Fatigue and Breathlessness in LongCOVID

hello everyone my name is rachel moses and you are listening to the hp leader podcast i'm delighted to be hosting a one-hour podcast special on everything that is going to include the effects of fatigue breathlessness in long-covered patients now this is a really complex area and i've had multiple requests for this podcast so i'm delighted to be co-chairing this and having a team of experts with me today now it's really important this disclaimer here is this is people's experiences it's their personal opinion of what they're saying um it might correlate with a lot of you some of you and maybe some have different experiences but i'm just really grateful for them to share this space with me tonight and everyone is contactable on twitter as well so i'm going to come over to my co-host so she can introduce herself first camila can i ask you to introduce yourself where you're from and a little bit about yourself okay so my name is kalima ibrahim so i'm a senior occupational therapist and at the moment i'm working in the prison service with a variety of patients from age 18 onwards till i think about 100 years old um and also i'm also a member of the baymo tea network ot network and also i'm running for um the council seat for the royal college of ot for the english english board yes and i listened to a recent podcast with you and was absolutely fantastic and hence i'm delighted that you're called sharing this today with me thank you natalie oh thanks and thanks for inviting me it's really lovely to be here and so i'm natalie i'm a physio and i work i'm self-employed private practitioner and i work with people with me and obviously more recently long covid um and i also work with julie who's next to me on the screen and for a company called respiracare they're a respiratory company and we're running long povid uh recovery programs um at the moment i also am co-founder of physios for emmy um and i think that sums it up so good to be here thank you thank you rebecca hello uh so my name's rebecca livingston uh i'm a respiratory physio and and i am the current clinical lead therapist in the uclh covid clinic um so we are seeing um patients who are post hospital but also patients who are referred post a post ed and patients who are referred in by gps and so respiratory is my background but now kind of learning a whole new discipline it seems that you know is everything post favored thanks rebecca hi everyone so i'm sue pemberton i'm an occupational therapist and i work with the yorkshire fatigue clinic and we're a specialist service we work with people with fatigue disorders such as post-viral fatigue syndrome may chronic fatigue syndrome but also where fatigue occurs in other health conditions as well thank you and i'm particularly delighted to get you on a podcast there's been many requests to hear your voice so thank you so much julie hi yeah thank you too for the invite um my name's julie i'm a respiratory physiotherapist i work as natalie says with respirator and we're currently running the post covered lung covered rehabilitation programs which is um proven to be very challenging but very rewarding and learning lots from natalie which is good i also run a clinic at the institute sport exercise and health where i help athletes with breathing pattern disorders and i have a particular interest in helping patients with breathing pattern disorders i'm a committee member member of the breathing pattern disorders group too yeah thank you so much and um very much when we mentioned on the last podcast about you and that having that crossover effect so delighted to hear about that and last but not least lovely darren who's the epicenter of this visual podcast you're in the middle of mine so you'll be recorded in the middle so um darren please can you introduce yourself and why it's so important that you're here hello my name is darren brown i'm a cisgendered gay white man of mixed english and irish heritage um i'm both a clinical and academic physiotherapist my background is primarily in hiv disability and rehabilitation but i am also a person living with long covid and i am one of the founding members of long covered physio which is an international peer support group or physiotherapist living with long covid and we act on both education and advocacy for safe access to effective rehabilitation well thank you and i'm delighted you could join us tonight and it's very short in order to pull this panel together literally within 24 hours and some people just being contacted today more than one so thank you um so we're understanding more and more about long covered in the different dimensions the different phenotypes that are emerging within this term so rebecca i want to come to you first as he's mentioned you are at the epicenter of actually one of the first formed long-covered clinics in the uk and have seen now thousands of patients um recovering from corvid so do you want to tell us start off a little bit about some of the presentations you're seeing and i know some of the research that's coming out you're very much correlating with some of the long-term symptoms that you're seeing so over to you first please thank you and so yeah it's been a very much kind of evolving and learning as we go and our clinic was sort of thrown together in may last year where we actually started treating patients uh in a van on the street because our outpatient department was closed um and we were seeing everything from people who were discharged from hospital and people who were being referred by gps and then people who uh had come to the emergency department and were being safety netted and sort of followed up in clinic and so we're seeing a whole spec of things and the clinic seen over a thousand patients and we've seen over 700 of those face to face for a physio assessment and and we've been very much kind of um screening symptoms from a from a variety of perspectives because we couldn't have every specialty that wanted to be in clinic in clinic so we've been um sort of learning as we go and sharing experience and and then sort of seeking support as we come across presentations and i think my sort of overriding feeling from clinic is that there is so much diversity in the way that people present and that it's really a multi-system condition so um i come to it with a respiratory head and so very much looking for kind of breathing pattern problems in patients but really seeing this this interplay with fatigue and having to kind of develop skills in that area to kind of be able to manage it and thinking about kind of the the psychological impact of limited living with those new limitations and the impact that has on um on you and and juggling i guess the questions around kind of medical things that could be underlying the symptoms that people are feeling and we're definitely seeing sort of different phenotypes in clinic and we're seeing groups of people who've got autonomic problems we're seeing people who have got neurological problems we're seeing people who have got um respiratory problems fatigue issues and a whole mixed bag and the interplay between those symptoms is is what makes this um group very interesting to treat but also very challenging