Episode Transcript
Marie Claire Seeley Full Interview
[00:00:00] Jill Brook: Hello fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your hyper adrenergic host, and today I'm excited to discuss some brand new research findings about long COVID and POTS with a woman that I admire so much because she is a powerhouse of progress for POTS patients.
Marie Claire Seeley is a clinical nurse consultant and researcher at the Australian Disautonomia and Arrhythmia Research collaboration. She is the CEO and founder of the Australian POTS Foundation. She's a PhD candidate and her research team is one of our POTS research grant winners. Today, she's going to tell us about that project, how it's going, and what her team has learned so far.
Marie Claire, thank you so much for speaking with us today.
[00:00:48] Marie Claire Seeley: Hey Jill, it's lovely to be back with you and thank you for having me on.
[00:00:53] Jill Brook: You are an incredibly busy woman. Since we last spoke to you here on the podcast, I believe you have finished founding the first and only Australian POTS nonprofit. Organized and hosted the first POTS medical conference in Australia. Worked clinically with hundreds of POTS patients and long COVID patients.
Completed and published some research on POTS and long COVID, conducted a campaign to get POTS, its own ICD code in Australia, and probably much more that I don't even know about. So first, I would just like to thank you on behalf of the POTS community for doing so much and ask are you tired yet?
[00:01:33] Marie Claire Seeley: Yes, I am tired, but I'm also excited. It's been a really. Busy couple of years and we can't believe how much this work has really expedited in those couple of years. So, it is good to look back on all those things that we are doing a bit tiring, but, you know, we are getting a lot of help starting to come out of our campaigns, so we're looking forward to bringing more people on board.
[00:01:57] Jill Brook: Okay, so let's talk about your research study on long COVID and POTS. About two years ago you won a Standing Up to POTS research grant to study POTS in long COVID. Can you tell us what made you interested in doing that originally.
[00:02:13] Marie Claire Seeley: Yeah, well, it was a bit of a serendipitous thing. I had been interested in POTS for many years, having my own experience of it. I had toyed with the idea of doing my PhD but I couldn't really find anyone who had an interest in the area and I wanted to make sure if I went into a PhD, I found a supervisor who knew at least as much as myself or more you know, preferably, and that's a bit difficult to find and especially in Australia. And so I had left it for many, many years and then this opportunity just came out of nowhere. I actually had moved to a new city, which is Adelaide in South Australia. One of my daughters who also has POTS, wasn't doing so well, and I found out about Professor Lau, went to see him with her just to try and get her on some better treatment.
And through that exchange he showed a lot of interest in my own background. What I'd been doing, I was a nurse and had done some research in other areas, and from that I suddenly found myself faced with the question of did I want to do a PhD? And I initially, you know, decided that I was too old for that.
But he convinced me otherwise and I embarked on it. At that point, COVID was just starting, so not only was I kind of starting a new role, but it was right in the middle of the COVID pandemic. And it seemed natural to both of us, professor Lau and myself, that we're probably going to see a, a range of people presenting with POTS because anyone who works in the space knows that viruses can be a trigger for the condition.
We had started a clinic by that stage as well, and Dr. Lau worked for many years in POTS, but we decided to put together a multidisciplinary clinic and sure enough, even though we didn't have COVID very active in Australia at that time, we had a lot of returning Australians from overseas who had been caught up in the first wave over in Europe.
And they were starting to present to us with post COVID POTS. And so right at that time we realized I needed a project and funding. We weren't originally looking at long COVID but when we saw Standing Up to POTS advertising we decided that yeah, this might be a good project for us to look at.
And so we submitted it. And within 10 days of submitting it, we found out we had funding. And that was just a remarkable thing for us. And as I said before, it seemed very serendipitous and that really gave a future direction for my PhD work, and it's turned out to be a fantastic thing.
[00:05:01] Jill Brook: And what was your study methodology?
