Post-covid conditions (‘Long covid’ and other sequelae of covid disease)

hello and welcome to this webinar i'm fiona godley editor-in-chief on behalf of the bmj university of bristol and the university of newcastle i'm really pleased to welcome you to covet 19 known unknowns this series of webinars stems from an editorial published in the bmj back in the uh on the 19th of october by george davie smith and marcus monafo called covid19 known unknowns with the subtitle the more certain someone is about kovid19 the less you should trust them it was concerned about the polarization of debates and the hardening of positions on key issues making it hard to make progress in the debate and it called on us all to move away from certainty and to respect uncertainty it said acknowledging uncertainty a little more might improve not only the atmosphere of the debate and the science but also public trust and that is the spirit of this series of webinars on november 20th we had a full day's webinar an overview of the issues which is available on the bmj's youtube channel and that's where this session and all the others will be posted today's webinar on postcovid is the sixth in the series of two hour webinars previous topics have been children and schools testing in asymptomatic people vaccines zero covered and new variants and i'd just like to thank my colleague cameron abassi for sharing the last two sessions in my absence the next webinar in two weeks time will be on or sorry i should say on may 13th i think that's the date we'll be on covid and mental health our thanks to zoom who have provided the license for this webinar free and as for this webinar we're about to enjoy we have over 2 800 of you registered to join from all over the world which is a fantastic number we aim to look at key aspects of this fascinating and very troubling phenomenon what is long-covered or post-covered what good data do we have and from which parts of the world and what do we know about the prognosis and available approaches to treatment and rehabilitation we've got some great speakers the timing is going to be very tight and we want this to be as interactive as possible so if you could post any questions via the q a function and we will try to put as many of these as possible to the speakers after each session and in the discussion at the end which will be chaired by phil hammond please also tweet using the hashtag covered unknowns so we've got a lot to get through i'm gonna hand straight on to the first session which is about um what do we mean by long covered and post covered chaired by george davey smith thanks fiona uh so for this first session i'm pleased to introduce as the first speaker elaine maxwell who is the author of two ni nihr reviews of enduring covid symptoms and the knowledge broker for an nihr so i'll hand over to elaine just sharing my slides thank you george so um i'm going to talk about the evidence that we reviewed in our two reviews about what is long covered or post covered and one of the challenges is that the definition of the phenomenon is still quite fuzzy and that makes it difficult to research so different terms are used both in the uk and internationally and nice in december identified a postcode syndrome but they didn't specify what the symptoms might be long covered is a term coined by people with lived experience and that allowed them to challenge some of the initial assumptions that healthcare professionals and researchers had patient node research has identified a different symptoms so that's a very heterogeneous group of people and we have this tension currently between keeping a definition open enough to absorb new findings as they emerge versus the need for a founded definition for research and to identify and treat different symptom clusters or syndromes trying to make sense of the evidence that has been published is hampered by the fact that they all use different case definitions and different time points often long covered is described as somebody reporting at least one of a long list of symptoms but they don't all have the same symptom and the requirement for laboratory confirmation of code 19 varies much of what has been published not all but much of it is descriptive and it's cross-sectional and it focuses on people who've been in hospital and the biomedical consequences and less is known about the social and psychological consequences which the patient groups tell us are very severe for some people it is clear that a significant number of people have enduring symptoms and for some of them it really interferes with their day-to-day life it doesn't appear to be related to respiratory symptoms from a curbid 19 infection so there are some people with long covered who only had loss of taste and smell and a number of studies have shown that people with a history of curvid 19 are more likely than control groups to report symptoms three months or more later one of the things that we identified in both our themed reviews is that seldom heard groups are rarely seen in the prevalence data and also that cross-sectional surveys may miss the corona coaster the remitting and relaxing cycle that a lot of people's long code could report and despite this there's still very variable prevalence estimates so the ons has the largest data set in the uk and i know that ben and dan are going to be talking about that later so i'll leave that to them but just a note on the 70 000 people who still had symptoms at 12 months given that last february relatively few people in the uk have had a covered infection it'll be really interesting to see how this figure increases over the next nine months as the infections from wave one and wave two start to mature studies of people reporting symptoms 6 months after hospital discharge vary from 47 to 76 and one study in the usa reported that 30 of people who had not been to hospital were still symptomatic at six months the prevalence does seem to be higher in people who've been in hospital but the incidence is higher in community cases because in the uk there's a tenfold difference between people who've tested positive for covered and people who've been admitted to hospital so we don't know what causes long covered but there are some data that suggests some plausible propositions about what might be causing it now any of these things might be independent or they might be interdependent and some people have more than one of these at the same time so there are definitely some people who've got post viral fatigue that resolves by three months and there are definitely some people who meet the criteria of chronic fatigue syndrome and we've seen that with previous sars epidemics we don't know a lot about chronic fatigue syndrome and in fact this has shown a light on that but it's too early to say that everybody who's got long coveted has got chronic fatigue syndrome we know that some people who've been critically ill exhibit symptoms that are very similar to lawn covered so post-its syndrome is well described with a third of people who've been ventilated and up to half of people who are there for over a week developing icu acquired muscle weakness and many of them then develop cognitive dysfunction and insomnia and ptsd and many of them their admission isn't related to any virus we notice that from the data that people who are discharged from hospital having had a covered infection have higher rates of multi-organ damage than control groups but we also know from the cover stance study that low-risk people who were not admitted to hospital also show organ damage after a covered infection and there's a small study from france that looked at people with symptoms lasting more than three weeks compared them with control group and found brain biomarkers that are associated with cognitive impairment and autonomic dysfunction we also know from the data that people discharged from hospital can have high levels of d-dimers for some time afterwards and an italian study reported that 17 of their patients exceeded the threshold for pulmonary embolism three months after discharge so there is a discussion in the literature about whether microvascular injury is the cause of persistent lung problems in people with enduring symptoms we also know that uh people who've had covert 19 have raised inflammatory markers and some studies have correlated that with organ damage and also symptoms like reduced exercise tolerance but people who've had an asymptomatic are very mild infection are seen to have markers related to mitochondrial stress eight weeks after the initial infection and some people who've had covered have altered get microbiome and that's correlated with inflammatory markers and some of these people with long covid have symptoms that are very consistent with autonomic instability that may well be immune mediated we also know that there are a significant number of people who still test positive for covered 19 for quite a long time even though they may not have symptoms of it and that has led some to suggest that viral persistence may trigger a late onset immune response that explains long-covered symptoms so this wide range of potential pathology plus the very wide range of symptoms means that it's really hard to identify what the risk factors are and we're probably going to have to divide long coverage into more homogenous subdivisions to really understand the risk however at a global level it does seem that symptoms are more commonly reported by women and some have said this may be due to different t cell responses that are seen in other conditions that are more common in women people of working age are more likely to report symptoms and the risk of readmission has been found to be greater people under 70 but it's important to recognize that longevity has been reported in all age groups the data on ethnicity is a bit less clear both study and ons report a higher prevalence in white ethnicity groups but readmission seems to be more likely in minority ethnic groups i think this just illustrates the difficulty about using an umbrella term and then trying to identify risks unsurprisingly perhaps social deprivation and pre-existing ill health correlated with reporting symptoms the real conundrum though is an understanding of what the relationship of the initial infection and treatment for that is to the development of long covert whilst people who've been in hospital do report more long covered follow-up studies haven't been able to associate it with the level of intervention in hospital and the foster study found that treatment with steroids in hospital wasn't associated with recovery so i think at this point all we can really say is that we have moved from some of the unknown unknowns to understanding some of the known unknowns and quite a lot more research is needed thank you great thanks very much elaine uh so i'm now going to uh hand over to uh joe house uh and uh joe is a reader in environmental science and policy in the university of bristol uh and he's speaking uh here as a long-covered patient um hello everyone and and thanks for all those in attending today um so um i'm going to start with an apology actually because i'll probably forget to say things i wanted to say i'll stumble and i won't be able to find words i might yawn accessibly especially by the time we get to panel um i'm in normal life i'm a university of bristol lecturer and giving talks is my bread and butter and and actually my passion as well but now it takes a lot of effort takes me at least four times as long to do anything cognitively as it did before and i'll have to have a lie down and sometimes i can't do anything in fact in order to give this talk i've got my fellow long-covered sufferer nikki smith who's going to join the panel later as my backup because from day to day i can't tell if i can show up to do something like this so this is my reality this is the reality for 1.1 million people in the uk right now according to ons i can't speak for 1.1 million people in the uk and more worldwide but i do hope to share some of our experience from some of the many support groups that i belong to and thanks to monique and paulina for the illustrations too um so there's many many people with long covered and i just gave a little bit of an insight into me but my husband and i both have long covered um for a year now um i used to love to cold water swim and dance and now on i have a heart condition and arthritis i get short of breath i can't even always make it up the stairs in one go um we have two sons one with multiple medical conditions um but now instead of us being his carer him and my other son are our carers they could tell you about sofia young nurse and midwife who's still having high temperatures a year later every day and there is no long-covered clinic in her area for her to go to karen a hospital pharmacist who tried multiple times to go back to work and has now at 12 months just had to stop work and been diagnosed with multiple clots all over her body a friend lou who's a single mother of an autistic child and used to run a parent carer support group that i was part of and now she needed to use a mobility scooter to leave the house and um and and everything tastes disgusting to her even water from the tap or sammy a midwife and well-being coach her and her daughter both have long covered and and struggle to walk great distances or manage school work so there's a lot of us ill out there and we're all different we all need individual treatment but we also need holistic treatment that takes account of everything that's going on for each one of us and that's very complicated but there are some real barriers that we're finding to get the treatment that we need the main barrier is actually being believed now i am these were quotes i took for when i talked at the nihr webinar six months ago when we brought the first report and um i'd like to be able to come here today and say this is different but actually these comments are always still relevant to what people say today and i'm just going to give you a few seconds to read so the problems about being believed happen at all levels at gp level when we end up in a e uh when ambulance we have to call ambulances um even when we get into clinics and from family from friends from employers um things have got better with the nice guidelines and more in the newspapers and the media and that's really helped but the reality is there's still many barriers for us to access treatment this was a survey that was carried out by the long covered support group and you can find more details of it on the website um 74 of people currently are struggling to access these long covey clinics that have been set up and that were announced last year of the 286 survey respondents um 181 have been refused referral by the gp um because of not being believed because of lack of positive tests which has been a real barrier and continues to be and many of us in the first wave particularly there were not available tests unless we were hospitalized um or you know there's been great that clinics have opened but already some have even had to close temporarily because they're um oversubscribed or because the hospital's under other pressures um people are told uh you've not been ill for 12 weeks yet when actually the nice guidelines say we can be referred from four weeks and other people have been told oh but you were recovered ages ago you can't possibly still be that some may even get refused when they get to the clinic or there's not clinics in the area but of those who were referred successfully since 18th of december about half have actually been seen face to face or on telephone although some are only getting questionnaires and then referred to them your coverage recovery website which is