Episode 3 – Long Covid
We begin with Dr. Jason Maley, who explains what Long COVID is and the processes that may be involved.
Dr. Maley discusses his and his team’s clinical experiences of providing care to Long COVID sufferers, we also touch on the US national Recover research project that he is involved with.
Professor Amitava Banerjee is our second guest, he talks about the UK STIMULATE-ICP Long COVID research project we discuss the importance of illness prevention and his study findings on the organ damage linked with LONG COVID, as well as the research he is conducting looking into potential treatments.
[01:29] – Dr Jason Maley
[59:55] – Professor Amitava Banerjee
https://www.theguardian.com/commentisfree/2022/jan/12/long-covid-trial-britain-short-term-virus
https://www.stimulate-icp.org/
https://www.bmj.com/content/372/bmj.n693
https://bmjopen.bmj.com/content/11/3/e048391
Transcript
Kojala medical presents COVID 19 the answers the show that delivers the scientific evidence-based
Speaker:knowledge that can safely return us all to our pre-COVID lives my name is Dr Funmi Okunola and
Speaker:I'll be hosting the show every week you can listen to me interview a highly respected professional
Speaker:about the science that can reduce your risk of becoming infected with this coronavirus
Speaker:Hello and welcome to episode 3 of COVID 19 the answers today I would like to introduce you to
Speaker:Dr Jason Maley. Dr Maley is an epidemiologist and specialist physician in pulmonary care
Speaker:and critical medicine he is director of Beth Israel Deaconess Medical Center's
Speaker:critical illness and COVID 19 survivorship program in Boston in the United States he is an instructor
Speaker:in medicine at Harvard Medical School and co-chair of the American academy of physical medicine and
Speaker:rehabilitation post-acute sequelae of SARS COV-2 collaborative he has come to talk to us today
Speaker:about long COVID. Welcome Jason, would you like to tell us a bit about yourself, your resume is quite
Speaker:diverse how did you come to be an epidemiologist and also a physician for COVID 19 survivors?
Speaker:Sure, thank you for having me, so I came to be focused on this really initially through my work
Speaker:at in the intensive care unit following patients and families after they survived critical illness
Speaker:before the pandemic and had an interest in both understanding the challenges of recovering from
Speaker:especially a respiratory illness like a pneumonia and how to help people recover best
Speaker:and with the pandemic and the number of people we were seeing in the ICU
Speaker:and then recognizing this entity long COVID the sequelae that people were having even after mild
Speaker:COVID we knew that there was an important need to help these patients recover and the need to
Speaker:understand it better and to get to the bottom of why people were experiencing this so it was
Speaker:kind of a natural extension of my pre-pandemic outcomes work shifting into now understanding
Speaker:recovery from COVID 19. That's fantastic and I must say just thank you for all that you do.
Speaker:We across the world truly appreciate physicians such as yourself that have approached this whole
Speaker:sort of pandemic disaster with such bravery and focus. Really appreciate that thank you. So,
Speaker:I'm going to now get down to the questions and we're going to really talk about long COVID.
Speaker:So long COVID is estimated to affect 15 to 30 percent of all non-hospitalized people
Speaker:that get COVID 19 and around 80 percent of people hospitalized with COVID 19.
Speaker:to give the audience an idea on numbers with over 3 million Canadians infected with COVID 19 to date
Speaker:we would expect around half to 1 million people to develop long COVID in the USA nearly 78
Speaker:million people have tested positive for COVID 19. This would equate to around 12 to 23
Speaker:million people developing long COVID staggering figures so after a viral
Speaker:illness we can expect to be a little run down for a few weeks as our immune systems recover
Speaker:bearing this in mind what is long COVID and how does it differ from this presentation
Speaker:great so after you're right after having a typical virus having a cold
Speaker:or even having the flu most people will feel kind of run down for days to weeks but then they'll
Speaker:recover and they'll feel essentially like they get back to their normal routine their energy
Speaker:is normal their sleep normalizes they're able to work their thinking hasn't changed
Speaker:and certainly they're not having new unexplained symptoms like pains or changes in their taste
Speaker:and smell that has not returned those types of things so where long COVID differs is as
Speaker:people are recovering from the initial illness the acute illness
Speaker:having COVID 19 in the weeks to months after that usually people recognize around four to 12 weeks
Speaker:they haven't recovered the way they would expect or there are new things that they're noticing
Speaker:such as the shortness of breath that they had when they first had COVID hasn't gone away and they
Speaker:were previously athletic and active and now they feel short of breath walking around their house
Speaker:or their heart races when they walk around or they haven't been able to return to work because
Speaker:their thinking and their memory and their ability to multitask and organize and focus is
Speaker:completely off and they really can't function so those along with many other things head to toe
Speaker:are persisting in a way that you wouldn't expect for someone who had recovered
Speaker:from a virus and whose body had returned to normal so there's clearly a change that hasn't returned
Speaker:proportion of chronic illness in a population in recorded medical history?
