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Infectious diseases series: Long Covid | Kate McCann

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Summary

Listen to Dr. Kate McCann in this on-demand session as she gives a background on the Post COVID condition. Get an in depth look at who is most at risk for the syndrome and learn the various theories on what the pathophysiology of this condition might be. Discuss how the working definition of post COVID is a Delphi consensus and the time frame of the condition. Hear insights into the various symptoms and the potential economic impact of long COVID in a population of 5 million people. Plus, learn about the All-Ireland Infectious Disease Cohort running out of Saint Vincent's University Hospital, Dublin, and how you can help. All questions answered and certificates delivered upon completion.
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Description

Please Note: As this event is open to all Medical professionals globally, you can access closed captions here

Joining us today is Kate McCann, Clinical Researcher, St. Vincent's University Hospital/University College Dublin

None of the planners for this educational activity have relevant financial relationship(s) to disclose with ineligible companies whose primary business is producing, marketing, selling, re-selling, or distributing healthcare products used by or on patients.

Dr. McCann, faculty for this educational event, has no relevant financial relationship(s) with ineligible companies to disclose.

Learning objectives

Learning Objectives: 1. Identify a working definition for post-COVID condition. 2. Describe epidemiological trends related to post-COVID syndrome. 3. Describe the range of symptoms associated with post-COVID condition. 4. Explain the theories related to the pathophysiology of post-COVID syndrome. 5. Discuss the scope of an all-Ireland Infectious Disease cohort study and the implications for patient care.
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Computer generated transcript

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The following transcript was generated automatically from the content and has not been checked or corrected manually.

Hello, everyone. It's great to have you. This is gonna be a great course. Today we're gonna learn all about post COVID. Um Firstly, though I have a little poll that I'm gonna pop up because I am totally interested to find out how many of you have actually had COVID. I haven't. Uh So I'm really interested to know. Have you had COVID? So do answer. Ah oh look, there's a few of us that haven't great. Um This is just for my satisfaction. Kate didn't ask me to do this, but I'm just nosy. I just wanted to know anyway, as always pop your questions in the chat. We wanna have lots and lots of questions and at the end of the event, your feedback form will be in your inbox. Once completed, your certificate will be on your meal account and we will forward all the feedback on to Kate afterwards. Ok. So without further ado, I'm gonna pass you over to Kate. Thank you, Kate. Hi. Um So my name is um doctor Kate mccann. I work as a clinical COVID reach researcher in um Saint Vincent's University Hospital and I know a lot of you are from outside of Ireland. So just to kind of put it in perspective for you, this is a major teaching university hospital um based in Dublin. Um And we're connected to something called SR which is the Center for experimental pathogen host research um in conjunction with um many departments in the University of College Dublin here. Um And I'm just gonna give you a background about the experiences because we're gonna be talking about post COVID today. I'm gonna give you a background of how our experience in it um came to be just to let you know, kind of where we're coming from. Um The clinic that we have originally started in May 2020. And the original intention was to look after patients who had been discharged from hospital after surviving COVID-19. Uh within 2 to 3 months, it became evident to us that patients uh weren't getting better and we were getting referrals from occupational health, primary care and community uh COVID hubs with patients who just did not seem to be recovering, especially after mild illnesses that had not required hospitalizations. A dedicated once a week clinic was established in the beginning, we weren't sure about lingering um infectious state. So this was actually done um in a, in a prefab that was rapidly assembled on the grounds of the hospital, but outside the main hospital. Um and now it's evolved into a weekly uh two weekly clinics, one virtual one in person and to put in perspective for um those be outside of Ireland. This is a government funded service. So our patients um are referred to us from another um doctor, either primary care, occupational health and, and the patients do not pay for the services. So that's who we are. Um And now I'm gonna bring you into talking about the patients and our experience. So post COVID condition, you'll hear and use a lot of words. It might be called PAX, post COVID condition, post COVID syndrome, log COVID long haul COVID. All of these terms really um are are talking about the same thing. Um And it's basically a term used to talk about all of the sustained postinfection sequelae. Um It does have an ICD 10 code for those of you who use that internationally and that's existed since September 2020. However, and this is really important. It's gonna be the first step we don't know uh which is gonna be a theme of today. There's no globally standardized or agreed upon definition or set of diagnostic criteria at the moment. And that's really important understanding as we go forward. Um And it and it's very variable. A we there's no phenotype of long COVID can say ah this is long COVID and how much it impacts patients is incredibly variable as well. Some patients note that they're not quite what they were prior to a COVID infection. Other patients, their lives are dramatically impacted. Um And then characterizing is epidemiology. This is very difficult at the moment who are most at risk. We have some ideas, there seems to be some trends but it really isn't established. I think one of the things to just touch on and move away from is we don't, we don't know exactly what it is and we don't know exactly what causes it. It doesn't mean there aren't a lot of theories out there but we just don't have the evidence, you have to say, oh, that's it. Um There is obviously most people have heard about the viral res reservoir theory. Um And there's also theories around immune dysregulation. Um There's some theories about microbiota, there's theories about the dys dysregulation of the clotting pathways. Um and micro clots, there's also um theories around autonomic dysfunction um and or impact on the vagal nerve. Um And there's some evidence out there for all of these. Um But as far as a unified theory thing, uh this is definitely uh the pathophysiology