Long COVID: an unfolding story with Professor Brian Cox | The Royal Society

hello and welcome to this royal society event where we are discussing long covid and i know that's a subject that many of you uh are interested in and many of you have uh perhaps suffered from so there's going to be an opportunity throughout this event to to speak to the panel the expert panel and ask them questions the way to do that is to go to slido.com and when you get there you'll be asked for a login and you type c804 and there are two sections to that one is a q a section so you can type in answers or you can vote up uh questions that have been answered or asked and i will look at those and i will ask as many as i can to the panel and there's also a polls section and so we're going to conduct um really four polls throughout the throughout the night to get a sense of them what you feel about long covered and how it's affected you you can also tweet actually there's a hashtag covid hashtag covid of science if you'd like to tweet um so because i know this is particularly interesting to many of you i want to get straight to it so um i'm going to ask the expert panel to introduce themselves so i start brian yes please paul uh so my name is paul elliott i'm professor of epidemiology and public health medicine at imperial college london and i'm a director of what's called the react study which has been monitoring the spread of the virus both through testing for the virus directly itself and also looking at antibodies since may of last year across england might go next yes please yeah so i'm dr nissarin alwan i'm an associate professor in public health at the university of southampton and honoree consultant public health at university hospital southampton and i'm here because i've got lived the experience of long covert but also been doing lots of advocacy and and some research on long covered over the past few months um me next i'm adam rutherford and i'm a geneticist at ucl but you'll probably know me better as the presenter of inside science and the curious cases on radio 4 alongside brian and i guess i'm here because i also have the experience of long covid i i got covered march 16th last year and i still have symptoms to this day so i'm still trying to work out um how to manage that hi so i'm lish chattavadi i'm a clinical epidemiologist and have recently been funded to study long covered using population longitudinal studies and anonymized electronic health records to understand the definition of long covered its risk factors and its outcomes well thank you all and i should have said actually there's a live captioning available this evening you'll see a link at the bottom of the of the window it's titled subtitles closed captions so not available and you can type a word in there and we're going to make a word cloud of that to get a sense of what you understand about that condition and that's really where i want to start with the panel by asking what exactly is long covered i thought i got in this ring to ask that question now particularly if there is an accepted medical definition of long covert thanks brian so yes the problem is with your word exactly that that's a problem we don't have a universal um specific definition of long covert yet but i would still define it as not um recovering um not going back to baseline health so the health that you know you were at before cover 19 infection um and and the time uh for that um um really depends and people define it differently but uh usually you know i would say for more than for more than four weeks so if you don't go back for more than four weeks however it's important you know just just to mention quickly that um uh nice so we've got some clinical guidelines and they um recently and they say that um the two they break it down so they go if you they say they've got ongoing symptomatic covert 19 if you have symptoms between 14 to 12 weeks and then you then could have what what's been called in the guideline postcode 19 syndrome which is sign and symptoms um consistent with an infection uh for more 12 weeks after the infection if there's no alternative diagnosis so so it's roughly speaking you should have expected to recover to a large extent within about 12 weeks if you haven't then that could be defined as long covered that's right although it could be sooner than um 12 weeks you know depending on what you call it as well and for example the recent statistics by the office of national statistics use um um one cutoff a cutoff of four four weeks for their question about whether people have long covered or not so it depends and i think i think i should just ask you and then adam because you've had personal experience of it to very briefly describe what that experience has been adam do you want to go first yeah sure i mean so you know as i mentioned i um i got covered march mid-march 2020 last year i was a covert hipster you know before it became fashionable um and i got it pretty severe um so this was at a point where people were talking and indeed i was on the radio saying it feels like a mild flu um and then about a few days later i was very close to being hospitalized and should have been hospitalized i had a secondary infection on top of that i don't need to go into too much detail about it but you know was was treated successfully and in the sense that my covert symptoms were alleviated but it's now more than a year since then and i still have lung difficulties now i'm 46 um i was pretty healthy for a 45 year old this time last year um and um of the symptoms that people with kovid and with long covid uh um have of which there are many really now i only have tightness in my lungs so in the in the up my upper respiratory respiratory tract i'm talking to you from my bedroom in fact which is on the third floor of our house and i can't get to the top of the house without having to sit down and being short of breath now that's not right right that is not a return to how i was before i've been doing plenty of exercise and doing as many things as i can to recover properly but there's something in my lungs which isn't shifting so that that is common with lung infections there are other lung infections which take a long time to recover from and because we're only a year into this and a year until my personal symptoms it's just difficult to know what is actually going on um nish could i bring you in because um there's several questions on this of course the obvious question is is why what do we know i mean vivian mosel for example has asked a question uh asking well is it somehow related to the immune system so so what do we know about long covert so um as this reen and adam have said it's fairly confusing because we can't define it properly um people complain of around 50 symptoms some have just one or two some have many symptoms so making a definition is quite hard and there's some sense that it may be a cluster of several different syndromes perhaps one clustered around fatigue and muscle