Episode 9 – POTS Experts with Marie-Claire Seeley Link - https://tinyurl.com/vnuynw2d

00:00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research in empowering patients to not only survive but thrive. This is the Standing Up to POTS podcast.

00:00:28 Jill (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook and today I'm excited to discuss POTS with a very special expert who has a lot of great perspectives to share. Marie-Claire Seeley is a clinical nurse consultant at the University of Adelaide in Australia at the Center for Heart Rhythm Disorders. She works clinically with POTS patients and is also a POTS researcher. In fact, she is one of the research grant winners from this past year here at Standing Up to POTS. Her team at the University of Adelaide has done exciting work on various aspects of POTS. For example, they've used high tech approaches to studying brain fog and a bunch more. I'm not sure how much she can talk about their new research that's happening now, but I'll sure ask. Clinical Nurse Consultant Seeley has also founded the first non-profit organization for POTS in Australia, so Claire thank you so much for speaking with us today.

00:01:31 Marie-Claire: Thank you, Jill, and thank you for that introduction. It's great to have a podcast that really addresses the POTS community and their needs, so thank you for providing that.

00:01:41 Jill (Standing Up to POTS): My pleasure. So since many of our audience, including me, does not know very much about Adelaide, Australia, could you just start by telling us a tiny bit about your city, your university and the Centre for Heart Rhythm Disorders where you work?

00:01:59 Marie-Claire: Sure, so Adelaide is a capital city of a state called South Australia, and not surprisingly, it's in the south of Australia. So if your listeners want to look at a map of Australia, you can see what we call the “Great Australian Bight” which looks like a shark took a chunk out of the bottom, and our state is just kind of to the right or to the east of that. Adelaide's quite a small city. We've got about a million people in our city. And really, our state thrives off the tourist industry and particularly wine, we're really well known for wine, and we have several large wine areas, and so that's why people come to our state. It's a nice place to live. Now Adelaide University is one of our what we call “sandstone universities”. So it's one of the group of eight along with Melbourne University and a few others in Australia - it's one of those original universities that was founded right back when Adelaide was first founded. And the Centre for Heart Rhythm Disorders is a research unit within the university that focuses on heart rhythm disorders. So for those who don't know, they're disorders of the heart that come from the electrical defaults that sometimes happen in our heart, and they're quite a premier research group. Professor Prash Sanders is the head of that group, and he’s well known for his work around the world. We'll talk about a bit later, I'm sure, but cardiologists who look at heart rhythm disorders are often the first people that diagnose POTS and that's because most people’s symptoms center around a fast heart rate and so often doctors refer them on to these specialists and that's why our Centre has an interest in POTS.

00:03:43 Jill (Standing Up to POTS): So just for reference, are there a lot of different heart rhythm disorders and is POTS a big one? Like when you see a young person, do you think, “Oh yeah, that's POTS.”? Or are there a lot of other heart rhythm disorders a young person might have?

00:03:58 Marie-Claire: Yes, so there are quite a few heart rhythm disorders. In terms of young people, we don't see too many heart rhythm disorders. There's a couple that are quite prominent. If you see a young person with a fast heart rate, we would consider a condition called SVT which can occur in young people. We don't see many young people at our clinic, really the largest amount would be kind of older people with arrhythmias that develop as you get older. When we do see young people, we have to consider whether their arrhythmia is POTS. Now POTS is technically not an arrhythmia. So it is a fast heart rate, but it is not arrhythmic and that's one of the things that we look for in the clinic. So if somebody is coming to us because the doctors said this person complaining of palpitations or heart skipping beats and so on, we will put a Holter monitor on them for two days. We'll look at that Holter monitor to exclude arrhythmic disorders, we want to make sure that they don't have one of these other ones. If they don't have that, and they are telling us that these fast heart rates happen when they stand up, that they seem to be OK when they're sleeping at nighttime. But mostly it's associated with their posture, then that's highly suspicious of POTS for us, and then we look a bit further into that.

00:05:22 Jill (Standing Up to POTS): So what made you and your team get interested in POTS and have you always been or is it a relatively new thing there?