[00:05:04] Marie Claire Seeley: Yeah, we wanted to have a look at the prevalence of POTS in people developing long COVID. I don't even believe back at that time we had that name for it. I think we were looking at kind of the general post COVID Syndrome. Long COVID terminology was just starting to be used. And now in the medical world, we tend to use the term post-acute sequela of COVID 19 or PASC. So we wanted to determine what is the prevalence and to determine that you have to have a certain number of patients that you investigate and go, okay, here are 200 COVID patients, how many of them actually have POTS? So that was the primary outcome of our research that we were targeting.
But we did it in a couple of stages. And our first part of that was to try and compare POTS patients with long COVID patients. And also against controls, and they are healthy adults. The reason why we used those comparisons was we want to make sure that we are not just looking at a population of people that have had COVID and discover that, well, everybody has a little bit of autonomic dysfunction.
We wanted to compare to other people that may not have it and go, well, how prevalent are these same symptoms in so-called healthy adults as well. Because even amongst healthy population, there may be similar symptoms that are lower level. And so we need to know what is normal in the normal population.
So the first part of our study was to compare that in a smaller group, about 33 in each of those cohorts and to go, okay, are there differences between the POTS, the long COVID and the healthy adults?
And we deliberately actually recruited our POTS patients quite quickly because COVID wasn't a thing in South Australia. We managed to keep it out for quite a long time. So we didn't have large scale COVID infections here really. And. You know, until about a year after most other people in the world, that enabled us to look at POTS patients who had developed their POTS very definitely from things other than COVID.
And that was, well, very fortunate that we're in that position. So those waters weren't muddied at all. Whereas obviously our long COVID patients had had COVID. Some of our controls did end up having COVID before we tested them, and that was beneficial actually because then we could say, well, these people had COVID and we made sure that we didn't test them until at least three months after their COVID, and then we could see whether they had developed similar symptoms to some of our other long COVID patients.
[00:07:58] Jill Brook: Great. Okay. And so what were the results that you found?
[00:08:02] Marie Claire Seeley: Yeah, so the first part of that study is complete, and that's the bit where we compared the POTS patients with the long COVID patients with the controls. And so we did some pretty thorough testing. We had a wonderful group of people volunteer for that. And some of the long COVID patients even traveled a long way from interstate to come and we would assess 'em in our clinic and we did a whole stream of assessments that included using the special equipment to look at their hemodynamic profile. So that's looking at their blood pressure from beat to beat and their heart rate from beat to beat and seeing what happens when we put them through a range of exercises and how their body responds to that. And we also looked at their sweat function. We looked at their cognitive function. We asked them a whole stream of questions through surveys, which looked at their quality of life, their disability, the symptoms that they were getting.
They also underwent some blood tests and some urine tests. We are collaborating with a great group in America to look at some of the profile of those. But the first part of the study where we looked at their autonomic function and particularly at whether they had POTS, is complete.
And so we found, I guess, what we would have expected to find really. In total we've tested around about a hundred long COVID patients. But even in that first part of the study where we just looked at 33, there was a really high percentage of POTS. And in that first study part, there was about 81% of those with long COVID met the international criteria for POTS.
They looked very similar to our POTS patients, so they had the same symptom profile and that's pretty important because I think, you know, in our world of POTS, anyone who's listening to this podcast is probably pretty familiar with the condition. We know that it presents with a lot of symptoms, and those symptoms are quite broad ranging, and they include things like brain fog and fatigue and gastrointestinal problems and bladder problems. But a lot of people outside of the POTS world don't know that. Even if they've heard of POTS, a lot of doctors would go, oh yeah, that's that fainting condition. They don't understand that POTS patients have quite substantial issues with brain fog and inability to concentrate.
They find it hard with fatigue levels and those kind of things aren't so well known outside of the POTS world. And so what we showed in our study was that it was almost exactly the same when you looked at the POTS cohort with the long COVID cohort, you could almost not distinguish between the two.