weakness perhaps another around the brain that people complain of um what's striking is that people affected with long covered are not the people necessarily who are more at risk of covet so unlike covert people with long covert are likely to more likely to be women than men more likely to be middle-aged rather than older folk and there doesn't seem to be the ethnic disparity that we see in coveted infections that's all really quite puzzling in terms of mechanisms the immune system is one it could be that people are not clearing the virus as effectively as they should uh another hypothesis is around the microcirculation that is long-term microcephality damage the reality is we don't know and research that i'm doing that paul is doing is um uh aimed at trying to find out exactly what it's due to yes paul could i bring you in i mean again a lot of questions here bethan has asked is there a link between long covered and lack of rest during the initial infection so i suppose there's a lot of speculation here that i'm seeing about people just asking questions what was it um so could you elaborate on what we do know yeah so sort of building on what um nish and the others have said so first of all within our database we've we've actually been to more than one and a half million people over the course of our study and we have around 30 000 people that we know uh did have virus that was tested either with a pcr test looking at the virus itself or with an antibody test and when we look at the symptoms that people have it is a constellation of many symptoms as niche says and we certainly see this you know um what happens in the first four weeks then between four and 12 weeks and then beyond 12 weeks so we really have to understand what these different concentration of symptoms mean and we also need to very much listen to people like uh nazarene and adam who who are suffering from log kobe because this is very much as as nazarene said a uh lived experienced disease because it's completely new so kobe 19 is new long covered is new um like niche we're doing a study of long covered embedded within our react programme and we're really trying to understand the mechanistic underpinnings of this disorder um by looking for things such as implant long-term inflammatory response looking also at the genetics because we know uh the people who are very severely affected there are some genetic susceptibility and we're going to be looking at that we'll be doing whole genome sequencing on on on people who have had covered and some of those we would have long covered and we're also going to look over the long term at uh what happens to people who um had symptoms just for that for the first four weeks or for eight weeks or 12 weeks or longer what happens to them over the long term and how does that compare with people who tested negative in our study in very large numbers we'll be talking about over 100 000 people that we'll be following up so i think it's a new i mean the thing is brian it's a new condition we've really got a lot to learn and and we're just beginning now to start to just put together and as all the others have said we we haven't got a good definition we need to listen to the patients themselves to try and understand what that condition cluster is and then to follow those people up to see what happens over the medium to long term yeah and as you said that quite a lot of people clearly suffering from lung kobe they're asking questions and i know adam just before we went on air you'd said that you are now about to be scanned as part of this research um so can people expect who are suffering from lung co expect to follow up at some point not only in in clinical terms and trying to help but actually in terms of the research into what this condition is yeah and you know this is why events like this are so important because the what you know the sort of foundation of understanding the etiology of any disease is actually just harvesting data right and the fact that we're only a year into this and that there are people like paul and like nation loads of other scientists around the country who are recognizing that this is a serious um condition and it's a chronic condition and it is going to persist and therefore will have long-term consequences for both the nhs and for individuals the fact that that is all happening is absolutely wonderful there are problems inherent to that which are the the number of people infected with covid over the last year or so is colossal but the number of people who are on the books or have been entered into the system is much lower and so we know lots about the people who are hospitalized we know a less but some about people who did have medical consultations but we don't know anything about or you know nish and paul should and this room should correct me on this but we don't really know anything about the majority of people who we presume either had covered mildly which is most people who had it or didn't have any symptoms at all who may yet develop symptoms as a result of long covet i think i think paul wanted to comment there yes i think this is a really important point adam and i just to say that the study that i'm involved with the react study is precisely looking at people in the community so we have so we recruit people regardless of symptoms and we test them for the virus or for antibody so we have in our study people who were non-symptomatic but had had who were symptomatic had mild symptoms clearly some of our people did go into hospital but the vast majority didn't so we are actually tapping into that group of people that you're talking about and then and you're right that's the bulk of the people who've er who've had um who've been infected with this virus and we also know that um long covered can affect people who are in hospital but also people who weren't in hospital and people who had very severe symptoms but people who had more mild symptoms and so we've really got to look at that total picture like comment yes thank you i just want to reinforce how important it is because it's such a new condition that we really need to take different research methods so exactly what paul is saying surveys are really important to capture the people who are not being labeled or accessing the health service and being you know diagnosed with monkobit because that could be quite biased in terms of who actually gets there but also it's important to you know to study the people who are asking the health service or who are going to their gp um and being um diagnosed with long covert but being wary that a lot of people particularly those who hadn't been tested in the first wave may be labeled with other um with other diagnoses and and that's something that comes across again and again from people blank over it is partic particularly in the first few months where nobody knew anything about it people a lot of people were being labeled as you know having stress or anxiety because it was just you know very unknown