not really that the care we need or the level of detail and support so what do we need uh we need recognition of the number of us we need research and we need rehabilitation many of us haven't been ill for such a long time so what what are some of the barriers to that um partly knowing what sort of support we need and what is available that's quite hard for us to tell us patients the um the pathways the medical pathways can be quite complicated and often the doctors don't know the medical pathways for referral to long-cover clinics for example there's very long waiting times and lack of services there were anyway before the pandemic but that's obviously exacerbated with the pandemic and with the long cavity clinic some people are being told they won't get seen till next year so it was great that there was 10 million announced last year last financial year for long covered clinics but when you think that there's 1.1 million people with long coverage that's obviously less than 10 pound per person and new funding of 24 million has just been made but that's still really not going to hit the vast expense to the nhs um and and also the you know loss of income and the loss of workforce and the loss of taxes there are and i would just say that also a a lot of the people who are ill with long covered are medical and healthcare professionals themselves so that puts further strain on services um often we um we're excluded for the full range of conditions we have so you might actually be sent to respiratory or there might be a focus on respiratory or there might be a focus on physio but not the full range of conditions and symptoms and and there's been it's very difficult for a lot of marginalized groups um elaine talked about you know the prevalence and ethnic minorities and the prevalence in children but parents of children with long covert have been finding it particularly hard to get access to care and support and for it to be acknowledged uh we might face stigma and peer pressure to go back to work on financial pressure to go back to work and many of us have tried working tried to work through bring back to work crashed out again and because pushing ourselves before we we recovered sends us to bed and takes us back a huge step um the the issue about excluding non-tested people um from accessing medical support and clinics but also in a lot of the research that's been funded what we're seeing is people will only do research on people when they've got a positive test and the trouble with that is it misses out all of those of us in the first wave in march who are very ill and weren't tested but have been diagnosed by uh clinical conditions and circumstance and and that's a whole six months of long-term data that's not being collected and research that's not being done um and on top of all that we're ill and it's really difficult to do things and cope with all of this when you're ill and you've got brain fog and you're absolutely exhausted this this data elaine mentioned about the impact on on different aspects of our life and this data is from an ihr survey but it chimes with the ons data and some other recent publications that have come from patient groups as well it's having a massive effect on our family lives many of us are carers who can't care anymore many of us are not back in work at all or only able to work part-time or have lost our jobs because um because we're not able to do it and we've had to be replaced um and and that the costs of being ill as well as losing income and all these different treatments and supplements and everything we're desperately trying um all adds up um so um i think what we'd look for is is really to have some kind of support if we had better support while we to stay off of work and to actually be able to recover it would be less of a long-term burden something like um a furlough scheme but for the ills so we can get better and fully recover and get back into work um that the whole system as well for going back into work for and then this is two in the university and and lots of my lots of long covered medical people have told me this you you the the model is that you go back when you can work 50 time and be full time within two months and that's not something most of us can manage so we need help from unions and care workers citizens of ice and just think that when you rest of you come out of lockdown we will still be in our bedrooms those of us not hospitalized this wasn't a mild disease many of us were terrified many of us wrote wills and wrote letters to our children we've been ill for a long time and 12 12 months for treatment is not just even waiting 12 weeks being very ill is ingest so we need early support to avoid the long-term problems there's a lot of mental health problems associated with being chronically ill and having been scared and been very ill and not being able to access help and not being not knowing not being able to plan for the future but our anxiety isn't causing our illness it is the other way around and we need help for both um we'd like better information about how to get better for those of us who have exercise intolerance we can't do the graded exercise therapy we have to take things carefully we might have heart conditions that we do or don't know about so we need some really careful support around paced individualized rehabilitation and it would be great if we had guidance for medics and schools and employers so that they understood what's going on with us better finally i'd like to come back to this comment that was in the nihr report nihr called us experts by experience we're not well people but many of us are professionals and people from all walks of life and we're fighting hard and we know what's going on and over the year we've been supporting each other and we've built up a lot of knowledge about what's going on and what can help us so we'd like to see ourselves included we need policy and health and social care we need employment and financial support to make us better but we want to be engaged with that policy and that planning this is a new disease and it's emerging and we are living through it and we have gained a lot of expertise so what i'd like to say to you is please work with us and think about how we can work with you to best share our learning um i'm a member of loads of groups some of which are mentioned here but the covid19 research facebook group is one where researchers can engage with people with long covid um and anyone's welcome to join um thank you very much thanks very much joe that really puts into perspective what we're talking about here uh this evening um the the last uh speak on uh this session is um science journalist laura spinney who wrote an excellent book uh about the 1918 uh influenza pandemic pale rider and um and laura will give some historical um perspectives uh on the commence situation thanks very much george um so i'm also going to start with an apology just to say that unfortunately i have to leave soon after this so um sorry i found if i'm not able to answer any questions um as i understand that this webinar is about unknowns uncertainty and uh history offers plenty of that and just to give you a startling example to start with the so-called russian flu which uh was the pandemic that preceded the so-called spanish flu of 1918 so the russian flu happened in the 1890s and is estimated to have killed one million people um it's now there's a now a theory that is being taken quite seriously that it wasn't a flu at all but it was caused by a coronavirus one of the four that now um uh causes the common cold and may have spilled over and caused that pandemic at that time in which case the um mainly it has to be said anecdotal documentation of a wave of nervous disorders that followed in the wake of the respiratory symptoms becomes interesting uh from a comparative point of view with long covered and there isn't a great deal of data about them that's the problem but there is for example speculation that uh it might have inspired edvard monk when he painted the screen so moving on to the 1918 flu the so-called spanish flu um the suspicion that it was a a chronic disease uh came about already in the 1920s as soon as it was over essentially and and it was very clear that both the disease itself and the the longer term the acute disease and the chronic symptoms affected every uh organ in the body it was very multifarious those symptoms as with covered um and uh so just to give a sample of the of the sort of symptoms that were documented there was fatigue lethargy uh it was blamed for example for causing a wave of lethargy in tanzania uh in 1918 which meant that people were unable to and already depleted population was unable to plant when the rains came at 1918 and it's been blamed then for uh triggering the worst famine in a century in that country the so-called famine of corms there was depression psychosis um there was a study there were studies conducted for example at the boston psychopathic hospital where people were um so-called recovered flu patients were um diagnosed with dementia precocks which is a as you probably know an obsolete name for schizophrenia but those people mainly recovered within five years a long time but still they did recover whereas dementia precocks was considered incurable um so there was a discussion at the time as to whether a new label was required for this flu triggered syndrome there were also cases of auditory hallucinations visual hallucinations heart conditions and breathlessness again so uh also very wide-ranging the data unfortunately are mainly anecdotal and there's another major problem when you're thinking about the 1918 flu which is of course that it overlapped with a war so um for example if you're thinking about the uh um psychiatric symptoms of uh that may have been connected to the flu uh depression depression can we know be caused by a virus traveling up the olfactory nerve as the flu virus can um and causing inflammation in the brain but depression can also be a result of uh bereaval bereavement and social upheaval so that is a big problem whenever you're thinking about the 1918 flu but because of that some of the most interesting research comes out of countries that were neutral in the war meaning that they allow you to disentangle the contributing factors there is an intriguing study out of norway which very frustratingly still hasn't been published i'm not quite sure why it wasn't published at the moment when i mentioned it in my book either in 2018 the researcher is a demographer called sven eric mamlund and he looked at the records of psychiatric asylums in his country between 1872 and 1929 and he found that in each year in that interval when there was no pandemic there was a handful of a few cases of mental illness related to flu admitted to the asylums in norway but in the six years following the 1918 flu pandemic the number of admissions was seven times higher than the average in non-pandemic years um so this study comes with all sorts of caveats apart from the fact that it hasn't been peer reviewed uh notably it's impossible to know what those people were suffering from it's even more difficult than impossible to know uh to link their symptoms to um to the flu that they suffered previously for sure but with all those caveats [Music] sven eric marmaland concludes that they were probably suffering from some kind of post-viral syndrome and that if that was the case they were almost certainly the tip of an iceberg because at that time most people would not have come forward to um uh report their symptoms there is one other potential uh after effect of the 1918 flu very controversial which is the um subsequent overlapping pandemic of encephalitis lethargica known colloquially as sleepy sickness which washed over the world between about 1917 and 1925 peaking in around 1921 it's thought to have affected around 1 million people worldwide a third of them seem to have recovered a third of them died and a third of them went on to develop years later a disease that resembled advanced parkinson's disease this is the these are the patients that oliver sacks described in his best-selling book awakenings um who were helped eventually by the parkinson's drug el dopa but only temporarily um and the thing about encephalitis encephalitis lethargica is the debate as to whether it was linked with the 1918 flu started in the 1920s is still not resolved because nobody has ever found viral rna in the brains of encephalitis lethargic of patients at post-mortem doesn't mean it's not there perhaps the techniques aren't sensitive enough um but for the moment uh the jury is out there is a theory however that is being investigated at the moment and that some people are thinking long covered might might help with um that an infection including a respiratory infection can trigger perhaps a brain disease in people who were somehow predisposed genetically so that's possibility uh that the 1918 flu opens up to investigation but of course we have to be incredibly careful different diseases different contexts uh different viruses belonging to different families so um thank you very much thanks so much laura and that was a great first uh session i'm gonna hand straight over in the interest of time to fiona godley who is going to chair the next session thanks very much george and thanks so much to the speakers in that first session um this next session is about uh international experience and and in particular what and where are good data available about lauren kobit or post covert and we have three excellent speakers the first of uh a pair of speakers we have ben humberstone and daniel are you carney from the office of national statistics in the uk over to you both thanks fiona i'll just uh attempt to share my screen um and hopefully you can see that so what we're going to present here are the results of two studies that we've done um the first of which looks at um follows up a um self-reported long-covered on the basis of a social survey of around about 400 000 respondents who we follow up weekly to begin with and then monthly for a period of 12 months and gather information about their experience this has been driven by some of the discussions that we've had with um colleagues and um and patient groups and others to try and find out what the what the lived experience of of long covered is like and trying to calculate the prevalence so that we understand what the impact on the economy um and individuals lives their ability to do the things that they would normally do as so well described by joe earlier and then i'll hand over to dan who will cover um our study on multi-organ impairment post hospitalization so don't know if that's moved on yes i think it has yeah okay great stuff so um our uh estimated sorry ben you want to put it on presentation view is that possible it certainly is apologies for that sorry i think it was that one that one yeah that doesn't matter i say it's possible i've got it beautifully on the screen in front of me which is always um if i try again oh geez uh so the the what we'll be talking about is the um is the prevalence that's no better is it doesn't matter ben honestly it's very good thank you that's very kind of you uh piano um so estimated prevalence we've got at uh 1.1 million that's self-reported long covered that irrespective of tests that's people's experience of um of long covid um around 700 000 had uh symptoms for at least 12 weeks 70 000 of those have had symptoms for at least 12 months so these are large numbers of people who are experiencing symptoms for a long time um when we looked at we also asked a question about the impact on day-to-day lives the activity limitation uh including um so did you have no activity limitation was your