115 - Lauren Stiles - a deep dive into Dysautonomia Research

Episode 115 of the Long Covid Podcast welcomes back CEO of Dysautonomia International Lauren Stiles to chat about research into Dysautonomia, and how this is relevant to Long Covid.

This is a fascinating discussion, which dives back into research pre-Covid that is (or should be) informing research happening now. We also take a look at trials and studies happening now - and why they are important.

Dysautonomia International Website: http://www.DysautonomiaInternational.org
Dysautonomia International's Long COVID Research Fund: longcovidresearchfund.org
Dysautonomia-informed doctors: http://www.DysautonomiaInternational.org/doctors
Dysautonomia Support: DysautonomiaInternational.org/support
Episode 66 - my first interview with Lauren

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

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Jackie Baxter  
Welcome to the long COVID podcast with me, Jackie Baxter. I am really excited to bring you today's episode. Please do check out the links in the show notes where you can find the podcast website, social media and support group as well as a link to buy me a coffee if you are able. You should not rely on any medical information contained in this podcast and related materials in making medical, health related or other decisions. Please do consult a doctor or other health professional. I love to hear from you. If you've got any suggestions or feedback or just want to say hey, then please do get in touch. I really hope you enjoy this episode. So here we go

Hello, and welcome to this episode of the long COVID Podcast. I am super excited to welcome back Lauren Stiles, who is here to talk about all things dysautonomia, and research and all sorts of rabbit holes that I think we're about to dive into. So a very warm welcome to the podcast. 

Lauren Stiles  
Thank you so much for having me. I enjoy doing this podcast. 

Jackie Baxter  
Thanks so much. It's been really, really great to have you back. For anyone that doesn't remember, would you just give a sort of very quick outline of sort of who you are and what you do? 

Lauren Stiles  
Sure. So my name is Lauren Stiles. I am the founder and president of dysautonomia International. We're a patient advocacy organization that advocates for people with all the different autonomic nervous system disorders. And many people with long COVID have ended up with various forms of autonomic nervous system disorders. So we definitely consider ourselves long COVID advocates. 

I'm also a patient myself, I got into the organization, I started it because of my own experience with PoTS and it was sort of I had a virus and a concussion within a month of each other. And that just sent me down an immunological cliff. But eventually was able to get immunotherapy and kind of very long term got my life back. And here I am running the organization 13 years later. 

I'm also a Research Assistant Professor of Neurology at StonyBrook University in New York, where I focus on surprise, autonomic disorders. So thanks so much for having me. 

Jackie Baxter  
Thanks so much. And yeah, we're gonna sort of dive deep into all of this sort of research thing. But just before we do that, can you maybe just explain why is dysautonomia relevant to long COVID? 

Lauren Stiles  
So for a number of different reasons. First, because research has shown that the vast majority of people with long COVID have clinically significant autonomic nervous system dysfunction. So that can cause a lot of different symptoms. Because the autonomic nervous system regulates all of your bodily functions and all of your organs. 

So different people can present differently. Not everyone has the same autonomic presentation, but an abnormally fast or slow heart rate, an abnormally elevated or too low blood pressure, lightheadedness, brain fog sensations, you know, cognitive impairment, particularly if your cognitive impairment gets worse the longer you're standing upright. That's usually due to a blood flow problem to the brain, which can be caused by the autonomic nervous system, not squeezing your blood vessels properly when you stand up. Gastrointestinal dysmotility symptoms, sometimes even having respiratory dysfunction due to autonomic regulation problems. It's a really really long list, sweating problems, bladder problems, erectile dysfunction in males, dry eyes, dry mouth, dry sinuses, dry skin, dry lady parts. 

You know the the list of dysautonomia symptoms is can be really overwhelming for patients to deal with. And then very often, doctors - because there's so many possible symptoms -when you show up at a doctor's office and you say these 50 symptoms that you have, a lot of doctors immediately assume this person is an exaggerator. Like no one can - I actually had a doctor say no one can really have that many things wrong with them. And I didn't know I had an autonomic problem at the time, but I just knew like all this stuff was going wrong. 

So that's one reason is because it can cause a lot of most common symptoms seen in long COVID can be caused by autonomic dysfunction. That's not to say they might not be caused by other things in certain people, but the vast majority of long COVID patients over 70% have significant dysautonomia,

And that makes sense because in other infection triggered chronic illnesses, the vast majority of patients also have autonomic dysfunction historically, before COVID, there were plenty of other infections that caused a long term chronic illness in a subset of people. 

But beyond symptoms, autonomic dysfunction is also a biological mechanism. It's not just symptoms. When your autonomic nerves aren't working properly, that can lead to - your autonomic nervous system is the master regulator of your immune system. So we often you know, I think most people understand that long COVID comes with a lot of immune dysregulation. And there's still a lot of research going on to figure out exactly what that looks like in different patients. But the autonomic nervous system plays a role in your ability to fight off a virus, and your ability to suppress inflammation. When your inflammation is elevated, invariably, your autonomic nervous system is playing a role in that, because it controls the immune function.