Speaker:So, we it's it's tough to say
Speaker:exact numbers but one first reference point is prior to this pandemic
Speaker:this type of syndrome post acute infection post acute viral syndromes causing impairments like
Speaker:long COVID have been described for centuries actually they were given a variety of different
Speaker:names because the farther back in time you go the less understanding they had of medicine and
Speaker:similar unfortunately to what we're seeing with Long COVID at that time people were also kind
Speaker:of brushed aside as this isn't real or you're just you need to get over this type of mentality
Speaker:but people having changes in cognition persistent fatigue unexplained pains and other symptoms like
Speaker:we're seeing with long COVID has been described with other viral pandemics and after other
Speaker:infections so it's hard to know if we're simply recognizing it and it's getting this attention
Speaker:because of the scale of the pandemic and the fact that so many people are being affected
Speaker:and we're in the age of modern medicine and communication and connectivity across the world
Speaker:so that we can actually see that scale in a way that wouldn't have been possible during a pandemic
Speaker:at the beginning of the 20th century or during pandemics at other times so I don't know the exact
Speaker:comparison to others I think it's been seen before but certainly the scale is something that we've
Speaker:never at least had recorded in medical history.
Speaker:with a myriad of symptoms, over 200 symptoms in a paper I read last year
Speaker:ranging from fatigue, to heart arrhythmias. In your clinical experience as a physician
Speaker:closely working with this patient group. What are the most serious and concerning symptoms?
Speaker:The most common symptoms we see and what people most often come to us concerned about are
Speaker:debilitating fatigue. In many people, that's associated with something called post-exertional
Speaker:malaise, or post-exertional symptom exacerbation. Which means you feel an intense exhaustion.
Speaker:Some patients describe as if every part of their body is completely drained of energy
Speaker:after sometimes minimal activity. So someone will wake up in the morning go
Speaker:to make breakfast and after doing that they have to lie down and they feel almost incapacitated.
Speaker:There are others who feel fatigued that they're able to do their normal activities, but the next
Speaker:day after having a busy day, they feel a physical illness which is that post-exertional malaise.
Speaker:Many people actually think they got COVID again or they think they've been infected,
Speaker:so fatigue is a very common one the cognitive changes, changes in thinking, memory, focus and
Speaker:attention that impact people's ability to to work. Sometimes to do common things around the house
Speaker:like remember that they're cooking. They walk away and forget that they're cooking. That's a common
Speaker:symptom. The racing heart and feeling those types of symptoms which we classify as dysautonomia,
Speaker:an issue with the autonomic nervous system likely, is a common area and then some other ones include
Speaker:pains like burning, sharp pains, numbness tingling nerve type pains. Changes in digestion Shortness
Speaker:of breath I should say. Shortness of breath is a very common one and we see people also who their
Speaker:primary issue has been their taste and smell has never returned. They otherwise feel recovered but
Speaker:everything tastes rotten to them, or tastes like metal and they're not able to enjoy foods,
Speaker:So I'd say that's probably the handful of most common things people come with,
Speaker:although like you said, there are many things people have experienced head to toe which I think
Speaker:each one could be equally distressing or equally concerning, so it's not that one is more
Speaker:is there a difference in the terms post-acute sequelae of SARS-COV 2 and long COVID?
Speaker:To give you an idea of what I mean. A person who's been hospitalized with severe COVID and develops
Speaker:kidney failure as a result. Would that person on return in home who might remain in kidney failure,
Speaker:be labeled as suffering from long COVID, or do those that suffer from long COVID
Speaker:have their own unique signs and symptom? That's a great question. I think the terms
Speaker:came from different sources so long COVID arose within the patient community
Speaker:as a term that emphasized the fact that it wasn't necessarily that this was post COVID that
Speaker:they were experiencing issues from COVID that could represent a continuation of that disease
Speaker:and was a slight change in labeling from calling something a post-COVID condition
Speaker:which was one of the terms used in the scientific community post acute sequelae of SARS-COV 2 was
Speaker:I think, originated from the National Institutes of Health in the US and is essentially getting at
Speaker:is a scientific label for an illness, after the acute phase of the illness,
Speaker:which I think from a historical perspective is appropriate because there's also other post-acute
Speaker:infectious syndromes that fit with what we're seeing. So it's kind of easy to refer to that,
Speaker:but I frequently just use long COVID because it's simpler people are very familiar with it
Speaker:in terms of your question about people who have been very sick in the hospital
Speaker:and have persistent health impairments afterwards there is a distinction because whether it's from
Speaker:COVID from the flu from a bacteria causing pneumonia or other infection we've known for
Speaker:a very long time people who become very ill especially from infections in the hospital
Speaker:suffer long-term consequences in their health and it could be because their kidneys failed
Speaker:because they were bed bound for weeks and they have to recover from that or it could be
Speaker:changes in cognition thinking and memory just like we see with long COVID but it's probably
Speaker:a slightly different process within the body to become this sick after a mild virus versus
Speaker:to have difficulty recovering because you were severely sick in the ICU or in the hospital
Speaker:being severely sick is probably regardless of the cause the reason why you have difficulty
Speaker:recovering whereas long COVID for the most part is being used to refer to what could be the
Speaker:underlying biological reason that after getting a virus even a mild infection you begin to have
Speaker:a host of new health issues throughout your body and I think that's a different process.
