 This is Donna Prosser, Chief Clinical Officer with the Patient Safety Movement Foundation. I'm excited to be here today talking with Dr. Steve Deeks. He's a professor of medicine at the University of California in San Francisco. We're gonna be talking today about the phenomenon of the long-term effects of COVID-19. Welcome, Steve. Thank you, Donna. I wonder if you could tell us just a little bit about your background and how you got interested in the long-term effects of COVID. Well, basically, before COVID, I was a full-time HIV clinician, and I ran a long-term cohort that was basically focused on trying to identify the long-term complications of HIV in its treatment. And we work a lot with the infectious disease doctors here in San Francisco, and when the pandemics are in San Francisco, we quickly repurposed our cohort and enrolled a growing number of people with the history of COVID. But there really is sort of a long-term plan to do what we do with HIV, which is to characterize, biologically and clinically, some of the long-term consequences. So that's what we're doing. Wonderful. And so tell me, what have you learned about this new phenomenon? We are in the process right now of collecting data and trying to do things prospectively and as systematically as we possibly can. What we've learned is that this is a bad thing to get. Most people, you know, do well, but some have these lingering consequences that we're trying to figure out what they're like and why they're happening and what to do about them. You know, the thing that I've learned that's most important for my day-to-day living is it's probably better not to get infected than to have to deal with some of this stuff in the long-term. And what kind of symptoms are you seeing in these patients with long-term effects? You know, the majority of people that we've seen who've actually had a prior infection, who recovered, for the most part, most people are asymptomatic. And I would say that in our experience, maybe a third of people have some lingering issues, primarily malaise, quality of life issues, some of the vague symptoms that have been reported in the press, not uncommon, a persistent cough, some low-level fatigue, and things along these issues, things that are sort of hard to quantify but really have a big impact on people's quality of life. I'd say that in our cohort, which we don't think is necessarily representative of the entire pandemic, we're seeing this in maybe up to a third of people initially with our anecdotal experience being that these symptoms typically wane with time. Our experience is really more in trying to understand the biology rather than the epidemiology. So I just want to just clarify that. I think in the larger cohorts that have tried to sort of get at this question of what's actually happening and how often it, I think the numbers there are smaller. And I think probably the most robust cohort that have tried to get an issue of the epidemiology or suggest that this phenomenon, this post-COVID syndrome, is occurring in maybe about 10% or so of people, but be carefully well done population-based cohort with proper controls to figure this stuff out. And have you found any treatments that are effective in treating and helping these patients? Oh, no. I mean, in terms of this post-COVID stuff, no, we're really at that point where we're trying to collect the data to identify what is the problem, do the biologic studies to understand the potential mechanism. And then once that has happened, then we can begin to think about what kind of therapies might be helpful for this population. But for the most part, again, I don't want to over-sensationalize it. Most people are doing well. But for those who do have lingering issues that are affecting their quality of life at our hospital and many of the academic centers around the world, we're developing these post-COVID clinics which are really supportive right now, providing people with access to the kind of psychosocial support that they need and some physical therapy and that kind of thing. So those are the only kind of therapies that are now being administered. But I think once we have a good idea mechanism, then we'll begin to develop therapeutics. Do you have any thoughts on how long it'll take before you have some more answers? Well, it's like vaccines, right? So the vaccines for prevention take about a decade or so to develop and COVID time, it's about a year, a year and a half. So everything is super rushed right now. Everything is high priority. Multiple people are doing complementary work. I have a feeling over the next, I've noticed over the past few weeks in the press in particular, this issue of the sort of the long-term COVID consequences, so-called long haulers, is getting a lot of attention. And I have a feeling that the resources are gonna shift to help those of us who are interested in the biology to figure this out. Right now we are beginning to do deep studies looking at the inflammatory response to the infection, the immune function, coagulation status, this kind of thing. So I think us and other groups will come up with an idea of potential mechanisms over the next few months and then we'll start doing therapeutic studies, right? So we can discuss what is happening. But again, it's kind of vague. It's real. It's maybe 10% of the total population. It's more common in people who are older, who are sicker to begin with. It might be more common in women than men. Some studies suggest that. I'm trying to figure that out. The natural history so far, to me suggests that it does wane in time with most people, which is good news, but we don't really know that yet. And there's no good longitudinal data. You know, in terms of mechanisms, you got several, right, possible ones. You got that the virus could be there, that it doesn't go away. It replicates its persistent particulate tissues, in which case the treatment would be better antivirals. Right, and I'm personally excited by the monoclonal antibodies that are being developed, these antibodies that bind to the virus. So in theory, if it's persistent virus, we can actually treat people with either antivirals or these antibodies make them better. If it's an inflammatory response, well, there are low level, you know, reasonably well maintained, well tolerated anti-inflammatory drugs that could be tested. Some people are