of the post COVID sequelae, we don't have that evidence yet. So everything's kind of in this theoretical who gets lung COVID. And there you'd have to look and say actually anybody there are definitely um reports of long COVID in Children and that's a whole separate area. I'm not a pediatrician, but we know that there are post COVID sequela in Children. Um And if we look at our clinic, we have patients all the way from the youngest that we accept, which is 16 years old. Um all the way to patients um in their, in their ninth decade. However, if we look at epidemiology from the clinics and clinics, we've talked to, um we are looking that it does seem to be more men than women or sorry, more women than men, but there's definitely men in the clinic, um predominantly middle age kind of in the, the 5th, 6th decade of life. However, again, whole spectrum is affected. Um And we do find that patients who had more symptoms at the initial infection. So if we talk about the 1st 14 days of infection, we ask patients the number of symptoms or severity of their symptoms, the patients who are more unwell, um tend to tend to complain later of having post COVID sequelae that said it is predominantly people with mild illness. Um As far as is there anything that shows that you won't get long COVID? Uh Today? The only thing, the only thing we have shown is that if you don't get COVID um as far as things like vaccination status um or, or, you know, masking, yes, if you don't get COVID, that's the only way to not get long COVID is the only thing we've, we've seen the connection to um the working definition is a Delphi consensus. Um This is put out in October 2021 and quite honestly, very little has progressed from there, even minor revisions, minor updates, there's been very little progress about finding the condition since this Delphi consensus. Um And I think the most important thing is to really is the timeframe. When we look at COVID-19, we really don't talk about this post COVID condition until 12 weeks. We know if we follow patients out from their initial infection um that, that a vast majority will recover by this three month mark. Um But in fact, when we get the referrals for people who are concerned about long COVID at six or eight weeks, we actually don't bring them into clinic. Uh We usually triage them the phone call. Um If there's nothing really serious going on, we call them again around week 13 and a vast majority will have recovered by then. So we, so the timeframe is a really important thing from this definition to take away the symptoms. So there is a vast vast uh amount of symptoms that have been attributed to the post COVID condition. Um uh persistent change in taste and smell, anxiety change in vision, uh chest pains, um A term brain fog which if you're not a native English speaker that might need some ex explaining brain fog is used by native English speakers to kind of mean a cognitive dysfunction. They have trouble concentrating trouble remembering sometimes trouble finding the word they wanna speak. Um People who were good at math might find themselves struggling a little bit to do uh Math that they would have found easier. And so that they turned this whole collection of kind of cognitive, mild cognitive dysfunctions, brain fog, um, dizziness, fatigue. Uh, we do see some patients who have, uh, recurrent fevers. Headache is a major one. muscle pain, joint pain, um, numbness or tingling, um, shortness of breath, disordered sleep, um, sensations of the heart racing or palpitations, um, tinnitus or, uh, ringing in the ears or change in hearing. And those are just a few, I've filled out some of the, the more common ones that we would see in our clinic and across other clinics. However, it's really important to note that over 200 symptoms at this point have been linked to a now whether or not as we go on, it's an emerging disease, whether or not some of this will make more sense later on at the moment, it makes, you know, coming up with a, you know, what does this disease look like? It makes it very, very difficult. And we did some work and this is from, uh, on the papers that we've published on phenotyping. We tried clustering the symptoms to see if we could make, if we could create distinct phenotypes. A couple of other, um, clinics have done this similar. Um, there does seem to be some distinct clustering of symptoms that go together. Um, but it, it hasn't really been something that we could say. Well, that's, that it makes any kind of diagnostic sense or that it ha that it leads us to um for example, a more specific treatment or intervention pathway, the incidence. And because we don't have a defined diagnostic criteria and at the moment, it does make accurate epidemiology a little bit different uh difficult, we are estimating um globally. That is, that is about 8 to 20%. That's a huge range um of patients who have COVID-19 may experience lingering symptoms. Um And just the Irish contacts, I know most of you are outside of Ireland um in a population of just over 5 million people. Um that if we had even 8% that's over 100,000 people that would be suffering with long term effects from COVID-19. Um from an economic point of view, from a health, economic point of view, from a health care burden point of view. Um This, this is this would raise serious concern that we have people who will be suffering with health complications. Um down the line for the next 2 to 3 years after the last case of COVID-19 and we still have COVID-19. There's so much that here that we just don't know, we don't know how well vaccines protect. Uh We don't know what causes post COVID condition. We don't know what the most effective is. We don't know how long these symptoms will last. And of course, in the medicine, we're always talking about that five year, 10 year follow up data. Which from a disease that only start in 2020 we obviously don't have. Um I'll talk a little bit about what we're doing. Um Is the all-ireland Infectious Disease cohort. This is led by the P I who's Professor Patty Mellon, who's a consultant Infectious Diseases here. Uh We have been enrolling patients in a longitudinal study um since March 2020. Um So, what I'm gonna talk about is our approach to the post COVID patient. I'm gonna explain to you how we do it and I have to leave the evidence base there because the uh the standard clinical guidelines or this is best practice or here's our best evidence. It doesn't exist yet. And this makes long COVID much more challenging than almost everything else in medicine. We all know we need the evidence. We all know we need our standard guidelines. We all know we need our, what we know works and we just don't have it, but I am gonna share with you how we do it. Um Now, whether or not I would come back in five years and say this is the best approach, I don't know. Um But the moment this is based on our clinical experience research to date data from other centers. This is our approach. I one of the things that we find