Long covid: diagnosis, management, prognosis

hello and welcome to this bmj webinar i'm fiona godley editor-in-chief of the bmj and our topic today is long covered otherwise known as post-acute chronic or long-haul covered at the start of the pandemic the focus was understandably on the acutely ill saving lives of people admitted to hospital and minimizing the risks to the elderly and vulnerable now a new and troubling phenomenon is coming to light while most people recover quickly and completely from covert 19 growing numbers are finding that they haven't simply snapped back into their pre-covered lives instead after what may have been only a mild initial illness they are experiencing a range of troubling and sometimes disabling symptoms breathlessness cough palpitations exercise intolerance mental and physical exhaustion anxiety depression fatigue inability to concentrate and brain fog are just some of the things being described so what is long coveted how common is it who gets it and why what can those who have it do to speed up their recovery and what can be done to support them and what does this mean for health care for public health and for research we have six experts with us to discuss this still poorly understood multi-system condition including two clinical academics who are now themselves living with long covid we also welcome questions from you the audience which you can put through the q a function and a selection of which we will put to the panel later on in the session so please do send us your questions also we welcome you tweeting about this on the hashtag bmjkovid so i'm just going to go around to introduce the panel and to ask each of them to give their brief initial thought on long covered let me start with you paul garner professor of the center for evidence synthesis for global health at the liverpool school of tropical medicine and coordinating editor of the cochrane infectious disease group paul you wrote about your personal experience of what has turned out to be long covid in the bnj in may i just wondered if you could tell us about what it was that made you realize that your symptoms were out of the ordinary and what has been the response to what you wrote well the nhs website at the at the time said this illness would walk would last about two weeks and at six weeks i was still really unwell and that's the reason i wrote it it had a huge resonance among many people who were going through this madness at home i didn't actually think at the time i would still be unwell and talking about this at six months thank you very much indeed paul and i'm very very grateful to you for being with us um moving on then to nizorinowan um associate professor in public health at the university of southampton and honorary consultant in public health at the university hospital southampton nhs foundation trust nizrin um you are also experiencing your own version of long covid what in your view or sorry how in your view should we understand what long cove it is well thank you uh feet but i did um start my symptoms in uh march um of covert and i was one of the people who read paul's piece and was so happy and got validated really and was sharing it with all uh you know friends family and and close work colleagues by the end of june so more than three months into me not going back to my normal uh hell i was very frustrated by the fact that no one was counting us um i'm an epidemiologist uh work you know public health um and there was no quantification no surveillance of um people who have not recovered from covert um and therefore the experiences of thousands and thousands of people were at large not validated um and not believed um so then i started writing about um how we can uh quantify and measure long culvert in the same way that we're doing with positive test results and deaths thank you very much nasreen trish greenhouse over to you now you're professor of primary healthcare primary health sciences at the nuffield department of primary care in oxford and also a practicing gp and trish you've just written with others an article in the bmj about the management of post acute covered in primary care which is being extremely widely read around the world and in it you make obviously a lot of very good points but one i was struck with which is that you you you say that it does not require a positive covert test uh to be that i've defined as having long covered and indeed i gather that neither poor nor nazarene have had positive or any covet test tell us why that is important in the definition well i mean first of all when we wrote that article we didn't presume to be the people with the authority to define what long covered or posted cove it is you know we said for the purposes of this article this is how we're going to define it uh i think uh there will be other formal groups for example nice i guess might might want to sort of put a definition um but for now uh since we needed a pragmatic definition for for that article uh what was evident to me as a gp researcher was that an awful lot of people who clearly had had kovid 19 and who clearly weren't better had not had a positive test and there's a number of reasons for that but let's put those aside for later on in in this webinar perhaps and just say um you know it is very very obvious that some people many people perhaps even the majority uh have not had a positive test and let's not get into the argument that they can't possibly be defined as having long covered unless they've had a positive test so so that's the marker we've put down and nobody so far has disagreed with that so um let's see how we go thanks very much trish and as you say that's something to discuss later on um moving to valentina pointman senior clinical investigator in cardiovascular imaging at university hospital frankfurt valentina you've been doing some very interesting work on um myocarditis and and mris of of patients with a positive covid test um tell us about how that is um helping you to characterize long covered thank you thank you very much also to for the opportunity to be part of this fantastic panel so our experience with long copy it was really coincidental so we have a long-standing research project in inflammatory cardiomyopathies microdermis being being one of them and we understood that the moment the autoimmunity word came about came we became linked to um to covet that we we are looking here at something that we perhaps know a lot more much better from other from other viral conditions so we applied our tools that we luckily had in place also in in a sense that we could get to the diagnosis much faster much much sooner obviously in germany where i'm based the tests were available so the carving test and we started our research by taking inviting patients that have had a positive covet test but not necessarily hospitalized so anyone who would want to participate and we were to begin with really shocked because actually we thought we were doing a research with the with probably a very very low yield because we were a little bit later in the process of the covet illness we weren't we did we weren't able to bring people into the scanner while they were still recovering in the in a hospital because simply they were out of bounds for us so being a little bit later we thought maybe we won't see much and indeed actually the opposite was true and uh i'm going to tell you all about it in in a little while thank you very much valentina look forward to that um now nicholas peters your professor of cardiology and consultant cardiologist at imperial college london so also in the in the cardiology sphere you've been telling us you have a cohort of patients um who have been registered with the hospital trust for some reason and and that creates a very interesting database of people you've been asking about this so what briefly what insights have you been able to reach about wrong covered nick yes so first of all delighted to be part of this and to to share what we've learned so yes as a as a cardiac