now actually using prednisone because of this reason. If it's immunodeficiency, lack of interferon response, which is a growing concern in terms of acute SARS-CoV-2, there are ways to deal with that as well. If it's a fromboembolic event and clotting and persistent clots and so forth, anti-coagulation therapy could be used. All this could be done, but also typically in a context of providing the supportive care that this population needs. And so for patients, any patients in our network that may be struggling with this, you know, dealing with these long-term effects, you talked about supportive care that they should be seeking out. Is there anything in particular, any recommendations that you have for those folks who maybe are not under a physician's care right now as to what their next steps would be? I would, you know, I think the key thing would be to get into these supportive clinics if they're around and they're being developed everywhere, you know, and I, but I think actually importantly, I think people realize that, you know, initially I think that there was some suspicion in the medical community that this is real, because we've seen these types of symptoms before and they're kind of vague and they're hard to diagnose and there's no measurement that we can look at. And so people wasn't a bit dubious about it. I don't think that that's really an issue. You know, I think everybody is absolutely convinced that this is a syndrome. It's happened before. It happened in people with the first SARS pandemic. It's happened in people who've had Ebola, other sort of acute viral infections. It's a well-known phenomenon of a sort of post-viral syndrome. So I just think, just acknowledgement that this is actually real and no longer controversial, I think would help people. And then the supportive care, which is gonna have to be individualized and some of it's gonna have to social economic. I mean, people are disabled and can't work. And so they're gonna need support in that regard, physical therapy and this kind of stuff. Well, I appreciate you saying that and I know that all of the folks in our network that are struggling this appreciate that as well because they have been told that it's not real. Right, and so which is associated with some stigma, right? And I'm very familiar with stigma as a long-term health issue in our HIV population. Most of the medical stuff associated with HIV, but there is this widespread stigma still associated with being HIV infected. And that has a huge impact on people's quality of life over years and decades. And so I think society and the medical establishment needs to be very careful about this particular syndrome because we don't become stigmatized because that in itself becomes negative. And I'm hoping with comments from Tony Fauci and others recently suggesting this is a real phenomenon, that it's a medical condition, it's like any other medical condition. Got to understand that we got to treat it. I'm hoping that societal stigma will become an issue. Well, thanks, Dr. Deeks. That was so great. And we really appreciate you sharing with us what is happening right now at the University of California at San Francisco. Now we'd like to speak with Dr. Jake Stewart. He is an anesthetist and an intensive care physician in the United Kingdom who has been personally dealing with the effects of this post COVID syndrome. Welcome, Jake. Nice to see you today. Thanks for having me. Can you just tell us a little bit about your background, Jake? So I'm a 32 year old. I was working as an intensive care doctor in March 2020. I've trained in medicine, trained in anesthetics and was about to start a new job in Australia. I was very active, went to the gym three to four times a week and otherwise healthy, active lifestyle. Wow, so you're not the typical patient that we hear about. We hear a lot about how this illness is affecting mostly the older population, those with chronic conditions. So I'd love for you to tell us just a little bit about what your experiences were with COVID. So we were looking after patients with COVID and involved in intubating three patients that required ventilation on the intensive care unit. I had attended cardiac arrest calls from patients that we suspected had COVID-19 in our accident and emergency departments. So I'd had contact with patients who we knew had the virus. About two weeks after my first contact, I started to have symptoms. At the time we were being told that the three symptoms to look out for were fever and dry cough and shortness of breath. And for me, actually the shortness of breath came first. I was being woken up in the middle of the night with shortness of breath and by the morning it had gone away. The next night it was a bit worse and then the following day I started to have temperatures and a dry cough and at that point I self-isolated and realised that this was probably COVID-19. I'd assumed, as you said, being young that I would fight this off quite quickly and then it wouldn't be too much of a problem but each night the symptoms took a step upwards in severity each night. And that's very frightening when the symptoms are shortness of breath. So by the 10th night I was gasping for breath. I could not catch my breath even just laying still on my bed. And I decided that I should go and get checked out in the hospital to make sure that something else wasn't going on or to check that I didn't need any extra treatment. When I got there my blood test showed that I had some kind of inflammation going on in my body. My neutrophils were raised. My liver function tests were deranged. My thyroid function tests were deranged. But I didn't require oxygen and at the time testing wasn't available for patients that were not being admitted to the hospital. So I was told that I probably had COVID but that I could go home and that I should recover shortly. The following week I tried to push through my symptoms. I was still very, very short of breath but I was forcing myself to walk around the park, tried to get myself fit as though I could convince my body to just get on with it. And when I did that the shortness of breath got worse and on top of that I started to have a very cardiac type chest pain on my left side as well. I then started to have palpitations. I had episodes of tachycardia at rest. I had episodes of bradycardia at rest. I had ongoing