134 - Vicky van der Togt & Jeremy Rossman - Research-Aid Networks

Episode 134 of the Long Covid Podcast is a chat with Vicky van der Togh & Dr Jeremy Rossman from Research-Aid Networks. We discuss what the organisation does, what brought Vicky & Jeremy together as well as their recently published hypothesis paper.

Research-Aid Networks  www.researchaidnetworks.org 
Pandemic-Aid Networks www.researchaidnetworks.org/pandemic-aid-networks
Long Covid hypothesis paper: https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1150105/full
Lay version (also available as audio): https://researchaidnetworks.org/hypothesis-summary/.

Twitter @ResearchAidNet

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YT @ResearchAidNetworks

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter
Hello and welcome to this episode of the long COVID Podcast. I am super excited today to be joined by Vicky van der Togt. I hope I got that vaguely right. And Jeremy Rossman, I hope I got that right, too. I didn't even check that one. And we're going to be diving down the long COVID research rabbit hole, and kind of talking about what these guys have been up to. So a very warm welcome to the podcast today.

Vicky van der Togt  
Thank you. Thank you for having us. 

Jeremy Rossman  
Thank you.

Jackie Baxter  
I'm so excited to kind of dive down this rabbit hole. But before we do that, maybe you guys would just introduce yourselves a little and just say a little bit about yourself and what it is that you do.

Vicky van der Togt  
Hi, I'm Vicky. I am located in The Hague in the Netherlands. I work as a director of development for research ad networks, and also work on long COVID research, done a lot of work on advocacy, COVID advocacy, not necessarily all long COVID advocacy. But also focused on prevention, on informing people, educating people on all the science. I don't have a background in science, though, I actually have a background in communications, and I've worked as a photographer for years. So I kind of rolled into this.

Jeremy Rossman  
And I'm Jeremy Rossman, I'm the President of Research Aid networks, which is a nonprofit organization that is really focused on being that bridge between sort of the scientific and research community, and what is happening on the ground in communities, community activism, community, supporting organizations, humanitarian aid, really on a broad spectrum. But really trying to be that bridge between science and the community. 

Jeremy Rossman  
And through that, we've been working on a lot of COVID pandemic related actions, now working a lot on pandemic preparedness, and have been doing a lot on the long COVID field. I'm also an honorary senior lecturer of Neurology at the University of Kent, and have been doing all sorts of virology and immunology research for quite a few years now.

Jackie Baxter  
Amazing, and I love this, because you're absolutely right. Before I became involved in long COVID, and the long COVID world, starting to speak to researchers and people who were involved in that world, you know, researchers were like, up on this massive pedestal, and they were super smart people with like, gazillions of letters after their names. And, you know, white coats, goggles, you know, like, super duper, sort of unobtainable, smart people. 

Jackie Baxter  
And you know, not that you're not. But I think, as you say, you know, this kind of, how do you link that to like, quote, unquote, the people? You know, research has obviously got to be done by researchers, but also, as we're starting to understand more needs to involve the people whom the research is being done for. And then that needs to be communicated to those people. And I'm sure loads of other people as well. 

Jackie Baxter  
So although research may be done by like, the super smart people, you know,it's not in isolation, is it? And I think that's a very kind of, yeah, powerful thing to be able to communicate that to people who aren't researchers

Vicky van der Togt  
couldn't agree more.

Jeremy Rossman  
Exactly. That's the whole idea, is to try and break down that barrier between research and the community. And obviously, we still need things like research, objectivity, and stuff like that. But there's so much of research that can directly benefit different communities. 

Jeremy Rossman  
But there's also so much information and knowledge within the community that is essential for designing really good research. So this needs to work in both directions. And there's so much that can be mutually beneficial here. But there's a real need for that bridge. And that's what we're trying to work on. 

Jackie Baxter  
Yeah, and I guess like joining the two is probably not as easy as it sounds. It's not just kind of being like, hey, person A meet Person B, because I imagine that those people maybe can't communicate very easily because they're in two very different worlds. Is that true?

Vicky van der Togt  
Yes. Although, sometimes it really is as easy as just introducing people to each other, making that connection. But I guess this really brings us to kind of my role, which is I also work as a facilitator for the network that we started. So I think it's useful to talk a little bit about that. Because that's really how our collaborative work all started. 

Vicky van der Togt  
So I got sick with COVID in March 2020. And I developed long COVID. And back then nobody was talking about it. And so I started speaking out, first in my own country, but from the Netherlands, it's a tiny country. And so I tried to kind of get an idea of if there were others like me who had these long term symptoms. And there were, but they're all abroad. 