to treat uh and yeah i guess is why the beauty of a podcast like this to bring in all the expertise to kind of discuss that is really lovely so another slight disclaimer is that we're not going to teach people how to do everything on this podcast in one hour um but one of the common questions that i get asked is um in terms of hosting the podcast so hosting the conversations is in the absence of a medical reason in the absence of a physiological cause if you like these patients are having these persistent symptoms and how can we as the therapists that are being referred them either help to manage that is the only person that exists or how can we sign post on so some of the questions we're going to talk about is exactly what's come from these clinicians like you said so with taking in the complexity and not having time to teach but this might be the one of many conversations thank you over to my co-chair so one of the biggest reported ongoing symptoms for those with long covidis fatigue it's a major issue so sue can we come to you just to help explain some of the thoughts behind what causes fatigue in this patient group and why they feel fatigued and obviously natalie and darren if you want to come in as well you can thank you so firstly to say um fatigue is actually a really complex symptom so as soon as we start talking about fatigue we actually start to talk about complexity it's prevalent across all health conditions so actually i would be amazed if any condition didn't have some element of fatigue because if you look everywhere in health fatigue is actually there the reason we don't talk about it is we under recognize this symptom because there's no test for it and there's no drug for it so often doctors will skip talking about fatigue because there's nothing they can do about it so we've had this problem in healthcare for a long long time is about understanding fatigue as a symptom of any condition but obviously we're seeing is very prevalent in this particular group with long covet one of the issues with fatigue is sometimes we talk about primary and secondary fatigue so primary fatigue is fatigue caused by the underlying pathology of the illness so this is where we're looking for biological changes in systems that might explain why somebody has fatigue so for example if somebody has respiratory damage or cardiovascular damage you would see that as a cause for primary fatigue and that by treating that underlying damage or problem by giving them treatments for that we would then resolve the fatigue and traditionally then everything else has been prescribed as a secondary fatigue so you'd go okay so if this isn't explained by the underlying disease process we're going to say it's to do with everything else and generally that covers things like your sleep diet your fluid intake things like your background biochemical chemistry have you got thyroid problems are you anemic it also covers mental health so has it affected you in terms of anxiety and depression and we know these are significant symptoms in people with long covert um but also it could include your socio-demographic so those might have a factor in how you experience fatigue so that's our very traditional model but i just want to say that increasingly particularly in post-viral fatigue syndromes and areas like me we're looking at primary fatigue in a different way so we're not just looking at the damage that a specific disease process might cause we're understanding more than actually a disease event so an immune reaction so virus can trigger an immune reaction may cause dysregulation of the body's systems so systems that help regulate us so our autonomic nervous system our immune system and our hpa access which refers to our sort of endocrine balance so all the systems that try and keep our body regulated and sort of in an even keel actually can become dysregulated following an infection so for example you might develop pots so postural static tachycardia syndrome following a viral infection because that dysregulates your autonomic nervous system so we would see fatigue in these sorts of groups as maybe coming from different causes depending on which sort of phenotype or or cluster of patients people fit in that maybe people have fatigue related stay being prolonged um icu maybe being immobile for prolonged periods but you will also have groups of patients who have mild disease processes nothing is showing up on their tests which is a very common experience yet they have significant symptoms and fatigue often exists alongside lots of other dysregulation symptoms and they are often the ones where people go well there's nothing we can say therefore you should be fine and actually there's an awful lot of evidence around this regulation and how disabling fatigue will actually be in those groups of patients even though their biological markers are normal okay and really interesting so are you finding any particular age group as well in your clinics or adults or well what's interesting looking at the research about long covid so far about gender and age groups is the the sort of female prevalence so the sort of 80 percent female to 20 male very much um maps onto me so if you look at me the gender difference is about 80 percent female to 20 male and again with age groups um a lot of age groups around such of young children going up to about 18 and sort of 40 to 55 year olds would be the prominent age groups in me so we can see a lot of similarities that maybe people are developing post-viral problems there might be age groups however we're seeing people right across the age group so it doesn't mean that you only get it in those age groups or if you are about gender it obviously goes right across the board but we'll certainly the more research that's done the more we'll start to see the patterns emerging okay thank you darren do you have anything to add yeah so so for me i think that the issue is around the use of the word fatigue because actually i think that the presentations that people have are so diverse and actually fatigue generally tends to cover an incredible spectrum and if we think about actually how people use the word in the english language so this is a very english language specific issue people say are a bit fatigued today are a bit tired and they might use that interchangeably however my experience of living with long hovid was i was using the word fatigue but it was profound exhaustion where at my worst i was bed bound yet i'm still using the same word that someone uses after a busy day at work so i do think that that's a really important thing that we need to be mindful of which is that we're using a word that maybe isn't accurately describing the severity of disability that people are experiencing with this symptom okay natalie the really good point darren and it's interesting that even i i'm talking about the um world and what's classified as mild me is you know like a 50 reduction in in functional capacity and you know mild with a 50 reduction in capacity so it's again just talking about this terminology and this is probably where there's a lot of confusion potential conflict and i think you're absolutely right that we need to kind of unpick quite a lot of the terminology used in