We also know that autonomic dysfunction can lead to coagulation problems, because your autonomic nervous system regulates the coagulation cascade. So all of these sort of these popular theories on the mechanisms of long COVID all have a link back to the autonomic nervous system. So we need researchers, when they're studying viral persistence, when they're studying micro clots, when they're, you know, other, they're studying antibodies. We need them to think of the biomarkers as well as, how is the autonomic nervous system functioning? And does it play a role in this? 

And then separate from its regulatory role, there's actually evidence that the autonomic nerves are structurally damaged very early in the course of COVID. We had a brand new research abstract that we shared yesterday from a group of actually veterinary researchers believe it or not, who were very interested in autonomic neurology because surprisingly, animals can get dysautonomia too, you know, I guess maybe it shouldn't be so surprising. But there is actually you know, canine dysautonomia, and equine dysautonomia, and it's often when when animals get this, it's often fatal.

So, anyways, this new research that we shared on our social media yesterday, the researchers infected two different types of animals with acute COVID. And before the infection even triggered respiratory symptoms, it actually damaged, structurally damaged, the autonomic ganglia and the sensory ganglia. But the structural damage was really in the autonomic ganglia. 

So what is that? What are the ganglia, you know? So we all kind of know like the brain, the spinal cord, there's peripheral nerves that go out to your limbs, right? But before your autonomic nerves go out to your various organs and the blood vessels in your arms, your arms and legs, the sympathetic autonomic nerves pass through the sympathetic ganglia, which are like a chain of pearls up and down the sides of your spine. And those are the ganglia that they've found in in now, this is the second study on animal models showing that the COVID virus attacks the autonomic ganglia and structurally damages it. 

So that could be one mechanism that leads to a long term, autonomic problem in humans. We don't have autopsy research looking at the autonomic ganglia yet in humans, but we have been advocating hard for that to happen. It's not easy to get ganglia tissue. It's not done on routine autopsy. So we've pushed the Recover autopsy study and if you know what recover is, the big NIH program on Long COVID. We advocated for Recover to include autonomic and sensory ganglia in their tissue collection, and they agree to it, which is great. But now we just have to get someone to actually analyze it. 

And interestingly, when it first came up, some of the pathologists didn't really even know how to get the sympathetic ganglia. Because that's just not done on routine autopsy, but they came up with a, you know, a training method on how to do it and everyone learned how to do it in the study. So that's great.

We are also doing ganglia research in POTS patients who didn't have COVID and finding relevant immune related pathology in the ganglia of non-COVID POTS patients. So this is I think, an area that needs a lot more research. It's hard to say anything definitive right now, right because long COVID is undergoing like a revolution in new research. And it's it's wonderful, but it's also when you're living with it. It's never fast enough. Right? 

Jackie Baxter  
Yeah. I mean, that's absolutely fascinating. There's so much that you've just said, that is like blowing my mind a little bit right now. But I think something you said just right at the end there, you know, yeah, if you are at home laying in bed thinking, I feel terrible. Well, actually, if you feeling terrible, because of long COVID, for whatever reason, you know, nothing is going to happen fast enough, because, you know, you wanted it to happen yesterday, last week, last year. 

But I think, you know, there is a lot of research that is ongoing, that has even been done, you know, into, you know, things that may not be the quote, unquote, cure, but certainly into things that can potentially help. So we were discussing this kind of briefly just before we hit record, these kind of like two parallel paths of sort of stuff that can help. And then, you know, the other sort of, quote, unquote, cure, or more underlying cause, or, you know. Are we able to talk a little bit about this kind of like, you know, mishmash of two different sides, I think both of which are extremely important? 

Lauren Stiles  
Yeah, absolutely. I think that the goal of every disease community is to find the cure, the ultimate, like permanent cure for their disease, and an ultimate prevention so that other people don't have to suffer with this in the future. That's always the number one goal. But I also think the reality of biomedical research is that that cure is pretty elusive and evasive. Very, very few diseases in the world have a permanent cure. And so what does cure even mean? What does it mean, right? 

I think we have to be a little nuanced about it cure is like, you took a treatment, and you never have to take it again, you are totally done with that disease. That doesn't exist for most disease, there's over 12,000 diseases known to man, and there's very few that have a solid cure like that. There are a lot of diseases that get to the point of having pretty effective treatment options that put people into remission, or that put people into a stable disease course where it's not really interrupting their life that much, right. And so that's a good goal, right. And that's not saying throw out the cure goal, but also, you know, that approach was also important. 