Vicky van der Togt  
At the same time, it was clear to me that, you know, I was 28. At the time, if I was having long term symptoms, there's most likely gigantic group of people who were struggling with the same thing. And this meant to me that what the government was saying at the time, which was that this virus was only affecting elderly people and people with underlying diseases, that that wasn't true, and that there was a real need to do more about prevention. 

Vicky van der Togt  
And so I really decided to start speaking out to see what I can do to get the word out there, to get the correct information out there. But like I said, I'm from a small country. And so I did connect with a bunch of Dutch advocacy groups who were already working on the topic, and I joined one. But it was clear that to really make a dent, I really had to connect more internationally. And I was kind of looking for others, maybe like a network of groups of people bringing people together. 

Vicky van der Togt  
But there wasn't really a network like that that was doing any, like effective collaboration, or collaborative work trying to initiate that. And so after a while of searching, I decided to start it myself. And Jeremy was one of the people who joined the network quite early on. I connected with Jeremy online, who was one of the first people I spoke to, who really confirmed that there were all these other diseases that also had long term symptoms. But that wasn't really spoken about as much. And so to me, that was that confirmation, and also the start of a very fruitful collaboration from that point on out. 

Vicky van der Togt  
And so I decided to start a overarching kind of collaborative network for COVID focus groups around the world. So that could either be long COVID groups, or people that focused on prevention, people that focus on education, anyone, but mostly community groups, with the idea of connecting to researchers to really make sure that that information was disseminated, because at the time it wasn't. 

Vicky van der Togt  
And so going back to your your comments, I work as a facilitator to really connect those researchers with the community groups, to help the community groups with whatever they're working on, which is a very wide range of projects. And we actually recently relaunched a network. And so we're back at it again. And we're at the moment recruiting new partners, trying to kind of see what is needed now, in this phase of the pandemic. 

Jackie Baxter  
I think, certainly from a long COVID perspective, I was also a march 2020-er, is that even a word? And that feeling at the start that it was just you, there's all this stuff in the news about COVID. And people are talking about the death toll, and like, that was terrifying in itself. But nobody was talking about the people who survived, but didn't get better. So, you know, there was that feeling of isolation. And, you know, that continued because, you know, medical care, it was quite difficult to get at that point. 

Jackie Baxter  
And I think, you know, the kind of overarching thing that I've really noticed all the way through my experience with long COVID, and even beyond, is that communication isn't there. You know, there's a lot of stuff out there, there's a lot of things that are helping people. There's a lot of research that people can get involved in, there's so much information, but it's not reaching people, or it's certainly not reaching all of the people that it should be. 

Jackie Baxter  
It's reaching people because they're kind of going out to look for it, rather than because it's being signposted to them by doctors or whoever it is that they're going to. So, you know, it sounds like you know, that's kind of part of the reason I think things like the podcast is so important. But you know, even so, you only find a podcast if someone tells you it's there. Or if you go looking for it. So it's still that kind of problem of being signposted, isn't it? 

Jackie Baxter  
And I think, you know, again, this, this idea of, of isolation, and, you know, just connecting with people is just something that is so important, whether you're sick, and feeling isolated and needing someone to talk to. Or whether you're a doctor who's looking to collaborate with other doctors, or a researcher who's looking to collaborate with other researchers, or doctors or patients or whoever it is, you know, it's that yeah, connection. 

Jackie Baxter  
And how wonderful is it that the three of us are here in like three different countries, and we are connecting, I just think that's wonderful.

Vicky van der Togt  
And it's great that it's possible. 

Jeremy Rossman  
It's one of the really powerful things that has really come to light during the course of the pandemic is that, despite also the immense difficulties and challenges, there's also been this new level of connection and collaboration and people coming together to really work on very complicated, very different things from very different backgrounds. And that's been incredibly powerful. 

Vicky van der Togt  
Yeah, what you said just now about the signposting and that even if you have a podcast, it's still dependent on the person sending it to someone that they want to, to actually listen to it. Well, that's actually the reason why the approach behind the network from the very first moment was to work with community groups, people who want to take action within their own community, or nationally. 

Vicky van der Togt  
We never had the idea that it was us doing the work, we were just here to support in whenever we can, because a message is always so much better received coming from a trusted person in the community. And so it was really up to us to support them in their projects. 

Vicky van der Togt  
Or support them personally is also an important thing to mention. Because doing advocacy is difficult. And the pandemic is, of course, very hard on people emotionally as well. And so it's not just specific sharing of resources, for example, that we do, it's also providing organizational support, as well as just personal support for the advocates involved.

Jackie Baxter  
Yeah, for sure. I think that's really a really good point as well, you know, even if you don't have Long COVID, doing all of this stuff is not cost free in terms of energy and the sort of emotional toll it takes. And so many of the people that are doing all of this stuff, do have long COVID. And I guess, people coming together and connecting and working together, it gives you that support. But I mean, maybe hopefully, on some level that lessens the workload as well, you know, that many hands making lighter work kind of thing? I don't know if that is actually true. 