00:05:31 Marie-Claire: So there's probably 2 parts to that question. I answer on behalf of so that the person at the Centre of Heart Rhythm Disorders who really premieres this research or leads the research is Associate Professor Dennis Lau, and he's an electrophysiologist cardiologist and he got interested in it I think really around about five or six years ago. He just noticed these predominantly young girls and we must say right up front, we get people right through to their 60s that we diagnosed with POTS so this is not only a young girls’ disorder. It affects everybody of all ages. So he saw some of these people coming in and he realized that their lives were quite miserable. Some of them had terrible situations - they had to leave school, their families had to give up work to look after them. Nobody knew what was wrong with them. Nobody seemed to really be caring for them, and he's a very compassionate man. And he was like, “yeah, I I need to try and figure out how to help these people.” At the same time, there was a general physician at the hospital. This is the Royal Adelaide Hospital where he was working and she had an interest in it and so they started doing some research together and that was Doctor Rachel Wells and some of your listeners may have read some of her papers that she wrote with Associate Professor Lau. And so the work just kind of snowballed from there. It was appropriate to go with our research group. It was of interest, and particularly it was of interest to we call them EP's or electrophysiologists, because they were interested whether these tachycardias can cause difficulty with the heart later on in life. Nobody really knew that. Everybody had always assumed that, “Oh it's tachycardia. You're fine, just get on with life.” But nobody actually studied that. So that's something that was of interest for them to pursue, and they're still pursuing that. In terms of myself, I only met Dr. Lau a year ago and we met because I have four children and three of them suffer with POTS to varying degrees and one of them had not been so well and - I should tell our listeners right back from the start, I got POTS when I was 24 and I had got a virus and I went from being a fit healthy adult to almost bedbound for a few months and then quite unwell for a couple of years. And it took me some years to get back to a level that I could function. It always sat there as a problem for me, but that was back in 1994, I guess. And back then it was “Well, you're a woman, you're young, this is anxiety,” and I knew it wasn't my husband knew it wasn't. So we pursued that and it's really what triggered my interest in research was my own personal research to find out what the heck was wrong with me. And I also have Ehlers-Danlos which a lot of your listeners will know about and so I had all those accompanying problems with gastric dysfunction and joints and pain and so on. I. I have kind of tried that journey personally and as my kids developed some of these symptoms and I had one child who was particularly unwell with gastroparesis, so she became a teenager and for your listeners that's a condition where the stomach just doesn't move on and it's not common, but we frequently see it in people with Ehlers-Danlos and POTS and it was really her condition and seeking out help that really drove me to more research and that's when I really discovered that our family, all these dislocations and problems with our joints was this condition that I didn't know we had. I was at that point an emergency nurse, and that was my passion and my love. I was a little jaded by the medical system and I didn't wanna get in back into that POTS research area because I knew that a lot of people thought that it was all in our head and I found that confronting as both a nurse and as a parent and as a sufferer of the condition that I didn't want to put myself in a position where I was fighting people all the time. So I kind of put it on the backburner. And then I did my masters research in another area and then I was just going along with life quite happily. My kids were kind of managed OK and then I got very very unwell about two years ago. It all just blew up. My POTS just got out of control. I had lots of bleeding issues which goes with the Ehlers-Danlos and I spent a couple of years in and out of hospital. And then finally at the end of that, when I kind of got better again, I took my daughter off to see Professor Lau, Associate Professor Lau, and he kind of gathered that I knew a bit. I tried to be a little quiet in the appointment, but I responded to a few things. He said, “You know about this condition,” and we had a discussion and he actually challenged me couple of months later, when we're talking about it and said, “Claire, you know a lot about this, you're a researcher, you're a nurse. There's so much you could do to help people. Come and help me.” So he had more patients that he knew what to do with and, they're complicated and they need a lot of multidisciplinary help. So that's what happened. I got on board and started helping and I love it and I love it because I can't necessarily do much, but I can at least tell people that we know what this is, that we understand the difficulty of it. And a lot of them - the best medicine that you can give them first off is believing them. That's a giant step for a lot of people and along the way, we hope we can improve our care to actually find some relief for people.