And then there's a lot of treatments for things that are like, mitigating right, it doesn't get rid of your PoTS, but it helps minimize the symptoms. And so when you are the patient that is acutely suffering from a terrible, debilitating illness, yes, you want the cure, but you'll also take whatever helps you know, anything, if it gets you 10% better, if it gets 20% better, it's better than nothing. 

And so I think there's a reality check that we need, like, Yes, we all want the cure. But at the same time, like we can't do nothing until the cure is found, like we need to help people now. So they can get back to their lives, and they can work and they can raise their children or go to school or whatever it is that they want to be doing with their lives. How can we improve their quality of life right now. 

So I think it's important that researchers go down both of those tracks at once, right, not just focusing on the easy low hanging fruit fixes, and not just focusing on the only the cure is worth pursuing idea. I think you need to do all of the above.

And as a patient, you know, I can tell you from my own personal experience, I've never found the cure. As far as I know, there is no cure, I have been diagnosed with sjogrens syndrome, which is an autoimmune disease that doesn't really go into remission. But I did a whole bunch of non-pharmacological and pharmacological options, each of which helped me a percentage, right. I would not say anything was the 100% fix, but it's gotten me back to the point of functioning where I can actually enjoy my life and work and occasionally have some energy to have some fun. So you know, sure I still want that cure, but I'm not going to turn down something that helps 20%. 

Jackie Baxter  
Yeah, I mean, I think yeah, for me a lot of it was what can we do? You know, we're all very, very aware of the can't because we're getting you know, bludgeoned in the face with that all the time when you're unwell. But actually, you know, there are things that we can do that will help, and they may not all be all of the same things for every individual person. But there are lots of things that can be done that will help a bit. And then the next thing will help a bit, and a bit more, and some things might help more than others. But as you say, you know, 10% is a hell of a lot more than nothing. And then you know, if that leads to another 10 or another 10. 

Lauren Stiles  
I think as a patient, it's really especially when you you're Um, if you have long COVID, even though we've learned a lot about long COVID in the past few years of research, and from looking at other infection triggered conditions, we can learn a lot. But there's still a lot we don't know. And it is very heterogeneous, right? Like if you've seen one long COVID case, you've seen one long COVID case, like people are very different. 

So as a patient, it can be really frustrating to see, you know, someone's saying, Oh, don't use that, that didn't work for me. But then someone else saying, No, that works great for me. And it's sort of like, Well, who do you believe? And I do think you don't want to go off the deep end doing like super weird treatments that are dangerous. But I do think there is something about the longer you have a complex illness that's really debilitating. And you've tried all the standard stuff the doctors are telling you, the more people become open to like, well, what if I try this? What if I try this. 

And I've done it, you know, I think you'd have to be smart about it, and try things that are not very high risk, that that you really understand the potential negative consequences. And, you know, hopefully you can find a doctor who's willing to guide you along. But a lot of doctors aren't comfortable doing that with very off label things.

But definitely you know, there's so much emphasis on evidence based medicine, which is wonderful, when we've done all the research, to gather the evidence. But when you have a poorly understood condition, what if there is no evidence? What do you just do? You can't do nothing, right. So I think that's where medicine is still an art form, and not totally a science for lots of people who have conditions that aren't, you know... 

we have really good evidence on how to treat diabetes, we don't have really good evidence on how to treat long COVID. That's not to say people aren't trying to gather that evidence and to write reasoned journal articles explaining what to do. But it is still more of a, let's see if this works, you know? 

Jackie Baxter  
Yeah. And then there's a lot of anecdotal evidence flying around about all sorts of things. So you know, it's kind of like, well, if a lot of people are suggesting that one thing might be worth doing, then, you know, maybe you try that first, before going a bit more off the wall. But at the same time, if it speaks to you, then certainly what I found was that it was quite a personal thing. And just because loads of other people said it worked didn't mean that it necessarily would, but it also didn't mean that it necessarily wouldn't. 

So I think it's that you've sort of got to try it. And if it doesn't work, then well, yes, it's frustrating. But also, it's something that you don't have to keep trying because, you know, tick it off the list. Done. Let's try something else. 

Lauren Stiles  
I think there's a huge amount of knowledge in the lived patient experience that standard medicine doesn't really value, right, doesn't really understand. And I'll give you an example. Years ago, when we first launched dysautonomia International in 2012. I had been part of PoTS support groups for two years at that point, and had seen so many patients saying, when they ate low carb, their PoTS symptoms seem to improve, right? So there was absolutely no research on this. I asked famous PoTS experts, what do you think about this, and they also shrugged their shoulders and said, maybe, but like there was no data. 