Speaker:which brings me to my next question with so many symptoms associated with long COVID
Speaker:do you believe that as research progresses we will find that COVID 19 has led to a cluster of disease
Speaker:processes rather than just one termed long COVID I think from what I see with different patterns in
Speaker:patients the different types of symptoms and the different what we might use the term phenotype
Speaker:which is kind of a description of certain patterns of symptoms we may see 10 percent of our patients
Speaker:have this pattern 20 percent have a different pattern we certainly see that's what we're
Speaker:observing that's what I see as I see now having seen many hundreds of people with this there
Speaker:are some with very distinct clusters and respond to specific medications well others who have no
Speaker:response to those medications and have a different cluster so I think at the very basic level
Speaker:it may relate what we're learning at least to a change in the immune system
Speaker:the immune system is becomes active to fight the infection but doesn't shut off as it should
Speaker:but within each person there may be a different way that that manifests there may be specific
Speaker:immune cells that are more active in one person than another
Speaker:that could lead to impairments in one area in response to one set of medications versus another
Speaker:so I think it's it seems to be diverse enough that we'll learn from the initial injury of COVID
Speaker:the body responds in slightly different pathways and that could lead to these different
Speaker:clusters of symptoms and different responses to treatments which is unfortunately it's common
Speaker:for almost all diseases and what makes medicine challenging is that even one drug for one disease
Speaker:can cure one person of it and not help another?
Speaker:suffering. What is remarkable to me is that people who have never had any COVID symptoms,
Speaker:i.e those who have tested positive but are asymptomatic,
Speaker:can also go on to develop long COVID. Do you have a theory as to why?
Speaker:That's a great question. I don't know the exact answer to why that's the case
Speaker:and just by the nature of people recognizing long COVID as being associated with having had
Speaker:coveted with at least some symptoms almost everyone we see had a period of time where
Speaker:they felt ill and then the long COVID followed that it's less common that people come to us,
Speaker:having had a positive COVID test, no symptoms and then later on develop symptoms. So I don't know
Speaker:how common long COVID is after a symptomatic infection, but for the same reasons that it's
Speaker:causing this in mild infection it could simply be that the virus is stimulating a change in
Speaker:the immune system. Not to the degree that causes severe illness, but persists at a low level say,
Speaker:and causes other health impairments because it doesn't shut off appropriately. So I think
Speaker:it's possible that it could be after asymptomatic infection though most of the patients we see did
Speaker:have, can point to some symptoms, even if it's a very mild illness when they were initially sick.
Speaker:Has there been any definitive research that indicates for how much time
Speaker:an individual would be expected to suffer with long COVID? This
Speaker:goes back to that the different clusters of patients or buckets people seem to fall into
Speaker:there are we see certainly very distinct groups in terms of people who have similar
Speaker:long COVID issues they feel short of breath or they have brain fog yet when we follow them
Speaker:by nine months they feel back to normal versus people who have no change over time or a group
Speaker:of people. I would say it's not uncommon for people who have had very long symptoms
Speaker:that they have ups and downs they have a period where they thought they were completely over this
Speaker:and then something happened they may have gotten COVID again, or they may have had a stressful
Speaker:time in their life, or had some other illness and their symptoms flare back. So there's that
Speaker:group that has kind of a roller coaster of ups and downs. So it kind of depends on what group someone
Speaker:falls into in terms of guessing when they might feel better, or at least very close to normal.
Speaker:And as we follow people over the first six months or so, it gives us a fairly good understanding of
Speaker:which group they might fall into because their people know themselves well and they can say
Speaker:compared to three months ago. I feel so much better, I'm not back to normal but I'm
Speaker:dramatically better. That's much more reassuring than seeing someone who every month has an up
Speaker:and down and we can't quite get a grasp on what's causing these continued flares of their symptoms.
Speaker:Is there any evidence-based research to show
Speaker:long-COVID patients that have had significant improvement in their symptoms
Speaker:can completely recover or will long COVID stay with them for life?
Speaker:There lots of the research has focused on different symptoms over time
Speaker:it's been fairly limited in that it has done surveys or other ways of
Speaker:engaging patients to describe what they're experiencing. There haven't been as many
Speaker:studies that have very rigorously followed people systematically,
Speaker:say every month, or every few months. That's actually something that we're involved in right
Speaker:now is this large national study throughout the US that intends to follow people over years. But what
Speaker:i've seen so far, for specific symptoms are things like people, who even by four to six months still
Speaker:have changes in smell and taste. Most of them have recovered when they're followed up at one year.
Speaker:For people who have very fast heart rate in the early months after COVID, which is a common thing
Speaker:we see the heart is going faster than expected of activity. Most by six to nine months seem to have
Speaker:resolved that symptom. For other symptoms like fatigue and brain fog cognitive changes, those
Speaker:appear to be the most persistent among people who have persistent symptoms. Fatigue and brain fog
Speaker:or cognitive changes tend to be two of the ones that are experienced by most people in that group
Speaker:so it really seems to vary by by the individual symptom and we've seen at least that it definitely
Speaker:seems to vary by when people are able to get care whether it's medications to treat their symptoms,
Speaker:or rehabilitation to help their shortness of breath, or other forms of treatment there
Speaker:certainly seems to be a benefit that we're finding in our patients and patients when they enter into
Speaker:our clinic I feel are continuing on the path of recovery even if they're not fully back to normal
Speaker:it's uncommon for people to be worsening or not feeling better over time most people do
Speaker:every few months say that they're continuing to recover and they're continuing to feel better
Speaker:that's really good to hear actually so I may be a bit presumptive with this question
Speaker:but from your own encounters as a physician caring for this patient group have you experienced a
Speaker:patient fully recovering from long COVID that can be declared cured of long COVID. Yeah I think
Speaker:so. I have certainly have had patients who feel fully recovered. They generally fall
Speaker:into that group who by, I would say, 6 to 12 months are experiencing that recovery.