00:10:53 Jill (Standing Up to POTS): Wow, so if you had this starting in 1994, I believe that POTS did not even have a name until 1993. I don't think there were any patient advocacy groups. I don't think there was a WebMD. I'm not sure Google even really was a thing or well known, so I can't imagine what a good researcher you were to figure that out in 1994.

00:11:18 Marie-Claire: Well, actually. It was probably 1995 that I figured it out, but I actually had a daughter at that point who was unwell. It was probably 1996 actually, so it was a couple of years after and I was researching her and I just kept looking and I kept searching. There wasn't much around but there was a bit of chatter around this condition that onsets that causes this orthostatic intolerance, and I knew I knew that it was a post viral syndrome. I had absolutely no doubt that it was. It came on with a virus. It was - made me incredibly unwell. I knew I didn't have anxiety. I was very - I'm a country girl. Strong, sturdy. I had just spent two years working in Eastern Europe, actually, during the kind of post Iron Curtain falling down. So I was working in Yugoslavia in the war. I went through some pretty incredible experiences and I suffered from anxiety fortunately, so I knew that wasn't the issue and I knew that there had to be an answer, so I just kept going and pursuing it.

00:12:20 Jill (Standing Up to POTS): Wow, I'm glad you had the strength back then when there was so little support. So, what does an average day at work look like for you?

00:12:30 Marie-Claire: So we have a research part of our work when we have the clinical part of our work and then we have the POTS foundation and just at the moment Dr. Lau is setting up a separate clinic so there's little bits everywhere and it's always a bit of a juggle during our day to kind of manage them all. The Centre of Heart Rhythm Disorders is a group - I actually don't know how many people, but probably 20 to 30 researchers, so these are predominantly cardiologists doing their Ph.D. research under Professor Sanders. We meet together a couple of mornings a week, one for discussing journals, and the latest evidence from whatever aspect that we're all researching, and fortunately with the onset of Zoom or the emergence of Zoom, we're able to do that from multiple locations not only around Adelaide, but we have some researchers interstate as well. Wednesday morning we get together and we present our research where we're at and what we're doing so that side of it keeps us a little busy and we are all working on multiple projects together. So even though my research is in one area, we often are meeting about grants and about the next lot of grants and how to apply for them and how to start our research and then we're going to manage our research and that includes lots of phone calls to our participants and developing ethics so that in itself could be a full time job. But that fits into one part of the week. And then the other part of the week for me is about clinical, well, being in clinic, and so for me that's usually one or two days a week and I only take five or six patients a day. And now for those of you out there who have been to a clinic, you probably know a lot of doctors would see a lot more patients than that. So the way that we've set up our clinic is that I see a patient for at least 75 to 90 minutes on their first appointment. And that's because usually when people come to us with POTS, they have a whole lot of other conditions. In fact, I feel now when I see the referrals come through, even if they're not referred with the diagnosis of POTS or “could you investigate them for POTS,” I just need to look at their past medical history and I can usually go, ”This patient's probably gonna present with POTS,” 'cause they usually have a very common kind of array of comorbidities, and they are things like irritable bowel syndromes, food intolerances, migraine, joint issues sometimes, and a lot of women’s problems, so endometriosis and so on. And we see that cluster across the board. Although not all of that is documented in research, I think anybody who works in POTS clinically would recognize that kind of profile. And so it takes a lot to go through that. I go through every system with our patients. So we start with their head. We look at migraines, we look at temperature control, at sleep disturbance, photosensitivity. A lot of our patients have sensitivity to light noise, smells, chemicals. We look at allergy. We look at the bowel, the bladder, the reproductive tract, and then we do our assessments. Well, I do the assessments on them and then usually Dr. Lau will then come in at the end of the appointment and I basically summarize what those issues are for this patient, and then he looks at whether there's an indication for this patient to go further than just lifestyle management, we always start with lifestyle management. We educate them about the condition about what they can change in their life to maybe improve their situation, and then we see them six weeks later. And if those changes haven't modified where they're at then we look at whether medication is appropriate.