So we put it on our website as a recommendation to try a low carb diet. And we clarified that there was no actual research proving this, but that it was an anecdote shared by a lot of patients, and it's a fairly harmless thing to try for a month or two, right? We got yelled at by so many strangers, doctors would email us How dare you recommend things, like we got yelled at for this right. And even with the explanation that it was not based on research, that it was just based on anecdotes. 

And then years later, Vanderbilt researchers did a study finding, surprise, surprise POTS patients have abnormal responses to glucose, and that their tachycardia and orthostatic symptoms dramatically worsen after carbohydrate intake. So now they're recommending trying a low carb diet, based on that evidence. 

So that was an example of a relatively benign treatment approach that is so easy to do yourself, you know, you don't even need a prescription for that. And really just wanting researchers and clinicians to just acknowledge that sometimes the patient community, especially a well organized patient community, like the long COVID community is pretty well networked. There's a lot of people talking to each other, that there is some value in that patient knowledge even if the research hasn't proven it yet. 

And I actually think researchers should look to that patient knowledge to help guide study ideas like you know, Oh, wait, we maybe need to study this, if so many patients are saying it's helping them. And I do see that happening with some of the long COVID researchers really tuning into the patients, which is great.

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Jackie Baxter  
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Back to the episode

Jackie Baxter  
Yeah, yeah, definitely. Because, you know, it's like the people with that condition. And, you know, with long COVID, we've got a lot of people all with the same trigger, in that it was COVID or vaccine related, you know, these two particular triggers, all at the same time, all talking to each other, which means that, you know, the, this sort of information is a bit more kind of all in one place all at one time kind of thing. 

Whereas, you know, with pre-COVID post infectious diseases and all sorts of stuff going on, it's a bit more kind of, like, spread out. And less certain, I guess, isn't it, you know, it's like, Well, did your PoTS come from such and such, or such and such a virus, you know, it could have come from more different things. And I suppose this is something we're going to see more over time with other viruses coming along. But we have this sort of opportunity here. 

Lauren Stiles  
Yeah, we haven't seen like, in the PoTS community, we know that about half of cases are triggered initially by an infection. And we have have actually surveyed patients, large cohort like 15,000 patients survey to ask, did you have any infection within three months prior to the onset of your PoTS symptoms? And if they say, Yes, we say, Do you know what kind of infection it was? 

And sometimes people can give you very specific like it was h1n1, you know, and other times people say it was a chest cold, you know. And so the answers are pretty diverse. There wasn't any one particular infection that like everyone with PoTS had before COVID. It's a lot of different infectious agents, and different parts of the body, not just respiratory infections. We had people who said, I got I got Mersa, and I got PoTS, which is usually a skin infection, right? I read people who said, I had a UTI, and then I got PoTS. So it seems like a lot of different pathogens can set this off. 

And it's not just PoTS, we actually had compiled for one of the lectures I gave on long COVID, I compiled all of the literature on other infections that trigger autonomic dysfunction. And it was basically a list of every pathogen known to man, you know. And it's a subset of people, right? Like, not everyone who gets H1N1 develops a chronic dysautonomia, but a subset do. 

There was actually a study years ago by noted MECFS researcher, Ron Davis, and he found - I hope I don't get the number wrong when I'm saying this to you on a recorded podcast, but I think he found that like, roughly 15% of people who get certain types of infections will go on to develop an MECFS like phenotype, right? 

So that's roughly around the numbers we're seeing for long COVID, right, depending on the day, and depending on whose journal article you read, it's 30% of long COVID. Or it's 10% of long COVID. And it's somewhere, you know, maybe it's 6%, I don't know, whatever it is, even if it was only 6%, which seems like a small number, 6% of the entire global population that's going to get COVID at some point, if they haven't already. And then people getting multiple infections, and each infection increases your risk of getting it, of getting long COVID. I think that um, you know, 6% of a billion is a lot, right.

So you need to really make sure that the government agencies, not just in the US, but around the world, really are paying attention to this, something that's going to impact the global economy, it already has, you know, and will continue to do so. And I think whatever we learn about long COVID is really, really important that we take that knowledge and we apply it to the other post-infectious conditions. 

And by the way, when I say postinfectious, I am not saying that there's no ongoing infection in any of these people. I think that term has just historically always been used to represent infection triggered conditions, right is maybe a better term and, and now people are using the term infection associated chronic conditions. So it's a little more inclusive. But um, don't shoot me because I'm old school and I said post-infectious.

Jackie Baxter  
Yeah, and as you've just demonstrated, you know, we were talking more specifically long COVID here, but you know, there's a whole load of history around MECFS, dysautonomia prior to COVID. All of these things existed before it became aware to me, you know, I mean, I, I had very little awareness of, or even no awareness of any of these things, until suddenly it happened to me, at which point it was suddenly, like, Gosh, why hasn't anyone done anything about this? 