Speaker:Patients who are seeing us who are 18 months out, I guess the nature of them seeing us is because
Speaker:they still have symptoms. So there's a bias to who we're seeing, but we certainly have seen people
Speaker:who feel fully recovered. I guess the term cured may depend on us understanding what the actual
Speaker:cause of long COVID is and being able to test that which is something that we we don't currently know
Speaker:and can't do, so I'm hopeful that we'll learn through these studies what to follow and what
Speaker:to test for, that will help us know the body is no longer having the problem that caused long COVID.
Speaker:We do have a concern sometimes when people feel much better, that there could be a risk
Speaker:of symptoms flaring in the future and that could happen if they got a new infection. I've had
Speaker:people with who have felt cured and then had a second infection with COVID and their symptoms
Speaker:returned to some degree, so that makes me think if it is something such as the immune system
Speaker:that has not properly regulated itself they could be at risk for that with future infections
Speaker:So that's kind of where I stand on cured, but people recovering from symptoms we certainly
Speaker:have seen and we've seen people who without new infections or new triggers have felt completely
Speaker:back to normal that's encouraging do you have any idea of what proportion
Speaker:that is of the people you see it's going to be slightly biased because people with the worst
Speaker:symptoms come to us and there's also unfortunately a long wait for all COVID clinics because of just
Speaker:the sheer volume of people experiencing this so we do see the sickest of the sick people
Speaker:I would say probably a third of the people we see fall into that category of they come
Speaker:with bad symptoms yet we can tell as we follow them with time and we look back in time they're
Speaker:clearly improving and they get back to a place where they feel say 95/ 97% back to themselves
Speaker:probably a third of the people we see. And the other two thirds were either seeing
Speaker:slower progress, or they may feel better and then have a future flare and have more of that
Speaker:up and down coming and going aspect to their long COVID.
Speaker:Numerous important studies have been launched to look at how COVID 19 leads to long COVID.
Speaker:This has resulted in a range of hypotheses being proposed as a cause of long COVID. And to give
Speaker:just a few examples, a change in gut microbiome its classification as an autoimmune disease
Speaker:one really interesting one to me recently was latent viruses in the body such as the
Speaker:Epstein-Barr virus which causes mono or glandular fever being re-triggered by SARS-CoV-2 and so on
Speaker:so what in is in your opinion the most likely cause or causes of this syndrome?
Speaker:In my opinion the most likely theory to bear out as being true, is a change in
Speaker:the immune system after having COVID 19 that's leading to persistent low level inflammation or
Speaker:injury in different parts of the body what's triggering that we don't know there are
Speaker:even below that level of theory there are theories that it could be persistence of at par parts
Speaker:of the virus that the body is still feeling although there's not active infection going on
Speaker:that viral remnants are still triggering the immune system or that in autoimmunity meaning that
Speaker:the body's immune system is in a sense attacking itself has been triggered there have been some
Speaker:clues to those to that type of process but nothing definitive but I think it all centers around
Speaker:an inappropriate response of the immune system being persistently abnormal for
Speaker:much longer than you would expect after a virus I think other things like finding
Speaker:Epstein-Barr virus which is a very common virus that people may have latent in their bodies.
Speaker:It doesn't point to that being the cause necessarily because it's quite common that
Speaker:that's found in different infections in different inflammatory states. So I think it's probably just
Speaker:a clue to the fact that the immune system is not properly regulating itself more so than that
Speaker:abstinent viral virus itself being the explanation for long COVID it's probably just a sign of the
Speaker:issue within the body. Right, okay, so when you term viral remnants, you actually mean viral
Speaker:remnants of SARS-CoV-2 rather than viral remnants of something else that we may well have caught
Speaker:yes yeah that's one of the theories is that that that could be a trigger
Speaker:and it's very tough to to answer that theory because the only way to really look for virus
Speaker:in detail is if someone has unfortunately died and we can do an autopsy and those are usually
Speaker:people who get very sick in the hospital not people who are young and otherwise healthy
Speaker:and then got COVID and are living with long COVID but but it's hard to understand
Speaker:within their body what could be going on without getting the right tests.
Speaker:Long COVID is known to disproportionately affect women more than men.
Speaker:Do you have any idea why this could be?
Speaker:So I think telling the demographics has been tough because in some cases the surveys have engaged
Speaker:social media groups or other groups who may skew towards a different demographic depending on who
Speaker:is most engaged in that group and who is searching for answers as part of that group. So I don't,
Speaker:we certainly see a spectrum men and women and all races and ethnicities affected by this and
Speaker:I think that makes sense to me. There are parts of long COVID like having a very fast heart rate
Speaker:with activity that has been seen after other viruses or as part of a syndrome called POTS
Speaker:austral orthostatic tachycardic syndrome that has tended to be younger women more often than men.
Speaker:And more often than older people and I don't think it's very well understood why that's the case the
Speaker:MECFS is another component a syndrome that we see reflected in long Covid which stands for myalgic
Speaker:encephalomyelitis chronic fatigue syndrome that has also been described for a long time after
Speaker:other infections and also sometimes for unknown reasons people develop this but
Speaker:they frequently are able to point to some initial illness and initial infection.