this field um so i just think it's um you know it's it's a really interesting point and people you know that's where that you know a lot of address comes in the person's just a bit tired bit fatigued it does not reflect what's going on we're seeing people with long covered who are 40 some 10 percent of their you know previous hovid level so they're bed bound mostly or housebound and and i think this is the severity of long covid that we need to be really mindful of um so i think it's a really good a really valid point for raising it yeah okay so there also there are significant reports of like brain fog or what we know is maybe cognitive impairment or some people might call it cognitive fatigue does that impact fatigue or not do you think the cognition i think you can look at it both ways round from from my point of view because obviously one i think this this way we use the word thing darren made a very good point because fatigue is such a disabling symptom and it's not just muscle based it's across the whole of the body's systems which includes the brain so when your brain stops functioning because it takes energy to run the neurons in our brain so our brain takes an awful lot of energy to work on a day-to-day basis so if you imagine the impact it's having on your muscles you know you cannot repeatedly use your muscles because you are so low on energy and so fatigued it's also having the same impact on your brain and if your brain is low on energy then that will cause cognitive dysfunction so part of the problem is going to be that they're not separate things you know cognitive and physical fatigue it's all the same systems so we often see that the sort of cognitive symptoms are partly caused by the fatigue itself some of it can also be the brain and how the brain responds to situations so we do have some people whose autonomic nervous systems get stuck in certain modes and they are the people who can talk about their brain being very wired so even though they feel completely exhausted and unable to do anything constructive the brain may still be freewheeling so that in itself can add to the brain fog because it's like a hundred voices talking at you at once and you're trying to do a simple sum you know if your brain is over active and i think we should also link in there the sensory problems so your whole nervous system is turned up it's like amplification so pain is amplified everything's amplified so your sensory experiences are also amplified so if you imagine noise light people movement pain proprioception every signal coming into your brain if your brain isn't able to filter those out that's overwhelming so it's very difficult to then think so so some of it's down to not having enough energy in the first place but some of it's also about the impact that these systems changing have on our ability to just do basic thought yeah darren do you want to add anything in as well i was nodding through everything you were getting there it was very reflective of when so i as a person living with long covid my trajectory has been overwhelmingly that of improvement i'm now a year into living with long covid and i would say i'm anywhere between 80 to 90 back to my baseline however when i was at my worst at my most disabled um the words i used at that time was that i was in a crash um i had zero energy there was it was like someone had unplugged me and actually coming to the the brain fog i did have that symptom and it there was no way of really unpicking at that time what was causing what because actually i just had nothing in me and i had so little in me that i had what you was describing which is that um over stimulation um so simple things that were cognitive tasks that to the ordinary person would not cause fatigue or exhaustion was causing me fatigue and exhaustion so i was watching television an example was i was on the phone to my mom and if there was background noise it would set me off and i wouldn't be able to maintain my energy levels and i'd have to go away go lay down and sleep but as time has gone on and i've improved i've noticed that there are different things that set me off so obviously there's the physical exertion that can set me back but then there's cognitive exertion and i noticed that my symptoms i can see them coming on so when i get brain fog i know that's the beginning of me starting to get my symptoms and i need to quit what i'm doing and and rest um and actually personally i found monitoring my physical exertions much easier than monitoring my cognitive accessions i think that's a i was going to say if it's a really really common thing that we're hearing darren it's that the physical exertion is so much more easy to to manage to understand to measure to feel into the body to know what's going on but the cognitive exertion is is particularly difficult and we get asked a lot in in our program about what can i do how can i manage the cognitive side i'm so foggy i'm so disorientated um so it's a really common quest god so you're going to say something yeah i think that that's exactly it nasty but i also did we also need to mention social exertion people are tiring yeah and again people very much focus on movement they think well if i'm sitting still i'm not using energy but if you're talking to somebody that can be one of the most incredibly draining experiences because you're trying to react to listen to cognitively process and people really underestimate they just don't recognize as you were saying darren it's a process of learning what triggers my symptoms and it may not be the obvious things that you think it may just be spending time with your family because there's people moving and doing things and talking and you're trying to interact so absolutely those are the areas that people really struggle with and with that as well our current landscape is overwhelmingly that of being in lockdown and so many people haven't necessarily had the opportunities to try out normal social engagements so even in our long covered physio support group today there are people saying well i got to be with my family over easter holiday and i'm shattered like what the hell's going on all i did was say hello to my family a bit more so yeah that we're not even able to fully participate in our normal social roles to explore all of those triggers all the time because of the landscapes we're currently within i think also um what i'm finding is people when they are patients when they're ready to go back to work and they're sort of thinking i can do a graded return i can i can go back for you know two hours a day it's fine and it's it's about considering getting up in the morning getting changed getting on public transport all that like sue said all that sensory information the physical exertion the cognitive loads very different type of cognition that you're using at work and come back and they are absolutely exhausted and return to work has has failed um because in your home environment where everything is stable as stable as it can be in the exertion levels are not so high as soon as you step out into the environment the unpredictable environment it can really really have an impact and i've had um one patient recently who wanted to go for coffee with his friend this