Transcript: Episode 50
What is Long COVID?
Vivienne Parry 0:04
Hello and welcome to Coronavirus, the whole story, a podcast about the pandemic and everything that the UCL community has managed to learn about it. vaccine safety, how to redesign office spaces, how lockdown is affecting our mood. It's all here. And if you've got a question about Coronavirus, I'll guarantee UCL has someone who can answer it. I'm Vivienne Parry. I'm a writer, broadcaster, UCL alumna and somewhat astonishingly, after 50 episodes, I'm still your host on his award winning podcast. Now, this week, we're talking about long COVID. Over a year on from the start of the pandemic, many people are still experiencing severe complications from a bout of the virus they had right back at the start of the first wave. And it's not just people who had severe COVID either. So as ever, I've assembled a panel of UCL experts to share their research, with each talking about a different aspect of Long COVID. I'm joined by Dr. Mike Zandi, who's a Consultant Neurologist at the National Hospital for Neurology and Neurosurgery, and Honorary Associate Professor in the Institute of Neurology in Department of Neuromuscular Diseases. Last year, Mike conducted the largest study to better understand the neurological symptoms of COVID and is co leading the COVID neurology clinic and national brain appeal funded clinic for neurology patients with long COVID. Also with me is Dr. Alex Burton. She's a senior research fellow in the department of behavioural science and health. Alex's research explores how social support impact mental and physical health and how we might incorporate social support into health interventions for people with mental health conditions. She's currently conducting qualitative work to understand the impact of socialisation on health and well being during the pandemic. Mike, let's start with you. What exactly is long COVID?
Michael Zandi 1:57
So it's a really good question. And it's had some debate. And I think at the moment, what we call long COVID of people who have any symptom related to their COVID infection that's lingering on more than a month after the initial diagnosis, or the initial fever, or the initial symptom that was suggestive that they had COVID infection. And we've seen a lot of people in uclh. So I'm part I'm the neurologist, and with another neurology colleague, we co lead a specific neurology clinic in Queens square. But we're also part of a very large, uclh, long COVID clinic that was set up just over a year ago, it's just had its one year birthday, unfortunately, and we've seen a lot of people who can have symptoms that last for many, many months. But some people have short lived symptoms. There's another term called post COVID syndrome. And I think that's quite a separate thing, which is where you have excluded certain organ complications of COVID. And perhaps someone's had symptoms that are going on for several more months, maybe even three months or so. But these, these terminology can change. And certainly long COVID can include people who have had organ complications related to the disease.
Vivienne Parry 3:11
So is it possible to separate out what you would expect, for instance, if you'd been in intensive care, you know, all the things that you would expect from being immobile for a long time, you know, having a really traumatic experience from the syndrome that is long COVID?
Michael Zandi 3:30
I think so I think we've seen the very beginning and even our own work and research was really focused on people who've been in hospital because in the first wave, those were the ones who are getting PCR testing, and you had the confirmation of the illness. But we started to see patterns of just as severe perhaps even more severe symptoms. In some who weren't hospitalised who weren't immobile, necessarily, due to the first infection. They didn't, they didn't need to go to the intensive care unit. It's a little bit of a clumsy division, but often younger people, because younger people can be severely affected by COVID. But often they were the ones they wouldn't go into hospital with a pneumonia, they wouldn't need the ICU, but could have quite a severe long COVID syndrome. And just picking up on one thing I said earlier, sometimes the initial illness isn't that clear to see. And I'm not a paediatrician but work with some paediatrician sometimes there isn't that very clear first episode, and then late manifestations, for example, the COVID toes and the skin, or long COVID symptoms can come along. And perhaps these have been heralded by COVID infection has been very mild or they've been very, very few symptoms at all. But looking at our clinic as a whole, we've had a proportion in the neurology clinic, we do see people who've had organ damage, they've had strokes. They've had brain inflammation, where you can get white matter changes in the brain so you can have an capsulitis spinal cord problems, more rarely nerve damage itself. Visual problems and other things. But the majority of people we're seeing now are those who don't have any clear clinical evidence of organ damage, but still have very severe symptoms that are affecting quality of life affecting their ability to think, to work, and to really function even for several months after the illness.