00:16:17 Jill (Standing Up to POTS): As far as you know, do you think there are any differences between POTS patients in the US versus Australia or in the treatment?

00:16:27 Marie-Claire: I would say I think there's probably not much difference in POTS patients anywhere in the world except for no POTS patient is the same as the next. Saying that, I often sit there thinking, “I wish all my passions could just line up and come into a room and I'd put them into separate areas and group them together.” I feel like when you're working in this area, you see a common type of patient, and as we know, POTS is caused by multiple things that we don't fully understand yet, and my experience is that you can definitely see patients who fall into one kind of category. They even sometimes look alike, so particularly we have one what we would call Fenner type of patient, who is often very long and lanky and lean and has certain signs about them that since they walk in the door, you know, kind of what this patient's life is gonna be like, what they're gonna tell you because you've seen it before. And then sometimes we see completely different. We see some people who are shorter and a little bit more chubby, or carry a little bit more weight that they can't lose, despite the fact that they don't necessarily eat that much and they feel unwell a lot and they often have issues with endocrine and they have issues with their reproductive system, so we definitely see different types and I think that's the same all around the world to everything I've ever read from or talked to about with anybody else. They see that same thing, and that's what makes it difficult to treat POTS. We need to really understand what are these different aspects that are causing this condition, because until we understand that we can't really necessarily easily diagnose the condition because it's so varied and broad so it's difficult for other people to diagnose it, non-specialists to diagnose it. But also we can't treat it that effectively because we just have to try different things 'cause we're not sure which thing is causing this POTS. But we are getting better at that, and as these people walk in, we certainly see if I get a young guy who comes in who had concussion and now has had symptoms, I have a better idea of how that young guy is probably going to respond compared to someone who comes in with their joints, or dislocating and issues with eating and so on. So it kind of directs the way that we look after them. Just in terms of is there a difference in treatment between Australia and America, yes definitely. And that comes from our health system. So for those who don't know, Australia sits somewhere between the United States and England in terms of our health system. So, England has a very socialized medical system. The NHS and over there basically everybody sits under that system and the system pays for everything, it's all free, but you may have to wait a long time for some things, and some of the things that you would get say in the United States as a treatment the NHS won't fund because unless there's good evidence that it absolutely works for this patient that it absolutely gives better quality of life then it may not be funded yet through the NHS. Australia medical system was based on the NHS so we have a socialized medical system called Medicare and that works really well. I've lived all over the world and I would say Australia has one of the best medical systems, in terms of its managing the best for the most amount of people. And we do have a private medical system that's a lot more robust than England, but not anywhere near what the United States medical system is. So, in America you get a lot of treatments used because you have this privatized medical system that gives a lot of incentive to research, to development of medications, and development of new techniques and new therapies, and we follow America. A lot of the time, that's where a lot of our research comes from. We see what they're doing. You guys get to trial it all, and then we go, “OK, that works for them. Let's bring it over here,” and then our Medicare system will sit down and go, “OK. Can we afford this therapy that they've been using over there now? We'll trial it and see if we can.” So what that means for our POTS patients is that some of the stuff they read out of the American research, they come to us and they go, “Hey, we've seen this and this works for them and they have this treatment. They have this diagnostic study can you do that?” and the answer sometimes says no, we can't test for a lot of the antibodies that are available for testing in the United States. The QSART tests that is talked about a lot is not available in every state. There's only a couple of places that it's available, and it's only available through public health, and sometimes there's a long wait list to get into those doctors that do those tests, and I'm not sure if this is entirely true, but anecdotally I've heard that one of the neurologists who does a lot of work with POTS in Melbourne has a four year wait list. So that's not just for POTS patients, he's a public neurologist, and so he sees people with all sorts of conditions. But if you have really bad refractory POTS and you need more help, you're gonna have to wait a long time to see him to get the therapies that he uses. So these things aren't routinely available for our patients and that frustrates them because they read, they might even attend some of these international conferences that are online. They hear what's happening in America and they don't understand necessarily why we can't have it in Australia, but in Australia our funding has to look at the diagnostic study and look at the cost effectiveness of that for the whole of society, and whether that really having that study, whether that study will change an outcome for a patient. If there's not enough evidence that it actually changes it broadly, then it won't be funded. That's just where we're at, and we have to manage it.