activity limited a little or a lot and we found that that 200 000 um actually had their activity was limited a lot so that meant they weren't able to do day-to-day activities the types of things that we take for granted uh about 1.7 of of the total population of the uk have got um got some form of of long cove it's self-defined or self-reported of those it's about two and a half percent at ages between 35 and 69 so that's a large proportion of the working age population so that gives an indication of the type of impact that this is going to have on the on the economy as we move forward so getting a really good understanding of this is so important i shall move on now to uh the percentage of study participants reporting any of 12 symptoms so we picked the 12 most um most frequently observed symptoms um and looked at around 22 000 individuals who had had a positive covet test we then looked at a um control group of the population who were matched on age and sex to see whether they had had uh any of the symptoms that we were talking about to see what the prevalence of those symptoms was like in the um in the the general population and the prevalence amongst those who had had covid and were moving into long covered with symptoms of of more than 12 weeks uh the numbers were eight times higher so that there's something quite significant uh going on there i'll now hand over to dan for the multi-organ impairment thanks ben uh hopefully you can hear me uh okay um so yeah so this in this part of the study was a separate study we worked with colleagues at university of leicester um at ucl um and nhs digital um to investigate post-discharge complications amongst 48 000 patients who are hospitalized with coving 19 and using electronic health records from all nhs patients and gp surgeries in england until the end of september last year and this study was published in the bmj um just two weeks ago um so over a mean follow-up time of 140 days nearly one in three patients were readmitted hospital more than one in ten patients died after discharge um post-discharge diagnosis rates were greatest for diabetes major adverse cardiovascular events and both at around 130 events per thousand patient years and to explore how these rates compared to what we might expect to observe in the general population we one to one matched our 48 000 code with 19 patients to controls on the basis of demographic and clinical characteristics um using 10 years of health records across nearly 50 million nhs patients so compared with individuals in the general population uh discharge covered 19 patients experience elevated rates of diabetes cardiovascular disease kidney disease and liver disease and in particular we can see the rate of cardiovascular events was around three times higher in coverage 19 patients than in match controls and crucially the rates of all these adverse events remained elevated when considering only instant cases as shown by the chart on the right where we exclude anyone with a history of these conditions from the analysis these results demonstrate that individuals discharged from hospital after covert 19 face higher rates of multi-organ extra pulmonary dysfunction compared with the expected risk in the general population while the results don't confirm the presence of a causal relationship between covet 19 and subsequent mobility they do suggest a statistical correlation that warrants further investigation and our findings suggest the diagnosis treatment and prevention of postcode syndrome requires integrated rather than organ-specific approaches uh next next slide please ben so what are the known unknowns at least from our perspective as statisticians with uh with an interest in public health and the possible consequences for socio-economic inequalities so in terms of population prevalence um of sub-acute symptoms it's not clear how the vast number of people reporting symptoms on our survey will translate to clinical diagnosis and referrals we also found that around two-thirds of people self-reporting long-covered said that their symptoms are having an adverse effect on their day-to-day activities and clearly these are the people who are most likely to present in primary care however it's not yet clear which symptoms or groups of symptoms are most highly correlated with activity limitation knowing this can inform the treatment pathways being offered to patients and it's something we're currently working on in terms of post-coverage organ impairment a number of studies hours included have recently been published with a focus on patients hospitalized at the acute phase of infection however organ dysfunction in non-hospitalized individuals has been far less well characterized several small-scale studies have demonstrated multi-organ involvement and mild impairment in low-risk individuals but further researchers needed to understand the incidence at a population level we're attempting to do this by linking coveted 19 infection survey participants to hospital and primary care records recent studies of hospital patients have shown that risk factors for prolonged symptoms include middle age female sex and comorbidities although the overall the evidence is mixed and risk factor studies outside of hospital settings remain scarce as a disease etiology is uncertain so too are the risk factors particularly for long-term consequences and finally the potential socio-economic burden of long coverage is clearly huge we know that early attempts will be made to quantify this but it's not going to be possible without with any level of precision without reliable population level estimates of the impact on work education and health and social care needs thanks very much thank you so much ben and dan um that was a tour de force i'm going to go straight on to our next speaker in the hopes that we can um pull all this together in the discussion at the end of the of the total webinar um time is tight as i mentioned earlier so if i move on now to our second speaker simone bernatti who is from the division of infectious diseases at the auspidale papa giovanni in bergamo in italy over to you simone hi and good evening to everybody let me share the screen and can you see it properly hope so good evening and thanks to you for your invitation my name is and i'm an idiot's passion we haven't got your slides up just yet okay uh let's try one more time uh like this is it better no we might ask i wonder if nicki or someone back backstage so to speak could um you because i think you've got the slides that have you nikki sorry hey sorry no it's not my fault i'm sorry can you see it here now we have it on you go okay you have it we can see it now yeah okay so and you see it in presentation view yeah anyway i don't have any sort of financial relationship to disclose but i admit to believe in the existence of some code-related long-lasting condition not just explained by psychological or environmental circumstances in the last january i co-authored this small paper with a lot of people i'm talking on behalf of all of them we are based in bergamo which is a small lovely town in the north of italy as you may know lombardia was one of the hardest region in italy to be struck by a kobit epidemic and notably it was the first region of the westernized world uh to have this problem and in the first wave of the epidemic we recorded an excess of 5 000 deaths compared to the previous year so uh in the wake of this disaster we struggled to prepare an intervention and uh to for survivors and our aim at that point was mainly to assess for a poster chronic illness disease and traumatic stress disorder in that time we didn't even suspect the existence of long covid so what we did we contacted personally by means of uh the administrative people in our hospital all the people who had been in contact with our hospital admitted or discharged from the emergency room and we wanted all of them to come in person and be seen uh uh personally by our doctors so it was quite exhaustive uh and we arranged the with the help with the caregivers to be able that everybody was actually coming but it is a population very concentrated on the hospitalization stages this is an overview of what we did as you see uh there was a nurse lad and psychological and physical therapist evaluation and an infectious diseases consultation and after that if any other investigation was needed at that point it was done this is the cascade of enrollment and uh what i want to underline here is that from uh 2 600 people eligible for this intervention at the end of the day just 57 of them uh actually was uh enrolled in our study and the population is a population of uh prevalently male and elderly uh subjects so it reflects quite strictly the epidemiology of a severe covalent pneumonia as we can see also if we look at the maximal oxygen requirement during the episode just 30 percent of the people were not admitted and it was the ones who didn't need oxygen and were breaking air but how uh representative is this sample to the population of all saskatchewan infected people this is a a key issue and that we can try to depict the representativeness of our sample if we go to the excess of that recorded and the estimated case fatality ratio of this population and we can see that our sample is uh is not at all representative because uh uh 1 500 people are just about the 2 of the people infected by sarskoftu in our province so we have to take this uh clearly in mind when we talk about the results of our study also the timeline is very important if we consider 84 days as the definition of possible post covet syndrome uh uh for the nice guidelines in december uh have been suggested and we see that more or less our our patients were seen at about 135 days after the onset but if even some of the patients that were qualified as recovered had they have been seen earlier we probably would have classified them as people with the symptoms persisting symptoms how did we assess the symptoms it was a physician questioning on a specified symptom list but the final question and this is very important was always as the patient recovered yes or not i think that it is very important to rely on semi-quantitative skills this is very useful uh because it helps the objectivity of the examination but it is not just enough this um the idea behind semi-quantitative scale is that of a minimal interaction principles but symptoms need to be explained together with the patient uh we needed to um the physical the history taking is a two-way discourse we cannot just a feelings course and this is probably some of the uh problems uh we have while we rely just on a symptoms list to assess those patients we have many biases and the most important uh is a recency bias according to me uh the fact that a patient when talking about his uh current status is not um [Music] talking about what uh he had in the last weeks probably is referring to the the last few days and uh we know that long covey is a fluctuating illness so this is something that has to be captured very quickly very very very carefully by our interview uh so sad uh 191 patients 76 of them uh seen at the more than 84 days from the onset of disease so the potential post covetous uh 39 of them were not recovered were considered not recovering i don't have a fine-tuning a statistical analysis but uh by simple tests we can say that the majority of them were female the age is not a big distinction among the two groups and also it makes not a big distinction the fact of having being admitted to hospital but if we stratify uh the the two groups according to the severity as estimated by the oxygen requirement we see that a big part of those patients actually uh probably suffer from from poster intensive care unit disease because there is a significant difference among the recovered and and postcovert syndrome in the latter group we have more patients who stayed in the icu another point i would like to underline is the role of the instrumental tests uh because we always look for instrumental tests to substantiate an impression which comes from the history taking but that we use them in a uh should i say off-level uh way we do not have any validation of those tests so we cannot really rely on them completely if we look to the uh dyspnea uh this now was uh complained by 20 of the uh sample of our cohort but if we look to the mrc which is the scale we used uh for uh assessment of the visneya and if we look to the dlc reduction which is the uh reduction of the transfer of the monoxide uh carbon monoxide across the lung intestine we see that the agreement uh among those three uh variables is very low is miserable so uh we have to do something more and we probably i suggest uh we suggest that we have to uh study different cutoffs because those uh instrumental tests have been studies for um have been taken as such from studies from lung physiology and other diseases so they probably need to be adapted to this particular situation which has of course still to be defined so my conclusions um both hospital-centered and larger population studies likely suffer from information and selection biases and reported symptoms most often self-improve a long time so the moment of assessment is crucial semi-quantitative quantitative quantitative tools and instrumental tests can be misleading uh especially because we do not have any pre-coded reference and because we use off-level cutoffs and we need to be aware of the convergence and interaction of different conditions as it has been said just before the nouns uh postcode is a mix of different interpreting condition and i don't know how to better separate from each other self-improvement is slow but it occurs and we should ask ourselves to what extent does it occur and what predicts such improvement we need to train our diagnostic tools and we probably need to study them their cutoffs in a different way and also i think that it is very important to capture this day-to-day fluctuation of symptoms because this is a probably indicating a mechanism which is specific of this condition we need of course objective biomarkers because the symptoms are cannot be a gold standard for definition of this condition and after that i uh i just want to acknowledge the the work and the collaboration of this large group of colleagues and uh uh i want to tell you that our project is uh ongoing and open to any kind of collaboration and suggestion and i thank you very much simone thank you so much for that um very very impressive rundown of a great deal of work with lots of questions remaining thank you very much i'm going to hand on to our third speaker then we have maxim takatake who is from the department of psychiatry at the university of oxford and also affiliated with harvard medical school and simone just needs to stop sharing your screen over to you maxim brenda i hope you can see that let me put that in full screen yep can we see the slides oh now you know how to do that you need to tell us all how to do that but i'll carry on okay so i'm hi everyone and very glad to be here um i'm going to speak to you about a study that we've published in the lands of psychiatry um two weeks ago and where we looked at the outcomes at six months in terms of mental health and neurological health in patients who had a diagnosis of covets um so there were three questions really that we tried to um answer with this study the first one is how common are neurological and psychiatric disorders in the six months after a a copy 19 infection and we looked specifically at 14 individual diagnosis and those included things like um stroke which is the blood clot that reaches the brain brain hemorrhage dementia parkinsonism and as well as psychosis anxiety and depression and then the second question that we asked