Speaker:In studies of that disease that have gone on prior to the pandemic,
Speaker:there have been clues that there may be genes. Genetics that make one person more susceptible
Speaker:after an infection to developing it compared to others, so I think probably the reason
Speaker:that so many people are having the same virus infect them and some recover and some develop
Speaker:long COVID would have to do with differences in the genetics and how the bodies are responding,
Speaker:which could then translate into differences among demographics. So that's interesting. So you
Speaker:actually think there's likely a genetic rather than a sex or gender difference that could be
Speaker:leading to an exacerbation of symptoms I think probably for for the same infection to lead to
Speaker:such varied responses in the body the genetics or something we call epigenetics things that also not
Speaker:just your genes but modify the activity of genes there could be so many reasons why one person is
Speaker:prone to having this completely different response to the virus than another and we see that
Speaker:in acute COVID too some people get very sick and die from Covid and someone else who seems
Speaker:to be the same age the same gender otherwise seems exactly the same has a mild illness
Speaker:so there are a lot of factors related to how the immune system responds to infection
Speaker:that differ between people and there are things such as genetics and other
Speaker:factors that modify the activity of genes that could be why there's such a different response
Speaker:I guess it would be really interesting to do some twin studies to back up that argument do you
Speaker:know of anybody who's doing that yeah that's an interesting point I don't know off the top of my
Speaker:head about twin studies but that is an area where people can use identical twins and understand
Speaker:and also can use people adopted at birth who are twins to understand the relationship between
Speaker:environment versus genetics on illness but I don't know of that in long COVID thank you.
Speaker:Long COVID seems to affect one or many different parts of the body involving potentially
Speaker:many medical specialists becoming involved in the sufferers treatment
Speaker:and recovery can you please tell us about your approach to providing care for these patients
Speaker:because it affects so many parts of the body and we recognized even early on from patients
Speaker:surviving the ICU that there were many different areas affected that know one doctor or one
Speaker:therapist or clinician or nurse could help address a loan our approach was to put together a team of
Speaker:people who really act as a group centered around the patient's needs and we modify who's involved
Speaker:with each patient depending on the individual patient's needs so some people may primarily have
Speaker:issues with their thinking and memory and they need to focus on seeing our cognitive neurologist
Speaker:and our occupational therapist who specializes in brain rehab
Speaker:and a neuropsychiatrist who also specializes in brain rehabilitation all of those people are kind
Speaker:of part of the core team and then you can easily streamline patients getting into each one of them
Speaker:much more than you could if you were just refer you're a primary care doctor in a health system
Speaker:and you're just trying to refer patients to different areas and then the second benefit of
Speaker:creating that team is that you begin by virtue of specializing in this seeing a very high volume of
Speaker:patients and you gain a level of experience quickly that other people just simply don't
Speaker:have because they're not focused solely on this and so your our practice and how we treat patients
Speaker:begins to be informed on a week-to-week basis by what we're learning from seeing so many patients
Speaker:and it's a feedback where we can develop processes of care and see what's working
Speaker:and what's not in a way that wouldn't be possible if we didn't have a high volume specialized team
Speaker:that's fantastic so I guess it's what's called a multi-disciplinary team with many
Speaker:different I guess medical specialists and and other medical professionals
Speaker:being involved yes yeah that's right we have very important outside of physicians social workers
Speaker:physical and occupational therapists a nurse who coordinates all of this
Speaker:the staff in our clinics who help to coordinate the care as well and then researchers and people
Speaker:who are doing things like breathing therapy with patients who have backgrounds in yogic breathing
Speaker:people who are helping with their research to understand what's going on
Speaker:so many areas of the team and many different disciplines involved that's fantastic this
Speaker:virus is a new discovery in medicine and science your experience with post-intensive care syndrome
Speaker:must have been invaluable to the work you are doing today on long COVID please explain
Speaker:post-intensive care syndrome to our audience and could you relate how this clinical and
Speaker:research experience fed into your clinical care and research of long-COVID sufferers?
Speaker:Yes, thank you. So over 20 plus years research had been showing that people surviving being
Speaker:an intensive care unit on breathing machines, on ventilators or having severe infections in
Speaker:the intensive care unit were leaving and suffering from changes to their thinking.
Speaker:They were testing on the level of people with dementia at times, in terms of their thinking.
Speaker:They were physically debilitated because they were bed bound and for so long and they were
Speaker:sick and their muscles had wasted and they may have other injuries and they were suffering from
Speaker:post-traumatic stress disorder, anxiety, depression. They may have had continued shortness
Speaker:of breath because their pneumonia had scarred their lungs, so all of these issues became termed
Speaker:post-intensive care syndrome which refers to these persistent health impairments that
Speaker:occur after being in the ICU and persist after leaving the hospital
Speaker:and they generally fall into those buckets of physical impairments, mental health impairments,
Speaker:and cognitive impairments although there are now many other things layered on top of that
Speaker:that issue post-intensive care syndrome was at least in the US not very well addressed
Speaker:by health systems. There were only a few clinics that existed prior to the pandemic that were
Speaker:focused on ICU recovery and it was so is very, very limited getting actual specialized access
Speaker:the pandemic was a catalyst for many of these clinics opening up including ours because
Speaker:suddenly health systems saw the issue and it was being recognized by the public and they were
Speaker:motivated to to invest and to support these whereas prior to this a lot of it fell into the
Speaker:research domain and didn't make it over into the space of actually helping patients clinically.