They had very similar, if not exactly the same, fatigue levels across the board. They had similar symptoms of the palpitations, the shortness of breath when they stand, when they do activities the racing heart obviously. And they had very similar quality of life changes. So the people with long COVID who presented in our study had all been working full-time before they got their long COVID apart from I think it was one or two who were at retirement age and most of them were unable to return to any work, and that was due to their extreme fatigue and their symptoms, and that really reduced their quality of life.
And so when we looked at their quality of life survey responses, they looked almost exactly the same as the POTS patients. And in fact, the only difference between the two cohorts when we looked at them was that the POTS patients had had their condition a lot longer, obviously, than the COVID patients.
And so in some markers, the POTS patients had a little bit more positivity about their condition, and that was probably because they had come to understand it, how to manage it, and they'd lived with it for a bit longer than the long COVID patients.
[00:12:20] Jill Brook: So that's really interesting. What I'm hearing you say is that you have a pretty high degree of confidence that what you're seeing after COVID really is true POTS and not just something similar. Is that correct?
[00:12:33] Marie Claire Seeley: Yeah, and look, we always have to be a bit cautious in research. I mean, one of the biggest problems with POTS is that it's, despite everything that we do know about it, we actually still don't know much about it. We describe it, it's been described for over 30 years and we have lots of studies that describe things about it, but we still don't understand the biomarkers or what is happening at the cellular level.
So we have little bits of information about the condition, and that makes it a little difficult for us then to really say, is this exactly the same as this other condition? Even within our POTS population, we see a very broad range of presentation. So, although I say our POTS cohort looks like this, we are talking about a large group of people that we kind of get all the symptoms from and go, well, generally this is what this group looks like.
But when you pull out individuals with POTS, you get very different profiles. So one person might have extremely high heart rates and no fatigue. We occasionally see that, and that's quite, you know, startling in comparison to somebody who may not have even as higher heart rates, but has life changing fatigue cannot get outta bed.
And that's the broad range and spectrum of this disorder. So there's a lot of changeability within the cohort. And that is the same with long COVID. We definitely see long COVID patients who don't meet the criteria for POTS, but what we found was that even those that didn't meet the criteria for POTS, they all had symptoms of autonomic dysfunction.
And we can test that by using what we call the Composite Autonomic Symptom Scale. So the Compass 31, and a lot of your listeners will be familiar with that. And that tool gives us a little bit of feedback on autonomic dysfunction across multiple domains. So we look at the gut, at the sweat, at the heat tolerance, at dry eye, dry mouth, as well as heart rate or the Orthostatic stuff of can this person tolerate standing up.
And even those that didn't meet POTS in the long COVID cohort had quite a lot of symptoms across the board. So, it looks like autonomic dysfunction is very common and almost all of the long COVID patients had some element of autonomic dysfunction, and yes, most of them met the criteria for POTS.
So we would say, clinically they look very similar to us. We still don't know what's going on underneath. We don't know is it the same mechanism? Is it that the virus triggers the same response in all these people? Or is it that it's slightly different in each person? We still need to find out what is going on there.
[00:15:35] Jill Brook: And what about the demographics of those people? Did your long haulers have the same gender breakdown and age characteristics compared to pre COVID POTS patients? Is it the same demographic that seems vulnerable?
[00:15:50] Marie Claire Seeley: Yeah, so that was really interesting to us. You know and most people do know that that POTS does tend to come out in the younger population. But we believe, and I think anyone that works in this area probably knows too that the condition is so poorly recognized that we can't be sure about, you know, what the real prevalence of it is amongst the different age groups.
And that's because once medical practitioners have in their mind that this condition belongs to a certain subset of people, that's the only people that they really investigate for it. So we do think that there's probably a lot of people being missed with POTS out in the world.
And they may be older, but we don't know that yet. Now, what this gave us the opportunity to do was look at a whole group of people who we know had the same trigger. So we could get all these people that had confirmed COVID and then look at them. And what we did see was that there was a broader range group in the long COVID cohort than in the POTS.
So we were seeing people and we continue to see people with new onset symptoms after COVID infection that are up to their sixties and seventies. Now the majority of them were younger, so in their thirties, forties, and we have, of course, teenagers as well. They weren't allowed into our cohort because our study had to be people over the age of 18.