was whether the severity of kovitz 19 and illness affects how common those diagnoses are and so by severity what do we mean and what we what we used as i guess severity factors was whether a patient with kavit 19 had to be admitted to a hospital um if so whether they were admitted to an intensive care unit and and whether they had encephalopathy which means that there is evidence of the brain being involved um as part of the acute illness and then the third question is was whether um the outcome were more common the sort of neurological and psychiatric disorders were more common after a diagnosis of of covet compared to other infections so we used influenza and other respiratory tract infection as as control cohorts so how did we do the study well we used data from a large electronic health record network um mostly in the us of 81 million patients and accessed via the trinetics platform and we measured the incidence of each diagnosis in the six months after the diagnosis and we compared with matched cohort which means that at baseline that is before the either they had the flu or curvit the cohorts were relatively similar in terms of their age their race their sex their and their comorbidities and the general health so this is the numbers that we had in terms of patients with curvit so just over 235 000 of them had diagnosis of kerbit so that's out of the 81 million that we had access to um and um 190 000 of them were not hospitalized so we took them to be the i guess least severely affected patients and whereas 46 000 were hospitalized and then about 9 000 of them had to go to be admitted to an intensive care unit and 6 thousand of them had an ankytheropathy so um evidence of of brain involvement um and then for comparison with kavit 19 cohort with the influenza cohort story we had just over 100 000 patients in each cohort um and um for comparison with the autoresponder drug infection we again had uh just over 230 000 patients so what were the main findings from this study well the main the main finding was that about one in three patients um in the six months after the covet-19 illness go on to have either a psychiatric or neurological um disorder and because the uh most patients were not hospitalized the rate in the non-hospitalized patients is about the same so one in three patients non-hospitalized just under that and um had either a neurological or psychiatric disorder but then as you can see in the slides the rate increases quite dramatically as you move towards the most severely affected patients so if we see if we look at the patients who had to go to an itu unit or receiving intensive care and almost one in two patients had one of those disorders in the six months and if we look at the patient with encephalopathy um almost two-thirds of the patients had um evidence of of neurological psychiatric disorders and then we also looked at patients um in whom this was the first ever either neurological or psychiatric diagnosis and this is the second line on this slide where you see that's about one in eight patients go on to have a first neurological psychiatric diagnosis so what that means is those patients had no psychiatric or neurological diagnosis in the past as far as we knew from their health records and again this is this increases to one in three patients if you look at the most severely affected patients so in terms of the specific diagnosis i'm only presenting a subset of those on this slide um the bulk of the one in three patients um are suffering with anxiety and depression which account for one in six and one in seven patients overall and actually that rate increases somewhat but not dramatically if you look at the most severely affected patients so it only increases so to speak to um one in five if you look at patients with income telepathy and actually if you in order to set up at least if you look at patients who required intensive care you need treatment the rates were very similar to the rates that we've seen in patients in all patients with 19. so what that means is that um according to that data at least in that population the rate of anxiety disorder and mood disorders which is largely depression are affecting all patients across um the level of severity of the coveted illness this is in sharp contrast with the other four diagnoses that i'm presenting on this slide which are all much rarer um affecting only one in 70 or 1 in 50 patients and but those increase quite dramatically if you look at the most severely affected patient with curvature so if you take stroke for instance as an example and one in 50 of them go on to have 1 in 50 patients who had a diagnosis of covet go on to have a stroke in the six months after the illness but that increases to one in 11 if you look at patients who had encounteropathy um and psychosis which is another psychiatric disorder which presents in people having delusions which is believing in things that aren't real or hallucination which is sort of um hearing usually or seeing sometimes uh things that aren't real and that also sort of affects only one in 70 patients after covets but that increases one in 14 if we look at patients who had encephalopathy as part of their acute cavitiveness now how does that compare to other health events um so what you see here for for those who know that type of curse those are kaplan-meier curve so what they look at is the number of people affected by those different disorders and as we throw them up for um from zero to 180 days and and you see the the rate's obviously increasing uh because this is the cumulative rate and but but what you mostly see is the contrast between um the patient with curvit in red and compared to the patient with another respiratory tract infection in blue and you see that the rates are quite dramatically increased compared to um the patient with other respiratory tract infections um and this is the same slide but showing the results for the comparison with influenza where we also see a large contrast between the two groups and overall um the rate of any neurological or psychiatric diagnosis is about 44 more likely uh in relative terms after covitz than after influenza and about 16 more likely than after other ritual tract infections which is something that we can discuss later and it shows that there is definitely there seems to be something specific about covet 19 but but but um but equally it doesn't seem that this is 10 times more likely after covet 19 compared to say influenza or the respiratory tract infection and potentially important negative findings were findings about parkinsonism and guillain-barre syndrome and the reason why we looked at those is that they are related to they have been in the past related to viral illnesses and so we wanted to see whether there was a signal for an increased rate of those disorders um after cop19 parkinsonism for instance occurred um in the 1918 pandemic of the flu um and so that was the reason why we looked at that one guillain-barre syndrome occurs after a wealth of viral infection and it didn't seem to occur more often after covet than after the other respiratory draft infections even though we need more follow-up uh to make sure that there is no signal at all um those are at least somewhat reassuring so what are the limitations of this study well there's plenty and it's important to keep them in mind when we interpret the findings it's a large data set which is great and gives us some power to detect even rarer events um but they are routine healthcare data not research data what that means is that some diagnosis may be missing or incorrect when somebody goes and see the gp the gp might make a mistake in the first place and then and then and sort of revise the diagnosis later on when they see you for the for the second time a few weeks later um and obviously that would be reflected in in the data set that we have the results may not apply to people who had covet 19 but were not diagnosed because obviously we would not know anything about those patients because that would not be reflected in the health records um patients who had copied 19 might be more likely to have follow-up um medical follow-up or seek medical attention after covet 19 and that means that perhaps some of the diagnosis that we've picked up as being more likely after kevin than after influenza are just um related to the fact that those patients just sought more medical attention and this potentially might affect things like dementia and so that's why we're very careful about the interpretation of that particular finding but all findings in general and because we don't want to be claiming that coveted 19 has been now demonstrated to cause dementia it might be the case but we don't know yet and then we don't know the severity of the disorders we know that because that there is an association with depression uh we don't know how severe the depression is or also where the anxiety is for instance or severe the the strokes were and and obviously we don't know what happens to those patients after six months so we need longer for webster so the knowns and the unknowns um from from this study well what we know is that the diagnosis of covet 19 is associated with an increased rate of psychiatric and neurological diseases in the six months after the illness this seems to be quite clear from this study and we also know that the more severely affected patients are at an increased risk of having a subsequent psychiatric or neurological disorder and that's is reflected by the comparison and between patients with who were in admitted to intensive care compared to those who weren't for instance and the third thing that we know is that we probably need to do something about it um you know there's an increased rate of those diagnosis we can't just leave those patients untreated and so there must be something to do what exactly is part of the unknowns and so the other unknown to us that is that we don't know this is a question that we get asked often uh we don't know what's causing it and there's there's likely to be biological psychological and social mechanisms involved and as well as potentially residual confounding there are things that we unfortunately cannot control for when we do this type of study such as lifestyle factors for instance and we don't know whether that's um contributing as well um the biological mechanism might involve the virus itself and affecting the brain it might involve inflammation affecting the brain and the psychological um i don't need to talk about uh having a diagnosis of covet is is very stressful and the social mechanism involves things like um losing income as a result of having to self isolate losing social contact etc and as i said we don't know the outcome of the affected patients so we need to we need some prospective studies to to look those up for for follow them up for for a longer time and as i said we don't know what we know that there must be something to do but we don't know what to do about them so this is part of the ignorance thank you maxine thank you so much and thank you to all three speakers and i'll hand straight over to allison pollock who's chairing the final session thanks phi um so we're on to the third session uh prognosis available treatments and rehabilitation and i'm delighted to say we've got melissa heitmann who's joined us she's a respiratory physician from ucl and utlh but unfortunately her broadband isn't very good so we have though she's joining the panel we're going to have a pre-record now so duncan if you could take it away thanks thank you for asking me to speak my name is melissa heightman i'm a consultant respiratory physician at uclh i've been asked to talk about the process of setting up a postcovered assessment clinic uh we're the lead provider for north central london and our clinics now evolved to form an integrated postcode network in our integrated care system um but we actually started the service back in april 2020 um through evolution of a follow-up service for patients going home from our own ed with suspect covid we then started accepting uh gp referrals for people with postcode complications and saw patients going home from our own hospital following an admission with covid and by the time of the nhs five-point long-covered plan we'd had a thousand appointments in the clinic and clinic funding started in december wave two was extremely difficult for all services but we kept the clinic going and by the end of march we'd had 2600 appointments relating to 1300 individuals this slide shows the pathway of patient flows through the clinic and regardless of source of referral they're seen by the same clinical team when we follow the same approach in recent months we've been supporting primary care with development of a screening tool for gps to use and an enos template which generates a an electronic referral that's triaged by the borough level single point of access and patients are either seen in the community postcoded clinic with mdt support from us or they come to the clinic if they need more complex diagnostics or input of the wider multi-specialty mdt and we try to develop a treatment and recovery plan for all patients um to be implemented by the community services so far we've been able to discharge 48 of patients and the remainder have had ongoing follow-up due to complexity or due to shortage of resources within community services and hopefully that's going to improve um we had 800 discharges um from wave one from the hospital and a thousand from wave two we phone those patients at six weeks post discharge and from that process about 500 patients have been brought back for face-to-face reviews so far from a hospital discharge uh we've also seen 500 patients referred by their gp in 200 following um referral from the ed safety net service tend to see the post hospital patients soon after their initial illness at about a three month time point whereas the non-hospitalized patients tend to be referred later between six to even 12 months after symptom onset the demographics of the non-hospitalized group are different they tend to be younger mean age 45 in our cohort 68 female 60 white uh therefore lower bame prevalence which we think is very important to understand uh 10 of patients um our nhs staff and probably a higher prevalence from wave one than um than hopefully from wave two in terms of uh what we see the patients have a very wide range of symptoms but um fatigue and breathlessness are dominant symptoms in in all cohorts we do see different phenotypes of symptoms subclusters which i think are a very important study further this is um slideshows of visual representation of some of the patterns of illness we see um so well as the dominant symptoms of long-covered we see subgroups who have autonomic dysfunction disordered breathing pattern abnormal exercise physiology um we see quite a high prevalence of psychological morbidity relating to the severity of symptoms that they're experiencing or the loss of self-image or the stress of their illness to them and their families and in short you know long covered is is not one thing and we think of it as a combination of end organ damage and other phenomena we see evidence that pre-existing comorbidities can be exacerbated by covered also and and therefore it's a very complex clinical picture um we decide on diagnostics dependent on symptoms and i've listed the diagnostics that we're finding most useful on this slide and we found it very helpful to have access to a multi specialty mdt with a core team of respiratory neurology cardiology but input from immunology rheumatology and hematology is also being very important we have our therapists present at the mdt radiology inputs very helpful we're incorporating clinical health psychology into the