electrophysiologist i have an interest in connected care broadly so i used our patient portal um our personal health record at imperial to establish a questionnaire which we launched uh on the week of the 23rd of march so from the first week of lockdown and we've been running it every week since then focused actually on physical mental and social well-being in general but we've adapted questions each week depending on what is current current thinking and um uh trying to predict future thinking and as a consequence we've got a very loyal band of uh around 10 000 regular respondents but about 20 000 in total some of whom have dipped in and out over that what's now 21 weeks and uh apropos of this discussion over the last couple of weeks we've been asking some specific questions focusing on uh longevity of the symptoms and recovery which ultimately will marry with the real-time weekly uh symptom reporting uh along the way but a summary is that out of the 20 000 or so patients in total who are variously dipped in and out of the questionnaire about 3000 report uh thinking that they have had code 19 along the way that they've had the infection i should just point out these are patients who by definition are registered as having had contact with my uh nhs trust so some of them briefing outpatient encounters uh peak is in the 50s and 60s uh it's a it's a very representative distribution um uh and about uh 85 percent are caucasian so um of the 3000 we've had about uh half of those uh sixteen hundred or so who have uh given us information about the longevity uh of their symptoms and out of those sixteen hundred uh about 300 uh report symptoms lasting longer than two months that's a very interesting nick and we'll come back to that later on but thank you that that's that's a very important and uh helpful um contribution although of course as we all know we haven't yet got a decent denominator you know a population denominator for any of this so that that's a a problem uh but thank you nick so tim you've also um made a pretty good attempt to get to the bottom of the frequency if you like as well as the kind of characteristics of long covert and just to introduce you properly tim as professor of genetic epidemiology at king's college london and leader of the covid symptoms study and the symptom app has helped to show that loss of sense of taste and smell was a real and indicative symptom of covid uh which hadn't been quite appreciated before what what are the data telling us about long covert tim it was at least 10 percent of uh people who who had coving end up ended up having symptoms for over a month and uh that number tailed off but there's still we think about 60 000 people in the country uh with uh symptoms lasting over three months thanks very thanks very much tim um and thank you all let me then turn back to paul and nizarin to hear more about your personal experience of this condition and and what that what you feel that means um more broadly so paul would you like to just give us an account of what you've been experiencing um both in terms of your own experience but also the response you've had more widely this is a very bizarre disease and it affects you in waves it's like being battered and you are repeatedly battered over a period of time and that was my first two months and the subsequent four months really has been lesser episodes but still very fatigued i've sometimes been accused of misrepresenting long covid as being only fatigue but that is my experience and it is clearly a wide spectrum of diseases or of conditions and complaints navigating help is really difficult um partly you're muddled in your own head you can't read things very well there are multiple sources the nhs is pretty appalling in its advice around managing fatigue the best help i've got has been from the mecsf literature on pacing which is tends to be under played in the nice uh two 2007 guidelines so it's a difficult disease i'd be interested in nazarene's uh uh views here but certainly it dealing with it is a full-time job and i i looking at the community of long haulers there is a desperate need for good guidelines and advice tricia started this but right now not we call for research but we need people specialists working together in networks getting good guidance out about how to investigate heart conditions and heart complaints who should be having echoes for example it's not entirely clear it's a complete mess across the field and you need coordination and i would encourage people to look at the icu nhs teleconference i don't know whether you know this but the intensive care people in the uk got the uh high volume centers together a hundred people on the call 10 presentations an email came out from daniel martin that shifted itu care certainly in all the hospitals that i've had contact with and we need that kind of responsiveness we haven't got time for papers and and in time it will be revised and improved but that's a really immediate need the only other two things i was going to say was the links to me csf for my condition are clear and everybody sort of foots around this doctors don't want i know a doctor who went back to work at four months before he should have done simply to prove to himself he didn't have chronic fatigue i mean we are pushing it footing around this issue and i also think we need to be realistic about the time needed for convalescence if if you've got someone who's 33 still in bed after six months with cardiac symptoms they are not going to be back at work for at least six months and i don't think people are thinking long term enough about this time to convalescence so but thanks for letting me introduce this well thank you paul and thank you very much for the pieces you've written which i know have been incredibly influential in getting you know helping people to to to to see that this is a real thing rather than something that is um anecdotal it moves us from anecdote to to much more than that nissarin tell us your thoughts on on your own experience and and what you feel needs to come so just just before i um share a bit more about my personal experience i just want to kind of say um just for a minute what is long covered for those who have not experienced it it's basically my current definition hearing other people as well now is basically not recovering several weeks or months uh following the start of the symptoms which were suggestive of covered whether you were tested or not and and most people the profound fatigue is definitely a very common feature but there's just this wide range of symptoms that people report in different combination and they include the kind of the classical cop breathlessness muscle and body aches but other things like those distinctive um chest heaviness or pressure that people including me feel which is quite quite concerning um and other things like skin rashes palpitations which i felt as well you know fever headache diarrhea pins and needles uh skin rash the a very very common feature is the fluctuating or the relapsing remitting feature of this of the illness you feel you've recovered and that's my personal experience as well um and so many times that's it you know i made it i've recovered and then it hits you back and it's kind of a constant cycle of disappointment uh you know not just to you but to the people around you and everybody's like really wanting you to recover whether it's your family you know friends and and your people at work because what's happening is you you people are not going back to work going back to work a bit and then having to be off sick again um unable to do like their daily tasks and chores i mean for me for for months i was struggling to open the freezer doors and and loading the dishwasher um and and you feel like you've recovered and you start doing these things and it and it starts all over again so um i i think i think i think that expectation um and the anxiety about you know about the recovery is a big feature have i recovered you know and have i made it naturally i have