But generally the majority of the people we saw were women of around 80%. That's almost exactly the same as what's reported in POTS. And they were generally sitting around the 30 to 40 years. But we were seeing, and we continue to see some people who are coming in to see us who are in their sixties and seventies, who have their first onset of autonomic dysfunction.
So that's interesting to us. And I'm not convinced that that's going to be different in POTS. As people become aware of our clinic, we are seeing more and more people referred to us who are older with Autonomic dysfunction, which other specialists are starting to pick up because they're becoming more aware of the condition and they're going, Hey, this person's having all these different weird symptoms. We can't figure out what it is. Could it be autonomic dysfunction? They come and see us and sure enough, we are starting to see people in their sixties and seventies with autonomic dysfunction that would've otherwise been missed I think.
[00:18:20] Jill Brook: That's so interesting because as you say, about 80% of your long haulers had POTS. So what's going through my head is if you're going to have to have all the dysautonomia symptoms, you might as well have POTS so that somebody can actually do an active stand test or tilt table test and actually diagnose you with something like POTS so that you can get some help in some treatment, because as far as I know, it's so much harder to get anything diagnosed in this space if you don't have the actual POTS.
[00:18:54] Marie Claire Seeley: Yeah, yeah, that's right. We just keep coming back to the same old thing of, we just don't know enough about these conditions, and that's because POTS really has been put on the back burner in terms of interest in the medical community. And so, You know, and I know that a lot of people that get diagnosed with POTS get diagnosed because they figure out they've got it right?
They know that something is wrong with them. The medical practitioners are telling them there's nothing there because standard tests don't pick it up. And they go pursuing and doing their own research. And that's the beauty of the internet age, is that people actually become empowered to do that.
They find out what they've got, then they seek out the specialist to diagnose them. So you can imagine then that gives us what we call a referral bias. So that means that these people have to have certain qualities to get diagnosed. One, they have to have some level of socioeconomic standing to be able to have the education background and the access to be able to explore and find out what their condition might be.
And then they have to have the means to seek out the specialist to diagnose them. And so that means that we're probably going to see a certain type of person diagnosed when that is the way that they have to go about it. And that means that we may be missing a whole bunch of people that get POTS who don't have that ability to do that.
And they might be people from different walks of life, different diversities. So we still don't have a clear picture of really what the prevalence is of this condition across the different ethnicities, races, socioeconomic standing at the moment. We have a really, what we would call skewed diagnosis rate, and we need a lot more work done in this space to really understand who exactly does get this condition.
[00:20:52] Jill Brook: Right. It's so sad to think of those people who are getting ignored. Now one last question before we move on. I am wondering if your cohort of post COVID patients had the common POTS comorbidities like Mast Cell Activation Syndrome, or hypermobility symptoms, and I know that wasn't a focus of your study, but did you happen to notice those things?
[00:21:18] Marie Claire Seeley: Yeah. I mean, fortunately, as you said, when we were developing the study protocol, we kind of as almost as an afterthought put in a questionnaire, which is a self-reporting hypermobility questionnaire. It's a five point question that just asks you historically, are you able to do these few things?
Could you bend your thumb down to your forearm and could you touch your palms to the ground? And that tool is, it's not perfect, but it gives you a reasonable understanding of the level of hypermobility amongst a group of people just from the self-reported response to that survey. We noticed immediately when we started doing the study as we started enrolling the long COVID, that, yeah, there seemed to be a picture of hypermobility that wasn't quite as frequent as the POTS patients, but was definitely there.
Now, the problem with that questionnaire that we see clinically is that men don't tend to self-report hypermobility as accurately as women do. And so by that we mean we would get male long COVID patients who had scored zero on that hypermobility questionnaire. They're like, no, no, no, I don't have any of that.
But when we would ask them and test them in the actual clinic, we would observe that they actually did have hypermobility and for instance, would get them to put their thumb down to their forearm and they could do it, but they'd answered on the questionnaire that they couldn't, and they'd often go, oh, well I'd never thought about that.