00:22:01 Jill (Standing Up to POTS): And I think in the US many patients find it's also a very long wait and they also have a hard time getting referrals to good specialists. And then there's the whole insurance thing, but actually I did have a question related to your health care. It's a little indirect, but my question is, do you find that your POTS patients tend to be high achiever types, and the reason I ask is because here in the US it seems like they are, but I wonder if that's just because our health care system is so brutal that only the strongest and most tenacious survive it long enough to get the POTS diagnosis. And I know that your health care system always gets ranked as one of the best, so presumably patients don't have to fight so hard to get a proper diagnosis and care?

00:22:53 Marie-Claire: Yeah, and that's such an interesting question Jill. And I've often thought about how can we capture this. I mean, we set up a POTS registry at our clinic for the very purpose of capturing that - what are the characteristics of our patients? So if someone comes to see Dr. Lau at the moment they're coming to see him as a private patient. So that means here in Australia that Medicare pays for about half of the costs of seeing Dr. Lau and the patients pay what we call a “gap” - another half, and for some people that's a lot of money. And especially for a condition that's a chronic condition, so they have to come back multiple times and Dr. Lau does work in our public system as a EP cardiologist, but unfortunately the public system does not look after POTS patients very well at all, and our experience is that they experience everything that you hear around the world: they often get dismissed, they go to emergency, they don't get treated. Nobody knows what's wrong with them. They think it's in their head. They send them home. Even with a patient who we have diagnosed who is very unwell, we do put patients into public hospitals, but it's not easy for us to do it and we have to make sure that they're in there with Dr. Lau overseeing their care 'cause otherwise they can actually end up in worse trouble in terms of there's nobody else there who really understands their condition. But what we do tend to discuss this quite a bit. I am suspicious that the people that we see are generally at the higher end of socioeconomic strata. They're probably more highly educated, and they're more tenacious, and particularly the mothers, so we get a lot of teenagers who come in. And unfortunately, there's a view from some of the public health people that these mothers and children have been through children’s hospitals and you can see in doctors letters this suggestion that the mother is a bit of a tiger, mother issues, and so on. But I tell you what, hats off to them, because some of these kids have been brutally treated and really unwell, extremely unwell, and if it wasn't for the tenacity of their mothers they would never have been diagnosed. Now that's not to say that there's not a difficulty with any person's life with a mother and a teenager separating ways and letting the teenager become an adult on their own. That's another whole issue, and it's important. But POTS patients also journey through that and own their own health as they become adults, but I have no doubt that we see a higher proportion of patients who are either themselves really tenacious and high achieving or their parents are. And hats off to them, but that makes me really sad 'cause I'm sure somewhere there are a lot of patients who are sitting around. Occasionally they stumble on us because the GP will send them to us and say this person is really unwell. But usually I see them. I can think in the last two weeks - couple of weeks - I've seen a couple of women who are in their 60s. Now you see these women’s history, and it's just - you cannot believe that they've lived what they've lived with, and they are usually people with things like Ehlers Danlos, so they've almost had every joint replaced, they’re wheelchair bound because they haven't really had their body well looked after. They've got terrible POTS. They haven't been out to work. They've had prolapses and all sorts of problems from their Ehlers-Danlos. And they've just lived with it their whole life, and they've been kind of brushed off by doctors and told it's psychiatric, a couple that we've seen have been in psychiatric hospitals because they were diagnosed with conversion disorders and so on. So we do stumble across those ones, so there are two I'm thinking of are probably lower socioeconomic. They haven't had access to the private care that others would have, and it's really upsetting to see that. And I'm sure that this is not a condition of the highly educated. This is a condition that affects everybody, but we are seeing the higher end of education and tenacity and social economic ability to seek help, which means that one day when we get a biomarker for this, and when we're able to actually discriminate our cohort and really go out there and diagnose people, we're going to find there's a whole lot more people with this condition than what we know.