and the third type of research that we is really important is to talk to people so what we call qualitative research to really understand what's going on and the experience of people so if we bring all of these together we hopefully can understand more about it well it's interesting that you say that i'm just looking at the world word cloud actually where almost 600 responses the biggest word is fatigue and there are some fairly you know common ones chronic fatigue debilitating long-term symptoms brain fog and and then breathlessness so but but quite a few you know it's frustrating is one of them uh post-viral syndrome chest pain so and given that that i think fatigue seems to be the number one which i think is you said adam seems to be the shortness of breath but um is it the problem diagnosing because just looking at that word cloud there's there's a lot there a lot of very diverse symptoms there are a lot a lot of symptoms but actually with some of the research that we've done and others have done there are patterns emerging of how these symptoms clusters and um so so there is a way of trying to characterize this illness because they you know do cluster in some ways and we'll know more from the other studies pausing initial studies as well um and there are symptoms that tend to um appear a bit later so the bit the cognitive dysfunction symptoms which is the brain fog and the poor concentration memory um this is concerning that uh for some people they appear not at the start of the illness they appear a bit later weeks in or months in uh and palpitations for example they tend to become more common later and there are symptoms which um disappear um so and they change but there is a common thread as well is that for most people with long cover the symptoms tend to be fluctuating or they come and go um and and that's certainly my my experience where there are periods of where you think you almost recovered or you almost i mean for me there were a couple times i thought that's it it's gone and then very good and it's and actually this really brings you down a lot because and and this seems to be a common experience i don't know if adam yeah have the same no it is it is exactly the same and i think there's a couple of things to say about this that what i've noticed it you know the kids went back to school what was it two weeks ago or three weeks ago and of course you know even outside of lockdown and and the era of of covid schools and children are like plague ships anyway and so at the beginning of term you always come back and and then they've got some cold or some sniffle and what i've noticed is that if i get a cold just a minor sniffle it just goes straight to my lungs and hits me like a freight train and i'm in that at the moment i don't want to make this all about enlisting sympathy from this esteemed panel but that is that is the experience that i'm going through and the other thing worth noting as well is that fatigue that word that was right in the center of the word cloud there isn't necessarily what i think a lot of people think it means it's not just tiredness right tiredness is part of fatigue but fatigue covers a whole range of both physical and psychological behaviors and and complaints which are sort of all pulled together into this one term that we use quite casually you know i'm pretty tired therefore i'm fatigued they're not quite the same and i think it's i think it we can almost do with a sort of a breakdown of what what fatigue really is because it might be that you have some symptoms of fatigue and not others and it's not just the same as being perpetually tired which i just think comes with middle aged niche i just wanted to ask before we move on from this introduction which is you know i think got on for 20 minutes um is there any parallel with this in any other illness you know can we hear about post-viral syndrome is it really unique this set of symptoms as you said it's very strange it comes and goes we don't really understand why are there any similarities with other viral infections yes there are other viral infections which um you do see similar patterns perhaps not the multitude of symptoms that we're seeing with covid and that remitting relapsing course that niserine and adam describe and other folks who are suffering with curvy describe is not so apparent in these other syndromes but you do see that and it's not surprising that it is a multi-system disorder so initially clinicians were a bit bemused by the fat people coming forward with a multitude of symptoms and and that almost uh contributed to uh some dismissal of folk you know coming forward with so many symptoms but it's absolutely um real and it's it's something you would anticipate given the nature of the infection given the multi-system nature of the infection that you would expect to see multitude of multitudes symptoms i'd also say um we talked about fatigue which was in the middle of your word cloud and that makes it really hard for individuals with long cover to get a diagnosis to get recognized by the gp because as adam says you come along to the gp with a different expression each time of tiredness fatigue not being able to do things not be able to think things through um that actually getting a diagnosis is hard and then getting a referral on for further investigation is harder still well and we're going to come on to what can be done and what is being done about long cobit treating it and recognizing it and so on i wanted to introduce the first poll so we've had the word cloud which is tremendously useful stimulated a lot of discussion we felt it'd be useful to know how many of you that are watching now or listening now um have had long covered or are suffering now from long cobid or how many of you know someone who's suffering from long covert so if you could go to the poll and just vote it's just a simple yes or no vote the question is have you or anyone you know suffered from long covered or experienced long covered symptoms so that would be a useful snapshot for us and i wanted to ask um and anybody on the panel can take this initially whether we should consider covid long covered to be the next stage of the kobe crisis because we hear you know things in this country at least are going in the right direction the vaccination program is going magnificently but is the next stage dealing with many perhaps millions of people who are suffering from long covered maybe paul yeah maybe i could start um absolutely this is going to be a major major issue if you if you think of the number of people who've been infected in the country and and then the proportion of those and it could be a big proportion and we were talking about symptoms that last more than 12 weeks um the estimate certainly from our dating maybe even a bit higher but from the office for national statistics well over 10 they were talking about their recent survey that over a million people have long covered i mean this is a huge problem and um we've really