is to start is a good history. We have structured our clinic so that intake in person um first appointments uh patients have at least 30 minutes with the physician. And that means that the history is thorough. Um, we talk about past medical history. We wanna know exactly what their comorbidities were before COVID. Uh, medications. A lot of times patients come in on a lot of medications worth sorting out. What was the medications like before COVID? What were they like after COVID? Many patients are on internal alternative medicine. So, we do ask specifically about vitamins, herbals and supplements. Um and the social history. Um We take very specific history, especially work history. Many of our patients are off work. We wanted specific history about uh how long they've been off work. We use a whole person approach. Um We ask our patients before they come into clinic, uh we post them out um scoring to do at home and this is because many of our patients have fatigue, many of our patients have poor concentration. So sending these out uh a couple of weeks beforehand, gives patients the opportunity to do this at their pace under no pressure. Um We ask them to do an SF 36. Uh we asked them to do a psychological screen that's been developed by our clinical psychologist. It includes the G A D2 and PHQ two screens. We also use the DePaul symptom questionnaire and we also use a modified COVID-19 Yorkshire rehabilitation screen. Um All of those are available um to download online. Um Most of you will be familiar with them from other contexts and, and we get that helps score. The patients also gives us an idea of how to measure their progress um for symptoms that are very difficult to measure objectively in a clinical setting such as fatigue. Uh When we're talking about the COVID history, we really wanna know the date that they were COVID with CO diagnosed with COVID-19. Um We also track all subsequent reinfections. Um We take a symptom list, So we take two symptom lists separately. We asked them uh to identify the symptoms they had in the 1st 14 days. Um And then we ask them the persistent symptoms that have brought them to that clinic. Um We have many patients do have brain fog, poor concentration. So we do have a set list of the most common symptoms that we see in our clinics that we use to cure them. Um And, and then of course, we want to score using the who guide um how severe their COVID-19 was. It will be worth noting that the vast vast majority of patients um had what the who classifies mild COVID meaning they needed. No uh no hospitalization, no oxygen, no medical intervention at time of the acute infection. Um And then we record the vaccine status. This is really important because this is the one, a lot of times the medicine we hear shortness of breath, we hear fatigue and we're, we're kind of jumping down the heart and lung exam. But this is why we don't wanna skip, we don't wanna skip the social lifestyle history because this is gonna give you a lot of information. Um, it's very helpful to ask the patients what can, what can they not do now if they could pre COVID? Um, and then, especially with the occupational history, it's very worth asking, what do they do? Um, how anxious are they to return? And, and then to, to get an idea of the disease impact, we always ask, what's the reason you're not going back to work? Is it the fatigue? Is it the brain fog? Um One patient, it was the shortness of breath because they had to bike to work, for example, um being aware that obviously socioeconomic um determinants of health apply to COVID-19. The same were to any other disease. So knowing the living situation, patients who are at risk, homeless domestic abuse, we also ask specifically about alcohol and substance abuse. A study from the mater hospital, which is one of the sister hospitals in Dublin who is also in the study with us. Um found that up to 25% of their long COVID cohort had um had been using substances in a way to self medicate some of their symptoms. Um And then asking about sleep, it's not something that we necessarily routinely include in standard medical history questionnaire, but it is worth asking because many COVID patients uh do have disordered sleep. So taking a sleep history is very, very important. Um We also find, for some reason, we have found a great amount of obstructive sleep apnea in our clinic, which obviously is gonna contribute to symptoms such as uh fatigue and brain fog. So if indicated for the patient completing a stop bang screen can guide further investigation, physical examination. This one's really important and it, we really showed us how important it was in through 2020 to early 2022. When due to uh the pandemic, many patients who were attending their GP primary care via tele medicine. Um So it would not be uncommon for a period when patients arrived in our clinic for us to be the first doctors to put a hand on the patient. Um So a targeted uh and thorough physical examination is really indicated here. And mm you know, for example, start with the the respiratory uh good auscultation, the chest, listening for the wheeze um hoarseness, speech, respiratory rate. Uh I think effect is very important. Patients may come in flattened, anxious or tearful. Um In neurology, we have picked up patients who have um altered gait, nystagmus, dysmetria. Uh when patients complain of joint or muscle aches and pains, it's worth doing a rheumatological examination, looking for things such as nodules, swollen joints or tender points. Uh many patients complain of palpitations. So um checking pulse, looking for tachycardia, um feeling for arrhythmias, checking for um pitting edema, uh peripherally. Uh we found angular stomatitis, alopecia, goiter and acanthosis nigricans associated with um insulin resistance and elevated blood glucose. Um We've all f we found all of this um presenting to the clinic. Um We standard uh we do ask patients um to get a height and weight. Um I think one of most the highest yield I could say to anybody who's in a resource limited setting at the moment would be get a good protocol for, for screening for pots. You don't need a tilt table to do this. Um We screen all our patients for pots since summer 2020 that's a postural orthostatic tachycardia syndrome. So, what we do is we get our patients to lay down for a full five minutes and yes, it's very boring for them. We get them to lay down with the nurse for a full five minutes. Um We get a resting heart rate and blood BP. We ask them to stand. We repeat those observations at one minute, three minute and five minute and we use the accepted um criteria that a heart rate that jumps by 30 BPM. Um and a sustained elevation at five minutes um is consistent with a diagnosis of pots. Um ECG S can, can show more uh information, especially if we're talking about postviral sinus tachycardias. Um And then routine bloods, we do have a phlebotomist that is in our clinic with us to help with flo patient flow on the day. Um, and we do