clinic and we now have a weekly mdt with our community services which i think is very high value in terms of what we found we've looked at quite a large uh range of outcome measures as we get a sense of what's going to be most useful um looking at eq5l5d we see non-hospitalized patients have a lower percentage recovery um in that subjective score compared to the hospitalized group we see 30 percent of patients have mrc breathlessness 3 or above quite high levels of anxiety and depression in terms of the gad phq scores and in both in all cohorts a large proportion of patients over 60 percent are unable to work full-time at the time of their initial assessment we found an electronic health record essential for our service first it helped us to identify patients efficiently and right from the first clinic we defined tools to allow us to collect structured data which was important for service evaluation and for learning about this new clinical scenario we've now evolved this to a patient questionnaire for the patient portal which i think will be very helpful um in making uh most use of clinician time um and giving opportunities for patient initiated follow-up implementation of read codes in primary care took a bit longer and that's been very challenging therefore for demand modelling of the clinic um in north central london from ons statistics we think we might have 10 000 patients with post-covered symptoms and that up to a quarter of those could need a assessment in the clinic therefore 2 000 patients um now clearly to cope with those numbers of patients we're going to have to work as an integrated care system and we've been teaming up with other acute providers and the borough community services to try and achieve this and relying heavily on the virtual mdt model which i think is very effective in terms of nodes and unknowns we feel that all patients with postcoder complications benefit from early identification of symptoms and good quality advice about managing them and some patients do need access to multi-specialty multi-professional support and achieving equity of access under approach and does require ics working just like many other long-term conditions and we need to develop clear clinical standards which we're working on in london at the moment we see that there will be workforce constraints particularly relating to community therapists and that's going to require investment and up skilling and skills transference between clinicians to help us support this patient group as effectively as possible in terms of unknowns i've mentioned we're still not clear about what capacity each service actually requires we need to know more about what are the most useful diagnostics and best rehab approaches we need to know more about the mechanisms underlying the long covered phenotypes because that will inform potential treatments and clearly we need to know more about what the long-term trajectory of this illness will be but thank you for listening to me that's very much indeed um melissa so we'll move straight on to margaret mccartney and richard being both gps margaret's also with the university of st andrews and richard at the university of plymouth thank you very much hi thanks so much for having me and so i'm a gp in glasgow my full declaration of interest is on who pays this doctor.org so i'm a gp i am live and work in glasgow and obviously the last um the last six months or so have been really difficult the last year and a half have been really difficult we're dealing with people who have had covert 19 people who have been bereaved by cobit 19 the huge consequences of social inequalities on our population people who have been suffering from immense economic and emotional distress people who have perhaps been working somewhere where there's been a cluster of covert 19 um cases have brought that home and a parent or a sibling has died so there's a huge amount of them stress and pressure on people just now and lots of um stories coming through have long covered as well which have to be taken really seriously and i think also they have to be placed into context and i'm really here to try and offer a bit of um contextual and information and perspective from a primary care point of view and it's worth remembering that general practice was in crisis before and this um awful pandemic and of course now that secondary care are not able to do a lot of things that they were doing beforehand a lot of that pressure has come back into primary care so we're dealing with a huge amount of uncertainty both for now and for the future and something i wanted to bring to the table is that general practice has got long experience of dealing with people after they've been discharged from hospital after they've been discharged from hospital and they're still symptomatic and can be very symptomatic for a very long time with things that we probably think of as common or garden illnesses such as community acquired pneumonia and over the last six months or so i've been looking back into the literature about what we know about the usual recovery patterns and what's also alarming about this study is they included any older adult as being anyone over 50 which i thought was a bit a bit mean but but this study and for example finds that people with copd and who had had a community acquired pneumonia and half of them were still symptomatic at 52 days and having a worse health and status than they did before they had their their community acquired pneumonia and that of course means that 50 and you know the half of people are still symptomatic well after that and many of the studies um around about this time really ran out at 90 days and really stopped following up people by then there have been a few other studies looking at people with normal i say normal but you know um typical community acquired pneumonias that happen without people going into hospital without having had any um further investigation in there and still by day 180 there is significant amount of adults who are still feeling that their well-being score which takes account of physical and in mental health have not recurred um returned to normal and again this is not something that you might find in many textbooks but it's certainly and what you find in the community when people have been really unwell and who are taking a time to recover you know serious illness does affect the body and takes a long time for people to get better at the same time we've had lots of headlines lots of stories about a multi-organ impairment in low-risk people in the community who didn't go into hospital and who have been scanned and lots of information has basically been found and i think people understandably found this very alarming and i can see why people would have found that alarming it does sound very dramatic but what i'm not sure about is what it actually means and when we look back at for example what we know about influenza and what um your seasonal influenza virus does to the human body well it can affect just about anywhere and what i struggle to know is how to put the findings and from these scans of people who have had copic 19 into the perspective of what do we know about the human body and how it responds to serious infection and how people recover thereafter i've got a long-standing interest in over-diagnosis and over treatment and of course i do get concerned when we're doing lots of scans when we don't really know what a normal recovery would look like and what the prognostic implication of any of these findings might be there is a risk of unintended consequences i think and it is with extremely good intentions that people without any positive tests at all are felt to not are not wanted to be excluded from any subsequent interventions and for patients i can completely understand that but it does mean there is a risk of unintended consequences and people being given a diagnosis which they didn't have and therefore may not benefit from any future intervention so there is a concern there i've also seen a lot of people i'm suggesting many different investigations and self-monitoring but again i am unclear whether that will actually help people and whether or not that will contribute towards the burden of illness we don't have good comparator data you know do we need this for other illnesses do we actually have good data that tells us that this is helpful and useful for people for some people it may be for some people it may well not be i'm concerned about as lots of different clinics doing different things i can see people are working with the very best of intentions and extremely hard to try and help people but there is a risk i think of lots of different clinics doing different things and giving quite mixed messages to the public and i do wonder about whether um whether it's a good idea to be running so many new clinics out with formalized trial settings we've heard them earlier and from joe house about and wanting to have a treatment and i just and i think that really patients and researchers need to be working really closely here to try and work out what those treatments are because at this time i'm not sure if we know what what the best treatments really are and i suppose this feeds into my concern that we're really not in researching non-drug interventions well enough we are the leaders in the world for doing drug intervention studies but it seems to me we've got a long way to go before we get up to speed with non-drug treatments so in terms of what this means i think we need to get to evidence-based but also personalized care i think it's really helpful to know what happens to not healthy controls and although they are obviously really important but individuals have been unwell with other pathologies and what we know about their scans and their blood inflammation markers and what our experiences of how well people recover from other serious insults to the human body clearly covert 19 is not influenza but i think we can learn from the human experience of a serious illness um and so i really would and call upon the research and patient community to really working be working together here to identify what the big questions are in terms of treatments and to try and push forward for that and what's really astonishing to me is the amount of research that has not been done in recovery from serious illness and i do feel as though there's a there's a light being shown on how little the less glamorous areas perhaps of medicine and have had in terms of investment over the last few years and i'll hand over to richard now thank you very much margaret for that uh introduction and um so yes i'm i'm richard bing i'm a general practitioner in plymouth and i'm professor in primary care research and my uh in terms of disclosures as well as having having that on the web i had also suffered from a chronic fatigue after ramsay hunt about 20 years ago and made a slow and painful recovery from that and perhaps know something about what it what it's like to suffer from from this um it was it was really hard to to to keep to to try and monitor yourself and know when it was right to push further and then to slowly slowly rehabilitate um so but thinking of as a gp and as a researcher who specializes in complex interventions for complex needs and formative evaluations and trials of clinical and organizational interventions i thought that one of the first things to to be clear about is the the the unknowns as a clinician and patient when they meet um we have um we have symptoms which are manifest to the patient cognitive fatigue breathlessness but underlying that we have uh the organ dysfunction the the patho physiology which in these kind of conditions is is generally unknown and i'm i'm skeptical like margaret as to whether the the uh investigations tell us a lot uh about that they might have us tell us about specific organ damage but i think they're unlikely to tell us very much about the psycho-immuno neuroendocrine type problems that may well be happening in variable ways for these patients in a similar way to cfs me we're also unlikely when we meet people to know what path of recovery they're on i think the ons data was interesting i'm not interpreting that and the ceruli trial that or a study that that seems to show a pretty good recovery for most people over time so so although we're estimating a million at four weeks by a year it's uh as described quite a lot less so so there's also the fluctuation over time we don't know where people are on in that in that pathway we're also unclear um about how this relates to any underlying problems they may have and i think if we go back to long-term conditions some people have uh other long-term conditions that we're clear about we may be unclear as to whether there is a predisposition uh for this this problem uh we know the epidemiology tells us within the whole spectrum of cfs me that um adjust childhood events are very important as well as potential viral etiology so we potentially have a combination of the two and i'm not sure that that's been really raised as as a as a as a potential issue but certainly when i think about all the patients that that we look after many of them have problems of fatigue and pain and distress and cognitive impairment that is primarily related to adverse childhood events so what i'm saying is that this is more of the same this is what we deal with this is uncertainty this is uh complex things where what patients want is a coherent episode of care they want to be believed they want expertise and they probably want professional friends that people have described that in in some research they need to have access they need to have a trust and engagement and good treatment we don't know what treatments to give people so we're only guessing so we have physical rehabilitation potentially is it pacing is it is it some kind of and i really liked elaine maxwell's description of the kind of combination of pacing and graded exercise as a sensible way forward very individualized um richard i'm going to have to ask you too so my big question then is i i was um i was interested in setting up the possibility that really this should be a question between general practice care versus multidisciplinary care both of which have their problems long waiting lists and bewilderment and mdt and and long and problems of capacity in general practice but my choice of of research study design is actually to do um iterative formative evaluation with all the clinics joining together and gathering data and using qualitative feedback slowly and gradually working out the the the patterns and systems of care that we need to put in place clinically and organizationally thank you thank you very much richard margaret that was great so now we move on to liz whitaker who is at imperial and she's going to discuss the very important issue of children which is timely given all the focus on childhood vaccination liz thank you very thank you very much for doing this no problems allison thanks very much for inviting me to talk so just i'm a pediatric consultant at mary's and i got involved in covert right at the beginning and i've been describing the kind of post-covered phenomenon in children which is largely in our experience been around pims and so just to think about how has covid affected children the really good news is and that actually the predominant thing for children is that they have remained well or experienced very mild disease and haven't been hospitalized and certainly haven't experienced many deaths in our pediatric cohort which has a which is really good a very tiny proportion of children have experienced this uh post-infectious inflammatory syndrome known as pims ts where they get very hot and red and feverish and some of them develop