was actually prior to the previous lockdown thought it would be okay one hour i'll be fine one hour sitting in a loud cafe trying to talk trying to concentrate and it absolutely set him back for about two weeks where he was mostly bed bound for that time from doing one hour of a normal activity that you would think you'd be able to manage so it's profound um i'm understanding so you're going to say something yeah is exactly what you then came to i think we also need to recognize the boom and crash effect that the people want to do things yeah they you know naturally want to improve things want to you know go out there and do all this stuff and so what they will inevitably do and we see this in in all fatigue patients is they will push themselves too much not realize the limits and then have this crash effect afterwards whereas i think there's often a belief that you know people just don't want to do it or they're avoiding it or that's not the case at all people as soon as they have energy are likely to go use energy and it's actually learning to work within your energy envelope is the biggest challenge for patients it's not setting goals and trying to reach them it's doing it a stable way that doesn't say so i thought that was just important to mention at that point rebecca did you want to come in yeah i just wanted to also add um the effect of emotional exertion as well and i think that that's something that we see a lot in clinics so um people maybe you know patients will say i had a conversation with my um parents the other day and when i came off the phone i felt really really and really drained it was a it was quite like an emotional conversation i think there's also an element of like the the self compassion that's so important for patients in terms of making progress because what i hear from people when they come to clinic is they talk about i feel like i'm lazy or um i worry what people think or you know i they they're putting a lot of pressure on themselves to get back to work and we're doing everything in their power to manage their situation and i'm pushing to improve and that carries with it an emotional exertion as well and so that you know that effort in the same way that physical activity or cognitive effort is a thing so is emotional effort and when people are thinking about you know the petrol tank and how full it is that you know they will spend energy on on the emotional effort too and i yeah i just wanted to kind of bring that in as another factor you know we talk to people about um managing or kind of addressing their feelings around these new limitations they're facing because i think that's so important in terms of progress with their physical health is also you know treating their mental health as well and and you know it's heartbreaking to hear these stories you know the story that you're telling darren is one that you know i see you know 10 15 times a day in clinic it's it everybody you know it's really it's really heartbreaking and you know they're also um you can really recognize you know a lot of these people are you know young they are you know many of them are healthcare professionals you know working in you know high-flying jobs and you know juggling kids and you know were previously fit and active and you know there's a big um burden that comes with that um that new limitation and restriction darren i want to say thank you to sue actually and to echo a point that sue made about the the um the the issue around goal setting and abilities so when someone has the energy they're going to do it and i think for me this is where the biggest element of uh stigma and shame comes into this to echo what rebecca was saying which is that many of us that are living with long covid are feeling the stigma because often it's being blamed on mental health issues or that it's in our head and actually all we want to do is get back to our normal lives and then with that comes the internal shame of not being able to fulfill our our roles our identities and our activities that are meaningful to us and all you're trying to do is find this balance between what i can do and what i should do and that is actually incredibly difficult and when people say just avoid a boom and bust cycle you think oh we've only if it was that easy [Music] wow geez i love this kind of learning i'm just sitting here like absorbing all this in because obviously this isn't my bag and i just want to say this maybe controversial point here darren on that note is this task orientated goal setting it's such a therapy maybe physiotherapy thing and this is the thing with the majority of these patients getting referred into a physiotherapist clinic that because if when the long call the clinics don't exist and natalie i'm totally excluding the physios for emmy and everything that you guys do in this because you're experts in that field but generally we're just that's what we're programmed to do it's like okay you can't walk climb a flight of stairs okay we'll work well three flights well three one day and then for the next and five it's it's this fatigue management everything that you guys have just explained that in rebecca that you're having to learn a whole new trade is a respiratory physio so yeah i'm just learning all the time now i want to move on but still on the same track obviously about the interplay or relationship between breathlessness or this whole podcast julie that were had where we talked about breathing pattern disorder or breathing pattern symptoms in long culvert in this kind of umbrella of breathlessness and rebecca will bring you in as well um and just what that means for lancome patients so julie do you want to start by just talking through that a little bit in the interplay between fatigue and those symptoms because i think initially um you know a lot of people sort of think well what the hell is breathing got to do with the symptoms of fatigue that you guys have all talked about and um as a breathing pattern specialist i spend my days teaching people how to breathe properly and the problems with an inefficient breathing problem breath uh breathing pattern is that you can use up to 30 more energy just with a poor breathing pattern and you may have no idea that you're breathing badly so you may not actually experience breathlessness as such you know so you know 30 of the population breathes badly and and so often it can get missed and so it's for me what i've learnt with natalie and helping people stabilize their fatigue and understanding all the things that you've talked about is that we cannot miss this opportunity to also help them to learn how to breathe correctly learn how to breathe within their metabolic requirements um because i think that not only is a poor breathing pattern using up too much energy and we're trying to help these patients you know sort of reboot and re-energize and recover and and gain energy we don't want to waste it on an inefficient breathing pattern and but also that there is a proportion of patients that and unfortunately it leads on to developing a chronic hyperventilation so that means just the not just the pattern but sometimes the rate and volume really subtle chronic hyperventilation again the person's not sitting there