So what that told us was that people under report their hypermobility if they're not aware of it, and particularly males. So we did actually start doing a bit more, paying a bit more clinical attention to the hypermobility. And that means that we did the assessments. And once we started doing the assessments, we found that there was more hypermobility than what had initially been reported.
It is still not quite as strong. So in our POTS cohort, At our clinic out of just over 800 people that have been assessed, around 70% are hypermobile, and around 30% of those would actually meet the criteria for the hyper mobile Ehlers- Danlos Syndrome, and the other 40% would meet the criteria for the hypermobile spectrum disorder. In our long COVID cohort that sits more around the 40 to 50% that are hyper mobile with the same kind of split between the what we call the hyper mobile spectrum disorder and the hyper mobile Ehlers-Danlos Syndrome. So that is still a high level, it's more than what we saw in the controls. So in our control group, hypermobility was around about the 10% mark, and that's probably where it sits in the general population, although we don't have really clear data on that yet. We think hypermobility in the general population could range anywhere between 10 and kind of 30 or 40%. But it seemed very striking to us when we're assessing these long COVID patients, that hypermobility was there and also a reported tendency of some orthostatic intolerance in the past.
So it was very common for people to go oh you know, I was well, I've never been particularly unwell, but I, I do remember that I had a bit of a tendency when I was young to get dizzy when I stood up too quickly. Or I might have had a couple of faints when I was a teenager. That kind of stuff was there in the background, but not really prominent until they got COVID.
And so we think that maybe this hypermobility and slight orthostatic intolerance in the past was a risk factor for developing long COVID in these patients.
[00:25:20] Jill Brook: Ah, interesting. And I know that one question a lot of listeners are going to have is: does the vaccine seem to help prevent long COVID or post COVID POTS? Again, I know that your study was not designed to test for that, but I believe you had a number of subjects come in before a vaccine existed, and then the rest of your study finished after it was widely administered. So did you get any signs of whether it made a difference, like, was it a lot harder to find post COVID patients after the vaccine was out, or were there any other signs of whether it made a difference?
[00:25:58] Marie Claire Seeley: Yeah, look, all we can talk about is association, right? So in our study, we can look at what people had and kind of come to some conclusion about associations. We can't say definitely that something is causation. So I just want to make that clear, but for sure what we can say is that we saw a lot of people who were fully vaccinated.
And in Australia that meant that they had had at least two vaccines plus a booster. So they would've had, in total, three vaccines against COVID, who still got the infection. And we all know that the vaccines don't stop necessarily infection, but what they do is reduce the mortality.
So that is death rate after getting COVID, and they also reduce the severity of illness in people, but they don't necessarily stop people from actually getting the infection. So we saw a lot of people who were fully vaccinated who got the infection. The majority of the people that we saw had very mild COVID infections, so at most they might have ended up in bed for a couple of days with aching flu-y type symptoms.
We only had one that was admitted to hospital and they didn't require any oxygenation. That was in the first part of that study. We've probably had one or two since then that had some kind of an admission, but you know, well over 90% of our patients had very mild acute COVID infection and still developed long COVID.
And our findings are very similar to those in most of the international studies that have been done around long COVID and particularly long COVID and autonomic dysfunction. All of the studies have essentially found that there does not seem to be a protective factor in terms of severity of illness with getting long COVID.
So even those with very mild illness can develop long COVID and even those who are vaccinated do, and a lot more work needs to be done in that space. What that result and what these associations tend to suggest is what we all kind of suspect anyway, and that is that this is not the virus per se, causing ongoing injury to the body, but it is the virus triggering an immune reaction in the body that causes damage. And you know, that makes sense, right? Because it's been talked about for a long time and we have lots of other evidence that POTS may well indeed be an autoimmune condition and therefore it would make sense that in a person who gets a virus, if they've got an autoimmune condition, what happens is that their body actually is super vigilant and becomes overreactive to that virus in order to protect the body. It goes a little bit overboard and it damages the body itself. So it's your immune defense damaging the host.