got to get to grips with it both from the research side to understand what is the uh the cause and the mechanism because if we if we if we can understand the mechanisms we can potentially find treatments to deal with those particular mechanisms and then also we need to find um ways of managing the symptoms uh and the best way of managing the symptoms and that is also an active research program so this is going to be this is this is huge and um you know we're just beginning to start now to understand what we need to be doing because there's very large numbers of people who are suffering right now well just to underline what you said we've had over a thousand votes already on that poll and 83 percent of people say they know someone or have suffered themselves from long covered so that's that's a fair fraction of people yeah up to pushing up towards 1100 votes now and what then is um are we going to do maybe maybe i could ask um nasreen what are the resources that are available now and what are the resources that we hope will become available as we go through into the future yeah so so i think um i have to first mention that long covert um is is a completely patient driven thing you know so the patient came up with the name long covered and really are the experts and the first resource that anybody everybody had uh was um was the um was the patient themselves so the support groups uh you know people supporting each other mainly on social media um and and kind of reassuring each other going through the symptoms so so this is not an official resource but i think it has to be mentioned that is probably the most important resource for people um to have that support um among them and then obviously the other supporters if people are um struggling they need to go and see their doctor about it and i think that's now it's hope i hope it's easier because in the first few months it wasn't easy and people were dismissed a lot because we just wasn't known so um it was just a lot of it was attribute to anxiety and that created more anxiety if you've got the symptoms and the doctors doesn't have no idea what it is um and you don't know how it'll all end um so that was a vicious cycle um but i think it's important for people anybody's listening who's got who who who think that they've got long covered and haven't been in touch with health service store they should now doctors are know more about it there are the long covered clinics uh to be referred to and i think it's really important to say that even though we don't know how to treat it now because we need the research there are conditions that could be underlying the symptoms that with tests and scans of things could be picked up on and could be treated and that could be life-saving things like blood clots or you know hot heart conditions um so i think it's very important for people to access the investigations that they need uh from their doctors let's go to the gp i just want to ask there's a question that a lot of people have voted up um which is this which is is there any evidence at all that suggests that um well having the vaccine because people now who have long coveted as you said for a million people or more will be being offered the vaccine so do we know anything about um whether that's uh perhaps helpful to the condition or um how should people feel about being vaccinated during that time that they have long covered so oh sorry nish do you want to i can make a quick start and then maybe others can chip and there's anecdotal evidence that people getting the vaccine actually get better um and the senses that actually helps you clear residual viral load and certainly doesn't do any harm to your long curved symptoms so we would encourage folk to come forward for their vaccination if they should have long covered welcome comments from the others yeah i mean i i i completely agree there was a very smallish a very small study recently published as a pre-print um that suggested that some some people improve most most people definitely don't get worse so there's no reason at all to think vaccine is is not recommended for long cover but it might be a good sign that it is and i think the the hypothesis um around how vaccines could improve long coverage is maybe around two things one is because the underlying hypoth of long curvature we still don't know but one of the underlying hypothesis might be there might be some persistent virus at kind of low low uh levels causing these symptoms and then you would then hypothesize that the vaccine could help with that but the other maybe more common hypothesis is some dysregulation of the immune system in people with long covert um and even for that i think there is a hypothesis that if you take the vaccine it's almost like a reset button for your immune system and that could then help your long covered whether that's long term or not we don't know can i can i ask you either of you uh or adam have you been vaccinated yet he's still too young yeah wow that's the that that phrase doesn't happen very much these days yeah i haven't i'm still i'm i'm in the low risk risk demographic group um about an interesting thing in terms of just being you know going going to the gp and this is no way a criticism of the nhs or all my particular practice who are excellent but it's taken a long time to get to the point where my personal symptoms and just the the principle that long covered is a real thing is being treated with a sort of clinical weight partly because it's difficult to know what it is we don't have the definitions we don't know how to treat it there's a whole the constellation of symptoms that all you guys have been have been talking about but weirdly in the in between i went i got a online consultation with my gp like two or three weeks ago and their initial response was try this inhaler which i thought i don't think this is going to be quite right but about a week later they got back to me and said i've just come back from a long covered training session and we think you need an x-ray ct scan and a blood test at the hospital which i'm doing next thursday so you know this is a moving target we are um gaining both scientific and clinical knowledge and clinical application of that knowledge um on it is it is happening now but we also know that there's a sort of element of postcode lottery to being treated clinically for these for for these symptoms paul a lot of people asking because a lot of people in the audience are suffering from lung cobit how they can help um in terms of the research um so is it the case that you can volunteer to be part of a study or is it that you will be contacted at some point hopefully so our study is is as i say based on the fantastic participation that we've had in our big programme um but it's it's fair to say that we we are definitely talking to um wanting to to understand the the patient experience uh nazarene is actually advising us and we we we have a group of people advising us including people who have