And it's, you know, you know, then you start to realize that actually, there's a lot of stuff that has been researched over the years. You know, there's tons and tons and tons of stuff that actually would be really interesting, and in some ways, has been, you know, linked into long COVID research, but certainly should be very, very much linked into what's going on now. 

Lauren Stiles  
A perfect example of this, I just a few minutes ago, told you about the ganglia pathology research in animal models of COVID. Right. So there are autopsy case reports from MECFS patients from over a decade ago, showing that ganglionitis, inflammation of the ganglia, was found on autopsy in MECFS. Why has no researcher picked up on that and run with it to really study the ganglia in MECFS? It's so frustrating, like, that's, that's been known. And now we're sort of relearning it in long COVID. You know, and, and hopefully moving it forward. 

So I also think, I do want to say, for people who have long COVID that don't have a type of dysautonomia, and don't have MECFS, I really think we need to include them in the conversation too, because whatever they have, it's awful, right? And it could be pericarditis, it could be significant cognitive impairment that is not orthostatic in nature. There's so many other things that that are coming with long COVID. And I think that a lot of consequences of viral infections have not been recognized over the years. 

And I mean, the discovery only a few years ago that MS is triggered by Epstein Barr Virus is a perfect example. MS has been studied for decades, decades. And they only just figured that out, you know, so what other infection triggered health problems are we just not aware of that, because of the mass of humanity that got long COVID, you know, there is this momentum for research. 

So I think even though I am primarily advocating for people with PoTS and other forms of dysautonomia, I want that long COVID research to help everyone. I want to understand MECFS, I want to understand people who are getting Parkinsonian like shakes from long COVID, I want to understand what's going on with the coagulation stuff. 

I kind of feel like as patient advocates, we should all be rooting for each other and cheering for each other and trying to push everything forward at once. Which maybe seems a bit of a difficult task when sometimes you barely have enough energy to get a glass of water from the fridge.

But you know, really not tearing each other down or excluding each other from the research space, but actually saying, Wait, we need to figure, we need to figure out the Lyme people too, you know, they have been dealing with this infection triggered thing for years and have largely been ignored by academia. You know, and I think that there are a lot of lessons from that, that we can apply to COVID research and policy as well. 

Jackie Baxter  
Yeah, yeah, definitely. I completely agree. So what will be really cool is, I mean, this is going to be the most ridiculously wide open question. But like, what's going on in the sort of long COVID research world? Sort of - maybe generally, before we dive down more specifically. 

Lauren Stiles  
Yeah, I think there are a lot of researchers who are very bright, who are new to the infection chronic illness space, right? Which is good and bad. It's great because we want more researchers in the space, more brainpower trying to figure this out. More very cool research methods and equipment being put into this. 

But then the frustration is like they are reinventing the wheel quite often because they're not familiar with the existing research in the field. But that's okay. You know, like I think that it would be a little bit more efficient, we can move a little faster if they had been super well versed beforehand, but you know, I think no matter what we are, we're making progress. 

I do want long COVID patients listening to this to know like, I never Candy Coat things, these illnesses are freaking horrible. But I think you should have hope because there's more research happening on long COVID than I have ever seen in any disease in history literally. Like in spring of 2020, when we started seeing people who had had COVID showing up in the dysautonomia international support groups. I had had it in February of 2020. And so I was in a lot of COVID groups to try to learn like how the heck do I treat this right, the very early beginning stage. 

And I reached out to researchers at autonomic labs around the world to ask them, these are people we work with, you know, before COVID. We were working with them on PoTS research and stuff. So I said are you guys seeing these - we called it post COVID dysautonomia because it wasn't called long COVID yet, you know, are you seeing these post COVID dysautonomia people? 

And like, most of these labs were like, yes. Oh, my God, we are bound to bet, we're gonna get hit by this big onslaught, right. And almost all of those labs immediately turned into researcher mode and thought, how can we use our tools to help figure this out? Because it was such a new thing, you know. And I've seen cancer researchers be like, I'm gonna figure this out, you know, let me get involved. 

And unfortunately, a lot of doctors got long COVID. And a lot of nurses, people on the frontlines in health care were getting COVID more than the rest of us, and maybe even like higher viral titers because they were in an ICU with 15 COVID patients. So we had a lot of doctors who previously were not interested in these disorders, saying, well, we need to figure this out, you know, so. So I think there's a momentum there, because of the awfulness, and the hugeness of the problem. So I would have hope. 

But in terms of big picture, what's happening in research, I can sort of highlight some of the dysautonomia stuff that's going on in long COVID. The National Institute of Health in the US is going to do a pretty large trial of IVIG for long COVID PoTS. And there's pretty strict enrollment criteria for the study. They want patients to have certain autoimmune markers which are not uncommon in long COVID POTS patients. And it's pretty intense testing, but it's really hopefully going to be a good trial. 