puffing away you know you wouldn't necessarily notice it but it some people are so sensitive to changes in their carbon dioxide that in actual fact just just breathing a little bit too much can give quite a strong systemic reaction and i think that this is something that's really important when we're assessing people and with fatigue and long coverage is that we're recognizing this may be playing a part in some of these symptoms i'm not saying it's the cause but it could be influencing them so you know you've got to remember that you know a low co2 level is going to cause um vasoconstriction in the brain we often get people talking about unable to concentrate and when they suffer with chronic hyperventilation they're getting pain they're sensitive their muscles are tense they get chest pains and they get fatigue in their muscles you know the the lactic acid you know the buffering system the body is sort of lost its homeostasis so we have to appreciate that this could potentially be something that's stopping the person from recovering and and contributing to this sort of cycle that they're stuck in um and and also i know we'll lead on to talking about how we're gonna we'll manage them but we've got to remember that you know um breathing has a direct effect on your sympathetic nervous system your autonomic nervous system so again you know um we know that people you know that when you're suffering these horrible symptoms it will make you breathe badly and breathing badly whether it's bad pattern faster rate faster volume will also aggravate your symptoms do you know what i mean and so it's trying to break that cycle and what natalie and i have found um is that you know um highlighting to patients how they breathe has been a real eye-opener for them so you know in terms of them understanding you know the way to breathe and and having a sense of control i think you know there's so much uncertainty and i think we just presume that breathing is automatic whereas in actual fact we can for short periods of time we can influence it so it's it's it can potentially be really powerful and i think like i said before you know that the the overlap at first sight you go i really they go oh wow yeah there is a massive overlap thank you rebecca can i come down for comments and then anyone else that wants to jump in yeah i mean i would echo everything that julie's saying and i think the the other thing that's been really um striking for me so as somebody who also treats breathing pattern disorder and works with people to improve their breathing patterns and and get better that way pre covered what i'm what i think has been a curveball for me is that the for these patients you can get them to a point where their breathing pattern is improving um and then they'll have a relapse in their fatigue because you took your eye off that and then the breathing pattern gets a whole lot worse um and that's where this like joined up approach of working respiratory specialists and fatigue specialists i think is so important because you can't treat any of these things in isolation you have to treat everything altogether and if you take your eye off the fatigue the practices will get worse and the other way around and so you know yeah i just think that that that joined up approach is really important and that message to patients um you know i think a common misconception in clinic when i see people is that they'll come and they'll say you know i'm breathless because i'm unfit and i need to do more uh and you know that then you're like alarm bells you know absolutely not you know the first thing that you need to do is do less uh and we need to get the fatigue under control while we retrain your breathing pattern and do both together thank you darren the nod and dog and then coming into sue i know i'm liking you a lot today yes yes yes yes um so in the absence of understanding the mechanisms of what causes long covid which is ultimately a lax consensus definition but basically an umbrella term of the persistence of symptoms we know that long culvert is multi-dimensional in nature and we are seeing people present with wide clusters of different symptoms so yes of course we mustn't be treating systems in isolation because the body is not like separate systems is it it's we are one thing um i think what's really interesting for me with this is that so this is a primarily a respiratory virus so unsurprisingly it's going to be having an impact on our respiratory system um but what we're seeing is that um not everybody is presenting with long-term breathing problems such as breathlessness or breathing pattern disorders but some of the rehabilitation approaches that are being utilized are adopting a breath work style early on and seeing positive effects of that now obviously we don't have the evidence on what that may be yet my understanding is but there are different hypotheses aren't there so for example we know that many people are having dysregulated autonomic nervous systems or dysautonomia and one of it's an umbrella term again but one of those things is postural orthostatic tachycardia syndrome i personally believe that i have a dysautonomia because i have an exertional tachycardia but i do not have an orthostatic intolerance so i can stand up and not feel faint but i do have a strange heart rate when i move now what we are hearing is that breath work or sorting out people's breathing patterns may actually have a positive impact on our autonomic nervous system now when we don't understand the mechanisms of what causes long covid all we can do is try to manage the symptoms and this may be an approach to that we don't necessarily know if we can manage it better but we hope we can in the future but for the time being this may be a really good way of getting people onto a a level where they might be able to do other things even if they still have symptoms you haven't seen the briefing you're kind of following it very well here darren so i'm going to come in to you and then we're going to follow that that thought concept aaron i'm just going to say darren was reading my mind i was exactly going to say the stuff about the autonomic nervous system and the fact that we've worked with post-viral fatigue syndromes where it wasn't particularly respiratory virus so we weren't particularly coming at it from a respiratory angle but breathing was still very critical not necessarily because people having breathing problems but we've talked about dysfunctional breathing patterns but also the link to heart rate that you know it's so important in terms of controlling heart rate through breathing and then the other little fact i wanted to kind of throw in there from from our field that might also be interesting is we see in sort of problems like me that there's an altered aerobic aerobic anaerobic threshold and that that may well be playing a part in long covered as well so people much more quickly transfer from using oxygen to fuel muscles um and therefore if we try and control the breathing and the heart rate we work at a slower level then we increase staying within those kind of boundaries and limits rather than going into high cardiac function short breathing rates and actually then exacerbating that and that links