Speaker:Wow that's something positive to come out of all of this really yes that's really cool you treat
Speaker:both hospitalized and non-hospitalized long-COVID sufferers the presentation
Speaker:of symptoms for long-COVID and post-intensive care syndrome is similar how do you distinguish
Speaker:between the symptoms caused by long COVID from the symptoms caused by post-intensive care syndrome
Speaker:yeah for post-intensive care syndrome because there's a fair amount of experience with it
Speaker:prior to COVID we tend to really if people are coming out of the ICU focus on those issues
Speaker:which do have some overlap with long COVID so there are people who have changes in cognition
Speaker:there are people who are physically debilitated and need very intense physical therapy and then
Speaker:others with mental health issues or shortness of breath so we tend after the ICU to really
Speaker:focus on the big steps of recovery going from
Speaker:someone who has been in the hospital bed bound on life support to it walking around
Speaker:basic functioning at home those types of things and then over the coming months we're able to see
Speaker:is someone kind of continuing to progress and recover in the expected way
Speaker:or are there other unique aspects to what they're experiencing that we see with long
Speaker:COVID like the taste and smell haven't returned that's something that we wouldn't routinely
Speaker:expect with post-intensive care syndrome and is more unique to this virus that they're having
Speaker:unexplained pains throughout their body that's something again we see commonly with the virus
Speaker:and there are some other examples of things that wouldn't you wouldn't simply expect
Speaker:related to being critically ill and maybe more unique to long COVID itself
Speaker:but the approach is generally get the big picture of recover recovery settled out which is largely
Speaker:post-intensive care syndrome issues addressed and then over time understand is they're recovering
Speaker:are there new issues emerging or are some of the issues persisting that we think we wouldn't expect
Speaker:to persist in this way if it was just critical illness alone and not long COVID so in actual fact
Speaker:you're in a very good position because you see those two different groups to sort of tease out
Speaker:so the two different types of symptoms it's actually a very good position that you're in from
Speaker:what I can ascertain am I correct? Yes I think so. And it's a bit up to the individual patient how I
Speaker:think long COVID has gotten so much recognition. People may feel more support if they're labeled,
Speaker:or they self-associate as having long COVID and there are other people experiencing these things
Speaker:post-intensive care syndrome though it was known in the medical world was not really known to the
Speaker:public and even not known to most doctors so I think there is a also benefit in just the commun
Speaker:community of support that you get from being someone who has long COVID whether it's we think
Speaker:it falls more into a post-intensive care syndrome bucket or it's more of a long-COVID bucket.
Speaker:Could you please share with us the specific research that you're doing with respect to long
Speaker:COVID? So our research spans a few areas with long COVID early on as we began to see people
Speaker:with shortness of breath many of whom were having normal testing performed and we couldn't find an
Speaker:issue with the lung lungs themselves that fully explain this we were wondering how we could help
Speaker:people rehabilitate from that knowing that they were safe to do so because their lung function was
Speaker:was preserved so we've been doing a randomized study of specific types of breathing exercises
Speaker:to improve the breathing comfort for patients to improve their strength of breathing
Speaker:and to improve their ability to breathe comfortably while active.
Speaker:More recently this extensive study across the the US through the national institutes of health
Speaker:is called recover and it's going to be enrolling people who either have long COVID
Speaker:or are at the time of having their COVID infection are acutely sick or people who have not had COVID
Speaker:as far as they know and are healthy and so we can use them for comparison and we're doing
Speaker:detailed testing blood testing questionnaires as well as potentially depending on symptoms
Speaker:tests head to toe like brain MRi lung function tests, other things to get at what exactly is
Speaker:causing these symptoms and what could explain long COVID and how do people recover in these
Speaker:different groups so how as we test them over time are their symptoms changing.
