Burden of disease - Long-Covid and other post-infection syndromes

Aida Bakri: 0:00

Welcome to ESWI Airborne. This podcast series on the burden of disease is made possible thanks to the kind support of AstraZeneca, BioNTech, GSK and Roche.

Clare Taylor: 0:32

Welcome everyone to ESWI Airborne. Today we're talking about the long-term management of acute respiratory virus disease. By now most of us have heard of long COVID, but other respiratory viruses also linger and cause longer-term complications, and we're here today to learn a whole lot more about it. This episode is one of a three-part special on the burden of disease of acute respiratory viruses brought to you by ESWI, the European Scientific Working Group on Influenza. I'm your host, Clare Taylor speaking, and I'm delighted now to welcome our guests to the ESWI Airborne studio. First up, Marco Groeijenbier, surely one of the busiest men in the lowlands, I would think. Marco practices acute internal medicine and intensive care, with special interest in acute care and infectious diseases. He is an ESWI board member and a regular guest on ESWI Airborne. Good to see you again, Marco.

Marco Goeijenbier: 1:26

Thank you very much, Clare. Always a pleasure.

Next up, Norah Casey, an all-round wonder woman, I would say. Broadcaster, entrepreneur, human rights campaigner, woman of our time. And, Norah, as a fellow Irish woman, you're especially welcome here today.

Norah Casey: 1:42

Thank you very much from Dublin.

And last but not least, Merel Hellemons, pulmonologist and researcher with a special interest in long COVID. Welcome Meral.

Merel Hellemons: 1:55

Thank you very much. Very pleased to be here with you.

Well, great, I'm really looking forward to this one actually. And to jump right into this, for most of us, a dose of the flu or of COVID will last maybe a couple of days, or even a couple of weeks. When does this turn into long flu, long COVID, and how is it identified?

Yeah, well, I think that's a really good question, Clare. And well, honestly, I don't really know. For most of the complications of any viral or bacterial infection that's the biggest question. Who gets a secondary pneumonia, who gets a myocardial infarction due to an infection? And studying the reason why certain complications occur in specific groups or specific people also might help you understanding the way viruses or bacteria make us sick, but why this is the case, I have absolutely no idea.

Merel what's your take on this?

Well, it's a difficult issue. We're talking here about post-infectious illnesses and Marco's take is that all respiratory viruses can cause long-term symptoms and consequences. We do know that long COVID is different than recovery after flu. Already early on in the pandemic the CDC in the States did telephone interviews with patients that tested positive for COVID and interviewed them for several weeks how they felt and where they found that in influenza 95% of the patients fully recovered after two weeks. In more than one third of the patients after COVID they had residual symptoms. And I think very early on in the pandemic this was the first indication that COVID is different than many other diseases and recovery is delayed. And we are still discovering many more things about COVID and the effects it has.

Is that really the case? I think this is really interesting, but this is like maybe comparing apples and pears a bit, because everybody got COVID and not everybody gets influenza every year, right?

Well, it's absolutely comparing apples with pears, because the viruses they affect differently, but also the baseline immunity of the population is different. But COVID does things to our bodies that differ from other viruses, even though there's also post-infectious syndrome associated with Lyme disease, with Q fever, with many other diseases. But COVID does something that may long-term affect your body and really have consequences.

And what do we know about the prevalence here? You just mentioned, Merel, a couple of statistics. There are like 95% of people who get the flu will recover fully. One third of people experience longer symptoms from COVID. Do we have any established numbers for the different viruses?

So for different viruses it's very difficult. I think that's very difficult to say. I think I truly believe that if you have bad luck, any infectious disease can give you indeed long-term complications. But if we really look at the long COVID numbers, then we have to look at Merel because she's the specialist here.

Yeah, Clare, thanks, but the example that you just gave was after two to four weeks and there have been many population studies looking at prevalence and the truthful answer is we don't precisely know how often patients will get lingering symptoms after COVID. Best estimates are I think the most honest estimates are between 8% and 10% of patients will still have symptoms after three months. And I think 10% to 20% of them will continue to have symptoms for more than one year. So this is quite considerable numbers. And then to come back to Marco, how does this compare to other respiratory viruses? Actually, there was a very elegant study done in Holland last year by the RIVM and they studied patients that presented with symptoms of respiratory infection to the test clinic and they compared the patients that had COVID had a positive test for COVID versus all other viruses that they may have had and there was a significant increase in persisting symptoms after three months. So I think it is different than other infections and also the literature on biological mechanism that emerge and the things that we see in the clinic on orthostatic intolerance. Well, things are really different with this virus.