long coded so i think um uh for our own study um we may uh want to involve some people from the community beyond those that are actually in our study already who already have long covert because we've measured it and i think generally i think there is a uh you know um a desire very much to involve the the community and how would people find out would it be through their gp or will it be well publicized if that opportunity arises i think for research programs i'm sure that people would be asking people to take part but i think that misery might want to comment on this because she's she's actually on our our patient advisory panel and helping us with this so um i i think i think people um wouldn't know about research you know if if there is recruitment there will be research and i think all of the studies have been funded and maybe niche one would want to come in well might are in the kind of forming stage now in terms of uh recruitment so um i think um uh you'll know uh for me at least i i mean i'm active on twitter with long covered so i if there are opportunities i'll definitely post them there and on other platforms i think it's all it's also important that um to say that people who have long covered the longest uh which are people in the first wave really need to be part of the research um and um and that's crucial bearing in mind that many of them didn't have any access to testing so that's one barrier but then the research needs to find a way around this because they can offer the most information because they've had it for a long time but i suppose that and that doesn't that doesn't apply to react because react have tested people from the start um i don't know nish if you if you have anything to say about that for your study well i i'd care what you've both said that if you were invited by any of us to take part please do so and also that we need people without long covered or people who've not had covert also to take part in our research and we'll be contacting those folks as well because we need to be able to compare the folks who've had long covered with people without so just because you haven't had any association with covid doesn't mean to say the research is unimportant you'll really make a strong contribution to our understanding of this condition if you're invited to take part please come forward um i would be delighted to see you just sorry just out on that point because we did a survey on for long covered through social media which was absolutely great uh but what what what's really valuable is to compare not only to people who've not had long covered who might be have less incentive to take part in research because they're they're fine but also people who've recovered from long coverage we really need to know about these people so uh that's really important sorry that's exactly um what this shows and what this ring says really really important so we we're going to be looking at people who've you've got long covered people who we know tested positive but then recovered within the four weeks people who recovered between four and and twelve weeks but also a large number of people from our survey that we tested who tested negative and is absolutely right we really want those people to take part because it's it's it's understanding the natural history of this new disease um in comparison with what you'd expect from similar people who didn't test positive it didn't get coded because that's how you're going to understand what are the specific features and what are the risk factors and what is what are the outcomes well it's really important thanks i wanted to ask the next poll question because i think it will stimulate some discussion which is a question to you um watching um which is what should be done in your opinion to support those living with the impact of long covered and we've given you five options for the poll that one is more long kobe clinics and i know we've had several questions on that issue about the long kobe clinics i'll ask that question in a moment actually where are they how many are they will there be more so more lung long cobit clinics long covered training to doctors and to your gps that's one of the options more research which is what we've talked about um national support groups or then there's a an option for something else another so i think would be really useful actually in about 10 minutes or so towards the end i'll come back and look at that because it'll be interesting to see what you think as many of you as sufferers would be the most useful thing to you um there's a question a lot of questions um the most devoted question actually which i'll ask to the panel is what recommendations you'd give to working people and by extension you might mean quite specifically actually they're employers who are finding it difficult to get back to work and in particular work in the same capacity that they were working in prior to catching covert now that they're living with long covered so so what what recommendations could you give and and what should people in that position say to their employers i think it needs the the the employers need information um they need guidance and information to tell them that this is happening um and it's happening on a vast scale and we and it's it's great that we have the ons figures now to tell us you know how big a scale it is uh in people experiencing long covert um so um i think it's not just on the the honest not just on people i think owners on the as far as the government to to kind of really you know communicate to the public and to employers that this is a problem and people will need time to recover people will need you know sick pay um that you know employment rights and all obviously one of the things that was demanded um by the um or parliamentary group um um in the first parliamentary debate on long cove in january was to consider uh long covered as an occupational disease because we know that people in certain occupations are more likely to get covert and therefore get long covered and the onus figures actually confirm that because the highest number uh occupation with the uh estimated long covered with with healthcare professionals and then teachers after that or people in teaching and educational professions so um i think there needs to be more awareness um because um and that's where the inequality society come because if you can afford to rest and if you can afford to take time off sick and you don't lose your uh earnings then you probably got a bigger a better chance of of recovering um and and people who who don't have that need support i think that's interesting actually the related question actually which has been the top voted question now which you did the power think lung covered will be classed as a disability and i suppose it's a what we're asking here i suppose is whether you said it may be classified as an occupational disease whether it needs classifying in order to provide protection uh for people who are suffering from