and some other has have thought they've recovered and it lasted for weeks at some point and then it kind of the symptoms started again my first symptoms start in on the 20th of march and it was just three days after my teenage son had a very short brief symptoms of gi uh upset um and um and and i started with that as well but then i had the classical uh cough fever and again that concerning chest pressure and heaviness symptoms and then and then the anxiety was what what everybody the the initial anxiety was am i gonna die um and you would go through those first two weeks uh thinking about that and focusing on your breathing and you know your breathlessness but then the the anxiety that of course is like why am i not getting better you know two weeks have passed i'm still there it's still coming going some days you know feels like i'm getting there but some days i don't and actually what really helped me at that point was the informal social media account of other people basically saying what is going on when are we not getting better um that was that that was a great help to me and then i i actually as i said i felt uh better um you know for you know after several weeks and i went full on back to work worked really hard um um for for a few weeks and then crashed again had to take time off work um so so so it's just what happens is you then you you learn your patterns and you learn what actually brings on this utter exhaustion and you learn what brings on the other symptoms as well and you try and avoid um these things and i think to me i feel generally better now but i'm not sure whether i'm actually it it's gone or whether i'm just managing it better now this reed thank you so much that's such a very very helpful description and paul if i might come back to you you've written about uh boom and bust and there's false storms and how how that adds to the anxiety and and um and and uh the difficulty for example employers and family members to actually maintain sympathy with you as you kind of dip in and out of of feeling better and then relaxing again can you talk a bit more about that and also how pacing is working for you well you look incredibly well so you know and i try and go out for walks people say oh my goodness you've you've got a nice tan you know you look so well as though i should be somehow flat on my back somewhere and and that in itself is is is quite strong you say well no actually it's like this um and i you know i'm fairly driven and i thought that i could uh beat this virus you see i i i understood pacing but i always took it to the absolute maximum um and it wasn't until a friend uh said to me uh stop stop trying to dominate this virus try and accommodate it and actually that's quite a good way of looking at it you are not in control virus or the response to the virus is in charge and once you start accepting that then it becomes a little bit easier but your baseline you have to drop by 90 from what you were doing before you you are a different person and you have to be very careful about overdoing it because as soon as you overdo it you throw yourself back into bed and unwell and i have said that i feel privileged with my employer and my own situation poorer people that have to go back to work to put food on the table must be going through hell thank you very much paul um i'm going to move now to tim and nick both of whom have got some insights into a frequency and to some extent that the types of things that people are reporting tim you've mentioned the the 10 with still feeling unwell after a month and this sort of extrapolation suggesting 60 000 people in the uk um could you give us a sense then about the um categories if you like of people with long covert i mean we've heard about two slightly different versions of the illness from paul and israel the kind of constellations or clusters of symptoms that people are reporting so the there were these these cluster of symptoms and it seems to be that but there's nothing specific that that highlights there's only one thing that's going to tell you whether you get long right but we do know that if you've got persistent calf horse voice headache diarrhoea skip meals shortness of breath in the first week you are you know two or three times more likely to get longer term symptoms but we also there's many ways of having uh long covid and so when we took a sub sample that we knew had have actually swabbed positives this is based on 3 000 people with positive swab tests uh 98 of them had fatigue okay so it is not just the odd wacky few this is virtually everybody um 91 had headache uh and then it drops down they're the two ones headache and fatigue nearly everyone's got them and then it was persistent cough shortness of breath and loss of smell and they're the main ones and then after that there's a whole slew of others and the combination of which seems to give you a slightly different risk of of getting the disease or not and we our data suggested also that it was it was about twice as common in females as males and uh although the facebook entries have suggested this is sort of young females we're not seeing that uh it was actually in slightly older when we compared it to people with what we call short covid this is people who've you know gone back to work at 10 days the lucky ones um it was uh the age was it was about four years older so actually we got the full spread of age and we seem to be getting different clusters at different ages so it could be that there's a different type in younger people compared to say the over 65s uh where some of these predictions uh break down it's really really quite interesting that as we get more data we should be able to break it down into these groups and work out uh what's going on so um you know there weren't uh you know there was a slight increase in people are overweight uh but not not dramatic and but we are now able in the first week to put the symptoms together and predict about 75 percent of accuracy of who's going to go on and get long covered so this could be very interesting in in preventing future cases uh you know by getting those early interventions going in in those groups tim thank you very much indeed uh nick what obviously your database is is a smaller database and and people have a slightly different demographic but tell us anything else or or what what you feel um your data adding to that picture yes we're just uh so everything conveniently breaks down into a kind of 80 20 split so out of the full cohort and i'll remind you these are patients registered with my nhs trust at any time in recent years so not specifically to do with covid so they are a spread of patients with a spread of ages and demographics uh about uh off those uh regular respondents to uh the questionnaire about 20 reported having had uh covid based on symptoms at some point the vast majority of those were untested about 80 percent interestingly predated lockdown and therefore predated the symptom uh predated the questionnaire i should say uh and reported this um literally as as uh as soon as we started the questionnaire so 20 have had it during the period of questionnaire and i think that's quite interesting because uh the idea and and these these people are you know if uh if we release the questionnaire late on on a friday rather than early on a friday i start to get emails saying where's my questionnaire it's really become part of their routine and they're very much a community but just having the questionnaire doesn't seem to have surfaced a whole lot of reports of covid because as i say most of them reported it 80 reported it before we even started the questionnaire before lockdown uh 20 uh uh have reported symptoms uh extending beyond two months and uh we haven't uh dug into the data enough to do any of the clustering but for those who had symptoms that lasted at least three weeks fatigue is by far and away uh top of the list with again 80 reporting fatigue as being the principal symptom that extends beyond three weeks with cough and