have routine bloods that said we also tend to order bloods where it's indicated, but we don't wanna miss anything. For example, we're really looking for postviral complications there. So for example, check, um, if your patient is tired all the time, check the thyroid function, make sure they don't have uh, postviral, uh, low thyroid from a postviral thyroiditis that was not picked up. For example, making sure that, um, we don't have new onset diabetes, which we found these are things that we're really looking for in the blood. So we're looking for other things rather than any blood test that says, ah, you have lung COVID. Um, the self assessment scores a again, those are something that we're gonna look at with the patient. Um, if the G A D2 or PHQ two are positive indicating the patient has low mood or anxiety, this is something that we like to bring up with the patient and discuss whether or not, um, a move to counseling or, or clinical psychology may be indicated as part of their treatment. Um, we try to keep the investigations targeted, um, where patients have symptoms suggestive of new asthma, COPD, shortness of breath, persistent cough, pulmonary function tests can be helpful, uh, for patients who have, um, palpitations, um, chest pain, cardiac MRI or echo may be indicated. Holter may be indicated we're looking for, um, uh, tachycardia and palpitations. Uh, new hypertension. We pick up a lot of that in clinic um and a 24 hour ambulatory BP monitor may give a better idea of whether or not uh differentiating classic white coat hypertension from real hypertension. Um The reality is we don't have definitive guidelines to know when or how it is safe to ignore worrying symptoms in a post COVID patient. So at the moment and uh you have to have an abundance of caution that if a patient is coming in with um new cough or hoarseness after COVID, but they do have a background of smoking saying, well, it's probably due to COVID, we're going to work up that patient as you would any smoker with a new hoarseness, for example. Um And, and in time when we have a better understanding of the disease, we might be able to have a more streamlined approach at the moment. Ours is in abundance of caution. If there's any slide that anybody could take away from today, it's this one, all of those diagnosis listed have been referred to Long COVID Clinic. Um It's important to remember among everything else that at the moment, long COVID is a diagnosis of exclusion, which means that there's not a reasonable explanation for the patient's symptoms. Um So we have found lupus rheumatoid arthritis. We have found, uh we found we found a pheochromocytoma, lots of hypothyroidism, new diabetes, diabetes is really worth looking for. There is a phenomena which I think maybe you'll be familiar with called nod a new onset diabetes. After COVID. Um the actual pathophysiology of that is is still debated. Um How much of that is in patients who had preexisting risk factors is also not fully understood. Um but it is worth screening for um, exacerbations of any underlying condition. Are there including CCF migraine, especially a change in migraine. So, patients who have a history of migraine but was under control, it now is changed in character. Um After COVID, um substance misuse is something that patients are sometimes slow to talk about but comes out, sometimes it takes a third appointment for that really comes out. Uh multiple sclerosis, definitely so much asthma, so much postviral asthma. Um and many doctors are, are reluctant to trial an inhaler before they see us worried about the causes post COVID because it's the disease, very little is known about. They're very reluctant to trial treatments. Um So we see a lot of asthma. Um We do see a lot of a lot of psych um a psychological impact from the disease. So we do see severe anxiety. We've seen a few patients with severe agoraphobia. It's been difficult for them even to attend the clinic, very, very difficult for them to attend the clinic. And uh very often they have a few uh multiple uh virtual sessions. Um New diagnosis of COPD in patients with risk factors, fibromyalgia, obstructive sleep apnea, myasthenia gravis, and again, a large overlap in menopause um or patients have both long COVID and menopause. Um but neither has been addressed. So, by addressing menopause and identifying it sometimes that can put patients um you know, more on the road to rebuild patient. One thing we don't know is um we like to joke about amongst ourselves about it being an un masker, which means patients who had borderline health conditions, who had multiple risk factors who had a mild condition all sudden, they have COVID-19. And it just seems that this just tips the balance. Um And what that role is, again, this is kind of an interesting area of research. What is the role of COVID in just general health deterioration? We can imagine that like with all viruses, it's not gonna do anything good. Um But we do know that patients, for example, that in our pa uh that are overrepresented, we know as the older you get the higher risks you have seem to have um patients with elevated BMIs seem to be overrepresented in the clinic. Um Patients with f strong family histories of autoimmune disease often seem to be a bit overrepresented in the clinic. But again, that evidence and demographics are outstanding. Um So when we look at the clinic, this would be kind of a picture of what's referred to our Long COVID clinic. So we have our postviral complications, we have exacerbations of underlying conditions, we have completely unrelated new diagnoses. Um And I think that's really important is because it's a lot of times out of timeline to patient, it comes in and it was on their timeline for a new diagnosis that year and it happened to get COVID. And we have a question whether in uh in some of these cases, whether they're even related events just because we're dealing with the global pandemic where everybody seems to have had COVID. Um So where we're really kind of focused, our next steps is in this group. Um And there's the reason they're overlapping there is we have patients with post COVID condition, which means there's a no reasonable explanation for their symptoms except as post COVID sequelae after a reasonable history, examination and investigation. Um And then we also have secondary deconditioning where patients with post COVID are simply terrified to move, especially because of palpitations or fatigue. And we also worry about the phenomena deconditioning in those patients. Um And so we're gonna move on a treatment but we just have to say full stop. There's insufficient evidence to suggest an optimal treatment for post COVID condition. Um And that is a challenge. There are so many challenges here. I think you're seeing a theme here. Um But that's really important to know that there's nothing to say hot. This is exactly what works. Absolutely not. Um So what do we do next to these patients? So we know the up post COVID