I absolutely agree there that long COVID is a big problem and that with this virus specifically. But the way I'm looking at it more is that any new virus without pre-existing immunity if the group is big enough, the infected group is big enough enough number of infections, eventually you get the same complications. It doesn't really matter virus specific, it's just a no pre-existing immunity and some kind of chronic infection. Because I think if you do the same study for epstein-barr you would find very interesting stuff also

Merel, this is a special interest for research, interest for you. When did you first, when did you first, kind of home in on long COVID as a topic?

It actually happened by accident, during the first wave of the pandemic, part of our team was sent home to make sure we don't got infected and we were spare for the rest of the team. And from home we started setting up an outpatient clinic for all the patients that had been admitted to the hospital because we were fully unknown on how they would recover. And we as pulmonologists, we feared large numbers of patients with persistent lung injury and fibrosis. So we had this outpatient clinic continuing up patients and, to our well, pleasant the lungs that looked severely injured on the ICU. They recovered quite nicely. It took time but they recovered. But every single patient that we saw in our clinic said I'm so fatigued and I have so many memory problems. And at first we said well, this is because of your ICU admission, you've been very sick. But also patients that had only been shortly admitted to the wards with very little illness, they presented with this lingering symptoms even after three months. And at the same time patients started being referred to our clinic from GPs, patients that had mild disease in the community, with exactly similar complaints, and it started to be a pattern. And I was really grasped by the intensity of the symptoms and how much it affected patients' lives. And that's where these interest sparked. And, at the same time, patients in the community were gathering together via social media and finding each other and describing the same phenomena, and, to my knowledge, this is the first time that patients really come up to doctors with look, this is what we have, we all have the same thing. And many things that we've learned, we've learned them from the patients. So this is where the interest came from and it still sparks my interest, because we cannot help these patients with a definitive cure yet and it continues to be a problem for many.

This is really fascinating, and you know not only the sort of collaboration on the response, but I think we're particularly lucky today to be able to talk about what you referred to the effect on people's lives, how it is affecting people's lives. Norah, you first came down with COVID in January of 2022. What happened then?

So firstly, thank you for putting me between two medics I don't have to pay for. So I'm hoping I'll get more out of this than everybody else. And also for sharing my story, because I think the only way that I'm learning about long COVID or my particular syndrome is by listening to everyone else. So it's great, I am relentlessly healthy it's the first thing to say. I hadn't seen my doctor for two years and I was double vaccinated with a booster when my sister decided to get married last Christmas and only 50 of us were allowed to attend. But of course we all gave each other COVID. And mine was the mildest in the family, I think. I work in TV and radio and we were in lockdown and I was continuing to work during my experience of COVID. So my mother kept telling me how I was disgracing everyone else in the family who were taken to their beds and were exhausted. So mine was really mild. But about four weeks later I go for a walk on the beach every morning, I found it really difficult to actually do the whole walk. I had what I will medically describe as jelly legs. I felt really wobbly and dizzy and nauseous, just not myself pounding headaches. So when I my My blood pressure was 250 over 160. And my GP wouldn't let me leave the surgery. And then, as they began to test other things, they admitted me to hospital for some time. What did I present with? Almost all of my symptoms were related to my heart, my brain and my lungs, so with inflammation, and I was in a general cardiac ward that didn't know what to do with me. There were still traces of COVID in my blood, mild but still traces and I said at the time I felt somebody was playing ping pong with my body that various things would go through the roof, like my blood pressure. The following day it would be down at 110 over 70. Lots of my markers were going very high, but two days later my bloods were showing a different story. So it was quite a strange experience. My story began to change when I met the professor of long COVID in Ireland. His name is Seamus Linnane and he took me on pretty quickly and said you aren't a typical long COVID patient. You're having an acute metabolic crash, more like a cytokine storm, but we're not entirely sure what it's going to unravel like. But I think I'll get you out of all of these acute problems in six months.