shortness of breath uh coming closely behind interestingly headache uh was uh present in only about 20 and i mentioned that because it's a slight variance with what tim said but certainly fever is is down on the list so that's largely aligned with uh with what um tim just told us in terms of those that have had good days and bad days i think is an interesting question and uh speaks to the point that paul made again about 80 percent uh of those who've had symptoms that have lasted more than three weeks report having had clear good days and bad days um and uh uh 80 are now after at least three weeks of symptoms reporting either full recovery or minor symptoms only so we're then left with 20 of those who had symptoms lasting three weeks or more who now have major symptoms or the complete full house without any resolution of any of their symptoms so that's a breakdown largely 80 20 in respect of all those components all of that conversation leads me on to talk to valentina um valentina pointman about the work that you've been doing because underlying this conversation must be that question about what is going on not only clinically but pathophysiologically um and so perhaps you could talk us through what you've been doing and we can then move on to discuss more broadly i may i would like to share some slides and i'm going to try to bring out a little bit of uh what is the evidence um so far and how do we understand uh the path of physiology and let me just be very very honest this is really tackling only the cardiac part where um i really cannot speak for any other parts of the body um so let me take you through this so this has been the first as in jotted down scheme of what we think the possible pathophysiological processes can be can be involved it comes from the european society of cardiology and even though it kind of has been validated through the uh through the experience it's been a wide cast from the from the vascular um so basically coronary artery disease processes till then coming also to the injury of the myocardium so heart muscle itself um and complications related to this but i'm going to try to bring this these mechanisms a little bit more into perspective when can we um actually expect them to happen so that we can also uh put them put them related them to the patients themselves as they put them alongside the symptoms as they present perhaps just important why is heart involved and this was a little bit uh not such a surprise uh even though we were all focusing mainly on the on the lungs and respiratory symptoms to begin with because the the virus actually attacked the same receptor that is also abundantly expressed in the heart and not just the lungs and this is also the entry point when it comes to the um to the to the to the heart involvement now this comes from the madrid group so madrid um sort of an observational summation of data so patients that have been very unwell during the acute covet illness and have also then sustained a heart failure so hard so really they have they have not done well in terms of the heart with the proper heart failure symptoms and the the important part that came out as a indication of which other patients that are more prone to develop a heart failure during the acute cardiac illness is that they have been on an older side they have had heart failure in the past and they have sustained atrial arrhythmias meaning their hearts were beating very fast during during the covet illness so um one other thing that came about as well is that those that have stopped taking ac inhibitors so so patients with the previous heart failure that have been put on these medications and have stopped them they did not do well we can see here that those with that had these medications withdrawn unfortunately much much worse than those that persisted with this so this was one one important message that we as as long as possible needs to keep up with these medications so why is actually why are the ac inhibitors important so we know that that if you have pre pre-existing cardiac condition uh the cardiomyocytes these are the cells of the cardiac muscle um express this receptor that could carve it virus likes very very much much more and this is bringing this predisposition to being more prone to to be more unwell during the acute heart illness if um if you obviously have a pre existing cardiac condition and also the reason that with ac inhibitors that ace inhibitors help is that they normalize the expression of this receptor so it is protective to stick to the ac inhibitors during the acute illness so i'm going to here sum up a little bit of a mechanism so what actually happens during the acute illness so obviously a huge stress on the heart especially in the presence of pre-existing conditions so hypoxia because because of the respiratory uh infection the pneumonia brings about ischemia of the heart so heart is less well-perfused less well supplied with oxygen and this is definitely something that doesn't do well so tachycardia we have uh mentioned before the atrial fibrillation for instance is something that makes the heart beat very fast in addition to fabric illness itself and in a combination with the pre-existing cardiovascular disease this is what brings about what we also see later in in the evidence troponin leaks so leak of the uh or sign of the injury of the myocardial muscle now i'm going to show you a case from not our study cohort but the case that fits this description a patient that presented with previous uh conditions so hypertension he was known to have atrial fibrillation as a mini stroke in the past short of breath on exertion this is how he presented he had pneumonia to begin with due to carving infection and received cpap but also for pulmonary edema not just pneumonia his troponin was raised but not critically raised what was more striking is the bmp so sign of active stretch of the of the cardiac muscle and clearly ejection fraction so pumping function was reduced we didn't find any scar these are the scar imaging uh sky imaging technique that we can do with cardiac mri so scar would be white which we couldn't see meaning it would there was no direct injury no so to speak cardiac infarction that would cause such an impairment indeed it was truly atrial fibrillation and tachycardia that has pushed him over the edge so it was a very illustrative uh case in that sense we measured the the inflammation markers which were also raised so at the same time during the could carve it into he also had inflammatory involvement of the myocardium itself so with the t1 and t2 values we can determine this so this is what brings me to what we call chronic covet illness so this is the territory where we also did research so these were our patients so 71 days on average down the line we've examined hundreds hundreds of patients that have been previously infected relatively young slightly older than the first study uh 50 50 roughly uh when it comes to the to gender and what was interesting 22 of them so 22 have some pre-existing condition when it comes to the cardiac conditions 13 had a previous uh previously known coronary artery disease none of them was known to have heart failure previously so we found in comparison to healthy and also risk factor match controls that t1 and t2 values so these are the values that speak for the inflammation within within the heart muscle were elevated and that was quite a while down the line and and that was irrespective of whether they recovered at home or hospitalized so both were up our troponin values in this group were also elevated but there weren't that many that would sort of hit beyond the threshold of the um of the myocardial infarction so i do not think this is perhaps very important to to raise that troponin cutoffs that we consider today as useful for understanding of cardiac injury are really well calibrated for covered and this is just a summary of this non-ischemic mechanisms because it really relates to our discussion about symptoms is very different than how we