condition, we've reasonably excluded that anything else is going on that would be more treatable. Um So we, we do have a multidisciplinary approach. Um Clinical psychology can be helpful, dietician physiotherapy. I'm gonna say energy management strategies. So, um evidence-based fatigue management strategies have been used in other conditions. This can be led by occupational therapy or physiotherapy. Um We use lifestyle medicine approaches. Um And I, I'm talking about evidence-based lifestyle medicine. II, know that term is used very, very loosely. We are talking about the lifestyle medicine as medical specialty with established evidence-based guidelines. Um And that would be in terms of sleep, uh substance uh abuse cessation, positive psychology approaches, medical management. Um Some patients benefit from trials of amitriptyline, especially for things for atypical chest pain, uh atypical headaches. Um some patients uh benefit from SSRI use especially in context of anxiety and depression. Um Pro Carlo or uh beta blockers may be helpful for a tachycardia tachycardias. Uh definitely trialing inhalers for shortness of breath wheeze or cough or symptoms consistent with clinical asthma and anti-inflammatories may be worth trialing for persistent joint or muscle pain. Um But then we come down to the after the appropriate referral for a specialist opinion is sometimes needed. If you, if we are worried about a cardiac complication, if you are worried about um a respiratory complication, getting patients into those specialists who work with us is equally important. Uh patients with very problematic migraines or headaches and we will get them into a neurology that headache clinic, for example. Um But lastly the the box, last box there in green, the goal is to clear a patient is to participate in rehabilitation. And that's really where we wanna get the patient optimized. There's no point sending a patient for uh rehabilitation. For example, if you haven't dealt with um sleep disturbance, um they're too tired from not sleeping, they're not gonna be able to engage in rehabilitation. Um So everything's done to try to get a patient to the point where they're ready to engage in rehabilitation and the rehabilitation will include fatigue management strategies. So this is internal data. This was uh we did a few six-week physical rehabilitation programs. This was led primarily by our chart of physiotherapists. It included input from dietetics as well as clinical psychology. Um on the whole, the patients were much better at the end and a and, and a and a large percentage of them were able to return to work. Um The effect of the conditioning is important here. We don't know, but we do know that this is important. We have patients for because of the tachycardia because of the fatigue, they really just start resting, resting. Um And these can be relatively young patients and they become effectively sedentary, they do nothing. They wake up in the morning, they sit on a couch, they do very little in regards to their activities of daily living. Um and the, and this overall effect, something that we suspect has an impact on, on recovery and we don't have the evidence on that. But we know from just years of being, uh, being, you know, in medicine, I think anyone out here will know that the first thing pa patients are told to do in hospital after recovery from illness or after surgery is to get out of that bed. It's to move, it's to get active again. We have, we all are familiar with on the wards with uh the roles of physiotherapists and nurses of occupational therapists, of everyone, getting patients out of the bed and moving. Um and when that's not happening in the home environment, we can't imagine that it's that it's gonna have a positive impact at all on recovery. And again, there's insufficient evidence as much as we have found that this approach does help some patients, we can't sit there and say this is it, this is definitely how we should approach it. Uh We know that there's a, there's a fundamental role for the MDT um as well as other inputs as needed. But we just don't say, look, this is definitely gonna work for your patient prognosis is something that I am asked about a lot. Um often in a medical legal sense, we receive a lot of correspondence from patients um pension funds, health insurance, occupational health and wanted to know when they're gonna get better. The simple answer is unknown. It is worth noting and I do tell patients this cause I think hope is important. I do have patients get better. Um Sometimes this week, sometimes this month, sometimes it's almost two years. Um But we do have patients. I ask all my patients, especially patients who have volunteered to be at our research that if they feel better and they don't need our clinic anymore. Always let me know. Um so that we do our tracking that there is recovery um out there and patients do return to their or baseline release to all of their activities of life without uh limitation. Um But getting a picture of how long that is an average, we don't have that yet. The future directions that you know, that we have to go on as a as a global community is gonna be. We don't know what causes it. We don't know what, how to treat it. Um We don't know how long these symptoms are gonna last. We really don't know long term health consequences, which is an entire another discussion of what are the health impacts on these patients? Five years, 10 years, 20 years down the line. Um But what we do know is at the moment, it's not a single entity, there's not a picture, a single snapshot. I say this is what long COVID looks like. Um So it still needs a personalized approach. We need to consider each patient as an individual at the moment. There is a fundamental need to exclude other medical conditions before we assign a patient. Um long COVID. Um and it's a very difficult balance cause we really do wanna protect patients from unnecessary and justified investigations, more tests for the sake of tests. We also want to um prevent patients from being exposed to unproven or potentially harmful and expensive treatments. So again, we don't know, pathophysiology criteria, actual incidence, risk factors, optimal treatment, overall prognosis. Um And I think the fact that we have e evidence kind of pointing in different directions um at the moment is, is really a challenge. This is a challenge for patients who are very frustrated. This is a challenge for clinicians. This is even a challenge for allied health professionals. Um It is, there's a lot of reluctance among allied health professionals to come work in clinics with us because they don't have those lovely guidelines and that lovely evidence base that we are trained to rely on as physicians for good reason. I think it's worth talking about long COVID cures. Um because this is a discussion that we actively have with our patients. When patients feel that there are no good treatment options for them, they do feel desperate and