About five weeks after I came out I was fainting a lot and they thought my sugars were high because I was on steroids. But eventually they did all of these tests and discovered that the same antibodies that were fighting fruitlessly the virus had destroyed the insulin producing cells in my pancreas. So I was almost immediately a type one diabetic. It was by far the most disruptive on my life. My endocrinologist, I've collected loads of doctors, as you can hear, but my new endocrinologist told me that as the cells were dying for some reason, they were erupting a bit of insulin every now and then, randomly. So I could take insulin because I was going to eat and then suddenly they would produce insulin and I would faint. So there was a lot of hypos, particularly nocturnal hypos. It's still very unstable. I think it'll be another year before it stabilises.

The other thing, I had some surgeries, some damage to my eyes and my optic nerve here, sorry, you can see that I have a little bit of brain fog, which I should have admitted at the beginning, and lumps like under my lymph nodes came up on the back of my neck. I had all of them removed. So I spent most of last year in and out of hospital but kind of trying to get back up to speed with walking not fully there in terms of tiredness and fatigue. So I think I see Professor Linnane all the time and it looks like I have a mixture of maybe a bit of the traditional things of long COVID but a lot of acute metabolic problems as well, kind of merged into one. The one thing I have which I never had before is anxiety, and I speak for a living in front of thousands. I do television, I do documentaries. I've never had that feeling before of, you know, I could walk into a room and think I'm okay, but by the time I go to the podium I'm shaking quite a bit. I have a dry mouth, I feel my heart is hammering in my chest. So I try all kinds of wellbeing things now to try and lower my anxiety. And I did meditation just before we talked this morning. Things have lingered a little bit longer for me. So I'm just out of hospital after a flare up.

I think I mentioned I was in for Christmas. I've learned not to plan anything. I always say make plans and God laughs, and that's so true for me. So I'd say I sometimes think I'm on the mend, but in January, for instance, I was building my walking up and I walked 120 miles in January, which I was celebrating about and telling everybody that I got my walking back up again. I have a lot of muscle wastage in my legs, but I haven't been able to walk for eight weeks because I just suddenly got hit with immense tiredness and every morning I would think, well, I go and walk the beach or you know, just take it easy. And they take it easy one every time.

Thank you so much for sharing it with us, for telling us your story, because it's, I mean, you are an expert in your own health, you know, and seeing as we have these other experts that you don't have to pay for here, I'd really like to hear from Marco and from um Merel on there, like, your response to do you see many cases like Norah's? I s this something you're very familiar with?

Well, to start, I'm absolutely not a long COVID expert but I did a lot of COVID and, like Merel already briefly introduced, we see this post-intensive care syndrome, which has some aspects of COVID, but the case Norah described is so immense and very, medically speaking, impressive. You're thinking of all these different pathways that might be affected, but maybe Merel can add something.

Merel, do you recognise cases like this?

Well, Norah, thanks for sharing your very impressive case. I have to agree with that and I do also agree with your professor that it's not a very typical case. It's rather severe on the biological front. It has many aspects of cytokine storms and autoimmunity and we know that COVID can cause diabetes and other features in its storm in recovery. But there's also some typical aspects. The things that we see often in COVID is fatigue, brain fog, exercise intolerance and worsening of symptoms after rigorous exercise, causing patients to slow down and to pace and relapsing, remitting disease also related to overexercising. These are very typical aspects that really affect patients' lives and they tend to have multiple problems affecting multiple organ systems that they see various doctors for, and it's very hard to find doctors that use an integrative approach. That oversee the whole problem. It's a very complex disease and it does not really fit into our medical specialties.

I'm really glad you brought that up because I'm interested to know, I mean Norah especially from you as a sort of first-hand experience, you know, the owner of your impressive case. What did you feel the level of understanding among the healthcare professionals that you met on your journey was like?