understand usual cardiac symptoms so we all think there must be chest pain there must be shorter breath and that is actually not necessarily the case because after this original injury there is quite a significant time lag before the symptoms of what comes next so symptomatic heart failure actually really takes place so with this i'm going to to finish and i'm going to let other speakers still thank you so much valentina so as i understand it really this was an unexpected finding of what sounds like quite high frequency of people with with what might be considered a post-viral myocarditis or an inflammatory myocarditis of some sort is that i mean you've summarized that i think the study in jama cardiology found about three-quarters of people who had had a positive covert test unselected people had evidence of myocarditis is that right that's correct so 78 had something of which 60 have have active inflammation based on the cardiac mri measures and this was a huge surprise to us because we really thought we were completely too late to find anything but then on the other hand our experience with myocarditis is actually from the stage of heart failure it is we have never done a systematic study after patients of the patients have had the flu uh to actually see what happens on the level of the heart so maybe this isn't such a surprise after all it is perhaps just an opportunity uh of how to get a better insight into this evolution of the disease that we haven't done so far thank you nick you want to say something yeah and i think that last point valentina is important to make i mean it's long been recognized uh in 150 years at the ecg the humble ecg has been around that um ecg changes uh in in the context of any uh viral illness are really quite common and so your point about not knowing not having done such detailed uh investigations in the context of any old viral illness means that i think we can't be very specific in respect of interpreting your findings thank you very much nick i'm about to go to trish but paul comment from you i think this is a really good illustration of why we need rapid interdisciplinary communication uh because the screening of our heart disease we need guidelines for that and you know certainly when i checked 10 days ago the nhs rehabilitation website for covid talked about getting on a bicycle as soon as you can and get exercising so this sort of clash between what's coming out the pathology and the recommendation we need rehabilitation specialists to pull all these things together quickly in my view that's very helpful i'm going to move to trish now because um as it's been said you've you and colleagues have written this some piece about how long coverage should be managed in primary care um trish tell us tell us um really what your conclusions are well i guess it was an interesting article to write because um you know we all know that that there was nothing published on kovid you know nine months ago it was a completely new disease and then we're talking about long cove well i can tell you there's almost zero in the literature actually about the the long-term sequelae of copay because it's a new disease so we partly based the article on on recovery from other illnesses and and that of course is problematic but mainly and this is important we based it on matthew knight's my co-author's experience of running a clinic uh for people who hadn't got better after uh acute coping so he matthew had followed 1500 patients he's a respiratory physician um and he said to me do you want to write this article with me uh because we need to get the messages out to the gps uh about you know what they need to do uh and interestingly i was just sort of trying to answer some of the questions in the chat but there's one patient who said that patient one person who said uh well you know i had covered was it ten weeks ago i've had two telephone calls with my gp and that was it so i paid privately for promotionists and i was found to have pericarditis which kind of aligns with some of the things that valentina's been talking about um you know what we wanted to do is to emphasize matthew's clinical experience that many and in fact probably most patients who are referred to a long phobic clinic are slowly slowly slowly getting better that's the first thing to emphasize secondly that some are not getting better and have serious things that need referring and for the general practitioner and and the the burden of managing long covid is going to fall primarily to the patient themselves actually i think that's what we're seeing but also to primary care where the patient is coming along to the gp saying i'm still not better yet can i have can i have a certificate you know all that kind of thing uh so one of the things we wrote the article for was to say to the gps look you can actually manage most of these patients in general practice using the clinical skills that you already have and those clinical skills are things like listening to the patient documenting when the illness started documenting what the symptoms are and how they've changed and how they fluctuate as we've heard being alert to symptoms that might suggest that the patient needs referring look gps know how to diagnose heart failure at least i hope they do um you know they know how to suspect calmly embolus those kind of things so working through the checklists for uh you know serious cardiac thromboembolic respiratory neurological conditions and referring appropriately but also maintaining what we in general practice call relationship-based care uh hearing the patient's story honoring the story as rita sharon would say and following that story because that story should be a story of gradual improvement and if it's not then maybe that's time to take stock and say look at i you know i think it's about time we referred you to the respiratory clinic or the cardiac clinic or whatever uh and and so i think the sort of interface between the gp and these very specialist investigations and monitoring uh is something that we have to work on a bit uh and the other thing to to put a marker down for now i've got the floor is is in the chat uh there's a number of suggestions and also on on twitter from the occupational therapy community uh and what the ots are saying is hang on a minute we do rehab we do uh monitoring people's progress getting back to work getting back to to living the life they wanted to live and i think that that we should be uh in primary care as well as in secondary care working very closely with the people who really know about rehabilitation so that's probably enough for me uh for now is it thank you very much indeed trish um i think it would be the chat has been very rich and and um i think it'd be worth now turning uh to nikki who is um our clinical scholar at the bmj are you there nikki who's going to um present us with some of the questions to the panel thanks nikki over to you yeah of course so one question that we've had a lot we've had lots of questions about testing um and about why some of the tests come back normal why you still have long-haul effects around um you still have sort of long covered while you're testing negative for covered and we've got loads of questions about subsequently whether people are being reinfected or whether it's the sort of rehab um relapse and remission that we were discussing earlier lovely thank you well let's go to that testing one we've already talked about the fact that having a positive pci is not that is not something that has to be part of the definition um but do you have any um tim you talked about this about the number of people who um have or haven't had a positive test and whether that makes a difference to the to the likelihood or the reporting of long-covered symptoms yeah and we found similar uh data when we compared the positive test people to the people that we predicted positive based on our algorithms so i don't think the test itself and in the early days it was quite biased because only people going to