they will try anything to try anything. So we do open discussions with our patients to let them know that we are not going to judge them for that. Um And that if they want to discuss the risk and benefit with us, we're unbiased. Um again, we're, uh, we're, uh, this is a, you know, this is a government-funded health service, so we're not looking for business. We're very, very unbiased. If patients want to discuss, um, something you've seen on the internet or something they want to try. Um, I have patients who bring a constantly uh hyperbaric oxygen therapy in short. We don't know if that works. Um, however, there is a fantastic trial going on right now in the Karolinska Institute uh called Hot Local. I encourage you if you're interested in that to, to follow that study as that unfolds. Um but the short term um updates they released so far, don't show any promise for this at the moment. Um Supplements, there are so many supplements being marketed to these patients and we do stick to a strict evidence base where that we prescribe supplements in line with, with current evidence based medicine. So if there is an iron or B12 deficiency, yes. Um vitamin D supplementation as recommended in Ireland. Yes. Um but no supplement preparations. Um low dose Naltrexone is marketed a lot to patients. Um There's no, there's been no good evidence and no randomized controlled trial yet that this has a role. Metformin is a fascinating area. I think this one has personally, I think this one has a lot of interest in that. Um We do are starting to see this nod a the new onset diabetes after COVID. So associated phenomena such as increase in insulin resistant resistance, uh high insulin levels, prediabetes. Um So Metformin in, in its established role of treating those conditions may have a role here but no randomized controlled trial in its treatment of Long COVID specifically has been done um evidence-based symptom management. And we have a lot of patients who are given an varying ad um exercise advice from one end which is don't move at all. Absolutely not at all. The other extreme is you need to exercise your way out of long COVID. Um And at the moment, we would stay in the middle with the evidence base of fatigue management from other conditions, which is the um accepted planned pace and prioritize approach to patients. Um And then there are multiple marketed treatments out there for patients. One, some of which have higher harm than others. We have had patients come back from abroad, haven't been given plasmapheresis or have been put on prolonged and high dose anticoagulation therapies in absence of any evidence of A VT E or coagulation disorder. Um I think if we take away anything from today, it's that if you practice good medicine, you can't go far wrong. To be honest, if you take your time, take a really detailed history, um a detailed physical examination and target investigations and you won't go far wrong if you're looking after the patient and putting the pa and putting the patient at the center of what you're doing. I think if you keep the frame of mind that the diagnosis of exclusion is a really good way to reduce harm. Um, because if patients have a alternative diagnosis that explains her symptoms, that's missed, they've missed the ability to have that treated. Um, educating patients who have been newly infected on the expected recovery time of 12 weeks is really important. Um, patients who panic at 4 to 6 weeks out thinking they should have been recovered can be very reassuring. Just tell patients, look, give yourself that 12 weeks. Um That said if patients are presenting with postviral complications, the same complications we'd see, for example, after influenza. So, exacerbations of asthma, my um myocarditis or pericarditis, those should not be dismissed either, they should be treated as they present um encourage patients who do do their own research to discuss it with you. Be open with that. Um And this is gonna ha go a long way to preventing potential harm. That line of communication is something we have found so impo important in the clinic. Many, many patients do report back to us that just feeling hurt, feeling, listened to, feeling, believed. Um because dismissing on COVID as an actual phenomena is also out there. So they're in a clinic where medical professionals are saying, look, we believe you, we support you, we may not have the answers, but we're definitely gonna work with you. Um And I think the other thing is to know how challenging this is um this is challenging for doctors. It's challenging for allied health, it's really challenging for patients. Um um So I think all of you will be familiar with that, that obviously a lot of research going on. So if you're not really into long COVID, but you want to take a few things to follow um the recovery studies which are in the America, these are led by the NIH S, they're focusing on about five main area areas. They are looking at neurovita autonomic sleep. So basically, they're looking at all of the aspects of it and they're breaking up multiple, multiple studies. And there's an entire website dedicated to the studies that are going on. They are randomized controlled trials of various interventions. They're also doing longitudinal studies to get a better idea of long term effects. It's a huge project. Uh Lo is my favorite. That's the one the Karolinska Institute looking at the hyperbaric oxygen. Um And then again, in nature, just in the last six weeks, we've seen a little bit of the preliminary work on immuno profiling, which is starting to shed a little more light on what might be going on. Um As far as the pathophysiology of Long COVID. Um And those are my favorite directions at the moment that, that I think um work is going. Um And then I think um I, I'm just gonna open this up really, really early to questions and if anybody has any, thank you so much. That was really, wow. It's really interesting. Like I said, at the beginning, I've not had COVID. So, but it's, it was interesting what you said about, um, um, other symptoms can be ma the symptoms can be masking something else. It might not be long COVID. So, I think from what you've said, it's really key to actually listen and tick off those symptoms. That could be something else, like you said. Um, er, long COVID was uh more in middle aged women who potentially it could also be menopause, perimenopause and that kind of thing, which is of another big discussion which isn't discussed much. Uh uh, you know, so it's just really interesting to see that actually, it really is key that the health care professionals actually listen and, and sort of drill down, you know, to what, what it is. So I suppose there is a lot of maybe misdiagnosis or, you know, instead of just shoving people off. Oh, it's this actually listening like, oh, it could be, let's try this, that and the other. Yeah. And the, and the mistake is on both sides though, that's, that's one thing I was gonna say, it's not just doctors