temperatures. I had waves of fatigue. So it wasn't my main symptom but I could be doing something like washing up or trying to do some laundry and then just click at the fingers this sense that I would fall asleep almost standing up. So very, very difficult symptoms, very, very frightening. For about six weeks I was still short of breath just trying to eat just sitting on the sofa. It was, it's very traumatic symptoms to feel that short of breath. And I'm now about six and a half months on and things are considerably improved but I'm still short of breath if I walk up a flight of stairs. It's definitely had a life changing impact on me. I know you're involved with several groups that are of individuals who are also dealing with this. How widespread of an issue have you found this to be? I think it's a very interesting question. In the first five or six weeks I didn't know if anyone else was affected like this and I wondered if I was the only person struggling to recover, but Paul Garner who's a professor in the United Kingdom wrote about his recovery in the British medical journal around five or six weeks into my illness. And he had found online other patients, other people living with the same symptoms and mentioned how helpful he had found the ability to share what we were going through. So I found some of those support groups through that article and started to realize that there were thousands of us in these groups and that nobody was recording how many people this was happening to. So I think it's fair to say that we don't really know how many people this is happening to but there's thousands of people in these groups saying that this is what's happening. And I think part of the problem is that there certainly in the United Kingdom there was no structured way to follow up what happened to people after they had a positive test or after they had a clinical diagnosis. And so there was not any kind of centralized system for following people up. The other hope that I had was that there might be enough patients presenting to kind of tertiary care centers like infectious diseases centers that a pattern may emerge that this was a problem but that also seemed to not be happening very quickly because of how overwhelmed health services were with the acutely unwell patients. So a couple of things started to happen which ended up raising the issue of how many people were affected. And that was the individuals started to speak out in the media and sort of share their personal experiences but also there is a research study using the Zoe Symptom Tracker app which is being led by Professor Spector at Kings College London which involves about four million people in putting data into an app each day about their health and the emerging evidence from that app is that about 10% of people who have COVID still have symptoms after one month and about 2% still have symptoms after three months. So it does seem as though it's not the vast majority of people but it doesn't seem to be linked to the same cohorts of people that you would expect to have the highest risk of mortality. So this is affecting young people as well. And 2% is a relatively low figure but when you consider that the World Health Organization has estimated that 780 million people have probably been infected with SARS-CoV-2 now. That's obviously a much larger number than the laboratory confirmed cases. But if you imagine that 2% of 780 million people that means that we're probably looking at at least 16 million people around the globe who are still having very difficult symptoms three months on. And in addition, nobody knows really what's causing them and what happens. So it's a very strange situation and definitely needs more research and more structured epidemiological studies to really work out how many people it affects and what are the risk factors and do we need to adjust the way that we're thinking about our public health measures here. Wow, those are quite sobering statistics. And I'm grateful to Dr. Dietz for doing that research that you spoke about. I wonder if do you have any recommendations for others that may be struggling with long COVID or post COVID syndrome? I think I would recommend people to firstly contact their medical professionals that can help them. I think a lot of the symptoms that people are experiencing outside of a pandemic time would warrant urgent medical investigation. So things like breathlessness and chest pain and weakness and neurological symptoms. If people have symptoms, they need to present to a medical professional so that firstly, we can rule out known complications of COVID-19. So we know that patients can have blood clots. We know that patients can have myocarditis. So it's about ruling out medical problems that can be treated. And then also I think it's about ruling out non-COVID causes of those same symptoms. So it's important that people do present and get the help that they need from a medical professional. But also in terms of handling the disease, handling the symptoms, I think it's helpful to find some support from other people going through the same things. It is really difficult to deal with these symptoms and I'm sure it would be really difficult to deal with these symptoms at the best of times. But at the moment, it's a very difficult time in the whole world if you like. I think people are, everyone is concerned about their safety. There's lots of uncertainty out there. It's hard to get listened to and to get help in some way. So I think make contact with other people who can understand what you're going through, find some support and try to talk about it with friends or family that you trust because some people will be able to be there for you. They might not be able to give you an answer but they can certainly support you through what you're going through. And then finally, I would say to try to stay as optimistic as you can. It's very easy to feel overwhelmed by this. So I think we have to say, look, the word is getting out there. We have made the researchers aware of the problem. Let's see what science can come up with and keep going, don't give up. That's excellent advice. Well, I know you mentioned that you're not quite completely recovered yet and we wish you very well and hope that you recover shortly. Thank you so much for being with us today. Thank you very much. Good luck to you, Jake. Thanks a lot.