Obviously, when I was admitted in February last year, nobody really knew what to do with me and I had various consultants coming in and out, you know, to see me and there was no understanding whatsoever as to what had happened to me, other than eventually they kept saying it has to have something to do with the fact that I had COVID four weeks prior, but it came very quickly after COVID. So they kept saying, you know, I mean four weeks later and it was quite acute, what was happening to me. I did feel that my life changed when Seamus Lianne took me on. And what Meryl said is true I have an ophthalmic surgeon, a general surgeon, an endocrinologist, and I have Seamus and luckily for me he talks to all of them. And when I do bloods they share it between themselves, especially in the early days, and so I did feel firstly, that he had an understanding of long COVID, but he'd also sort of read all the studies on diabetes and the link to COVID. So the biggest difficulty now is when I was admitted again last week. There still is that element of I was admitted as an emergency, so of course I wasn't admitted under my own consultant and I was back in a general surgical ward who were sceptical of the link to what was happening to me, back to what had been going on with me over the last year. And to me it seemed very obvious that I've been struggling with this for a whole year and then suddenly I got very sick very quickly again, but it took them a long time. And eventually Seamus kind of, you know, he intervened and you know, as always, things start to become a lot clearer if you've got one person giving you continuity of care.

I would just say that my biggest problem is because Ireland is small and everyone knows this has happened to me . I've done a couple of television and radio interviews, not very much because you know when you have anxiety, you know it's not the kind of thing you want to be pushing yourself into. But I told my story quite bravely about four or five weeks ago and they put it on the cover of one of our national newspapers and I did one of the flagship radio . one And and I drew huge amounts of anti-vaxxer people onto me to the point where I had to report it to the police. They were talking about me dying or making sure I would soon. I think they put a cartoon up of me against a wall with somebody shooting me. And this is all because the most innocuous of stories that I've just told you. But what I think irritated them greatly is that I was linking it to COVID as opposed to the vaccine, that I was somehow lying about the fact that the vaccine had caused my problems. I was in Davos speaking in January, then that I went to Davos to mingle with the world vaccine pushers and I think it's the most extraordinary experience I've had since I've been sick and made me a lot . sicker Because of course, you know when the police are and And then the newspapers followed up the next day with Norah Nora Casey getting sinister death threats. You know it was a really anxious experience and made me very wary about speaking about what was going on with me, you know.

Well, you are certainly safe in this forum. I would say, and may I recommend, that your obnoxious trollers can tune into ESWI Airborne. We would certainly welcome them as listeners to follow what could be said. But, Norah, this brings really an important point that I mean two aspects treatment, I suppose, but also prevention. I mean, what can we say about prevention here? Okay, non-pharmaceutical interventions, masks, hand-washing, social distancing and so on, are these relevant? Or what can we say about vaccination in this case, if anything?

So if anything for not getting long syndrome of anything but specifically long COVID, I think the most important thing is to not get infected. But we do know that the vaccine prevents severity of disease but not per se infection. So that could be difficult. But I would say that vaccination is something that is very good for prevention of infection in general in the whole population. I don't know if Merel can add anything there.

Well, I'm really sorry to hear that there's so much response from anti-vaxxers on your story and I see this happening with many patients. Also patients that in March of 2020 got long COVID when there was not even a vaccine. So there is a thing that is, some patients get long COVID-like symptoms due to the vaccine. It's a very, very small group, but these anti-vax sentiments are really stigmatising the long COVID patients and that makes it even more complex. Also, healthcare professionals are not always taking things serious, like you said. So it's a very complex disease for a patient to have and to maneuver.

Regarding vaccination, we now know that vaccination may prevent long COVID to some extent somewhere between 20 to 40% reduction in chances of getting long COVID. So it does not fully prevent long COVID from occurring even after reinfection. So my best advice would be not to get COVID that many times. Try to prevent getting COVID and that's easier said than done. We can take basic measures like washing hands and staying at a distance, but in normal life this is quite problematic, especially now that testing and staying at home measures are being gradually restricted. I'm a bit worried for that because in policy, we do not really see how this is weighed, how the long-term effects, so as on organs, diabetes, cardiovascular disease, but also long COVID. It is not being taken so much into the debate and it's also very complex because there's very little knowledge. But my best advice would be see how you can prevent getting COVID still.

Well, prevention better than cure always. But when you are in that situation, I mean, is there anything we can say about the kind of treatments or therapies? Norah, I think from what you described, you're running through from A to Z on these. But what can we say about what is being used to tackle or manage long term acute respiratory virus disease?