then into post-exertional symptoms that you see less post-exertional symptoms if people have worked from an oxygen base so i thought that was very well put down but yeah i just thought it'd be interesting to add that in no and you you're right you're touching on the physiology and the physiological effects of some of this more complex multimodal effects we're seeing definitely um which i know there's some research going into rebecca coming down into you and we wanted to comment there yeah and i was i was just going to say along those lines too we are seeing patients in our clinic who are having a raised lactate and slower lactate clearance uh after a six minute walk test as well so you know that fits the pattern and the lovely thing when we're then talking to patients about it is we're able to explain a possible reason why they're feeling these symptoms and i think it it really helps for them to feel like there is you know there's a sort of a pathology or something underlying that that it you know explains why they're feeling as they are and why this is something to be taken seriously and you know dealt with you know in the right way and not you know brushed under the carpet or brushed off thank you natalie coming quick comment because me next questions to you first oh sorry quickly it was just to just to reiterate the the on the research side of what sue and rebecca were just saying the the work well foundation have done in america have done those two-day cardiopulmonary exercise tests in in patients with me just to say if you if you're interested in reading that that second day of testing the anaerobic threshold is reached far lower patients are not clearing the lactic acid they're finding a bigger struggle on the second day and that's explaining possibly post-exertion malaise that sue touched on i'll be quiet for the next question that's the next question so please just continue on that what even is this concept in relation to long cover now darren i know you're really passionate about that maybe even coming to darren and then julie thanks go for it that's that's the question post-exercise why we're seeing it in some uncovered patients and can you just explain the concept a little bit for me or for darren and toby's first natalie thank you um yeah i think this is a i think this is an area that we really need to unpick a lot more i think it's quite challenging area to identify in patients and it can be very confusing and there's not really any particularly great outcome measures to look at potential malaise and i don't know if i mean i'm more i'm kind of interested in sues answer to this question in terms of how assessment how are you identifying pem um because i just think this is a really complex um area so i don't know if you're happy to comment on that sue get in there before darren because otherwise he'll say what i'm going to say so um post-exercise from a technical point of view we just need to be clear that obviously it's post-exertional so what we're looking for is a delayed reaction so obviously there's an impact on energy levels or symptoms directly after exertion so at the time which we would see in things like pots as well you know at the time people may need to lie down they need to recover and the symptoms then may improve from that point with post-exercise we're looking at this delayed reaction so the worst point in the symptoms is not directly on the day it's normally 24 to 48 hours afterwards you've got two subgroups you've got post-exertional fatigue which often comes alongside pain and then you've got post-exertional malaise and we tend to use that when we're seeing more of the flu-like inflammatory based symptoms so people feel described feeling unwell rather than just having no energy and what is thought to happen in post-exertional malaysia such as more of an immune inflammatory reaction and that's why it's delayed because inflammation takes a while to build up so there's some research and evidence around sort of pro-inflammatory cytokines and the body may be having a more significant inflammatory reaction to normal levels of exertion and that's why it builds up and you get that delay but then you get significant symptoms over the next day and i think the idea about assessing it is one asking the questions really going into detail not just about saying well i'm fatigued but when where what gets worse at what points what happens if you do this what happens if you stand up because we really mustn't um ignore sort of tachycardia problems or static intolerance is very very common that people are struggling with gravity so it's asking lots of lots of questions about the detail because that tells you more about how that pattern is emerging so i'll let darren say something on it now come on darren yeah no this has been um a bit of a personal journey for me because i've never heard of it before i experienced it personally um and i don't think that's an unfamiliar story for many physiotherapists actually or other healthcare professionals i don't know that many people have heard of the term post-exertional malaise but also there are other terms that are being used as well so there's post-exertional neuroimmune exhaustion and then also or symptom exacerbation so i don't know which one i prefer i kind of like post-exertion or symptom exacerbation because it explains what it is my symptoms got worse when i exerted myself um and i think what's really interesting is that it's a multitude of different symptoms um it's not just fatigue or exhaustion um people were having different symptoms so for example for me um my brain fog got worse when it was at my worst i had pain in my legs um but i think it's really interesting because i want to come back to two things that was said earlier so there was a mention about carbon dioxide levels and then also about lactate levels and i think what's really interesting is that some of the evidence is coming forward to say that in the context of langkovid i know it's unpublished yet but um reports are suggesting that people are having abnormal lactate production after exertion and people are also having low carbon dioxide so hypocapnia now what the causes of those are we need to identify but like natalie said this work has been done in mecfs and there is so much knowledge that we can translate in different and additional directions and we've got this knowledge out there already and we need to start translating this from different fields i'm only recently learning that apparently post-exertional symptom exacerbation is seen in other populations as well there's an exercise physiologist in canada that has seen this in some subpopulations of cancer i've recently learned that it's also happening in concussion which i'd never heard of before now whether this is true or not i've got no idea but i wonder how much this is happening because what's really important to recognize is it is the cardinal sign of the diagnostic criteria for mecfs and i think that's just something we need to be aware of and um i i think that that therefore creates complexities around this um but as a symptom it's really disabling but surely to have that such that that change in like respiratory effects so the so that the hypocarbonate carbide that