Vivienne Parry 5:20
So obviously, you know, you're a neurologist, you're interested in the neurological, but there are also I'm guessing other patterns of symptoms, say respiratory, and perhaps also given to logical things to do with blood clotting and that kind of thing. Is that right? Yeah, that's
Michael Zandi 5:38
absolutely right. And perhaps you can divide patients up. But I think often, there is a unifying thing underneath. And initially, we thought, okay, if this group of people and there are a lot of people who have thinking problems, and many patients will call this a brain fog, which is an old term that people with who are undergoing chemotherapy would say they have or have had a concussion, or immune diseases like lupus would describe this really lack of clarity of thinking, slowness of thoughts, difficulty concentrating, difficulty taking information in, and we'd see a group of patients who had that as a main feature, without very much breathlessness and without very much fatigue, but usually the breathlessness and fatigue and other things were there as well. And then we'd see some people who had no cognitive symptoms like that at all. But they had really marked fatigue, exertional, fatigue, exertional, racing heartbeats, and some people would have a prolonged cough. And so you start to see how you can divide and find out the various groups, and this is really an urgent need for now. And there are this kind of work is underway research to try and look at what kind of person gets what kind of long COVID? How can we pick them up early? How should we treat them? We need clinical trials to try to determine, as we've seen, with the recovery and other trials, for hospitalised patients, what are the drugs that actually help people get better?
Vivienne Parry 7:07
Alex, one of the difficulties, I'm guessing for people with long COVID is that if there's such a very variable experience, it's difficult for people to share their experiences. And that in itself, makes people feel, you know, recovery is even more difficult.
Alexandra Burton 7:27
Absolutely, yes. And one of the biggest factors that that people have told us is really impacting their recovery is when they they don't feel understood or believed or listened to by people in their support networks. And in particular, that they've really struggled to access health services, often the first port of call is the GP and I guess GPS are seeing different types of symptoms. They're having to deal with different reports of these different symptoms. And I think that they often don't really know what to do for people, or how to treat them or where to send them. So I think that's been a real source of of anger and frustration. And people have said, you know, they've felt very helpless and abandoned and very much alone. So it's tricky for everybody, I think, both in terms of patients who are seeking help, but especially sort of the primary care side, you know, where do we send people when we're faced with these different symptoms. And I think just one other thing to add around the symptoms, I guess, people have been also describing what we might think are more minor kind of presentations, things like losing sense of taste, or smell, hair loss. But these things have a huge psychological impact on people. And I think it might not be something that we think of that needs to refer along to another service. But for day to day life, not being able to taste your food or losing your sense of smell and hair loss. This is it really impacts people mental people's mental health
Vivienne Parry 8:51
as well. Lots of tastes pretty devastating if you're a chef.
Alexandra Burton 8:54
Absolutely. And if you use cooking as a therapeutic activity to sort of protect your mental health as well and as a social activity.
Vivienne Parry 9:02
So Mike, I'm intrigued here, how long could people wait after they've had COVID? before they can definitively say, you've got long COVID? Because I imagine people will go to their GPS and say, you know, I'm feeling absolute terrible. I've got this, this, this symptom. I'm getting the organ that in a very specific organ systems may get picked up more quickly than this, but I'm suspecting that a lot of GPS will just say, this takes time. And then people will be dispatched home to sit around waiting. So when do you know that you've got long COVID rather than just you're recovering from COVID.
Michael Zandi 9:43
It's difficult and there's there's a trade off. So for example, there's nice guidance for GPS and others to look at when to refer. And you've got to factor into the mix. The subsequent waves that we've had delays and access inequity of access for data Some people to be able to access an appointment and if needed to get specialist referral into a hospital clinic, not everybody needs that. But there are people who do need it. And that's where the one month is quite useful. Because if you still got substantial symptoms after a month, then you're unable to carry out your regular activities of daily living, then you've you know, I'd say you've you should be assessed for long COVID. And as Alex said, it's an excellent point, there could be symptoms that, you know, you could be physically active, able to run, able to work, but you've lost the sense of smell and taste and that specific one, maybe you don't need the full spectrum of everything, but you should still have some kind of assessment, in my view, and maybe you'd be involved in research, because none of us really know this is still a very new problem that we've only had for around 18 months now. And we don't know what the very long term effects will be.
Vivienne Parry 10:51
Now, viruses are known to be Pesky Things at the best of times, are there any other examples of viruses that cause such wide ranging effects? Or is COVID in a class of its own?