it well it's not just an occupational disease it it certainly as as nazarene said i mean there were particular groups and healthcare workers is an obvious one um and education where people were more exposed and certainly early on in the in the first wave that was very much the case but it's also very much true that this is um being transmitted through uh community infection music-wide infection that's what we've been measuring in the reaction so so i think i think i i completely agree with nazarene we you know this has got to be looked at very very seriously because there are going to be people and you've got examples on this panel who i mean as adam said you know he has fatigue going up the stairs and people are going to really struggle to get into work and there's got to be some recognition that this is a disability i mean the issue is still we really got you know we as researchers have really got to work out you know what are the what is the context of the disease what are the mechanisms so that we can really understand what it is people are suffering from but i think it's got to be taken seriously because people cannot go to work if they're embedded in that which is which also relates to some of the things we were talking about earlier which is that the fact that lots of people have had covered lots of people had covered and haven't had symptoms and now you know whatever the numbers are maybe up to a million people have got some persistent symptoms that we're calling long covert which is that you know something that nezrin has been saying for months now which is you shouldn't suffer in silence right the reason we have to get these messages out there is that this is a real thing it's a real disease a chronic disease which has long-term um personal health impact which will have long-term economic impacts for but work and for the nhs and so on and there's a bunch of people out there we presume who may have these symptoms and just uh are thinking you know i'm just a bit tired this is a stressful time for everyone on earth um and and you know there's going to be a lot of people out there who are coping very well with the fact that they feel fatigue or some of those symptoms but actually might have a clinical diagnosis which is going to be both informative for the research and informative for their own health and how they should be treated so it's important really important that we recognize this the seriousness of of it as a as a disease modality and and in terms of you know personal health impact what's interesting actually i'm just looking at the poll is that it's quite striking to me that about well almost 1500 people have responded and about half of them have said the most important thing is research into understanding the illness and that's with five options so that seems to be the overwhelming preference that the the sense i get is people want to know what's what they're suffering from and i suppose the sense that as i've been looking through the questions there's a sense i think people would like to know how long this is going to go on for do we have any insight perhaps nish i can start with you do i have any insight into how long long covid persists so i guess a bit of good news is that people do recover and there's information from people who've been hospitalized so not from the general population but people have been hospitalized that um a variable proportion of them have recovered by about five months so those with relatively mild symptoms around 40 percent have recovered those with more severe symptoms a much smaller percentage around 10 so people do recover and we've talked about this earlier in this in this discussion that studying people who've recovered and understanding their pathways to recovery is a really great way of firstly under understanding the mechanism so that we can help other folk but also just understanding the disease so that gps um and individuals can help themselves to to recover there's a question actually that's coming up a lot probably unsurprisingly particularly from parents is what we know about long covered in children because because we hear that we know that children don't suffer as much from the disease initially but what about long covered in children so the link between um the severity of infection and long curved isn't strong so you can get long covered even if you've had very mild disease and there is research that's been funded at the same time that paul's study in my study was funded a study specifically about long covered in children and again like us recruiting children from across the country asking them about their experience the disease which may be quite different to adults and asking them about their recovery and about pathways to recovery and understanding the mechanisms so research is going on in children but it certainly does occur in in children it's not a group that we should overlook and if i may add again referring to the recent ons statistics um it's much less common in children but it's still um the percentage is seven percent um in those age two to eleven and eight percent of those eight twelve to sixteen who would still have at least one symptoms twelve weeks after testing positive than these in the children so they are lower than the adults but that's still um a concerning percentage because you know if you have symptoms for that for that long um then um infection should be regarded as bad news uh really for any age group and we you know don't need to be protected against infection particularly that we really don't know what's going to go up you know happen the long-term um consequences we need the research we said so um i think it's it's not um it's important to have that balance you know that children are less effective which is a great you know good news really about this pandemic maybe the only good news um but also not to dismiss it in children because it is there it is happening in children as well i think um just to ask there's an interesting comment here which is um which many people have voted for 80 people have voted for this comment which is the there's a stigma attached to long covered um there's a lot of people who say it's it you know i suppose it's online in other places it's fake it's nonsense it's a it's all in the mind i think we've sort of answered that but it might be worth commenting on because so many people have voted for that statement it was by andy who said that he's finding it personally difficult because of the stigma attached to it if i may say this is absolutely a crucial point because um it's so so so if you um you know if people start saying well you know you're imagining these symptoms i mean some of the comments around uncovered say well you know these are self-report symptoms well fatigue is self-reported reported there is no other way to assess it uh you know so most symptoms there is no other way to assess them um and what happens is if people have that a lot whether that's from their healthcare provider or