you've talked about the lower carb dioxide levels potentially with bicarb changes that has to be then related back to the breathing pattern disorder or symptom does it julie is that is that how it's because the only other rationale is like a metabolic change which is minority yeah we often see and when we're doing uh cpec cardiopulmonary exercise testing up at the institute of sport exercise and health that you know a lot of the time that the exercise uh the fatigue is setting in and the co2 levels are you know are dramatically low and so we you know if you think about someone breathing badly at rest that's potentially just going to get worse when they move around so you know when you're breathing in excess of what your body's doing and that you know you're losing too much carbon dioxide you then get up and move around that's just going to get worse so it has to be part of it has to be contributing and it's not deconditioning so as therapists what are some of the strategies that we can use to treat this patient group and and how can we you know treat patients and and what the strategies that you actually provide or some of the advice that you give to patients in your clinics whoever wants to go first so we very much follow the decondition uh the dysregulation not deconditioning model so with dysregulation what you're looking for is to stabilize homeostasis and kind of those regulatory functions first so it's looking at all the factors and this is again why fatigue is so broad because you've got only a lot of the other symptoms are so broad because you've got so many factors that impact on them so things like we need to address sleep and regulating that we need to learn how to breathe and relax properly and get our heart rate down we need to make sure we're eating at the correct times if our blood sugars aren't very stable and we're only eating when we've got the energy to eat then that would be destabilizing us so it's thinking about all the factors that stabilize your autonomic nervous system how to tolerate gravity gradually how to build up our ability to do that so simple things like fluid intake you know are people drinking enough to have enough blood volume um to support their orthostatic tolerance and do they need exercises or training to actually build those muscles but people often think about exercising a cardiac waist they'll get up and move around whereas maybe they need to do some recumbent exercise that isn't putting that strain on the system so it's learning ways to try and get that stability and going through all the different strategies and making sure that's there before we build so that's what's really important to us is that we make sure people are stable before we then think about how to make graded increases and that whenever you increase you re-stabilize you don't just keep increasing yeah because of the fluctuating nature of the illness so it's all a process of exploring with the person because it's their life and they understand their lives um so it's important that we we work with them to identify all the different factors whether it's emotional social physical cognitive that are destabilizing yeah thanks for that natalie 100 just echo what sue said and in the program that julian and i are running it's absolutely the first step in the process is finding stability and take i think that what we need to understand if we're not used to working in this field is finding stability in itself can take a long time so it's not that this is going to be resolved in a week two weeks three weeks four weeks even finding stability for some of these patients is going to take an awful lot of time and trial and error and then you know having to work like sue said it quite individually because everybody brings so many different things and part of finding stability that we're doing and and julie you might want to comment on this is work around living pattern disorder just to try and again find stability within the breathing and so just to echo what sue was saying judy did you want to come in yeah um absolutely and it's finding stability is something that over the last 10 months has been you know a massive um sort of big part of of my um helping patients and it's something that coming from a background of palmyra rehab like we said at the beginning it was all go go go go exercise tested push push push push through the breathlessness you know this has been a massive turning point for me and natalie's helped me really appreciate um understanding how stability is so important and challenging and like we said earlier you know you know we talk about the boom bust cycle and um we although the um we know that patients present with very different symptoms and for different reasons what natalia found is that actual fact working in groups has been really quite therapeutic because i think often um these um patients have been able to tell their story and others listen and they kind of you know go oh my gosh that's how i feel um and and so going oh you know i did this last week and all i did was you know had a phone call with a friend and this is how i felt and then someone else goes oh gosh that's how i felt and it it really helps to educate the finding stability is so challenging um but what we found is the the group work has facilitated that for a lot of them because they've learned so much from each other um and um you know we the the program that we run we broke a lot of information all the stuff that you said sue and often sometimes we think we possibly do a little bit too much but you know it it keeps coming back to breathe well find stability um rest recover relax you know um and stabilize is definitely the message that we're we're um you know putting out there would anyone else like to come in on that for a final point before i go around everyone or do you think we've covered that nicely i think one of the points darren i'll comment you one the point i want to make is i've been a respiratory physio for 20 years right and i've done all right but this isn't my bag and i don't know and if i got referred a patient that had these complexity problems i wouldn't know what to do and i think that's just one of the reasons i'm so grateful for people to come and share this story with this space because you know we shouldn't presume and know how to treat these patients um and one size doesn't fit all and we need to reach out to the expert groups that are not only here in this space but some of the information was signed posted to and it's okay to say oh my goodness i've got this patient like even rebecca said she's been dealing with post-viral icu patient groups and respiratory patients for years and years but actually there's a lot of learning to be done here in this space so it can actually be very detrimental and dangerous to give the wrong information but also just to not listen to what your patients telling you and what the symptoms are believe what they're saying and then as a therapist acknowledge and say actually hang on i'm gonna need to second you know go through this with someone and get some advice and second opinion um so i just want to make that point and i'm going to come around to everyone for final points but darren coming to you first for any of the comments