There's also a trial for Ivabradine in long COVID PoTS as part of that NIH study. That's a drug that lowers your heart rate without dropping your blood pressure. And then there's at Walter Reed National Military Medical Center, the Veterans Administration/Department of Defense is doing a study on Ivabradine for PoTS and inappropriate sinus tachycardia in long COVID patients, which is interesting. 

There is also a private company called orgenics, a pharma company, doing a clinical trial on a drug called efgartigimod, bonus points if you can pronounce that. The commercial brand name for it in the US is Vyvgart. And you might see in commercials in the US for this drug for myasthenia gravis because it's already been FDA approved to treat myasthenia gravis. So they are studying this drug and long COVID PoTS. 

And I have heard through the grapevine that the phase two initial sort of pilot study trial went well and that they are going to be expanding it into a phase three. So that's pretty exciting. They're also studying this drug for sjogrens syndrome, and for CIDP and other neurological mediated conditions. So that's, you know, kind of pretty cool. 

We have - Dysautonomia International has funded research on EECP, which is the sort of counterpulsation in the legs in in Sweden, there's a study going on for that. Because you know, not everyone wants to take medications, we recognize that. Some patients for financial reasons or for medical reasons or just personal preference, you know, you need a lot of different options, a lot of different tools in the toolbox. 

We're also funding an Ivabrabradine trial in Sweden, in long COVID PoTS. They just published a new paper from one of the things funded yesterday, documenting proteomics in long COVID with and without PoTS. And the proteomics results were that long COVID patients had a lot of inflammation and a lot of coagulation markers, regardless of whether they met the PoTS criteria or not. 

But what they didn't assess, and we funded it so I probably shouldn't be criticizing them, but what they didn't assess or didn't report and the study was whether there was autonomic dysfunction other than PoTS in the non-PoTS patients. And they're likely was because it's so common in long COVID. And so it could be that the autonomic dysfunction itself is linked to the inflammation, the coagulation and it doesn't really matter whether you meet the PoTS heart rate criteria, right? That that autonomic stuff is still happening. 

So but but it is a you know further validation that there's massive immune dysregulation going on long COVID. And that there are coagulation problems going on in Long COVID. 

We've also funded an IVIG trial at Harvard in Long COVID PoTS, it's actually not just PoTS he wants to do - this is Peter Novak up at Harvard. He wants to do long COVID autonomic dysfunction whether you meet the PoTS criteria or not. Which is good because I think that the NIH study is just focused on long COVID PoTS, and I do think there's a larger audience of long COVID patients who don't need the PoTS criteria but have significant dysautonomia. So my hope is that if the NIH initially funds along COVID PoTS trial, then the next trial they would find would be a broader all long COVID dysautonomia, you know, immune mediated dysautonomia. 

And let's not forget about the other PoTS, patients that don't have long COVID, you know, the sort of other, you know, broader autoimmune PotS or immune mediated PoTS. And that is something, you know, that we're very focused on, because there are a lot of case reports on pre-COVID POTS patients seeing a lot of improvement with various immunotherapies, which they usually receive for other autoimmune diseases, you know, not too many people are giving out IVIG just for PoTS itself. But if people have overlapping autoimmune conditions, sometimes they can get insurance approval for it, and they seem to do quite well on it. 

So I would, I would definitely encourage the long COVID community to stay on top of that research. And hopefully that opens more treatment options for long COVID patients in the coming years. It is not fast to do that kind of research, right? It takes a while. 

But oh, and also vagus nerve stimulation, that's another thing that I think is going to be really important in long COVID. We tried to get the NIH study to include vagus nerve stimulation, but they turned it down. 

We have funded three different Vagus Nerve Stimulation trials on PoTS before COVID. But the results are like just starting to come out. And the results look pretty good, that not only does it reduce the orthostatic tachycardia, but it also improves overall symptomatology and quality of life and functioning, like ability to do chores and go to the food store and take your kids to school and, you know, ability to sort of live a more normal life. 

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Jackie Baxter  
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Jackie Baxter  
This is fascinating. And going back to what we were saying earlier about anecdotal evidence, you know, Vagus Nerve Stimulation was huge for me, you know, different ways to do it. You know, that was, you know, really what sent me in the right direction. And I think - Did you not mention before when we spoke that IVIG was a big factor for you? 

Lauren Stiles  
Yes, it was. 

Jackie Baxter  
So, you know, anecdotally, you know, between the two of us were kind of ticking to those boxes. 

Lauren Stiles  
So, I actually was on IVIG and then subcutaneous IG - SCIG for over a decade. And I lost access at the start of the pandemic, because my really good doctor who knew how to get insurance approval for it, left clinical medicine. He just went to run a pharma company so... it seems to be a theme, like all of my good doctors are quitting medicine to go to Pharma. And if you talk to doctors about this, there's like a growing - as much as we the patients are frustrated with the way healthcare works. I think a lot of clinicians are too. 