Michael Zandi 11:06
There's something unusual about this virus being assessed for long COVID after that month or so, because we have seen again, with people not going to have any symptoms assessed over this last year due to concerns of contracting COVID. or for other reasons, lack of access to appointments that may have been cancelled, other diseases can masquerade as long COVID for sure. So you can have another medical problem making you feel tired or have nonspecific symptoms a month after or two months after COVID. And maybe COVID was a big stress on your system that helps reveal actually there was another diagnosis that was going to emerge, it would have emerged maybe later and there's some evidence for that kind of thing. But we know the previous SARS type viruses, the one in 2002, or three and the MERS virus also could trigger certainly post viral syndromes, neurological syndromes, we know epstein barr virus has people have glandular fever and have prolonged recoveries from that. So there's a trade off again, with our ability to fight viruses or fight other infections. And perhaps in some people, they can have autoimmune complications or blood clotting and other complications. It's that trade off that we've got in being able to deal with infections. There was one study that's recently been published by colleagues in Oxford looking at health care and looking at outcomes in COVID, after six months, for example, and trying to compare that what we don't have is a good randomised prospective trial, or a case control epidemiological study. So you have to look back and compare to previous influenza outbreaks, or people who've had influenza or have gone to the ICU, and you compare them. So somebody who's had COVID seems to have more chance of occurring problems compared to a reasonably well matched person who say, had influenza. And the headline from that study, which is relevant today is that well, a third of people had a neurological or mental health diagnosis after six months after having COVID was quite high, and 10% of them, it was their very first time. So it could have been a pre existing vulnerability that they had that came back and we know rare viruses, I mean, the Zika virus, there are other viruses that they've got a high rate of causing complications and chicken ngannou virus can cause problems in the brain
Vivienne Parry 13:29
bornavirus that's another interesting virus that causes symptoms, which manifest themselves as psychiatric conditions. Yeah,
Michael Zandi 13:36
and we've had I mean, the background of how we got involved was we had a meeting for the last four years with neurologists, but also infectious diseases doctors and UCL and virology and psychiatry, and we'd had a monthly meeting face to face where we'd looked at brain infection or brain inflammation, and there's a big link between the two. And you can have an infection trigger off inflammation in the brain, which we call end capsulitis. And sometimes that can be due to the immune system itself without a viral trigger. And we thought this was an obscure meeting, and we shut it down when a lot of the fellows and people again, UCL staff who were running the meeting had to be redeployed and go and work on the ICU or go to COVID type stuff, but very quickly, we had within the first few weeks, lots of notifications around the country. And we're focused in London, of people who had unusual brain inflammation or unusual patterns who were in hospital after COVID. So it was very useful to have people with lots of expertise in academic virology. But along with psychiatry, because somebody could come into hospital with psychosis or hallucinations, but have evidence of this type of problem.
Vivienne Parry 14:50
Oh COVID we so don't like you. Tell me a bit more though, about the impact on mental health because one of the impacts is simply play that. I mean, very often you hear of people with long COVID, who have been not just in good health before, but were in outstanding health, you know, they were young, they were exceptionally fit they were doing on man, you know, they would do all sorts of things. And suddenly, they find themselves completely incapacitated. And that in itself can have a major impact on mental health, let alone all those things that Mike has been talking about.
Alexandra Burton 15:29
Yeah, absolutely. So I've been working on the COVID social study led by Dr. Daisy fancourt. And we're exploring the psychological and social impact of the pandemic on people living in the UK. So as part of that study, I've been conducting, in depth interviews with people experiencing long COVID. And we are we're currently analysing the data. And so far, we've spoken to people who were in their 20s right through to people in their early 70s. Some people are still experiencing symptoms, 12 months or more after their initial diagnosis, either suspected or confirmed, obviously, back in March 2020, people weren't able to be tested. And often as well, people tell us that they they were ill seem to recover. And there was a sort of delayed reaction that the longer term symptoms didn't, didn't occur straightaway, so they seemed fine. And then suddenly, the long COVID symptoms kicked in. So people have taken us through a whole range of emotional responses to their symptoms, obviously, depression, feeling anxious and scared, particularly those who've been experiencing breathlessness and whose cardiovascular systems appear to have been affected. People have told us that told us that this has disrupted their sleep previously, they slept really well. And now they're unable to sleep through the night. And that obviously ends up in a vicious cycle of feeling constantly tired and irritable. I think people who've reported that sort of extreme fatigue that Mike was talking about, have told us they've felt very frustrated and guilty, because they're no longer able to fulfil their roles as parents as partners, or employees, or they're not able to do the roles that they did before as effectively. And they feel that they're failing people. And they're sort of failing their family and the people around them. I've already talked about that sort of lack of support and not feeling listened to, I think that's been a huge impact on our mental health. And just this, this real sense of fear and anxiety resulting from the uncertainty of being able to recover from this when it's been going on for so long. So being able to be new, unable to make future plans and worries around whether they'll ever return to their former selves. So some people have told us that they're really not feeling very hopeful for the future. And obviously, that has a huge impact on their mental health.