Just the lay response from somebody who doesn't know much about it. I started on 27 drugs and I'm down to nine. I might be back up by two, actually from the last week. So in addition to the symptoms that I had, which are either post-metabolic crash or a bit of cytokine, a bit of long COVID, I don't know a meld of all of them. The side effects I had from the drugs were really significant. In fact, I would say the biggest disruptor in my life, apart from diabetes, is my gastric system. So Seamus starts with a big spreadsheet every time we talk and he tries to look at what he can reduce and what he can take out and also the interaction between one drug and another. And that's been a huge issue for me because in the early days they just threw everything but the kitchen sink at me. So I was on so many different drugs. They discovered my vitamin D levels were low. So, as well as all the medical drugs, I was on super high dose vitamin D. My magnesium levels were low, so I was suddenly on high dose magnesium. None of the beta blockers were working. My heart kept cluttering away. I don't have AVF or flutter, so that was a really good thing. I just have a very fast heart, that is, and sometimes it gets to the point where it continuously does that for a period of time. Sometimes it's just once a day, you know so that one of the biggest things that has changed for me and it's taken a year is trying to get those. And I'm not saying I still have some really bad side effects from some of the drugs, um, but you know, when you're fatigued and you can't sleep, it's from one side effect. When you're trying to eat, I was on no sugar for six months, so I just had my first apple three months ago, which was delicious, but I was also not digesting any of that food because it was going straight through my body and I had significant nausea. So every time I have a symptom which could be a symptom of the drugs, I get another drug to try and manage the symptom of the drugs.

The second thing is in complementary therapies. I've never leaned into that in my life, ever. I think somebody messaged me recently and said you've two levels of speed now. I used to only know you at 100 miles per hour, but in the last year you're 100 miles per hour and stalling, and increasingly, the stalling part of your life is kind of becoming more problematic then. So I have actually started, you know, to do things like yoga and to try and meditate. I talked about that. I try breathing exercises. There are lots of things that I discovered I could maybe do myself. I agree with Merel about that. You know I am quite an exercise friendly person. I, you know, diligently stick to my walking climbing before COVID and on those days when I feel like I really don't want to do it, I put on music in the kitchen and dance around like a mad thing and I time myself and I try and do 10 minutes and build it back up again. But it's hard to motivate yourself sometimes, you know.

Meryl, what do you recommend to the people that you see dancing in the kitchen?

Well, continue dancing in the kitchen. That's always a good thing. If we look at long COVID, there are no definitive cures, so there's no drug treatments that can really help long COVID. The only thing that we as a medical community can do is relieve certain symptoms. And I'm generally quite restrictive, especially because by trying many things at the same time we don't particularly know what we're doing and we experience side effects. But there's certain things that we do treat and one of these things is that, for example, orthostatic intolerance or POTS, where your heart rate really speeds up with no particular reason, for example upon standing.

We can treat that relatively well, significantly improving symptoms for patients and also by using certain techniques, such as pacing techniques or breathing exercises, singing, that may help relieving symptoms. So these are the kind of things that we do one by one, trying to improve symptoms. Some other patients benefit from certain diets. I have a few patients that really tell me that a histamine-free diet or using antihistamines improve their stomachs, or using nalchrom to protect their stomachs against certain allergic reactions. So the current treatment is mostly based on supporting the patients with non-medical intervention and improving symptoms to some extent. But, as Norah also showed, giving too many treatments may also have effects that are non-pleasant. So we're very cautious, one thing at a time, step by step, and managing expectations.

That's the right approach. All right, and, folks, this has been like so enjoyable talking with you today. I can't tell you I could sit and chat all day, but I want to get kind of a take from each of you, and it can be on any aspect, I mean social, or medical, or research, wherever you like. But what is the most important thing that you think needs to happen next in this area?

Well, I go first because I'm likely to give the stupidest answer. Firstly, I'm a total geek, I guess you know, and all the way through my life I rely on my academic education and you know I also published peer-r eviewed journals in my 20s. You know I was a former nurse and then did journalism and, weirdly, then had both qualifications. So I ended up working on a number of titles, including evidence based practice with the British Medical Journal, and so I learned quite early on in my career the importance of looking at evidence. And, of course, this is such a new area that the evidence is sometimes not peer reviewed, definitely isn't at a point where it's tipping the scales in terms of the solution. I went through the whole of my life with doctors in Ireland telling me they know best, and now we've got doctors all disagreeing with each other.