And so anyways, I lost access to my gamma globulin magic juice. But I didn't have a huge crash. I had a little bit of a worsening of symptoms, like I can tell the difference without it. But before IVIG, I was totally bedridden. My GI tract was not working. I was down to like, just so sick, I don't know how to explain it. I was just really really sick. And I didn't crash like that. I just had like a slight worsening of symptoms. So I haven't pursued going back on it. 

I did start using vagus nerve stimulation too, because not because Vagus Nerve Stimulation changes the heart rate, which it does, it lowers the heart rate. But because it has these immune modulating properties, that lowers inflammation and sort of calms down autoimmunity. There's actually research un-related to COVID - a researcher that I am a huge fan girl of, like, obsessed with his research. Kevin Tracy, he's on Twitter. So you could like tag him when we share this! 

But he's really brilliant. And he was studying how to prevent inflammation without giving people like super toxic, you know, immune suppressive drugs. And he sort of figured out that you can actually tap into the vagus nerve and reduce inflammatory markers. And studies that is based on his work have put people with drug resistant Crohn's and drug resistant rheumatoid arthritis into remission using vagus nerve stimulation. So, I think it's a huge area of new research. 

I actually think so much of chronic disease is due to inflammation, and it's in diabetes, it's in Parkinson's, it's in MS. And so if we can figure out safer ways to reduce inflammation without giving people toxic drugs, that's kind of amazing. You know, I think that's going to be a big area for future research. And and I do think we're going to see more people doing this in long COVID. There are patients who are just doing do-it-yourself kind of vagus nerve stim. I was doing that. I don't know if yours was doctor prescribed or do it yourself? 

Jackie Baxter  
No, no, I, I was definitely hacking my way through it.

Lauren Stiles  
Yeah. So I, I think it's okay to do that. But I also think you need to be smart about it. Like I said earlier, if you do vagus nerve stim wrong, you know, you could give yourself an arrhythmia. So you don't want to just play around with your heart rate, and not know what you're doing. So really, really take the time to learn about it. 

And I would say try to find a doctor to help you. But the vast majority of doctors have no idea how this works. So sometimes the heart failure doctors do, because it's sometimes various forms of this are used in heart failure. But, you know, they're not going to say, oh, yeah, let's use this in long COVID. 

Jackie Baxter  
But like, this comes kind of back to this idea of everything being so connected, doesn't it? I mean, you know, the vagus nerve and the immune system and the inflammatory system and the, you know, things like clotting that you were saying earlier, all these things are so interrelated. So, you know, a trial that is, quote, unquote, just looking at vagus nerve stimulation, it's actually not just looking at that, because it's going to have a knock-on effect to all these other things. 

And, you know, and actually, having this more kind of overview and being able to look at kind of the bigger picture, I think, you know, actually is something that's really important here. Because, you know, long COVID isn't just one thing, as you said, you know, it's like long Covid ub one patient is just long COVID in one patient.

Lauren Stiles  
Yeah, the cool thing about vagus nerve stimulation is there's prior research on it, showing that it can help mitigate chronic pain, particularly neuropathic pain. And if you think why, well, because pain is usually induced by inflammation, right? It can help with GI dysmotility. So people who have a GI tract that's moving slower than it should be. There's some research on using vagus nerve stimulation in that. There's some evidence showing it helps with like sleep dysfunction, you know, kind of maybe resetting your sleep patterns. 

I can tell you my own little anecdote on that. I'm really busy during the day. So I don't usually have time to do it. It's kind of you know, a clunky thing you put on your ear. So what I did was, I just decided to - your parasympathetic nervous system is what you're activating and stimulating when you do vagus nerve stim. And your parasympathetic nervous system is the rest and digest part of your autonomic nervous system, right? 

And so I thought, well, you know, maybe I stimulate my vagus nerve before I go to sleep, because that'll relax me, that was just my like, kind of unscientific approach to it. I just, you know, kind of simplified. And I did that. And sure enough, it started helping me go to sleep faster. And so I don't know if that's a thing that we could find with real data and lots of people, but it was my thing for sure.

And sleep is something that greatly influences your autonomic nervous system functioning the next day. So if even a totally healthy person has a bad night of sleep, or no sleep, tries to pull an all nighter like we all did when we were in college, right? That person is going to have very disordered autonomic function in the morning. They're going to be more sympathetic. You know, faster heart rate, faster breathing, sort of agitated. And that doesn't just affect your heart rate, it affects your immune system too. So like, that's why bad sleep, it leads to so many chronic diseases. 