Vivienne Parry 17:39
What do we know about recovery from long COVID? Mike? I mean, do we know anything about the percentage of people who are better by three months better by six months, and so on?
Michael Zandi 17:49
So there's some emerging data on that, and it's very, you know, it can be prone to bias and various groups looking at this. So it you know, it's hard to give you the exact numbers again, because we're seeing people in the clinics who have got through various hurdles, and they've managed to get into the clinic. And I think it's really under ascertained how many people have problems who've never sought attention for this. But we do see on the, you know, on the whole, we are seeing people improving, and the proportion is going down for those who still have symptoms after six months, after nine months after 12 months. And well, we really rely on what we want to support is having research embedded with patient groups who've really been helping fill a gap and collecting a lot of this data. And you'll know some of those have got colleagues and UCL working on them. But we do have people who've still got significant severe symptoms since that first stage, which is of course a concern. By and large, though, we're trying to be reassuring that we are seeing recovery as a whole in most people. And one thing that we've identified, as you can see, as part of the assessment, you can see organ damage, albeit quite rarely. You can see evidence of inflammation in the heart myocarditis. Very rarely we see serious lung scarring. And we've seen quite a low chance of people having epilepsy or brain inflammation or some kind of scarring within the brain. But often it's unclear at the beginning. And you do need to have a comprehensive assessment of some kind. We've had some generous funding from the National brain appeal the Queen's square, which have helped fund some extra clinics for us for this year. I think it's a real priority to not forget about this and to fund this kind of clinical work and research in the in the long term.
Vivienne Parry 19:37
Alex, what about the support that's in place for the mental health impacts? Mike's told us there about the COVID neurology clinics and the kind of people that he's saying that and the multidisciplinary nature of the teams on hand. But what about the mental health support, because it's not quite the same As mental health support for other things in your life as it is specifically to do with long COVID Yeah, I
Alexandra Burton 20:07
think this has been a real issue for people. And what we've seen happening is this sort of movement of peer support, really. So there are many long COVID peer support groups being set up, and a lot of people have told us, they have been a real source of help and information and advice. So there's been this really swift mobilisation to coordinate that experience online. So just being able to talk to other people who are going through a similar trajectory of symptoms has really helped people to validate their own experiences and help them to cope, we have had mixed experiences of sort of accessing support through the usual channels. So talking to GPS through primary care, some people have found that really helpful, but others feel like that's not that understanding there. So it's, it's really early days, I think. And I do think that the usual channels can help. So obviously, if people are feeling very anxious and depressed, I think always speaking to your GP and trying to get support is the first port of call. But I think these more informal groups have been a real source of help for people as well. And of course, accessing resources online through sort of different organisations that deal with particular systems. So the British Heart Foundation and British lung foundation have been a source of support, I think, and developing their websites for people to signpost. And I think we importantly, as well, I think the NHS resources also have helped for families and for friends who are supporting someone in recovery to sort of talk through how to support people how to help people through this and how to understand that it
Vivienne Parry 21:38
would be very easy for all of us who haven't been affected to see someone who has and just say, Oh, this will pass, you'll be you'll be better soon. And the person affected must be inwardly screaming, When am I going to get better? When am I going to get better? I'm feeling the whole life is on hold.
Alexandra Burton 21:55
Absolutely. And it's really, for some people affecting their relationships. I think that's something that people have told us they've withdrawn from social activities, they've stopped connecting with their friends either because they find socialising too exhausting, but more worryingly, because they feel that they just don't have the support, they feel they have nothing positive to talk about. And they don't want to be perceived as a burden. So it really is a gap that needs addressing really, and even things like if
Vivienne Parry 22:21
you've got a constant cough, people feel that somebody is going to be looking at them all the time, if they cough, constantly. There are all sorts of barriers like that. Mike, what can you say that's helpful to people who come in to see you to reassure them that, you know, their life is not over?