And in that process causes a bit of damage to the autonomic nervous system, which results in all these symptoms. And we think that's exactly what's happening with the COVID virus. It triggers an immune response of some type that causes autonomic dysfunction.
[00:29:23] Jill Brook: Right. So that's a bummer. It sounds like it doesn't take that much to potentially get that whole immune response going. So based on your findings, what do you consider the main conclusion of your study so far? I know you still have a couple parts of it left to do, so more information is still coming out, but what can you conclude so far?
[00:29:46] Marie Claire Seeley: Yeah, so definitely what we can say in the hundred that we've tested that POTS is really common in long COVID, that long COVID is indistinguishable from POTS in terms of symptom profile. And so I have to be clear on that. We don't have biomarkers, so we can't tell the underlying mechanism.
But in terms of all the symptoms that these patients present with, it looks pretty much exactly like what we see every day in clinic, and that is a whole group of people coming in with a trigger that results in broad spread of symptoms and particularly autonomic dysfunction that predominantly affects their ability to control their blood pressure and their heart rate, and has a lot of effect on the gastrointestinal tract as well. So we see that same gastrointestinal dysfunction in these patients. We also see, you alluded to this before, Jill, the mast cell type things. That's pretty difficult for us to determine in Australia. We don't have the same tests available to us to actually determine Mast Cell Activation Syndrome. We really only have the tryptase test here that we can use. But in terms of symptoms, we see new onset allergies, food intolerances, flushing to the face, skin allergies, new onset asthma type symptoms.
So all that same stuff that we see in our POTS patients, we see in the long COVID patients. So our conclusion is that essentially we believe that that long COVID bears a very high resemblance to POTS and that this could be the same condition.
[00:31:29] Jill Brook: Great. So how are your post COVID POTS patients doing now? Have you been treating them like any other POTS patients? Are they improving?
[00:31:39] Marie Claire Seeley: Yeah, so you know, initially when we did this study. We just enrolled people as a study, and so it wasn't us treating them in the clinic. What we found very, very rapidly was that basically they didn't have access to kind of any other help in Australia. There are only a few specialists who really specialize in treating POTS in Australia, so we would be diagnosing them in terms of they would understand through the study testing that they had developed a POTS type presentation and would explain what POTS was. We gave them information on it and then we'd send them away and three months later they'd be contacting us and saying, my GP hasn't been able to find anybody to treat me.
Can you help me? So in the end, what we offered for our study patients was to have a consultation after their study, if they did meet the criteria for POTS. And so we have actually managed now to follow quite a few of these patients in our clinic. And I would say it's very like POTS. You get these people that come in, we have a whole range of medications that we can use. We first use lifestyle advice and we get them to water and salt load and use compression and avoid triggers and all that stuff. And you know, that initial change in habits can really help them. And we see some patients improve well just on those lifestyle measures.
But just like with POTS that stuff seems to make a marginal difference to people. They often need some medication to really help them, particularly if they're unable to work, and many of these patients were struggling even to do daily activities such as have showers. So medication then is a trial and error basis, and we see the same thing in our POTS population. You can give one person a drug like Ivabradine or Coralan and they have a remarkable response across the board. You know, they might feel less fatigue. Their gut function even sometimes gets a bit better on Ivabradine. They might stop fainting. Those that faint, some of them get a bit of energy back.
Some of them even return to work. Others would put on that medication and they had very limited response. And then we would try another medication like midodrine. We might use both. So we get the same changes or at least unpredictable response I would say. The most of the patients respond very similarly to POTS.
That is, they all get some improvement. I think that improvement comes from understanding their condition and if you don't know what you've got and you just completely debilitated by fatigue, exhaustion, you feel like you're going to die every time you stand up because your heart is racing. It's palpating you know, those kind of symptoms can really debilitate people if they're not empowered to understand what they are. Once you explain how the autonomic nervous system works, why they're feeling what they're feeling, that this is fight and flight hormones racing through their bodies, that it's okay in terms of their heart's not going to suddenly stop. If you alleviate those fears then they have a lot more ability to manage those day-to-day symptoms. Plus you give them all the lifestyle changes. A lot of people don't understand why they can't stand in a hot shower and wash their hair and why they end up sitting on the floor.