cardiac dysfunction and i guess what we don't know is what proportion of children are experiencing persistent symptoms after having their asymptomatic or mild covert disease and certainly from this website which is long cover kids uk which is a a support group for parents of children who are experiencing symptoms they describe a myriad of symptoms much like adults are experiencing from and i think quite a lot of gastro symptoms headaches fatigue joint pains rashes sore throats etc and they report the most frequently reported changes are in energy levels mood sleep and appetite and that these are things that are affecting day-to-day living for the children that they look after predominantly there is very limited data on this in children and certainly from talking to colleagues across the country and internationally we aren't seeing many children who are presenting to healthcare settings with concerning persistent symptoms um whether that's because they're struggling to access healthcare or whether because the numbers are quite small i think it's something we really need to explore further um but certainly the very severe organ damage that i think is associated with severe copper disease unsurprisingly we're not seeing and thankfully we're not seeing because children don't experience severe disease um so what this data here from the ons shows that at five weeks in children under the age of ten um we're seeing about nine percent of children and about 13 of adolescents are experiencing some of these common symptoms that they were asked about on a survey and in blue it's patients with a known covered positive test in green without um and then by 12 weeks those numbers have dropped a little bit to seven and eight percent so already improving by the 12-week stage and we really don't have very good data this is survey data and you know it's likely if it's really hard to know without robust evidence base or with good healthcare data to know how large a problem this is across the population and children have suffered really greatly from the indirect impact of covid19 on their health because schools have been closed because there's a lot of parental anxiety there have been a lack of access to normal routines lots of increased screen time and all of these factors that have been picked up in this paper here are impacting both their mental health and their physical health without experiencing any covert in illness at all and even just the young people so the young people i see in my clinic who've had pims or who've been unwell with covered are really saying what am i going to tell my friends and they really feel a stigma attached to having had a coronavirus infection and they've been really vilified in the media and i think our young people deserve more respect because they listen to the news and they watch the television and they read the newspapers and they know that people are saying oh schools are driving the infection and there are dirty places to be and they're not safe to go and they're you know passing it on to their grandparents and i think this is a really poor framework for young people to feel that everything is their fault and you know as an adolescent the world centers around you so everything you hear belongs to you and we just need to be a little bit careful as the adults and the media around them not to frame the covert pandemic as being a pediatric problem when actually they're the group who are least likely to have it and just on the topic of vaccines because this comes up as a question a lot and you know what is the personal benefit to a child of having a covet 19 vaccine i've told you that the disease is far milder and so there's a really different discussion about the risk benefit of giving a vaccine we really need to know more about safety we need to know more about efficaciousness so we know because they have a different disease phenotype that they respond differently to the virus in terms of how well they become and it may be that they respond differently to the vaccine and it's a really key that we do trials and we started off doing trials um in february initially with the astrazeneca vaccine and there are plans of course to do the pfizer and moderna johnson and johnson johnson vaccine trials and young people as well starting off with lower doses in case children have different reactions and measuring their effective immune responses these trials have actually been put on hold a little bit at the moment because of the recent concerns about vaccine-induced thrombocytopenia and thrombotic events whilst we gather more information so i think it'll be a little bit of time before we have that data and again which we won't pick up in the trials because they're likely to be rare as we don't know if there are a risk of rare events like a vaccine-induced inflammatory response but other children may benefit from vaccinations sooner um and so these things need to be taken into account there may be and that adolescents might be a group who for example if if transmission is an issue we find that we're having to close and open schools which we know is so bad for young people that that risk benefit switches to saying that maybe it is beneficial to vaccinate um adolescents to get them back into school or for those children with complex health needs but i think just uh that is a really difficult question and at the moment we don't have enough data on these facts and also on how big a problem persistent or post-covert syndromes are in children to roll out a vaccine program with the data we have so what are the knowns and unknowns we know that it's rare for children to get this severe post-infectious inflammatory syndrome we know that children are experiencing post-covert symptoms in a slightly different way to adults much more fatigue related we also know that most children remain well and so what are the unknowns we don't know what the immunopathogenesis is of this pims condition and there are studies looking at that we don't know the prevalence or the pathogenesis of post-covert syndrome in children and young people and we don't have a case definition and i don't think it's right to extrapolate from adults who have clearly had a very different disease phenotype to assume that the post-cover disease phenotype in children be the same so we need to come up with something that is specific for children and just in terms of the vaccine we don't know about the safety and efficacy so there is a study that's just gained ethical approval and we've started to invite the first participants and this is a national study involving many centres across the country um it's focusing on the adolescents because it's based around a phd study of young people who've taken part in in uh covered studies already so we know already that we have a group of a thousand three thousand children who are known to have a covert test positive and three thousand who are known to be covered negative and they're going to be contacted to complete questionnaires and health assessments for a two-year period and hopefully this is going to give us information about the prevalence of persistent symptoms in children and we're applying for further funding through the latest uk call to try and incorporate some immunopathogenesis into the study using two studies that are already ongoing through imperial prevail and diamonds and in addition to that uh with the bristol team and across the country to look at what interventions work best for children and alongside that and melissa's talk beautifully about the amazing service at ucl for adults we're trying to design an appropriate service for children and young people and key to that is gathering data on throughout about every patient who presents to healthcare settings and having a standardized approach because i agree with margaret that that's really a key and also we're trying to involve local pediatric services to make sure that everybody who has access needs us that it's a multi-disciplinary problem and family based because i think that not surprisingly um parents are really struggling and seeing their children experiencing these postcode symptoms and they need support in their own right as well and so i'm not going to run into this but we've thought quite carefully that we want children to be able to access this care from school quite crucially i think teachers and school nurses can recognize when young people are involved with their struggling from cams and thinking about pre-morbid conditions which are exacerbated uh for children who haven't been hospitalized and those who have coming through primary care and then pediatrics and having specialist services who work very closely with other professionals to make sure that the each and every child who needs support can access it and i really hear the talk about equity for children who haven't got long covered but are experiencing persistent symptoms for the reasons we really want everyone to have the ability to receive support to get on with life and enjoy it in a normal way so just in summary children experience less severe disease than adults it's crucial to support the recovery for those who do experience significant disease and we have an urgent need for research into these syndromes and persistent symptoms in children because let's face it they're at the beginning of their life they've had a really tough year and they deserve to be put first and i'm going to stop i was going to add some things about your information because i know we're running out of time thanks liz thanks very much that was a that was fantastic very powerful advocate for children um that we need to really think about um so i'm going to go next and last uh to squadron leader rob marco davis um who's working at headley court in the academic department of medical rehabilitation and he's going to be talking about exercise and rated exercise and when it is and isn't appropriate thanks many thanks for the um in introduction um so uh just to say that we've moved from uh headley court now to to stanford hall the defence medical rehabilitation center in the east midlands um i'm a postdoctoral researcher and uh registrar in rehabilitation medicine and um both sport and exercise medicine um and i came back into the training system after working for a gp for the armed forces for a couple of years um i'm going to frame what we knew coming into this pandemic specifically with regards to the relationship between exercise and viral illness touch on how that interplays with our role in delivering occupationally focused healthcare in defence medical services and where that's led us in terms of making recommendations and designing clinical services and the unknowns and the focus for our research we look after mostly but not entirely a young active population uh employed to undertake physically defending roles so regardless of how you look at the role of uh exercise in viral illness um you'd be it is something to avoid for hopefully a short period of time or a symptom modifier a rehabilitative therapy a risk factor for transmission or any other angle one can think of our main effort was always going to be to return our personnel to be fit for the roles that they're trained to deliver and how to deliver this safely and potentially at scale therefore became a major concern of course covert 19 is a new disease so early the focus was on sharing what we knew about related pathologies and forming consensus guidance and we did that with the stanford hall consensus statement published in the bjsm in may last year on the slide here and in that we looked at mostly data from tsars and mers and to a lesser extent flew so to acknowledge the the unknowns uh much of those recommendations were based on level four or five evidence or extrapolated from animal-based research um we found evidence highlighting the harmful effects of physical inactivity and obesity on the immune response but also that prolonged and vigorous exercise can result in increased symptoms um many for example many people will be familiar with the neck check which athletes have used for decades to decide whether or not to train uh with what they hope are transient viral symptoms uh the idea being that if the symptoms are below the neck um to rest and if they're above the neck to continue uh with with caution um and we really couldn't find any good evidence for this um we also have had experience of treating other post-viral fatigue syndromes and patients with myocarditis um in the past um and we therefore recommended uh cautious stratified approach to exercise following acute covert infection we recommended longer rest periods uh prior to return to training than widely accepted previously um being two to three weeks as opposed to seven to ten days we recommended starting with simply limiting sedentary periods low level stretching uh light muscle strengthening activity before the more targeted cardiovascular sessions but absolutely crucially on an individualized basis with ongoing review um and i'll just expand on that um a little we we've discussed in i think you can see the slide now uh the steering group for the nihr living with covert themed review um the term graded exercise therapy uh we were aware of the discussion um surrounding the 2007 nice guidance chronic fatigue syndrome and keen to stress that you know we were not advocating fixed increments in activity or assuming a linear resolution of symptoms however mindful of the great number of benefits associated with physical activity if you take for example quigley's uh scoping review in hiv that shows that physical activity can improve cognitive function um there's a need to harness these intended benefits of exercise but in a safe way and so i feel it may be helpful to symptom titrated physical activity as opposed to graded exercise exercise therapy physical activity as opposed to exercising that we need to take into account a more holistic view of all of a patient's activities through daily life rather than prescribing putting on sports kit and gym based activities so it's things like incorporating that walk to the bus stop into the equation and when you think about the practicalities of that you quickly realize a one-size-fits-all starting point is unrealistic we we mustn't shirk away from the key training principle of progression but it needs to be symptom titrated i.e we need to understand the effect of the change we've made before proceeding otherwise we risk a stepwise deterioration if and if that's where patients are left with limited support or unrealistic expectations about the speed of their recovery and and progress you know perhaps from an unsuper sympathetic workplace then things can really deteriorate and we're potentially seeing some data um that that shows that we look to our first 155 patients to be referred from armed forces gps for us at the tertiary rehab center at dmrc and we found at that initial video teleconference that we had with them that those who'd not received laboratory confirmation confirmation of their diagnosis presented later with increased mood and anxiety disturbances despite no significant difference in their acute symptoms and i'd like to just link that back to the very rich description that joe house gave earlier about the needs to be believed and be able to access services we've held patient forums education sessions occupational therapy workshops etc as part of our residential course for postcoded rehab at stanford hall and one thing that struck me is that our patient group at least um is is supporting patients in understanding pacing and the boom bust cycles isn't going to be achieved in one session however it's vital to get that message across and support the people around those patients so the family the friends the work colleagues