Michael Zandi 22:43
Absolutely. I mean, we, I think the the important thing is, as Alex was saying, as well to just listen to patients, and listen to the people that come and see us. And because this is a new problem, we really I don't think anybody knows, nobody knows who needs more medical attention, who doesn't, who needs more of a rehabilitation type approach. But I think we need to listen, gather information, right from the outset, what I would say to our patients, as well as that we don't divide neurology and psychiatry up. So certainly, we can see a very physical problem with evidence of inflammation in the blood that can be lingering on and other aspects in people, but there can be always then a secondary layer of anxiety there. So you can have clear evidence of a physical problem, but you shouldn't ignore the psychological aspects, and the psychiatric aspects as well. And some people have got clear features of PTSD or severe anxiety, really intrusive thoughts going back to a time when often they thought they were they could die, and they were some people who had to go into hospital and they were on oxygen.
Vivienne Parry 23:45
I mean, certainly PTSD is a big feature of those who've had intensive care. Yeah. And also there's there's this curious thing of being an intensive care and losing knowledge of what happened. And I know that uclh there's a lot of diary keeping a by staff to make sure that they can talk through the time, so that patients really have a good idea of what actually happened to them because their own sense of what happens to the maybe very confused
Michael Zandi 24:15
Such a fantastic team. I mean, so big the I mean, our MDT for neurology, within capsulitis is around 30 or 40 people and lots of people behind the scenes and in the lab and other places and the uclh one is even bigger than that. We also see touching on something we talked about earlier, we can see symptoms that can come across as saying these are mild or trivial things like the sense of smell, but we also see a lot of migraine which can sound like we're trivialising symptoms but the biology of migraine you get electricity, subtle changes of blood flow in the in the brain that can cause severe dizziness, imbalance, very similar to people who've had a concussion. So we've seen a lot of this after COVID and there are things that you can treat if you identify Something that seems to be triggered to having had COVID. There are things there that we can treat. And we sometimes see other balance disorders. So to reassure people, I'd say we're seeing thankfully we're seeing and perhaps we're seeing after the last few waves, these latest variants, we haven't really seen what was coming into hospital after the first one. But I, nobody knows if that's just again, our own referral bias. Maybe after the first one, we told everybody what to look out for. And now nobody asks for our help to identify what's going on. But we're seeing low levels, we've done some preliminary studies, this is with colleagues in our spinal fluid and dementia services colleague, Ross Patterson, Laura Benjamin, lots of different academics are working on this problem. And we've started to look at markers of damage in the brain, in people who've had COVID. But the research takes time. So we've only looked back at those people who are hospitalised. And if you're in COVID, and you had definite brain inflammation, there are some markers of brain damage in your spinal fluid, or maybe nerve damage. But if you didn't, and even if you had COVID, generally, or milder symptoms, we're not seeing the patterns of changes in the spinal fluid to stress, there's some serious amounts of damage going on under the surface, as it were. But these are the big questions for the future. It's often a question we're asked to have had COVID I've still got the loss of sense of smell, what is my risk of dementia, and that study I mentioned before comparing COVID to people who had influenza, well, though, the headline was maybe the risk of dementia is, is doubled. The hazard ratio is twice that for a previous virus, but part of that probably is a large portion of population, getting COVID, many of whom may have had a diagnosis of dementia or something coming up to them. And the next year, you've just now made everybody run a marathon and he's just you reveal it really early. But could COVID be something that you know leads to problems decades from now? Of course, that is a question we haven't seen, compared to say the end capsulitis lethargic or outbreak, I'm trying to be reassuring the competitor. Great job of a show, I realised that compared to 100 years ago, you know, we've not seen that. Hospitals haven't been inundated with people with brain damage or Parkinson's or other things like what happened after the 19 influenza pandemic,
Vivienne Parry 27:25
we're going to say on that note, few, at least some small mercies there. There is so much to be done still. And I know that one of the things that's going to be really important is patients being involved in carefully keeping track of all these symptoms to really build up a dataset that's going to take us into the future. Thank you both. Thank you, Alex, particularly if your work on mental health support, which is so important in all of this. So you've been listening with head and hands probably to Coronavirus the whole story. This episode was presented by myself Vivienne Parry, produced by UCL support from the UCL Health of the Public and UCL Grand Challenges and edited by Cerys Bradley. I was joined today by Dr. Michael Zandi and Dr. Alex Burton. If you'd like to hear more of these podcasts from UCL Minds, of course, you would subscribe wherever you download your podcasts or visit ucl.ac.uk forward slash Coronavirus. This podcast is brought to you by UCL Minds bringing together UCL knowledge, insights and expertise through events, digital content and activities open to everyone. Hope to be with you again soon. Bye for now.
Transcribed by otter.ai