And so if you really explain all that, they can make adjustments to the lifestyle routines to accommodate that. So even that stuff improves them. And then sometimes the medication is amazing, you know, and one story I like to tell because it gives me a lot of hope. And we do see this, you know, not all the time, but we do see it commonly enough that it makes us go, wow, you know, we can really help people. We had a young doctor come in not long before Christmas. He was a ENT or a ear, nose and throat surgeon, and he had developed long COVID previously. Well fit all the rest of it and he got to the point where he tried to return to work and he couldn't undertake surgeries because he's standing in a theater standing still with POTS.
He didn't know he had POTS at that point, but he was exhausted. He couldn't think properly. He felt that he wasn't safe to do surgery. His superiors felt he wasn't safe to do surgeries and eventually he ended up having to step down from his work and by the time we saw him, he'd been something like four months being unable to work.
And fortunately he came into our study, we did the testing. He definitely had POTS. He had very marked what we call hyperadrenergic responses. So that set really strong fight and flight responses in his body. And so we gave him all the advice that we give everybody. And it was literally the Friday before Christmas, so we kind of saw him last thing in the year. We gave him all the advice. We actually started him immediately on Ivabradine, because we felt that his heart rate needed to be moderated down a bit. And we came back after Christmas in January, he came back to see us and he was remarkably changed.
He still had POTS, he still was needing to manage that, but he returned to work in the first week of February and he's been able to go back to full-time work. One of the benefits for him was that he's a doctor. So once we explained what we understand about the condition, he was able to take that further himself.
He was well able to kind of assess his own symptoms and adjust medications with our advice around that. So there, there was some benefits to his medical background that probably expedited his ability to get back to work. But what it showed us is one medication and a bit of advice can change somebody's life.
He was four months of not working for a doctor is similar to any other person. People these days live with mortgages that are completely dependent on them working every week and getting their income, and once that's gone, people find themselves in difficult financial situations, which puts immense stress on them and their families.
And that's the situation for most of our long COVID patients who can't access any kind of government subsidies or anything. Because their condition isn't really that well recognized and nobody knows if it's permanent. So they live in this terrible limbo, unable to get to work but unable to get employment benefits. So suffice to say those kind of stories and we do see them, you know, not everybody, but we see people improve pretty regularly. They really gives us hope and also drives us to really advocate that we gotta stop telling long COVID patients that there's no treatment for this.
We don't believe that's true. There are a lot of people that can have some level of treatment of their autonomic symptoms that will improve their life and their capacity to return to work.
[00:39:03] Jill Brook: Well, I'd love to get into that. In the United States right now, the response to long COVID seems very mixed. We have some wonderful experts studying it, and I think a few hospitals have created programs dedicated to studying and treating long COVID. But then there are some other, sometimes prominent physicians and researchers who are still saying that they do not believe that long COVID is a real thing. And so you have been presenting your findings in articles, posters, conferences, and I'm just wondering what kind of response do you get from the health authorities?
[00:39:38] Marie Claire Seeley: Yeah, look, so my other hat is the Australian POTS Foundation, and as part of the foundation we felt that we needed to advocate on behalf of long COVID patients as well as POTS patients because the majority of them, as far as we could see, you know, fell under that umbrella of autonomic dysfunction.
And so we collected some information. Actually we put out a survey that anyone with long COVID could respond to, and in that survey we asked them about their experiences of seeking help for their condition around Australia. And you know, it makes for very sad reading. Really just tragic stories of how people have been treated.
Not dissimilar to anyone who's had POTS. people being confronted by doctors who tell them that this is all in their head, that it's psychosomatic, that they're just essentially got anxiety and stress and being really dismissed. And in fact, only a couple of weeks ago in our study, we had some people from Sydney who drove, I mean, it's a long way from Sydney to Adelaide.