hospitals or big medical staff were allowed a test um and so and in a way that's why we in our data we excluded the first uh week of so you couldn't get into our data unless it was incident data rather than you already had the problem when you arrived so that cut out a fair bit of bias so i don't think that's important and i think you know initially if you remember we just had cough and fever is the only way uh you could be diagnosed and therefore get a test and now we know it's very much more than that um and so i think the the more interesting thing is there's some evidence a little bit of evidence from our data which we're just working on that maybe ant your antibody response might be important in this and there's some it's not great data yet but suggestion that people with strong antibody responses do seem to have the longer term symptoms and that might fit with this idea of the lack of clearing fast clearing of the virus and therefore getting some immune reaction whereas the people with maybe the faster t cell response and the acute fever don't get the longer term symptoms so i think increasingly as we get more data we should be able to get these clusters together to work out uh what's going on and predict you know get our predictions up from 70 maybe to 90 and then really put these people into trials and uh and get it sorted thanks very much to nazareth nazarene yes thank you i just like to comment on testing i think it's it's it's might be useful to think about the long covert people long haulers maybe to cohort there's a first wave there's a first cohort people who were remember community testing stopped all together in the uk on the 12th of march a thousand thousand people who are suffering on covert who you know didn't have that you know ability to to get tested at all um so we need to we can't just say that's you know that's why we'll ignore you know me paul every you know all the others we need to bring in the clinical definitions back again for them to have a solid diagnosis because otherwise you know there's a lot of um you know there's a lot there is some sort of discrimination as you know in terms of clinical care really in terms of who got tested who did who didn't that and and and because it's purely reliant on your reporting symptoms and there's no objective test is that what you're saying that i think as in many other clinical definitions there are a lot of things are reliant on on reporting of symptoms and i think it's about having this big course of people you know like tim's and nyx and actually having some sort of a coming together and having some sort of clinical definition say actually if you had all this combination of symptoms at that time you're you know you at least have probable covert and then you move on but then actually now what's happening is more and more people get getting tested we're missing a huge opportunity because nobody's following on these tests positive people nobody's asking them the question are you better four weeks down the bottom of the line six weeks down the line and that's a that's a huge missed opportunity to quantify and measure you know long covert that really not just as a research opportunity but as a surveillance opportunity as a you know as we're doing with the tests and trace somebody needs to pick up the phone or text people who've tested products with the process and said i'll have you recovered are you back to your normal baseline health before the start of symptoms or before the test date thank you cool so tests help roll in the disease but they are unreliable in rolling it out and a uh the public think these tests are well they did think that they were wonderful particularly the antibody tests where we know that the government approved them on the back of 30 patients that the manufacturer provided data on all of inpatient so there was no these tests were approved without any community people being part of it and i think uh so people go into an existential crisis when they have a clearly had the disease and then they get a negative test they go oh my god maybe i made it all up or maybe i'm not immune and i'll get it again and then the relapse comes and they think they've got caught the disease again so the public information about how these tests should be used is very important and doctors themselves have muddled so i i've even had the experience myself i i'm anti-body positive now i'd like to let you know uh but um uh you know i i i was seen through an occupational health service and and and there was a refusal about actually putting down that i had the disease because it was simply on symptoms i i'd had a severe illness it was said so i think it's extremely important we get this clinical definition of doctors signed up to this because of the long term implications for employment and and so forth thank you very much yes nick sorry tim first then nick just a quick boy if anyone you know if anyone does have loss of smell or taste that is the most sensitive and specific uh link to having a positive swab test and a positive antibody test so you know really we should that should definitely be included and people shouldn't if they have that really they don't need any other test uh it's it's so specific and i'll just quickly add to tim's point that's actually now just a standalone criteria in whole probable case definition just having that symptom very good thank you nick yeah i mean i think this discussion about test positive or negative is us coping with the public health policy that was adopted in this country and one some could say that this discussion is somewhat predictable down the line if anyone had given it some thought it is a compromise okay we have a test in medicine you have patient presenters with symptoms they have signs and you do a test to confirm or refute it arguing arguing whether testing is a good thing is uh really to put the cart before the horse and and trying to cope with where we are but we are where we are and i think we're doing a fairly good job but it is a compromise and i think we need to hold our hands up and say that it is a feature of public health policy and other places where public health policy was different where there is testing available has to be less of a compromise okay notwithstanding notwithstanding the good bad and the ugly when it comes to testing okay we are to some extent ugly because we don't have the testing and just a question to tim uh can you just remind us in respect of your clustering whether you're uh whether your um cohort in terms of um the long covered um signals you're getting were from uh patients who were impatient and requiring respiratory support even or are they the long burners the long slow burners virtually all of them were had not been admitted to hospitals so we're talking people who developed incident disease in the population that we just followed daily with the app and so they're much more representative of the most people with long covert in the population yeah and i think i think that distinction is important and i think you're absolutely right in in that respect i think that that is a is a is a an important point of focus thank you very much um valentina can i ask you to pick up the point that nikki's raised from the from the from the q a group um about whether we think this is persistent by our email of persistence of virus or um persistent inflammation post viral clearance that makes sense i think your data do give us an indication on that thank you very much for this question so um the early data from patients that have had biopsies in our group has consistently shown no viral presence so we believe that this is autoimmune mechanism there was another study from berlin group from patients that have unfortunately died and then had autopsy of their hearts and only in about 40 percent there was still virus present however no active inflammation at the same time so this virus and inflammation seem to happen separately so viral infection obviously an acute stage however this inflammation inflammatory