00:26:56 Jill (Standing Up to POTS): Yeah, that's a huge concern, but it must be such a breath of fresh air for people to finally see you. Are you able to talk about any of your team's POTS research or research interests?

00:27:10 Marie-Claire: Sure, so I'll give a general view of it, and I mean it's no big secret there. But yeah, yeah, we do need to be a little careful. So, I particularly have an interest because of my own experience of having a virus and having a lot of the inflammatory conditions, so some of your listeners will be really aware of maybe the controversy is even of the whole mass cell debate, but a lot of them will even be familiar with the signs of that. So mass cells are little cells around their body that really responds inflammatory way to triggers, and in some people those mast cells we think cause a lot of havoc right across the body. And I'm definitely one of those people. I've had a few of those really atypical reactions to things ended up in ICU. No one knows what's going on except for my whole body is kind of going mad. “Oh, we don't know, but no, you don't have allergies.” I've never been able to locate that, so when the mast cell thing came about, I was really intrigued by it and I see a lot of patients with that condition. So obviously my research has some focus around those biomarkers, trying to explore and understand what drives this and also what are the effects of that. So there's some areas in which we haven't - well, there are a lot of areas in POTS that we haven't necessarily explored, and so we're trying to explore some of those less known areas. So mass cells can affect the bladder, the bowel, the brain, the skin, the everything, and so we're just trying to find some of the biomarkers, and then have a look at what the effects of that are and how do those effects drive POTS, 'cause really POTS is just a symptom of an underlying condition and even the name of it tells you we're just describing a symptom – postural orthostatic tachycardia syndrome. We're just saying, somebody’s heart goes fast, but that's not the driving problem. That's the end results. So we want to get down to what's driving it and why does the heart go fast? Well, that's different in different people and we're trying to explore that a bit more.

00:29:10 Jill (Standing Up to POTS): So you have just launched a new nonprofit organization. Can you tell us about that?

00:29:17 Marie-Claire: Sure, so just 'cause we didn't have enough to do, I did have a thought for many years that we really needed in Australia, a nonprofit group that looks at POTS only. We have groups that really fly the flag for Ehlers-Danlos. We have some great international groups like Standing Up to POTS and there's POTS UK and Dysautonomia International. They're really flying the flag, and they've really blazed a trail for all of us. And particularly in Australia have kind of gone along on the coattails of those organisations, and we're really thankful for the work that they have done because we wouldn't be where we are today without it. But it became evident to us that there was a real need for an Australian group and the reason for that really is around some of the difficulties I think in the way the world is changing and the needs for, you know, there's a lot of legislation now around not for profits and how money comes into Australia and who's it coming from, and is there an influence from that money and so on. And so some of those things were becoming a bit cumbersome and also Australia is a unique country, just like every country is, and we recognize that while a lot of the work in the United States is really important, it doesn't necessarily translate here that well. So we wanted our patients in Australia to be able to get an Australian view that talked about Australian legislation and Australian medications and how they're legislated so that our patients had a localized flavor, if you like, to their education and also the doctors had something that was more local to go to. So I thought about this for many years and I have been involved in not for profit in many different domains over the years. But of course with everything that went on with my own health and so on, there was never a time for it and then just in the last year, probably about a year ago we started talking about it and I talked with some friends who had nothing to do with POTS, but I just happen to have a lot of friends in that not-for-profit sector and law sector, which is really helpful with the foundation and we’re just like, “Hey let's just start something off small that's an initial thing that can fund some local research. So we don't have any massive high level aims at the moment. Our aims are to just increase awareness of POTS, to start providing some local education stuff, so for doctors and for patients, and also to give a forum for local Australian companies to give money and individuals towards local research and that will start off very small and probably looking at funding some Ph.D. students because we don't have many researchers researching in Australia and the best way really to do that is to target the Ph.D. students, get more people doing research, and we can give smaller amounts of money to that and get an interest in this. So the Australian Pots Foundation is what it's called and we've just launched our website this week. We had the final handover yesterday. It's relatively basic, but it's got everything there, so we will start off with that and people can find us at potsfoundation.org.au if they want to have a look at that.