And even as we emerge out of COVID, we have some very significant players on the international stage who stood over governmental COVID committees. Who are now saying, yeah, I'm not sure now whether we did the right thing, and it causes great confusion and I think, a lot of distress for people to see that. And you think, when you emerge from a big crisis like this, that everybody will be cohesive and work together and, you know, follow the evidence and work as fast on the research as we did on the vaccine. But that's not really the case. I think in management, something called chaos has theory which is always the case with big corporates and political systems that when they get into disarray they go into this chaotic phase. And we're in that chaotic phase currently, with no clarity over what we're supposed to be doing and how we're supposed to be doing it.

I just wonder, you know, part of my life was involved in qualitative research, in particular storytelling at the University of Oxford, and I became keen to pursue that as an idea that sometimes it's great to gather, especially this is such a complex area and everybody's experience. You know there are similarities, Merel, as Marco pointed out some of them. But I just wonder if this isn't a case where we shouldn't, for part of it, we shouldn't be engaging in gathering people's stories and, you know, collecting all of the different experiences that they have and going a little bit deeper than quantitative, you know, in terms of symptoms and statistics and analysis, because it's much richer and it might help us to get to the point where we have a greater understanding of it.

That's a good topic. So something like building the consensus I mean based on evidence, you know and bringing up trying to consolidate this new knowledge. Marco, as both a medical practitioner and a researcher.

So that will be a multidisciplinary, translational approach, because the answer isn't in one specific field. So you would need the virologist, you would need the pulmonologist, but you also need the physiotherapist, you need a psychologist, all working together on this very difficult syndrome. Probably it's targeting the virus, it's also targeting the chronic immune response, but it's also trying to get back on a level pre-infection, using physiotherapy, using any kind of training, psychological training and so on. So you would need any specialist that touches upon chronic COVID or long COVID.

So it's clear from what you're saying that there's many challenges in this area. What do you think needs to happen, say, on the research frontiers?

So what I would really like to see happening is we got these amazing basic laboratory scientists so really going into the lab and animal models showing what could happen, and we got these really, really talented clinicians. But in between that's what we call a little harsh, but it's the value of that. So I would actually have these basic scientists to even work better with the clinicians and come up with a translational approach.

Okay. Merel, how about you? What needs to happen next?

Well, we still face many professionals and community members that are not aware of this problem or see this as a psychological issue or some sort of a burnout, and we should increase the awareness of this problem. And I think a thing that will really help in this is if we all engage in more biomedical research regarding the underlying causes of this problem. And we already know there is significant immune disruption. We see signs of viral persistence, of coagulation cascade disturbances, so there are many things being found, but we don't know where the cascade starts and what is cause and effect and how it affects people differently. So it would really help if, from a biomedical perspective, we would engage in more research and find out how this process actually works. And then this will also help in understanding the disease and developing treatments, because that's where we need to go. And for now, I think it's massively important that people such as Norah speak out. Speak out regarding their disease, that it's real, and help people understand it. And it's very, very brave, given the trolls that came to you, but it's very important to speak out. Keep doing that, please.

Absolutely agree with you. And that is the last word, and a fine one to end on. Thanks so much to each of you for being here with us today. Thanks, folks, for tuning in and don't miss the other episodes in this three-part ESWI Airborne special on the burden of disease of flu, covid and RSV. We're also homing in on how older people are affected and the urgent need to address ageism in healthcare. Plus, we'll be diving into the economic and social impact. So some really important real-world impacts there. Keep yourself up to date and get your information directly from the people who know the most about viruses, vaccinations and public health. Members of the European Scientific Working Group on Influenza. Until next time, dear listeners, stay safe.

Aida Bakri: 37:02

ESWE Airborne is brought to you by ESWI, the European Scientific Working Group on Influenza and other Acute Respiratory Viruses. These episodes would not be possible without the team's efforts and we would like to extend special thanks to our ESWI Secretariat, our technical and IT teams, our arts team and our host, Clare Taylor. The podcasts are recorded virtually and we thank our guests for their participation in this inspiring series. Talks are adapted to a global audience and are intended to be educational. For any specific medical questions you may have, these should be addressed to your local general practitioner. Many thanks to our sponsoring partners and thank you for listening.

Burden of disease - Long-Covid and other post-infection syndromes

ESWI Airborne: Burden of Disease

More info?

ESWI Airborne: Burden of Disease

Community info

Influenza Diabetes Community