saying, hey, look, it's a long cold but I don't know what to do. We also have that phenomena we've seen throughout the pandemic of Doctor Google. So there are many patients who self identify as long COVID. Yeah. Um, and this is the challenge as a position. They walk in, they sit down front and they say I have long COVID doctor, they don't want to talk about anything else. Um, and so it, it comes from both sides. Yeah. It, it, so this, this, what I want to say is equal opportunity. Both patients and doctors can make the error of jumping to the conclusion. Yeah. Yeah. Yeah. Cos people do you know? Yes, you're right. Doctor Google. He, he's everyone's friend and you know, it's just like, oh, I could have that and before you know, it, you really, really poorly, aren't you? And, and also I think you then present those symptoms when you go to the doctors because you've read those symptoms and you discount maybe the other symptoms, you maybe have 10 symptoms, but you can see that long COVID has five of them. So you present those to the doctor and say, well, these are my, these are my five symptoms. Actually, you looked on Google with 10 symptoms. But you know, because long COVID has the five of them. That's where you go to. Yeah, very interesting. Um, we have a very quiet audience today. Come on people. Where are your questions? Normally this is full of questions. They love asking questions. So, um I'm not sure where they are and I'm hoping they're not relying on me to ask any medical questions because it's not gonna happen. So I'll, I'll ask about research obviously is every country doing their own research. Um And how do you communicate your research together to progress? So that, that's an excellent question. So um there are collab, there are multisite collaborations um And there are countries who are collaborating together, there are um countries doing their own and there's a mix of that collaboration. So um we would collaborate in um uh um every, every way possible. So one is obviously a very formal way. Yes, we write up our research and make it pretty and get it published. Um We present to um as many relevant meetings as possible, both virtually and in person. Um And then we also do informal. Uh I have a number of co of people that I reached out to. Um and I know a number of colleagues in this during the early days of the pandemic, you saw somebody talking on Twitter um about their research. You're like, wow, that's really interesting, reach out to them. Um So I for a long time, I had conversations for two years with Cleveland, just the director of the Center over in Cleveland, totally informally. Um We just bounced ideas off each other's heads when we didn't know where we were going. So there's both this really formal and informal um collaboration which I found um really fascinating to be part of last three years. So you're happy to share research, you're happy for the greater good, you're happy to share your research findings. I'm assuming. And yes, I'm very happy to, to and I do stick to what I do. Um, I, so there, what is the efficacy of Paxlovid is preventing severe COVID disease? I have to be honest that I don't research in that area so I can't shed any more light beyond the, the official, um, the official line on that. And we don't use Paxlovid in our clinic. And so I don't have any experience by using the drug. Um I see patients and it's a drug used in the treatment. Uh It's antiviral used in the treatment of COVID, but I have no, no clinical experience using it. I don't um do in hospital COVID. Um Since 2020. OK. Does anyone else have any questions? I have to give them a chance to, to type them out? There we go. It does sound a lot like fibromyalgia. Yes. Yes, it does. And yes, the overlap is difficult. Um Most of the time if you score the uh the fibromyalgia criteria using things like WPI or things like that and the overlap is huge and it is very, very difficult. We tend to work with rheumatology. If we feel patient really does have fibromyalgia, then we ask for a rheumatology, second opinion. Um I it is challenging. You're, you're very right. It, it, the overlap of fibromyalgia is very, very um is, is a lot. That's great. Anyone else have any questions? Is that waiting? And probably of having long COVID and COVID vaccinated versus non vaccinated patients, the severity of symptoms differed in the two. So that's again, we don't have the evidence for me to say, uh we know the reality is is that we don't have the details yet on whether patients are COVID vaccinated versus non vaccinated long haul. COVID. The problem with collecting that data at the moment is the huge range of variability, for example, um It's not as simple anymore as whether someone's been vaccinated or not vaccinated. It's also the timeframe. Um It's also the variant. Um and it's a and when we look at all of the variables there, it makes the picture very, very muddy. For example, if someone got a COVID-19 vaccine in early 2021 but then contracted COVID in January 2023 it is now complaining of long COVID. It's different than someone, for example, who con uh contracted COVID-19 vaccinated in January 2021 contracted COVID-19 in June 2021 is complaining on COVID from July 2021 and you know, from a, from a immunology point of view. So the details there are really muddy. Um It's something that we're tracking. This is one of the reasons in longitudinal study. Uh I record whether patients are vaccinated, I just record record whether they're vaccinated. I record what vaccine they got. So we include 2021 vaccines. We all remember those were astrazeneca Pfizer J and J now we've updated data and I say not only are they getting, for example, like pfizer or Novavax now, but if they're getting the, the Pfizer vaccine, what uh which Pfizer vaccine they're getting? Which um generation of it? Like, for example, I just got my COVID vaccine this week. Um And I got the one that covers for, you know, X BB variant and this makes it really, really difficult. Um And this is, we're talking about the five year and 10 year data I think is actually gonna be needed to, to answer those questions with significance. Um The reality where I think vaccines make a difference for long COVID is the actual obvious which gets lost in the data, which is if it prevents you from getting COVID, he won't get one COVID. Uh But we know the efficacy in preventing disease is much, much less in preventing severity. So if a, if a patient has 2 to 3 episodes of COVID infection, how to divide post COVID syndrome, it's the first. So yeah, it depends on when their symptoms start. So generally speaking, patients, patients, we would say it should start. It's after the three months rather than within. So we do know that there's a phenomenon occasionally where patients have COVID seem to recover, they feel fine. And then a couple of months later, they actually feel a little unwell. And that's one of the spectrums of long COVID as well. One of the most important things we've noted is that