Speaker:Recent studies in Israel and the US have indicated that vaccination
Speaker:possibly prevents long COVID, or reduces the severity of long-covered symptoms. In your opinion
Speaker:when we are vaccinated against SARS-CoV- what is happening in the body to cause this
Speaker:so when we're vaccinated against SARS-CoV- 2 or pretty much any vaccination the idea
Speaker:is to produce a memory within our immune system for that infection so that the infection for in
Speaker:the case of this virus which may be in your nose along the lining of your nose as as you breathe it
Speaker:in can only get that far and when it enters the body it's cleared quickly because your body has
Speaker:a memory of this infection and it removes it it has antibodies which are things that attach
Speaker:and remove infection and activate a process that ultimately removes the infection from your body
Speaker:so the biggest difference in someone vaccinated versus unvaccinated from that perspective
Speaker:is really the body entering and the virus entering and spreading throughout the body
Speaker:in a way that can be harmful if you're vaccinated you can still be exposed to
Speaker:the virus you can still breathe it in it can still get on the lining of your nose and that's
Speaker:why you can still test positive potentially at the time that you're exposed from a swab
Speaker:but it won't successfully get in and spread throughout your body and it won't make you sick
Speaker:so I think the biggest difference is early rapid clearance of the virus within the body preventing
Speaker:it from spreading throughout the bloodstream to tissues and affecting tissues potentially with
Speaker:inflammation and that seems to fit with the idea that abnormal immune system activation
Speaker:is explaining long COVID persistent inflammation throughout the body could be explaining long COVID
Speaker:if you prevent that from happening in the first place by clearing the virus immediately
Speaker:through the memory that your body has from vaccination then you could prevent long COVID
Speaker:and that's what we're seeing in these studies that are early and there's, they're preliminary,
Speaker:some are not yet fully reviewed by the journals that they've they're submitting to but they
Speaker:seem to be good quality and they suggest one of the recent studies I've seen from Israel
Speaker:that full vaccination is more protective than single dose and is much more protective than
Speaker:unvaccinated so it fits with this theory and it kind of supports this idea that
Speaker:clearing the virus quickly could prevent long COVID that's an excellent explanation I can sort
Speaker:of qualify that in my mind so when you say full vaccination do you mean two shots three shots
Speaker:so this test this study was done with two shots I believe of the Pfizer vaccine
Speaker:at this point I would consider someone a full protected vaccination with three
Speaker:shots and that's been shown very clearly with data
Speaker:in with the Omicron variant that two shots are not fully protective in the way that three shots are
Speaker:and certainly for someone who is at higher risk because of their age or other illnesses
Speaker:or their immune system is compromised then they they definitely need to have full vaccination
Speaker:including booster shots to be protected. Yeah, thank you for that excellent answer.
Speaker:Despite the worldwide record-breaking number of COVID infections caused by the recent Omicron wave
Speaker:we have been told by politicians and some in public health that we need to live with COVID
Speaker:19. countries all over the world are rushing to roll back public health infection control measures
Speaker:such as requirements to wear masks or to be vaccinated to enter public spaces
Speaker:in some countries and regions access to testing has been reduced contact tracing cathode and
Speaker:cessation of the need to quarantine if you test positive it appears with this approach that some
Speaker:are advocating a policy of letting the virus rip through our populations unobstructed what
Speaker:is your opinion of this approach and what impact do you see this having on long COVID so I think
Speaker:we expect long COVID can continue to happen unfortunately from this virus as it spreads and
Speaker:so the decisions from a public health perspective and for each individual person of how they want to
Speaker:protect themselves could impact that you could be at higher risk if you're not vaccinated and
Speaker:you're in public places and you don't wear a mask you would be at high risk of getting the virus and
Speaker:then you could get long COVID if you're fully vaccinated and you take measures to
Speaker:avoid crowded spaces indoors or you wear a mask indoors then you're at lower risk
Speaker:the actual public policies that are decided are are tough because everything in medicine
Speaker:is a benefit of risk is a balance of risks and benefits and people often outside of medicine
Speaker:have a tough time conceptualizing that and policies are kind of a blanket thing so everyone
Speaker:is affected by them yet within even a state or a town they're going to be people with polar
Speaker:opposite views on this risk benefit some will be more comfortable being more careful and some will
Speaker:want to be less careful in terms of exposure to the virus so I think the the main answer to the
Speaker:changes is that we will unfortunately continue to see mild infections that's going to be the reality
Speaker:of the state of the virus and the rate of vaccination in different regions will affect that
Speaker:we're hopeful in the regions like I live in where there's a very high vaccination rate
Speaker:that that will be protective against Long COVID in the same way it's protective against
Speaker:COVID infection and severe illness from acute coping so that will benefit those areas in areas
Speaker:where the virus is spreading and there's a low vaccination rate they're going to have I would
Speaker:expect higher rates of long COVID as well and in some of those areas unfortunately they may be
Speaker:less prepared because they're not large cities with long COVID clinics or they may be less well
Speaker:resourced and so that will be a challenge as well getting access to care for people
Speaker:experiencing non-COVID who are in an area that they don't have large hospitals or
Speaker:this pandemic initially the medical community did not believe people were suffering from long COVID
Speaker:as a result people set up their own online support groups some don't want to hear about long COVID or
Speaker:acknowledge it exists as an important byproduct of the COVID 19 pandemic yet we see numerous examples
Speaker:of well-known individuals such as Olympic athletes or professional athletes in their peak physical
Speaker:condition who have had their career trajectory altered and in some cases their career ending
Speaker:because of long COVID why do you think long COVID is being ignored
Speaker:by so many when there is so much evidence to the contrary showing it is doing damage to so many
Speaker:yeah that's a great question I think the why is tough to get to but is
Speaker:unfortunately not too surprising that people have been discounted for illnesses that
Speaker:weren't clearly measurable or didn't clearly show up on some test and even among people
Speaker:who have illnesses who show up on some tests they're discounted for a variety of reasons
Speaker:so I think medicine had people skeptical as well as outside of medicine and we see that we still
Speaker:continue to see this people skeptical of well is this real how much of the symptoms are people
Speaker:exaggerating are this people who come to our clinic even tell us among friends and family
Speaker:sometimes they have a tough time with people saying you know these other people were sick at
Speaker:the same time and feel fine. Why do you still feel this way? People have that problem with
Speaker:employers sometimes as well as they are feeling these changes in cognition, this exhaustion,
Speaker:pains throughout their body and because it doesn't manifest in a very easily measurable or tangible
Speaker:thing, like a cat scan result, or a test for cancer, or something like that. It's I think, it's
Speaker:easier for people to be doubtful of it. Especially if they're not deep within this work and clearly
Speaker:seeing this is obviously an injury after the virus this has been described for centuries.