you've got a group of people in our cohort at least who've never had to pace before a lot of them people who've often been functioning at a higher level than those around them and who outwardly don't look unwell and one way i've described it and and the parallels are interesting here potentially from a patho etiological level is in relation to over training syndrome um when athletes train too hard or with inadequate rest they suffer from over training syndrome which has symptoms similar to postcovid fatigue depression tachycardia insomnia irritability and so on and there are a number of suggestions about the cause of over training syndrome and that includes autonomic dysregulation increased inflammatory cytokines and dysregulation of the hypothalamus and all these are mechanisms that have been proposed for the post covid syndromes um so i think i've described our general principles for safe return to exercise but when do we need to investigate further and there are many many unknowns here and i think my my unknowns slide very much could mirror um the points that melissa heidman just made a few moments ago one of the challenges and again our own data supports this is that the acute symptoms do not appear to predict the symptoms that a median of three months follow up um clearly we need to use the skills that we already have in picking up significant pathology but also at the moment in defense we're asking our gps to refer patients who required supportive ventilation um and or chest pain and ecg changes and or desaturation on a simple harvard step test or six minute walk test uh to us but another unknown is what is the optimal pathway for onward referral i think it's likely depend to depend on the underlying pathophysiology and as elaine maxwell and and simone bernardi um had described uh earlier in this webinar we're starting to see distinct symptom clusters um and for example the patients that we've got with the dysfunctional breathing patterns and the disordernomia we've looked at using cardiopulmonary exercise testing as a functional test that can distinguish those pathologies from respiratory or cardiovascular limitations that require further investigations such as ct ctpa and cardiac mri and we're conducting further research into the sensitivity and specificity of cardiopulmonary exercise testing and hope to be able to publish on that very soon a normal cpap test depending on this occurring data has the potential to exclude significant structural cardiopulmonary pathology another key question assuming we can accurately diagnose these syndromes is what is the likely prognosis and greater data and clarity here we hope would be widely accepted as joe was saying earlier influence patient and employers expectations that allows the right time and space for health care to be delivered to support better outcomes and that's the focus of our ongoing study the mkovid study which we're conducting investigations i just mentioned in distinct groups of hospitalized patients community-based recovered patients and community-based ongoing symptoms and i agree then that doesn't necessarily mean that they had a mild illness and comparing those to unaffected controls over 12 months um i think i've just about had my time but i'd like to briefly thank my colleagues here who are central to this ongoing work rob that's really useful because uh exercise of course is uh quite contentious and heavily debated um we're trying now we're going to move now um to phil i think um so phillips over to your questions and nikki thank you very much indeed gosh what an extraordinary uh session that's been uh i should um declare an interest for the last decade i've been working as an associate specialist in the pediatric chronic fatigue service which is based at the royal united hospital in bath and has research links with the university of bristol so uh esther crawley my consultant will be involved in the clock study with liz uh we're starting long covid treatment but interestingly the patients i've seen over the years since the pandemic started with perhaps post coronavirus fatigue have not been that different in the pediatric service than those i normally see with me cfs professor crawley came up with this brilliant idea when i started the service that the best way to understand the condition we don't really understand is to have 90-minute initial consultations i think probably almost unheard of in the nhs and although these poor young kids have been really through the mill off and it's the most rewarding job i've ever done because you have a chance to truly acknowledge what they've been through to understand and to involve them in the decision making and my experience over a decade is it is something that has to be individualized you have to involve the whole family and the longer initial concentration seems to build up that relationship so that's my experience probably young people possibly have a better recovery rate um probably at least a third of our young people make a complete recovery uh some of them sort of reach a plateau and stay there and some of them recover and then have really disabling flare-ups later on and it's impossible to say early on which category a young person will fit into um but the trick is to involve them as much as possible in their recovery and the other trick really important is to stabilize their sleep we haven't talked about sleep at all in this but i would imagine uh in uh post-covered syndromes as well as in any chronic fatigue syndrome stabilizing sleep is absolutely vital to recovery so that's a little bit of extra i have to add nikki uh nabardi we never introduce you we sit there and it goes over to nikki uh you're as a medical student and a bmj scholar is that right yes yeah that's right so what are you going to do with your one world and precious life have you decided i'm not 100 sure yet i think potentially psychiatry um but i'm really enjoying my year at the bmj so my opinion i need you and apologies for not introducing you earlier together with your question so give us the first question and who it's for yes of course so the first question is for the first panel um and the question is how much of postcovid is the onset of entirely new symptoms and conditions in comparison to them being exacerbation of pre-existing symptoms or conditions from covered so this is interesting uh joe and nicky probably can we ask you first because you're the one with the lived experience of this and i was very moved by your presentations can joe nicki tell us in their view how many of the symptoms that they're getting now were exacerbations of initial symptoms and how many are new ones uh are you there joe and nicky yes i'm here thank you yeah mine were the only pre-existing condition i had was migraine um and actually my migraines got better for the first six months of covid it was one of the you know the small pluses um almost everything else was entirely new including the heart condition the arthritis i had very very mild asthma but nowhere near the breathing problems that i had now and i'd only had that for a year after another viral thing okay and quickly remind us again of the importance of acknowledgement it's extraordinary isn't it you i often find with young people if you tell them this is a real condition you're not making it up uh it's it's been coped with and suddenly yeah actually funnily enough my my son amongst his multiple medical conditions also has um emmy and he's actually been he's 18 now so he's just transitioning out of your clinic and and yeah actually speaking but what you said about giving people the time we we hear that time and time again when people do actually get to the long cover clinics the time to discuss and ask questions my gp's been fantastic personally i've had really good gp but they they can't know you know they've carried constraints so when you get to the long covey clinic and they know more and you can ask more even if they don't have much they can offer in the way of help it's everyone just talks about it being a watershed moment that being able to talk to somebody who believes you at length thank you elaine uh what's the research shown about how many people have when they get long-covered are they exacerbations of their initial infection symptoms or is they getting new symptoms on top of that says there's two answers to that there's a lot of people who are getting entirely new symptoms who haven't been ill before even though it seems to be more prevalent in people with previous ill health but there was an interesting study in paris by dominique san ansaron that looked at this fluctuating uh corona coaster and found that a lot of people get new symptoms during their long cover journey so they will have symptoms they will get better they think they're recovered then they relapse with different symptoms to what they have with their initial infections so it's very hard to say what the symptoms of long-covered are and that's part of the problem it's difficult and i've always thought that i mean me is hard for some people to understand but chronic fatigue syndrome is poorly named because people get far more than just that they can get dizziness headaches nausea autonomic dysfunction quite uh severe pain and yet they think of it all about us fatigue so it's important we find some way that embraces all that multitude of symptoms and if i can just add to that one of the problems with looking at the prevalence of lung covariate is for some people who had a mild initial infection and then had a period of feeling well and then they get a totally different symptom they really don't associate that with long covered so they're not accessing the sport nikki you wanted to add yours welcome nice to see you nikki thanks for taking the time to join us what did you want to say yes thank you for having me um i was here as joe's support as she explained because with long coved you never know how you're going to feel quite often from one day to the next um i originally got symptoms that were assumed to be covered in february last year and i've had symptoms ever since my only previous condition was mild asthma but over the last year i've had a whole range of things tachycardia blinding headaches rashes crippling joint pain the breathlessness um i can brush my hair and my heart rate can go up to 166 beats a minute um luckily i'm back to doing some exercise i can walk for half an hour or so fairly gently but i still get all these symptoms coming and going and i just wanted to say that with long covid people are finding different conditions coming up a long way into their progress of this this condition and we know people who had scans tests early on or within the first six months and it didn't show anything and now a year or so later people are finally being diagnosed with myocarditis multiple lung emboli and all sorts of things that aren't showing up on their initial basic tests are being picked up by more in-depth tests and so people need to be listened to and people with long coverage should be monitored all the way throughout their illness to check that potentially life-threatening conditions are picked up thank you nikki can i just ask you out of personal curiosity how's your sleep at the moment are you do you have a regular sleep pattern or do you look all over the place and wake up feeling exhausted yeah pretty much all over the place and funnily enough and i i noticed in the the questions as some people had asked about um potential effects of the vaccine on people with long covid and some people have said that it's helped their symptoms me overall it's made me worse um it exacerbated my worst remaining symptoms however one thing that has improved for me since i had the vaccine is my sleep i'm actually sleeping better i still wake up feeling ill but the actual quality of my sleep has certainly improved thank you nikki i could listen to you for 90 minutes but sadly i have other people to talk to me but thank you very much and if there's another thing for you to come in on please join in nikki who are we going to next let's move on to panel 2 for now um so the next question is is long covered really more common in women or is it rather that men are more likely to die with covid and are therefore not around to get it contentious question who's going to take that one first someone brave um i i can pick that one up uh from from the perspective of our uh study um so what we've seen is about uh 1.7 of the population with long covid um that's about 1.9 of women and 1.5 percent of men so it's more prevalent amongst women than men that's that's what our representative study shows the um what we've seen with mortality is a different pattern so there's a really steep age gradient with mortality and it starts at about 1775 and it is very very steep and those are the people that were would have been dying in numbers throughout the the pandemic unfortunately the long covid tends to be in the working age population so it is two different groups it isn't a case that that you know it's it's equal numbers but mortality higher mortality rates amongst men explain the differential it's more complex than that and we're working on exactly what what the difference is yeah possibility that men and some ethnic minority groups are more reluctant to come forward or to to acknowledge their symptoms because of some stigma associated to it it's possible it's possible but the the differences are are significant so we we we see that sometimes with with studies it doesn't look like that at the moment but we're gathering a larger sample all the time and we'll be able to uh to discount that if that is a factor interesting and i'm old enough to remember with shame when we used to label me cfs as yuppie flu when it was nothing of the sort in fact comma in working populations it's just uh middle-class educated people more likely to come forward for help and more likely to know how to access the system so yeah and we have we've seen that as well with the the long covered prevalence that there's um there's a higher proportion in the um in the the most deprived sort of quintile 20 of of uh of areas of the of the population so that's based on the index of multiple deprivation it's an area-based thing but we're seeing more from the most deprived 20 than the than the least deprived simone are you still here from italy do we start yes yes i'm here would you like to comment on that do you have the same differences between women and men in italy uh we have observed as i showed you a slight prevalence of these symptoms in females actually but i cannot give you population that our our sample is very hospital centered as i told you because it hit you a bit earlier in italy can you offer us any hope have you had people who seem to be really severely affected with post-covert or long-covered symptoms who have now made a complete recovery have you seen anyone in those categories um i cannot give you numbers i i have to say that here in italy it doesn't seem to be perceived by the public opinion as a huge problem long-haul we don't hear a lot of talking about that here i don't know why but uh it's not probably such a big deal as it is apparently in the uk and you don't know why speculate why it's less of a problem in i can't it's too early to say okay thank you thank you okay nikki let's move on to the next question okay so health systems seem much likely to likelier to be aware of post-covert issues with patients who are hospitalized during their acute phase of their infection are they as assiduous about identifying post-covert syndrome amongst patients whose illness never led to hospitalization who are we asking this to nick is it still the second group or the third oh this is now panel three panel three that's a really interesting