So I think I would love to see more research on the role of sleep in the chronicity of long COVID. I think that when you can't sleep because of pain, because of just other unpleasant symptoms, or just because you have insomnia, and you're just laying there and you just can't sleep, you know, I think that leads to a lot of downstream not good stuff. So finding healthy ways for people to get good sleep is part of that anti-inflammatory approach to treating us. 

Remember that saying from Oprah - live your best life? I have a little meme my friend made me that says "live your best anti inflammatory life". That's how I tried to deal with my sjogrens, like anti inflammatory diet, anti inflammatory sleep habits, you know, and I use a couple of supplements that are anti inflammatory. And I'm not saying like, Oh, everyone needs to do that. But for me, that's helped. But there's so much of this, that is figured out yourself, that there really isn't great research for patients to look to and say, Oh, this is how I do this, you know? 

Jackie Baxter  
Yeah. Which I guess brings us back to the anecdotal evidence actually being quite important, partly in informing research, but also, you know, for what can we do now? Because, you know, it's great that there is all this research going on. And I think that's fantastic. And it needs to happen. And it's super exciting that there is stuff happening. And you know, there needs to be more. 

But also, you know, it takes so long. And this was something that was kind of a bit of a like lightbulb moment for me when I started interviewing researchers and thinking, Oh, my goodness, so this one study is going to take two years, and then there's going to be another one and another one and another one. So you know, just because there's a research study that's looking into all of this, you know, that's great. But it doesn't help us now. It might help us several years down the line. So you know, it's all of this kind of, yeah, what can we do now? And you know, there are things that that we can.

Lauren Stiles  
That is a perpetual source of frustration - for me and for everyone living with complex chronic illnesses that don't have awesome treatment approaches right now. I do think for long COVID patients who are newly diagnosed or haven't really learned about dysautonomia, and like the way it's treated yet. I do want to say, you might have a lot of doctors telling you, there's nothing we can do for long COVID, we don't know how to treat this because the research isn't done. 

If you have any form of dysautonomia, whether it's PoTS or more generic orthostatic intolerance, or you have gastroparesis are hyperhidrosis, which is excessive sweating. We have evidence based treatments for these conditions. But the evidence came before COVID. Right. So there are beta blockers. And Ivabrabradine and there's a lot of different medications to be used. 

There's a lot of different non-pharma approaches - increasing oral salt and fluids, compression garments, particularly in the abdominal area and the upper thighs. A lot of people think the compression on like the knee highs is enough. And for some people, maybe that's enough to help. And it's more comfortable than a full length compression stockings. But most of the blood pooling in people who have PoTS and orthostatic intolerance occurs in the gut area, because you've a lot of blood vessels there. So like Spanx or other just like really tight pants, to help push that blood flow back up to the head. 

There are lots and lots of treatment options for autonomic dysfunction. And part of the reason for that is because like more than a third of all medications actually interact with your autonomic nervous system in some way. They they make an organ move faster or slower, depending on which receptor they're stimulating. So a lot of treatment options. 

The challenge is there not a lot of doctors who know how to use those treatment options. So there are not enough dysautonomia experts out there. So the best that you know, if you can get to one, that's great, but if you can't, I'd say find a doctor who's willing to work with you and learn with you, and read journal articles with you to try to figure things out. That sometimes can be more valuable than, you know, one visit to the fancy specialists that you know, they see you once and they never see you again. Finding the helpful doctor is sometimes the hardest part of this. 

Jackie Baxter  
Yeah, absolutely. And we talked a whole load around all of that in the first episode that we did, I think is at the end of last year, I think. So I will dump a link in the show notes to that. If people want to go back and listen to that in a bit more detail for sure. 

Lauren Stiles  
I want to leave people with a note of hope. I think it's really hard to live with this and it's feels very defeating at times, and sometimes often. But just keep reminding yourself that there is a lot of research happening, there's clinician education happening to train more doctors. Get involved with dysautonomia international, get involved with long COVID advocacy groups. That's very often the best way to find out about the latest research, where the clinical trials happening, who are the good doctors? And just, you know, having that connection with fellow patients who understand what you're going through can help a lot.

Jackie Baxter  
Yeah, absolutely. Yeah. Well, thank you so much for joining me today. It's been awesome speaking with you again. So yeah, a huge thank you, Lauren, for giving up your time and energy today to speak to me. And yeah, thank you so much.

Lauren Stiles  
Well, thanks for doing the work that you're doing getting the word out. 

Jackie Baxter  
Thank you so much to all of my guests, and to you for listening. I hope you've enjoyed it, or at least found it useful. The long COVID podcast is entirely self produced and self funded. Doing all of this myself. If you're able to please go to buymeacoffee.com/longCOVIDpod to help me cover the costs of hosting podcast. Please look out for the next episode of the long COVID podcast. It's available on all the usual podcast hosting things and do get in touch, I'd love to hear from you.

Transcribed by https://otter.ai