Speaker:We know a fair amount about what how other viruses have affected people in terms of syndromes and
Speaker:we're learning a fair amount about the actual changes with long COVID and I'm hopeful that the
Speaker:recent research, especially this year as research is really ramping up our understanding of the
Speaker:biology of long Covid is ramping up. There will be clear high impact studies that kind of wipe
Speaker:away any doubt that people had, but as you've seen and we've seen throughout the pandemic. Even very
Speaker:obvious tangible things can be discounted, or ignored by people and that's, I think,
Speaker:part of human psychology and not necessarily unique to any any virus or any illness.
Speaker:In 2026 the first baby boomer turns 80. Our medical systems are already stretched thin
Speaker:with an aging population as a certainty in the next few years
Speaker:and the potential additional cost burden on the medical system with
Speaker:long COVID. How do you think we can manage these pressures going forward?
Speaker:So I think certainly investment in in primary care and general medicine care
Speaker:and investment in teams that manage illnesses in ways that center around the patient's needs and
Speaker:bring value to the patients rather than ways that produce revenue through testing or treatments that
Speaker:that type of focus which is kind of value-based healthcare compared to what we call in the US
Speaker:fee for service. Which is you have something done and the insurance pays for that specific
Speaker:thing to be done. Having a value-based mindset and having insurance coverage that focuses on
Speaker:patients outcomes rather than just services, is gonna certainly serve patients well.
Speaker:We're hoping at least from a long COVID perspective to have investments through
Speaker:Federal grants or other programs to support the continued build up of long COVID clinics because
Speaker:there are already too few were already overwhelmed and if you rely on each COVID clinic
Speaker:to try to support itself it's going to be quite challenging so we're trying to advocate for some
Speaker:organized national program that supports the development and growth of long COVID clinics
Speaker:both from a clinical and research perspective but I think caring for an aging population will
Speaker:hopefully require a continued shift in the right direction of how we provide medicine
Speaker:that we focus on prevention of disease not treatment of illness once it's happened and
Speaker:we actually truly put our money where our mouth is in that because for the most part health care.
Speaker:Things that treat more serious diseases, pay more procedures are more desirable financially from
Speaker:the global health care perspective, than a preventative treatment
Speaker:and we have to continue to shift to
Speaker:value-based health care and preventive health care for aging populations. Thank you for that answer.
Speaker:Post-pandemic. Let's look at people that have had COVID 19. About 400 million people
Speaker:in the world to date which is likely to be a an underestimate have had COVID 19
Speaker:so from that figure around 60 to 120 million people will be expected to develop long COVID
Speaker:with this figure set to increase as more people become infected do you believe that
Speaker:long COVID will have a greater economic and societal impact than the pandemic itself
Speaker:it's hard to do a direct comparison I think it will have a substantial
Speaker:impact and it could be a very big enduring impact in terms of employment joblessness because
Speaker:tons of the patients we see have to leave their jobs because they can't
Speaker:function in the jobs so I think the workforce issues will continue in part because of long COVID
Speaker:those buckets of patience I talked about people recovering versus having continued illness
Speaker:it's hard to know amongst the the millions of people having COVID
Speaker:how many people will fall into each bucket so we're I'm hopeful with vaccination and with what
Speaker:we're learning about long COVID we'll be able to help these patients in a way that we weren't
Speaker:able to do at the very beginning when this was first recognized and we knew nothing about it
Speaker:but I think the the pandemic itself has had catastrophic worldwide financial implications
Speaker:I think the implications of long COVID will be really on the workforce and on the quality of
Speaker:life and the lives of all these people affected which may not be easily reflected in a jobs number
Speaker:or an economics number but will be people living with these chronic illnesses that are
Speaker:have changed the way they experience or enjoy life and that in and of itself is a huge deal
Speaker:and I know we've nearly run out of time so this is a very last question I'd like to
Speaker:end on a positive note what have been your most uplifting experiences of this pandemic
Speaker:I think the most uplifting thing from a long COVID perspective is just how resilient people are
Speaker:that people come to us with these intense impairments and changes how they're feeling
Speaker:and experiencing life yet they've continued to go they're raising their kids they're at home
Speaker:and even when we don't have an easy answer and we listen to them just by developing
Speaker:a relationship with them and having someone listen people are so grateful and that is a
Speaker:very simple thing that you can do it doesn't take really any specific medical expertise
Speaker:but it's something that for patients who are being ignored is often not provided to them no
Speaker:one is listening and so I think the simplicity of developing relationships with people by listening
Speaker:and believing their symptoms and by partnering to help them feel better even if we don't have
Speaker:a simple cure has been an uplifting part of this and seeing the resilience that people have
Speaker:thank you so much for such a fantastic interview it's been very informative and we're so privileged
Speaker:to have an expert such as yourself join us today thank you for all that you do
Speaker:your patients are very lucky to have such a dedicated healthcare professional
Speaker:looking after them thank you thanks it was my pleasure thank for having me
Speaker:Thanks for listening to this week's episode of COVID 19 The Answers. If you enjoyed the episode
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