These people are very sick, but they take all measures to try and get help. And we had a young woman. When I say young in her forties, who was telling us she had a very high power job for a bank you know, marketing executive, and she got long COVID, hasn't been able to work since, and turned up at a long COVID clinic in Sydney and was told by the head of that clinic who was consulting with her that this was just completely psychiatric. And she had particular problems. A lot of these patients when they're upright, can't think very well because of the lack of blood perfusion or blood going to their brain. She was not allowed to lay down during the consult, even though she requested to, you know, just very poor behavior on behalf of clinicians.
So that's the one side that we see that usual story of I just think very poor behavior on behalf of the medical profession. However, Australia has just had a parliamentary inquiry into long COVID, and I think just the fact that that inquiry happened was really beneficial. And there I was reading through some articles we presented to that inquiry, both we submitted as the Australian POTS Foundation, and there were hundreds and hundreds of submissions from different groups of people and individuals to the parliamentary inquiry, and they would call certain professionals before them to hear from them. And Professor Lau got to speak in front of them about the prevalence of autonomic dysfunction.
I think that was relatively new to a lot of the doctors in that room. And again, we get that kind of response of, oh yes, but long COVID patients are different because they have this terrible fatigue and brain fog and they have unusual inflammation that we've not seen in other people that doesn't turn up on tests, but when you really explore it, they've got these other kind of asthma type syndromes.
And we're like, yeah, no, we see all that all the time in our POTS patients. So just trying to get across to them, you know, they don't even know POTS, let alone long COVID. So first you have to educate them around the fact that this condition looks the same in other people that get it from other things other than long COVID.
I think one of the most encouraging things I have seen from the parliamentary inquiry was a few doctors one of the MPs who was on that inquiry is also an infectious disease, Dr. Ananda Raja, and she made some comments, which were published in the Australian newspaper here this last week about the need for doctors to really do better in terms of listening to these patients and that she believes, it seems, from what she said, that this possibly is an autoimmune disease, that she's seen it herself in her neurological presenting patients. And there's been a lot of discussion from that group around needing to validate the experiences of long COVID sufferers.
So I think we see similar stuff to America. I've sat in conferences here in Australia where I've heard prominent cardiologists say, we need to stop talking about this condition, because we're just putting ideas in patient's heads. And I think that's a shocking thing to say and we need to do better in that space.
But on the other side, I see some hope because I see that at least the Parliament has taken on the inquiry that we are getting a lot of voice out there and that there's a general movement I can sense that across Australia in terms of medical professionals starting to realize, no, there's way too many people with this condition for us to ignore it any longer. So hopefully the tide is turning in that way.
[00:44:49] Jill Brook: Well, thank you sincerely for all you do to help study POTS, treat POTS, and advocate for patients to get better treatment. We are so lucky to have your brain power and dedication working on helping us all live better with POTS. Much, much gratitude to you and your team.
[00:45:08] Marie Claire Seeley: No thank you. And look, we are really privileged to be in the position and I think for your POTS patients who are listening out there. I know there's a lot of sense in the community of, well, how come there's so much focus on long COVID? I think my encouragement to everyone would be, this is a awesome opportunity however devastating the pandemic has been, and we recognize that it is.
The benefit to the POTS community is going to be immense in terms of our ability now to get a broad spread of high level researchers across the world, really investigating what essentially has been one of the biggest medical mysteries of at least the 20th century and moving now into the 21st century.
And I think that this is only going to benefit our community across the whole domains of long COVID and POTS.
[00:46:00] Jill Brook: Absolutely, and I know that you have a part two of this study that you're still working on, and we can't wait to hopefully have you back to share more results.
[00:46:10] Marie Claire Seeley: Wonderful. Thanks a lot, Jill. Appreciate it.
[00:46:13] Jill Brook: Thank you so much. Okay, listeners, that's all for today, but we'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.