you're going to make there and just any of your final thoughts yeah so long covered is multi-dimensional episodic and unpredictable so it's somewhat unsurprising to think that finding stability is a challenge because stability is changing uh whether that be because you are getting better or worse um and i think that people living with long covid are desperate to be better just like any other group of people living with chronic health conditions people do want to be better but i don't think people are coming living with long covert are coming to health professionals with them expecting to have the answers because we do not understand the mechanisms or causes of long hovid and so i think that healthcare professionals shouldn't feel like they need to answer what this is or how to manage it because what you can do is you can work with people and develop that therapeutic relationship to actually establish what does and doesn't work together because what people living with long cobid want is to be validated and heard and respected and you can do that by working with people you don't need to tell them that they've got it right or wrong you can just work with them and so you don't have to have the answers to do that you can explore this together and every and actually people living with long covid are the expert patients at the minute because we're learning as much as the healthcare professionals are so we can all learn off each other and there's great opportunities for that so if anything what i would say is work with people and don't feel like you have to have the answer you're on my speed dial aren't you darren you answer the phone like what you want now so julie coming to you please just any final thoughts or comments yeah and possibly just if anyone's sitting there listening to this going oh my gosh i have no idea if i'm breathing properly or not i'd say go to the physiotherapy for bpd website and um there's some videos on there it takes about a minute self-assess get a little idea of how you breathe and then some videos of what normal breathing looks like it's a real eye opener for people so i'd recommend that for everyone thank you sir coming to you and all you might have to disappear where we're saying my goodbyes and final thoughts so thank you i'd actually written down the word validation and darren already said it so i'll go for something else because it is so important and what i would say is these sort of illnesses challenge our medical model where we look for a cause we treat the cause and then we believe we fix the symptoms and i think just because you can't see the cause necessarily on a scan or a blood test doesn't mean there isn't one it doesn't mean that systems themselves aren't affected um and doesn't mean just exactly as dan said that you can't work with that person to actually find ways to improve their symptoms i think that believability and i would say if anybody's interested in dysregulation some of the theories around that certainly from our field and we've got the dysregulation model that we wrote around me on our website so people can look on our yorkshire tea clinic website and our services page there's a link to the dysregulation model thank you rebecca final thoughts comments thank you and so i guess the the the key things would be that uh deacon that deconditioning is not the problem and uh that's you know not going to be the answer and that uh compassion um for the patients and and for themselves that's that's really important as well and and uh i that all sort of the treatment needs to be like individualized you know it's along with what everybody has said you know we've we've tried some heart rate monitoring in some people and you know some people like it a lot of people don't sometimes it adds additional anxiety and other problems you know some diaries have been helpful for our patient groups you know to to map what's going on and to see where the rest is in their week and like darren says it's working with people and it's about um the individual you know the the spectrum of symptoms and the way people present that we see in clinic is phenomenal and every week i feel like i discover a new symptom that somebody has and so i think you know as therapists coming to this you know with an open mind um and collaborating you know with people from different specialties is going to be the best way to find fines and treatments thank you natalie everything everyone said but also just to say that as physios um and ot's whoever comes across these patients is that you know we do have a lot of skills and we do have a lot to offer and i've been really i've been really impressed that sounds it's the wrong word but heartened by physios we've really taken on this challenge and gone this isn't working what i normally do i need to change something and i think that's the whole approach around listening to the patient really trying to understand try things it's it's not working let's do something else and i think as a profession i i don't maybe i'm wrong but i just feel like we're really beginning to get to grips with this and being open and sharing practice and it's just it's just really heartening so i'm i'm i'm really really happy so thank you thank you and big special thanks to my co-chair tonight me i really like this collaboration tonight between the two groups so kalima over to you and your final thoughts yeah thank you so when julie was talking about the breathing patterns i was sitting there just trying to you know feel my chest and think about how i'm breathing actually so we'll actually go and look at that website and and have a look at that but it's really interesting this is such a complex area and such a new area as well and and sharing practice is something that we need to do as well healthcare professionals as well just to make sure that we're meeting the needs of our patients and and listening to our patients as rebecca and everyone else i said on here just to kind of make sure that we they're doing the best for our patients and we're also learning as well and internationally um looking all the evidence base and obviously building evidence base as well moving forward so we can treat our patients better and obviously understand how long covered how it affects people obviously long term you know the next few years as well so not just now but so yeah i think it's really um really interesting to thanks to you thank you for rachel for inviting me well thank you very much everyone now you may be listening to this as part of the before after the long covered um study day that were hosted on the 17th of april but this was a special podcast really just to go into a bit more detail if you like what you heard or got any comments please leave them below on the youtube or podbean page or please reach out to any of the panel members on twitter like i said they all have the twitter twitter handles on here and just leave some nice thoughts comments or what you might like to hear about next really appreciate it and thanks everyone for your time

Channel: Rachael Moses

Views: 14,815

Keywords: #LongCOVID, #AHPLeader, #LongCOVIDPhysio, #LongCOVIDOT, #COVIDFatigue, #COVID19

Id: OKg1XDhoKjY

Length: 59min 9sec (3549 seconds)

Published: Wed Apr 07 2021