whether it's from their friends or family uh then what they do is what we call internalize the stigma they then start not um you know doubting themselves and start not actually seeking help or support for their symptoms and that's even worse um and that happens in other you know unless as well like for example hiv so we've got a lot of examples of that and we need we really need to acknowledge that and remove it and there are certain groups in society who would suffer more from this stigma because they are less believed so you know classically you know what women and ethnic minorities are less believed about their symptoms and then it just becomes that vicious cycle of then not seeking help and there might be something that um healthcare could offer particularly around if there's a treatable condition as i said um you know at the start or just just support from others and rehab um so yeah big problem stigma is a big problem and we need to talk about it and and try and avoid falling the trap that you know other other illnesses uh chronic illnesses or other infection have uh fell in um in terms of that yeah i'll just show it very briefly adam because you're quite high profile and you've made it known that you're suffering from lung kobe have you experienced that um you know have you felt that there's a stigma attached to it in your interactions no not really um but i guess that's probably because i am you know in a privileged bracket in in society and what we know very clearly is that that you know medicine is heavily stressed stratified by various social demographics we know that very well with regards to race in in britain and in the rest of the world that um people of um racialized categories are far more likely to be infected and indeed to die from covid there's been attempts to sort of geneticize that that is a new word which i'm now coining which i think are is not particularly useful because these sorts of social disparities in medicine are far more easily explained by uh sorry these disparities are far more easily explained by social characteristics social phenomena than than genetic um it's very interesting that nish or paula coming back who said it indicated that those those racialized disparities and we're not seeing them as strongly in long covid as compared to covert the initial code infection and i would love to know what why if we have any i mean nisty you have any ideas as to why that would be and i'd love to know why too adam you know this is just we're all saying this is really a very new condition this information is just emerging and oftentimes some many of the research projects that people have there are very few people from ethnic minorities within those so again reiterating what paul and i have said before if you're invited to take part in research please come forward to do so because that's the only way we're going to understand why it is that ethnic minorities are not over represented in the long covert could it be sadly that perhaps the ones who are most vulnerable uh succumbed to the infection itself so didn't survive long enough to get long covered right we don't know and i'd like to perhaps ask paul there's a question here from steph hancock a lot of people have voted for it which is related we talk about different uh groups in society and and whether it's more likely they'll suffer from lung cobalt or not but stefan specifically if there's any evidence that it's more prevalent amongst young healthy fit females so perhaps i could ask paul but more broadly is there any evidence that particular groups are more likely to suffer so we we know it happens at all ages and we already discussed it happens in children as as well as in in adults it does appear that um women are more susceptible to long-covered and particularly maybe more middle-aged women possibly related to other autoimmune type conditions where we know that women are more susceptible um but yes young people can get it older people can get it and um i think it's it's so it's really a problem that goes right across ages both sexes um different ethnic groups but maybe not over-represented in the ethnic groups so yeah so i'd like to we're you know down to the last ten minutes um sadly but um we've got a last part of the discussion that we'd planned which is the impact of long covered on society and um so our last poll is that it's a question what do you think will be the biggest impact of long covid on society so so if you could you could answer that in the last poll um and uh whilst you're answering this i'll look at that in a moment um i'll ask the panel so uh maybe i'll start with them well who'd like to take it shall i start with nasreen um i'd like to get all your answers in we've only got 10 minutes so brief if possible but what do you think the biggest impact is going to be i mean we we that's what we were discussing really you've got these a younger age group you know suffering with this huge numbers we don't know how long it lasts and we don't know we don't we just don't know how this will affect um productivity i mean it's really painful every time you see the headlines about public health or the economy and we need to balance things and your shout well i'm shouting i'm shouting at everything saying but all of this long covert you know how will this impact the economy nobody's quantifying that and it's because we didn't and still really don't quantify the mobility from the pandemic we focus on the acute um outcomes of deaths and hospital admissions and we can you know forget about what's happening you know these these kind of chronic um effects and i think we really should learn for the next pandemics we need to we need to prepare our systems i mean if we get another virus and we could get an otherwise which is largely disabling rather than you know killing people how we're gonna respond to it if we don't have the systems um to to kind of quantify what it's doing and and to respond to them so yeah yeah just looking at the poll actually a lot of people saying um you know unemployment loss of jobs damage to careers economic impact you know it's um i think people are clearly worried about the impact perhaps nish i could ask the same question for you the the impact as you see on society so i agree with the economic impact there's information from the hospital surveys suggesting that one in five people have had to change their jobs or stop working this is a an economically productive part of the population it also impact on families that those people will not be able to participate in family life uh will not be able to uh help bring up the children so it's a huge economic effect that we will be seeing as a consequence of lancome paul yeah i mean obviously i agree with that but also maybe i'll just focus also on the health service we've talked a little bit about that but there's an awful lot that we've got to learn about how to manage this condition um and it's going to be an additional burden that the health service needs to deal