patients who get reinfected seem to have a setback on recovery. Um But we will, but we basically say that if you've had COVID and you have long COVID, we don't, we just record your reinfections. Um We do re record as a setback in symptoms. We notice that we, one thing we tell our patients, there's one thing we can advise them long COVID is not to get COVID again, they can take anything to do. Don't get COVID again. Um Is there evidence of vaccinated people without history of infection having the same injury? Uh That's vaccine injury. I don't research in vaccine injury. So this stick to what I research in. Um if a patient has recurrent COVID infection, how long to define long COVID syndrome. Um We, we simply, we simply say it's a recurrent COVID infection. It just depends. So we have patients who maybe had COVID recovered fine the first time, the second time they got it, then they've had lingering symptoms. So we, we basically say that it's that it's three months after, but three months really isn't a how long out it is. It's more to we talk about the diagnosis of early. So if you have an infection, it's not long COVID at four or six weeks, you're still in a pa period of recovery and most people will recover. It's just how long afterwards. We don't know how long if we, that's, it's an open question, it just goes on and on. As far as we know, we do have patients that we have been, we still are following from early 2020. And is that what you said you had a slide that said about 12 weeks to give yourself 12 weeks to recover yourself? 12 weeks. Yeah. So when we talk about that three months, it's not a definition of, you know, if it's after this or before this, it's really to give patients that scope of saying, um this is how long it may take you to recover. Um, because patients panic, they're still unwell four weeks after they're still on. We, well, six weeks after they're panicking, I've got long COVID because let's be honest, there is this fear of this disease. It's unknown. We don't know what it is, we don't know how to treat it. So giving these patients the reassurance that give yourself the 12 weeks. We know statistically that a huge portion of people who aren't quite right at four or six weeks. If we get to week 13, there seems to, if that's when I check in with them, it's week 13. If I've got an early referral and I find a gra vast majority say actually I'm doing much better now. Um And that should I find that part, giving patients hope and reassurance in those early days. I think it is really, really important. Yeah, I think it's good to put a time scale. On it, isn't it? Say look, leave it, come back to me in 12 weeks time. Leave it for now. I think that's really good and really helpful for a patient. Not with a medical background to know. Ok, I just need to be give myself some grace and just say, look, I just need to have for a bit longer and it's just taking me a little bit longer to get over things. So, yeah, that's really, really helpful. Does anyone else have any questions? Put them in the chat? I've got another question for you. What would be um So historically, what would be a previous um virus that would have had such a big impact? I know that's not your area but like historically, what, you know, what we looking at the Spanish influenza or you're absolutely, you're absolutely right. So if we go back to the, the, the influenza epidemics that, that, that kind of were, you know, sort of 1918, 1919. Um you're absolutely right. Those, that is the, that is absolutely. Um when I started researching in 2020 that is actually where I went, I went back to papers from the that influenza epidemic or pandemic and, and looked back and um nothing changed and we learned nothing because lockdowns and masking were found to be very effective. Um And people were in the streets protesting about it then. So in 100 years, we learned nothing as a human race um we also did II was really interested about the neurological complications very early on. We started looking for them quite early because of the phenomena that we noticed after the influenza. And I can talk about this for age, about um a disease that no one of not of any of us has ever seen in, in our practice because of our age is encephalitis lethargica. Um And that was a in that was a neurological um sequelae that was only ever seen after that influenza pandemic. And our survivors of that influenza pandemic disappeared, we never saw that condition again. So while we don't have the, we obviously don't have the DNA, the RNA, the immunology, the, you know, things that we would have had it kind of linked those two. When we look at their relationship in their temporal relationship, it's very suspicious that those two things are related and there's a lot of interest in that area. Um And that's where I started when I started looking at my approach in 2020 to the autonomic dysfunction area. Um any a that appears to improve cognitive and symptoms long COVID. So a couple of things that I would say for patients who have a lot of brain fog is one. like the approach is, first of all, as sleep is everything, a lot of patients aren't sleeping. If you don't sleep, you can't think so, careful sleep history and do everything your body power to fix sleep. Uh um The second is um check for hyperventilation syndrome. Many patients with autonomic dysfunction um are hypocapnic. I actually use a um a capnographer uh or a, a pulse oximeter where that measures um entitle um entitled CO2 in my clinic. I'll get patients to do a short hyperventilation provocation test occasionally or I'll actually just pop it. I actually pop it on them. I can hear patients with increased respiratory rates sitting in clinic. Um So patients with autonomic dysfunction often are a little bit hypocapnic that also can brain fog. Um also insulin resistance and diabetes. Um So once we've sure there's no other reason for brain fog. No. Um realizing that anxiety and depression are also associated with brain fog. Uh We do use CBT. Uh we find that's very good for patients that are anxiety, depression, problem, sleeping. The area of interest there is research that, that um using a drug that's been used in AD HD. Um guanosine um has been tr has been, there was a pilot done in the US. Um They use that with N AC. I'm not really sure of the role of N AC in there, but the use of guanosine is very interesting. Um The, the it was a small pilot though and their recommendation at the end was that this needed to be replicated in a, you know, double blind placebo controlled or antibodies trial um which has not been done yet. Brilliant. I think that's us. I don't see any more questions popping up. So I'm gonna say goodbye to our delegates. So thank you very much for joining us. Like I said, your feedback form will be in your inbox. Please complete it. I will pass on all the feedback. Uh I'll pass it all on to Kate and um your certificate will be on your medal account and hopefully we'll see you soon. Ok? Take care everyone.