00:32:21 Jill (Standing Up to POTS): Wonderful, so that was just to say it again...

00:32:24 Marie-Claire: So it’s potsfoundation.org.au

00:32:28 Jill (Standing Up to POTS): Excellent, well we can't have enough organizations raising awareness and so that makes me happy to know that Australia is going to be having that as well. So I know you wrote an entire article about this. You published an article in the journal Autonomic Neuroscience called “Raising the Bar in Postural Orthostatic Tachycardia Syndrome Research, Evidence and Challenges.” So I know you wrote an entire journal article about what you wish more people knew about POTS, but for people listening, what do you wish more people knew about POTS?

00:33:06 Marie-Claire: Oh well, I - we actually, just for the POTS foundation, we're putting together a little video the other day. This is the question I asked. We did it with a bunch of patients and the end question was what do you wish doctors knew about POTS and they had some interesting answers. For me, I guess the biggest thing as a person who's undergone it my whole life, and every POTS patient out there listening will resonate with this, I just wish people understood that what you see on the outside is not what's happening on the inside. Unfortunately, Western medicine has always prioritized, and there's very good reason for this being an emergency nurse too, we always look at patients to see are they symptomatic? So we're looking to see what their color is, how unwell they look, everything’s about what they look, and so when we can't see how they look - if they look normal in Western medicine, at least, - we just write people off. “You're fine, just it must be in your head.” And as a person who's pretty robust, I was very athletic and with everything I've experienced myself and if people could hear the stories I hear every day in clinic, I just gotta tell you it is not reflective what people look like. It's not reflective of what's going on, and there are a lot of people living an internal nightmare. They spend their lives with incredible feelings of wanting to faint, but pain and all sorts of other things, and they journey on through that, and hats off to them. I mean, some of them are just incredible soldiers. I just think people have no concept of what these people go through day-to-day, just while they're trying to live the normal life. So I think the important message for doctors when I try and talk to them is you cannot know what that patient is experiencing without asking them. Please just ask them, ask them “What is happening? How do you feel?” And let them tell you the story, because nothing you can do in testing really will tell you how bad they’re feeling.

00:34:59 Jill (Standing Up to POTS): That reminds me of a meme that sometimes on the Internet about POTS patients that says, “I'm not faking sick. If anything I'm faking well,” and that resonates sometimes.

00:35:12 Marie-Claire: That is so true. That's such a great meme. I hadn't seen that one, but that is so true. Yeah, look, they need a medal and sometimes I say that to my patients: “You should be given a medal.” To get through - some of these young girls, particularly, who have got through university, had children, doing motherhood, and they can't even have a shower because they'll faint in the shower and I just think there's not many people out there that could manage that and you've done it and you should be recognized for it.

00:35:40 Jill (Standing Up to POTS): As should you! Claire, I can't thank you enough for taking this time with us today and for working so hard to help POTS patients around the world. It wasn't until after we funded your research proposal that I spoke to you and learned how compassionate and how dedicated you are to helping the POTS community, and it made me even more happy that your grant application had won. So I know that you're working so hard to do everything you can for POTS patients on numerous fronts, and we hope you'll come back and give us an update when your study is finished and when you have more things to report.

00:36:17 Marie-Claire: So thanks, Jill. That was wonderful and it's great to talk to you and we really just want to say thanks to Standing Up to POTS for what you do and for your funding. It's just fantastic to have such great connections across this small world now and we really appreciate everything that you're doing for POTS, so thanks for having me on the show.

00:36:35 Jill (Standing Up to POTS): Wonderful. And I just want to remind listeners that as always, remember, none of this is meant as medical advice. Consult your medical team about what's right for you. I know everybody said that they don't live in Adelaide now so that they can see Claire at her clinic, but thank you for listening. Remember, you're not alone and please join us again soon.

00:36:58 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast and I would add if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2021 Standing Up to POTS. All rights reserved.