with and needs to deal with quickly um so it's you know that's something that there's really got to be a focus in there in the coming months and years because this this million people some will get better some will continue to have symptoms and those will need to be managed adam yeah i agree with paul actually i just you know obviously it's that this is a complex interaction between a disease between society and between scientific research and um it's interesting that the poll the earlier poll said that the thing that people were most uh i kind of know about how it was phrased but the the the people were suggesting that more research is is the baseline to that which of course i absolutely agree with as a scientist and maybe there's a skew in the fact that this is a royal society event and you know probably a very scientifically literate audience but you know science has done really well in one sense out of the pandemic in that we've really focused society's um resources towards better research towards understanding it and of course the best outcome of this last terrible year has been the fact that we've got this vaccine after less than a year that is a huge success for science the fact that people like nation paul and this reading and others have extensive or expanding research projects to try and understand this is all great i am most concerned with the burden on on the national health service and there's an irony within that because we're sitting here saying you know get in the system go to your doctors report your symptoms and actually in doing so i'm putting more burden on the nhs um because they're having to deal with not just a pandemic but everyone else's everyone else's normal health problems at a time when they're being underfunded so that i think is my biggest concern is that the long-term consequences of a chronic and new chronic disease that potentially hundreds of thousands if not millions of people are suffering from is going to really impact an already beleaguered nhs there's there's a i'm trying to sort of get a sense of the questions because i've got five minutes left and there is a common thread to a lot of them which is so related to when we talked about um vaccines in the previous event there was there was a silver lining um which is the the research the the research effort that's been put into developing these vaccines is going to that knowledge is not going to go away and i think it was said that we'd made the progress that we would have expected to make in a decade in a in a year and that was a silver lining and is there a similar silver lining people are talking about other autoimmune diseases perhaps or other chronic syndromes me and so on and will this focus research on those sorts of conditions in a way that would not have happened had it not been recovered perhaps niche well it hasn't happened in the past and you're right to say that one of the positives that's come out of this funding has gone into the kind of research to really understand the risk factors the mechanisms the outcomes of long cove in a way that we've never done before uh with with up with these other conditions and we do hope that our research will shed light on these other conditions so that's a positive you know paul and i have both benefited from that um and the research funders have moved very rapidly to support this kind of research so that's a really strong positive that's come out of that and any other comments nezreen maybe i absolutely hope so uh that um i mean really getting um long covered and then doing a lot about it opened my eyes to the suffering of um people with other chronic illnesses i mean cfs fibromyalgia lots of other chronic conditions who've their conditions have been very much under research poorly understood for decades um and and absolutely we we need the research we hope the research would shed light um on on this as well so yeah and and but also i think the other thing we need to learn is we it's we need to learn to pay more attention to the less acute effect of everything i think that's a lesson we need to learn from this pandemic because everything in policy has been determined by these um by the deaths and the number of cases and the hospital admissions and and and nothing around what are the long-term effect of things and they're not they've not been measured so i think we that's something to learn for the future we need to have the systems in place to to measure it and that doesn't only apply to long cover to other chronic conditions well i think medicine needs to have a bit of humility in terms of we know how to deal with the acute problems much better and we listen more carefully to the acute problems uh but not so much to more to the to the chronic problem so i hope we learn that if i may add uh brian i think the the focus we saw on the backseat which has just been a tremendous success really accelerating everything by really years i think we've had we've got the same focus now on on this condition um you know the funding has gone in the the funders are looking for real answers you know quickly normally something like this would be you know years and years of of of work and that's really being you know everyone is focusing down on the problem we brought i mean both nish and i have brought together large groups of scientists to work on different aspects to try and really understand the mechanisms and i think you're gonna you know i think there is a silver lining perhaps that we will accelerate the findings way beyond what we would normally do under under a normal uh research grant that you know we've had in our previous careers as it were yeah so this could cross over into other chronic conditions that the knowledge that's generated by this focus that's that's the sense that a lot of people are asking yes well sadly we've we've run out of time it's seven o'clock and huge number of questions i mean thank you for all the questions i hope we've been able to shed some more light on this uh very serious issue um there's going to be a continuation of these events that royal society throughout may and they're all going to be stream live here on the royal sciences youtube channel and also you can watch the previous events so um so please do go there um as i said there's a conversation on twitter hashtag covered science um and uh all that remains then is for me to thank everyone that's submitted questions i hope i got through as many as i could and um to thank the panel for a fascinating discussion um thank you all and um please keep abreast of the royal sciences channels and we'll continue this discussion throughout may and beyond thank you very much you

Channel: The Royal Society

Views: 143,425

Rating: 4.4590693 out of 5

Keywords: royal society, science, scientists, scientific policy, scientific research, science uk, science research, international, international science, science education, science policy

Id: QsBbame6C44

Length: 59min 48sec (3588 seconds)

Published: Thu Apr 08 2021