response in the heart comes with a delay and that's why we actually do think we in in the end do the writing of scanning patients later on not to begin with because we've seen much more thank you very much um nikki um other other questions from me yeah another one that's quite popular is questions about how long these patients would be infectious for because the current uk advice to quarantine until your asymptomatic so how does that apply to these prolonged symptoms or multiple relapses and when are people safe to return to work very good who would like to address that tim we actually resampled people who had had symptoms for over six weeks uh and sent them a stand department of health test and we found that uh initially nine percent of them were still uh shedding virus but when we repeated those tests a month later uh only about five percent of that lot so most of them turned out not to be real we asked the virologists and they said it's likely very low levels of virus very unlikely to be viable and they said it's highly unlikely any of these people will be infectious but they are quite likely to produce false positive tests if there's repeated screening so it's just it was interesting lesson because and also it might depend on the sensitivity of the test picking up some of these very low levels of virus but in general uh when we asked about these results we were very worried about them uh the biologists were really quite relaxed and said they're very unlikely to be infectious or to you know if we or to be able to culture them uh nikki any more questions you'd like to yeah another one that is quite interesting actually is the um identification of predictive factors and has what do we know about that so far and has the analysis of the long covered data helped us identify any the predictive factors were uncovered well tim you've talked a bit about this um and in terms of the initial symptoms and then you've raised this fascinating point about whether a high antibody response is also in some way indicative or whether that's predictive um does anyone want to raise to to stretch yeah i thought i'd um get into an argument here um if you are a gp and the patient comes to you let's say at week four or week five in a way it doesn't really matter what happens to a thousand patients because the patient in front of you may or may not uh be heading for chronic covid if you like and so whilst i think tim's work is is fantastic nick's work you know and people are putting out on twitter saying these guys are doing just great stuff documenting what the symptom clusters are for the for the frontline clinician the patient might have just about any symptom cluster and that person might still go on to have chronic covid although it would be more likely if they had the horse voice or whatever that you know the specific things are the point about it is that these symptoms are you know they're not 100 sensitive or specific for predicting uh what you're going to get so in the end what we've got here and i think it's really important that we um get our heads around this we have a high degree of uncertainty around the future and clinicians don't really like that they like to send you for a blood test or an x-ray to say yep you've got that or you haven't got it but that's not what we've got here what we've got is a very very uncertain highly variable clinical picture when i was at medical school they used to say there were three things that can cause just about any symptom cluster tb sarcoid and syphilis and then just as i left medical school we got hiv well we've got another one now which is long covered it can present in multiple different ways and affect people uh in in very varied ways and i think we need to be able to handle that uncertainty and the way we handle the uncertainty first and foremost is by sharing honestly with the patient we actually don't know how long this is going to last we know that most people with what you've got are going to get better gradually but we also know that some people with what you've got are going to have a much more drawn out illness and some of those are going to have something that's really quite serious so i think that honesty with the patient is really really important and also just believing the patient and saying look you know you've got something unusual but it's not unheard of and we need to now go into a journey however long it's going to last i your gp i'm with you on this journey and let's just keep keep tabs on you uh and and you know those kind of things so it's it's partly about the clever immunology it's partly about the sophisticated tests but it's also about handling clinical uncertainty and and therefore as you've said in the piece in the bmj with your colleagues um not over investigating if you can possibly help it well yes but not under investigating either and some of the people in in with the chat questions and i bet their gps are saying well come on then who should i investigate how aggressively should i investigate uh and i would say look we don't know that but if you are a gp with 10 20 years experience your own clinical instincts are probably not a million miles off where they should be if you think gosh i really think this patient might need a troponin test or i really think it would be a good idea to x-ray this patient that may not be so far off but i think um to follow the story to see whether the patient is improving uh and to listen very carefully to them if they're telling you that they are getting worse uh particularly if they're getting rapidly worse so they've you know they've gone along till week seven and then suddenly they're more breathless that doesn't sound right does it so let's get that patient seen promptly for the tests that they need but if they are gradually gradually getting better uh then maybe you don't need to investigate them thanks trish nazarene um i just want to comment on the predictive um question from a different angle which is the prevention public health angle because we we uh um so in terms of characteristics of who is more at risk of death we've heard a lot about that and then we then base public health or you know public health public health policy has been based on shielding or protecting the vulnerable and allowing a certain level of the infection to run in the community now with long covert we have no idea who's more likely to get long-held and as we just heard from everybody there's so much uncertainty are are these people gonna get better are they gonna you know have long term disability um um later in life you know we we don't know so actually this really shifts the public health narrative because you know once long covert is taking seriously and we have no idea at the moment who's more likely to suffer from it so we can't say these people has to have to shield or you know be protected um then that really is a massive shift in in public health uh policy in that we we can't really accept um levels of the infection to just run through the through the community and we have to try and minimize that as much as possible until there's a uh accessible and effective vaccine thank you for that misery um i just um wanted some of the tim do you want to come in there yeah just to support trisha and gps ma you know having a really tough job here with uh people that they're seeing at you know five or five weeks or so our algorithms are not useful for clinical practice they you know they need computers and and it's not that brilliant yet um but i think the important thing is to know is we saw 10 percent of people at uh at one month but only two percent at three months so generally between those period of time gps can reassure people that you know eighty percent of people should be better by three months it's uh it's unfair on the three month ones but at least 80 percent of people uh you know will be getting uh rid of most of their symptoms and i think that that's the other message that it is decreasing uh and that tail although that tail is long we shouldn't just give up