's not designed to answer that question definitively. It's more of hypothesis-generating, and it's also if I have a patient with long COVID now, there's not much I can do to give them dexamethasone back in time if they didn't get it. So I think it highlights the opportunity, again, for some more investigations into that. The other thing-

Dr. Blair Bigham:

And that's so interesting, only because in the ICU we're terrified that steroid use causes weakness and critical care biopathy and prolonged hospitalization.

Dr. Kieran Quinn:

Risk and benefits to everything, right? 

It's a pre-print, so it's not yet peer reviewed, but there was an interesting, again, secondary analysis done, that looked at Metformin versus Ivermectin and one other medication that I can't remember off the top of my head, and placebo. And it showed that Metformin may have reduced the likelihood of developing long COVID if you were treated during the acute phase, whereas Ivermectin had no effect and placebo, obviously, had no effect. So again, a target to look at. There's some biological plausibility for it, and it probably needs to be tested in a formal randomized trial.

Dr. Blair Bigham:

For people who do end up with long COVID, what type of prognosis do they have? How long does it take for them to get back to their baseline?

Dr. Kieran Quinn:

Probably one of the most common questions I get now, Blair, is, "Am I going to get over these symptoms," or, "When are they going to go away?" And the challenge that we have is that COVID and long COVID are a new disease. We don't have 50 years or 20 years of follow up to figure out what happens to people. We have two and a half, or three years now, right? So I think the two most useful studies that I've seen for that, the first one comes out of Wuhan, which is the original Wuhan experience, January, 2020. So no vaccines, very sick people. They were showing that after a year about 50% of people still had symptoms, and it was a similar number two even two years later in that cohort. Those were all hospitalized individuals. In the Canadian antibody survey, it's about the same, in fact. About 50% of people still have lingering symptoms a year beyond their suspected or confirmed infection.

Dr. Blair Bigham:

Amongst all people with COVID or just amongst people with long COVID?

Dr. Kieran Quinn:

No, amongst all people who had suspected or confirmed. So the survey just asked everybody randomly, a random sample, "Did you think you've had COVID?" "Yes." "Okay, do you have symptoms three months later?" And of people with long COVID, so of that 15%, half of them still had symptoms a year later.

Dr. Blair Bigham:

Wow. Kieran, thanks for joining us.

Dr. Kieran Quinn:

Hey, thank you very much for having me on the show. It was really enjoyable.

Dr. Blair Bigham:

Dr. Kieran Quinn is a general internist and palliative care physician at Mount Sinai and Bridgepoint Hospitals in Toronto. He's also the co-author of three articles in CMAJ looking at long COVID.

Dr. Mojola Omole:

So Blair, what I got out of this is I'm now scared to get COVID again because the threat of long COVID is really scary and debilitating.

Dr. Blair Bigham:

Yeah. I think long COVID has been in the news so much that when I first read about it, I was like, "Oh no, here's some media hype. What is this going to be all about?" But it really does seem like so many people are just worn out by this virus for so many months after, and we're really lacking that recognition and validation of that experience.

Dr. Mojola Omole:

100%. Contracting COVID, it's a mass disabilitating condition, and we have a lot of people who are, all intents and purposes, disabled because of contracting COVID. And I don't necessarily think that we in the medical community see that or are able to validate that for patients that, "You know what? Yep, what you have is long COVID and this is going to change your life, whether for a year, whether for three years, or maybe permanently."

Dr. Blair Bigham:

And because we don't have a frame of reference for this, it's not built into the way we went through medical school, I guess we are getting all these people to take adventures to see a gastroenterologist to get scoped, to get all sorts of other workups, and maybe we can all adjust sort of that risk tolerance that Kieran was talking about and say, "You know what? Common things being common, this sounds like long COVID."

Dr. Mojola Omole:

I actually think now that if I feel pretty comfortable that maybe this is not something functional in terms of GI to say, "Let's follow up in three months," or, "Let's follow up in six weeks." Oftentimes we don't tend to do that, and maybe doing that actually could be very helpful, like if you have a good follow up that, you know what, this relationship is still ongoing that we can come back to revisit this, and if this is still as acute as it is now or has changed in certain ways, maybe it is what we first thought it was, which was long COVID, or maybe it is something else.

Dr. Blair Bigham:

Yeah, I think it's easier said than done, though. I mean everyone goes to their toolbox, and if you come to me a month after COVID in the emergency department, there's a good chance you're getting a CTPE, because just in my heart I have to rule out pulmonary embolism in people who have had COVID for a month. I don't know, it's going to be really hard for me to adjust, but I'm going to try.

Dr. Mojola Omole:

Exactly. But I think that that's all we can do, is to all take the small steps. As he said before, these are people whose batteries are at 5%, and we're asking them to do very sometimes invasive, at certain times, very energy-depleting tests that might not be necessary just to say that we crossed our I... Crossed our I? No, we dot our I's and we cross our T's.

Dr. Blair Bigham:

Well, there's new I's and new T's in this COVID era, and long COVID is something we all need to, I guess, incorporate into our mindset in the way we practice and going forward, because it sounds like it's just way more common and way more, I don't know, annoying and debilitating than we appreciate. 

That's it for this week on the CMAJ Podcast. Please remember to like and share our podcast wherever it is you download your audio; it goes a long way to helping us spread the message and share the insights that we all derive from our podcast and the guests that we have on it. I'm Blair Bigham.

Dr. Mojola Omole:

I'm Mojola Omole. Until next time, be well.