point so joe talked about prejudice how people aren't taken seriously particularly if they didn't have a positive test or weren't hospitalized do you think that's true margaret where are you you can answer that one because that's a tricky one yeah so i'm here and it's a tricky one you're absolutely right um how are you margaret by the way i'm tired and yeah so i i think it's all really difficult because it's really really easy for um for doctors to do more and more tests and to do tests and tests and tests in general practice is um you know we're working differently just now it's really difficult and again can i emphasize the um the tragic consequences of health inequalities that we're seeing just now and which have been devastating and too many people in our community and i completely echo in what liz was saying about the impact in our young people as well so there's a huge amount of distress out there and i suppose what you're really asking is are we actively going to find people who have had covet to find out how they're getting on so um whenever i'm without a covert patient test positive for covert at one of the centers in the practice and we have made efforts to contact them almost always unless it's someone who and we know is fitting well and has already been receiving care and and i think we have phoned the vast majority of people with a positive test to find out how they are and what we can do and to remind them that we are there and and you know i i will do what i can you know but i i you know it's hard to know what the best things to do when we don't know what the benefit is of any further intervention on people who are otherwise recovering in a way that they think is appropriate we are there and we can speak to people you know as they wish but in terms of actually going to find people in order to offer them an unknown a an intervention of unknown benefit i don't i don't know if that's helpful or appropriate because every time you're putting resources into one area of the health service you're effectively taking away a resource from somewhere else and i just want to emphasize again we're needing research here to help us know what the best thing is to do with people who've got symptoms and it just seems to me just now that things are so fragmented people are doing their best they're trying to offer something helpful absolutely but do we really know it's helpful we've got things wrong so often in medicine when we haven't started off in a position of stating our uncertainty and surely that's what this session should really be all about who's got a hand up and elaine so joe would you like to go first and then elaine yeah thanks thanks for coming back to me phil and i i i i know what margaret's saying and i know there's this sort of risk of going through and having lots of tests and they come back negative and it's it can be you know quite disheartening but i have to say there it there is there is basic things we know from sars and mers and and and me cfs about you know pacing and about not pushing through there is some really good basic advice that we can give people about resting getting sleep in order even if there's not a treatment and even if we don't know what's going on biologically and just it just comes back again to just not being able to emphasize enough the importance of people of being heard and and having a chance to talk through with someone who has a good good broad understanding and being able to ask questions um and oh i had another point but with my brain fog um oh yeah but but also you know and i i think you you talked about the the the risk of um unintended consequences and over treatment but i think that the thing is if if someone comes forward with symptoms i think there's more of a risk of excluding them in case it isn't covered then including someone who's got symptoms that even if they aren't too covered they still need treatment anyway and then also they're testing to rule out the really you know um really dangerous pathologies of things like clots that can't seem to not just come up in a cute phase but come up at any time and and heart conditions that you should then push through with exercise thanks for that joe elaine what did you want to add um well i think this i really sympathize with margaret gps are really busy and they can't do everything but i think this is great but when we first started looking at logan kirkland we were really looking at hospitalized populations and that was relatively easy to do because we knew how many people have been in hospital last year in the uk community testing was suspended for large parts of the year so the 4.4 million who tested positive is probably only half of the total number of people who've had it so if you're trying to design a research study where do you go to look for the people who didn't test positive you don't know what the denominator is so the prevalence may be lower because we're using the wrong denominator that's a good point uh margaret you wanted to come back thanks elaine yeah sorry it was just um about the idea about tests and and when when they're appropriate or not to do you know there is a very wide spectrum of people that we see in general practice and and one of the things that i think sometimes happens is that there isn't um a broad-based representation sometimes of people who have got symptoms within the community it's hard to find people who for whatever reason are not engaging with whatever in groups or are online i mean lots of people don't have a smartphone they don't have any online access and i think i can understand people are wanting a diagnosis they're wanting to get tests done and i personally think it can be helpful to do some tests sometimes but doctors should learn from the fact that we have been throwing tests around for decades and often finding that they're not helpful they're not useful and unless we're doing things thoughtfully and with an evidence based behind us it is completely possible to do more harm than good all while in having the very best of intentions so i think that just has to be much more research behind this and much more acknowledgement of the fact that we don't know the answer to a lot of things just now and we have to share that uncertainty rather than saying that we're convinced we know what we're doing and i've been a gp for a long time and i would like to think i'm fairly confident in many things but but we have to admit some humility here and say actually you know there's lots of things that we just simply do not know and it's it's not i don't think it's good enough to say that and we should immediately transfer all our knowledge from other diseases into this but equally we have to acknowledge the fact that we understand what kinds of insults the human body can recover from and and how it does that melissa are you still here with us melissa yes i am here can you hear me yes we can so uh nice to see you oh you've got a busy house there that's even better sorry that's lovely tell us a bit about how i mean we know that waiting lists for all sorts of conditions are now at record levels 4.9 million you've got lots of people this illness is like a dirty bomb that can cause multi-system disease that we never predicted and you're trying to prioritize who gets investigation who doesn't how do you make those decisions clinically and is it all part of an evaluation as margaret says that we'll give it an evidence base at the end of it yeah i mean obviously this um burden on the health care system is something that we're really struggling to meet at the moment but these are patients who are very unwell and they absolutely need care and they're already um in a sense causing us challenges and that many of the patients we see are often having multiple attendances to a e departments they're using their gp very heavily um and so it's you know how can we most efficiently support them um and i think i agree with margaret that we don't know what are the right diagnostics at the moment but we do also quite often see important abnormalities on diagnostics and obviously some of the symptoms people present with are quite worrying and it's very important to exclude other causes of those symptoms and and make sure that you're confident with your diagnosis and um although people say that you know the service that we're that we're trying to sort of develop seems like it might be very expensive i do think that um if you can build a model that delivers integrated care that's really high value and we've already seen in north central london that the bringing together of these long-term condition clinicians has had knock-on benefits for lots of other diseases because of course we're all the same crew of people that look after our patients with copd and with heart failure and we found that actually there are new ways of working in the nhs that can really help to bring specialist expertise out of the hospital um and improve the quality of care for a broader uh range of the population without needing an outpatient appointment because absolutely the key thing at the moment is we don't want to bring lots of people to hospital outpatients it is interesting i mean over the last scholarly 14 15 months we've been doing all our consultations for chronic fatigue syndrome pretty much 95 percent of them online and the young people prefer it by and large they're used to using that medium they don't want to travel to hospital because they have fatigue and travel is exhausting for people to find a car space or whatever but you have to safety net it because you obviously you can't examine the patient physically but there is there will be a cohort of patients where um video consultations and that remote access often with faces they've already met before is actually extremely useful for them and they would probably choose that in preference to coming up to hospital do you think i think it's that combination which i'm sure is right and you know melissa's right that we can learn a lot about how to provide care for complex conditions where we don't quite know what's going on acknowledging that uncertainty but i think it's a graded approach we need to be breaking down the primary secondary interface and have a graded approach where a lot of people are getting really good support with a coaching approach focused on the symptoms supporting the cognitive problems supporting the fatigue in in and you know learning for the individual what makes a difference but then if you if you worry having that access to a consultant or a specialist in a certain area or or a diagnostic have a have a conversation get access now but then get them back into that relational work which is so important for patients so that they know they've got someone alongside them working with them so i would say we need an integra you know a much more integrated approach breaking down and using remote a lot of the time is fine on a slightly more personal level as someone who suffered severe fatigue after ramsey hunt what did you learn on what worked for you so i think i went through you know i was acutely ill in hospital and could do nothing you know lying in your bed searing headaches you know not knowing what was going on and then you had the lying around phase of just feeling exhausted and then being encouraged to slowly be part of a a an exercise regime i don't think i used either graded exercise or you know all pacing but i was certainly encouraged to do more slowly um and then but do it at a very personal level so i think the advice we've had around that you know difference between that is really helpful i think of it a bit like a high jump bar and you allow the young person or the patient to set the bar at the level they want to and raise the bar little by little when they feel ready to do it so that they're in control of that they're never forced to do anything before they feel ready and they give it a go when they do feel ready but i think knowing that recovery is common to most people and i think you know we have this problem at the moment where a lot of people are recovering from from covid they're exhausted at 12 weeks but but most are recovering by a year um those that are left it is really a problem and that's where it's it's more similar to cfs i think nikki do we have any uh more questions one of the most common questions which nikki mentioned earlier is about the effect of vaccines on patients with long covert or if there's any data on that gosh we haven't got the vaccine experts with us has anyone actually looked at it whether it is uh joe you've presumably got some patience on there yeah what are the patients sorry i was going to say obviously it's not a clinical trial or anything but guess medinger who's a long-covered sufferer but former filmmaker has been running lots of patient surveys and he did one of about 500 long-covered patients and how they responded to the vaccine looking two weeks post-vaccine so getting beyond any of the more immediate responses to the vaccine and he found that about half of the people who responded to the survey didn't have any difference and of the other half around about two-thirds felt a little better or a lot better and around a third felt a little worse or a lot worse you know that's just a sort of simple survey not a proper full clinical no that's very helpful thank you joe ben has his hand up but his microphone off do you want to contribute ben uh yes just uh just a quick point we we do have a vaccination marker on our survey the covered infection survey where we we um calculate the prevalence of long covert from so we should start to be able to analyze that in the next few weeks as the vaccinated cohort increases in amongst that so and we've also linked vaccination data to primary and secondary care data in order to um to study exactly that to see what what the multi-organ impairment is and repeat that study is liz thank you for that is liz whitaker's still here liz hello hi liz how are you good thank you how are you very well thanks tell us a little bit how how can we safely resume uh vaccine trials and children given that we now have these worries about very rare clotting events in younger people yeah you think it's possible now to try this vaccine safely in children i think it's going to be really difficult to go back to the astrazeneca trial although actually we're really grateful for all families who took part there had been quite good recruitment in the last six weeks before they were paused and all of those young people have had a first dose without adverse effects so i think we'll um i think over time we're going to understand a bit more about the process we'll be able to perhaps identify um prognostic features or blood test results that might be able to predict who's going to be at risk of developing it and i suspect that that's going to be the way back in but pfizer and modern are the other types of vaccines i think that they're paused at the moment in the uk but they're pushing ahead overseas and i suspect that's going to be the way forward for children at the moment thanks any last question nikki or is that a lot i can give you another one if you think there's time oh what are we doing are we going to 6 15. we're past 6 15. sorry fiona do you want to come in at the end or espionage thank you so much phil uh thank you nikki and thank you for fantastic questions from the people uh listening in and to all our wonderful speakers and chairs i hope you'll join us for next one on covet 19 in mental health um very best of luck to all of you who are struggling with this very complex and difficult condition and please keep in touch

Channel: The BMJ

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Id: 2BeC_fVhAXs

Length: 138min 53sec (8333 seconds)

Published: Fri Apr 16 2021