at one month and say that's it thank you paul i like uh trisha's uh pragmatic approach the only thing i would add is occupational therapists are incredibly valuable they they know how to manage fatigue a lot better than doctors and the second thing is encouraging self-help and people to help themselves within communities we've set up a small pacing group where we meet every week and talk about how we're getting on and swap stories so encouraging people to work socially between themselves because it is quite an isolating illness and it is a difficult illness to negotiate and self-help groups that people can run themselves are can be very helpful trish yeah can i can i just um put on my patient hat a few years ago i had breast cancer and i can tell you where i learned most from it wasn't from my consultant it wasn't even from the nurse it was from fellow patients who said this is what's going to happen this is how you're going to feel about it this is how to handle it and that was in a disease that was actually very well documented and one of the things that i have found so impressive in my own research into long covid is how peer support from patients fellow patients has actually reached the parts that the medical and clinical professions haven't reached and i think we should and actually i am doing a number of sort of focus groups and interviews with people with long covert including doctors nurses ots dietitians who've got long covered and i'm learning a huge amount from them and they've learned lots from each other so i think this is an illness where we it the research community the clinical community should be in partnership with the patients because actually they're ahead of us in a lot of things they're the ones that describe lung burn brain fog you know these these are the things that are happening we didn't have that in our lexicon it was the patients that came up with it so we need to make sure that we have a democratic partnership uh both clinically and in terms of research um i'm going to bring us to a close if i may and thank you very much to everyone and thank you to the questions and i hope you will continue to tweet on hashtag bmj covered and this session will be recorded and and available later but just to bring things to a close i wondered if we could just go around and hear from each of the panelists what do you think this means for the way forward nesrin you've already talked to us about the public health messaging has got to change in light of long covered what does it mean people might say about the future for research what does it mean about the future for healthcare provision and what would you like to see happen now if i could go around very quickly um from each of you on that nick why don't you start i think nazarene's point about you know the opportunity of now with some wholesale testing getting more information about it i think is very important but we also need to contextualize it with the impact of any old viral illness as i would say and in particular i would encourage uh valentina to frame her data in that context thank you very much nick valentina your thoughts on the way forward thank you it's a fantastic introduction not just the viral illness but also other autoimmune illnesses in this respect i would really like to emphasize that even though i have an expensive machine i use it in a humble way i'm trying to validate the symptoms the symptoms that patients have and nobody believes them how many times do we see patients struggling having done a lot of we've seen a lot of specialists and actually when they come to us we give them we give them the diagnosis and they are grateful for it i wish i could i could exclude the disease instead so use us much more thank you very much indeed valentina thanks for your contribution trish well i mean given that i'm a researcher i would say that that you know my my two pen at the end of this webinar is that we need more research i think we all agreed on that one of the things i think we need and the gamers came up in the chat is to properly code what is going on with post acute and chronic covid and to use routinely collected patient data um from primary care and and also secondary care to follow up patients with this condition so that in a year's time we can all come back and say now we know what was really predicted and now we know the kinds of tests you need to do all that kind of thing unless we're doing systematic research um that's not going to happen so so you know this from the research point of view in a way this is quite exciting although you know i do acknowledge the dreadful human suffering that that's happening so yeah hope everyone's in the gps have joined the royal college of gp's um sentinel practice system and simon delusion is collecting lots of data on that so a little bit of a plug for his work there thank you very much trish tim uh i'd like to obviously see every long covey patient being logging themselves on the app so we can link their particular symptoms their clusters with their antibody status and swabs and etc and use that as a basis to start trials um i would be starting trials uh at one month to make sure that we can reduce the numbers of people suffering at three months and the obvious one you know you start steroids you know um it seem you know it's cheap it's pretty safe and uh let's let's have that as the number one trial and uh see if we can reduce the number of people still suffering at three months and give us an idea of whether you know that approach is going to work thanks very much tim misery well my final webinars is to say we really must count health affected by coving not only count lactess and deaths um and my clear really to the who to all public national public health bodies is is how how do we count it we don't know exactly what it is well let's try and count who's properly recovered from the virus because at the moment this is extremely loosely defined who's actually now back to their baseline health after having the virus and who's not and then in that pool of people who are not we need to do the research and follow up and actually um you know to direct care for them but also quantifying that is so crucial to the next stage of managing the pandemic because the whole as the public health response would change if this is a significant problem there's so much uncertainty attached to it it needs to be um transparently quantified and communicated to the public so that they can make judgments about their risk-taking in the pandemic thank you nazarene and paul i think what's tremendously exciting fiona is you've brought together a multi-disciplinary team with a variety of perspectives both from general practice to research to clinical care to public health um and the way to advance forward in the in the care that we need now and the guidelines that we need now is to continue to do research but use dialogue and inferences that cross disciplines under the hat of rehabilitation thank you very much paul thank you very much to all of you for taking part in this thanks to the audience for your question sorry we didn't get to all of them uh this is one of a series of webinars we're going to be doing on covid as paul has just said and we've all acknowledged it's a multi-disciplinary condition whether acute or chronic and we're going to be trying to go through the major disciplines that have been affected by uh covid 19 over the next few months so i do hope you'll sign in for those as well please do continue tweeting on bmj covered bmjkovid and please do send any comments via bmj.com via rapid responses thank you very much again and keep well keep safe thank you

Channel: The BMJ

Views: 222,397

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Id: zTrIl52jV0s

Length: 73min 56sec (4436 seconds)

Published: Fri Sep 04 2020

Reddit Comments

[u/fork_yeah]

Yes! Six months later and I'm still dealing with shortness of breath, heart palpitations, and chest pains. :(

[u/FairyOfTheNorth]

r/tihi

Thank you for sharing. Good information