Vicky van der Togt  
Yes, definitely. And, again, part of the reason behind the network, I mean, what I saw at the very beginning is that, like you said, the information was out there. But what I kind of saw is that all the English media was sharing all this information, but it wasn't trickling down into other languages. And we had groups from all over the world. And so instead of them all searching for this information on their own, what we did is kind of collate it all, and make it available to them. 

Vicky van der Togt  
So we held weekly meetings. And in these meetings, we informed them on all the latest news, all the latest research coming out so that they can then share it with their own communities. And I believe that this really lessens the work load. I mean, so many of these advocacy groups, they do the same type of work, right? They try to get the same information out there, the same type of measures implemented, and there's no reason to all do this work separately. And so yeah, by being that facilitator, we really hope to lessen the workload. 

Vicky van der Togt  
And I think it really worked as well, as that the groups could learn from each other in the process, because it's not just us being a facilitator, they were all in these meetings together. They all share their own personal situations or the projects that they would work on. So what we would see is that, like a lawsuit would start in one country, and then the next country would kind of like take the idea and change it a little bit and implement it for themselves.

Jackie Baxter  
That's a really good point, actually, I mean, you know, being an English speaking person in an English speaking country, you know, we're very fortunate in some ways that, you know, everybody speaks English, which makes us very lazy and very privileged, I think. 

Jackie Baxter  
So I think as you say, you know, all of that stuff might be there. But it's going to be slightly different for different people, depending on their situation, depending on their country, depending on their language. And, you know, it doesn't mean that everything has to be like done completely differently. It just means that it needs to be tweaked a little bit. And kind of Yeah, passed around like Chinese whispers, I suppose in some ways.

Jeremy Rossman  
It's a really difficult problem, because there's so much siloing of information to begin with. And we have all of these difficulties in communication, in like you said it even in just that sort of very basic signposting about very core information. That's difficult enough, say, within the UK, for instance. But when you start to look even within different groups within the UK, you know, where is that information going? Just within the UK, you can see all the inequities that are being really emphasized in the course of the pandemic by long COVID. 

Jeremy Rossman  
And then you start to look internationally, and it gets even more dramatic. And then you start to factor in wonderful things like vaccine inequity, and you know, it just spirals downhill very, very fast. So it's a critical thing to be thinking about, how we are communicating, but how are we are communicating with groups besides ourselves? And besides our own country?

Jackie Baxter  
Yeah. And I guess even things like language, within English speaking, I think, you know, I've definitely noticed a few people saying, Oh, well, in the US, we call it that. But in the UK, you call it something different. And I think the thing that came up the other day was physiotherapist and physical therapist. And I think they are basically the same thing. But it's a different word in each different country. 

Jackie Baxter  
So even within the same language, you've still got those kinds of sort of inconsistencies or things to kind of watch out for. And then when you're communicating within that it's kind of like, well, do I need to translate? Do people do that themselves? So you know, when you're then talking about an actual different language? You've got that issue, you know, 100 fold, I suppose. 

Jeremy Rossman  
Definitely. And that's not even touching on the fact that, you know, when we're talking about long COVID, you know, some countries and some organizations call it Long COVID, some call it post COVID condition, some call it you know, post acute sequellae, you know that, that adds a whole nother level of difficulty. 

Jeremy Rossman  
Because, yes, if you're in the middle of the community, maybe you know, and you're up to date on all the different terms and you're flexible on that. But if you're just being introduced, it's not necessarily clear that they're the same thing.

Jackie Baxter  
Yeah. And coming back to what you guys were saying earlier about, you know, being the bridge between, you know, the medical people and the non medical people for want of a better word. Medical jargon, you know, like, is not accessible to most people. So, it's another kind of translation exercise, isn't it between, you know, the language that researchers and doctors use, and the language that people who aren't. 

Jackie Baxter  
And it's interesting kind of seeing myself as well over the last few years, you know, I now read research papers for fun. And I started to understand all of this stuff, and like, it's quite cool. But at the same time, I have the capacity to do that. Someone who's got severe fatigue and severe cognitive impairment, you know, I couldn't read research papers a couple of years ago, you know, I'm in the fortunate position, where now I can, but, you know, it's not accessible to everybody. And then when you add a language barrier on to that as well, it makes it even more difficult. So I guess that makes what you guys are doing even more important? 

Vicky van der Togt  
I think so. Yes. And in that sense, I guess we're in the same boat. Because I also wasn't able to read research papers at all. I cannot count the amount of times that I reached out to Jeremy asking him or sending him a paper saying, Could you explain this to me like I'm five. And I was very fortunate that he was willing to do that, because I really needed it all the way in the beginning. 

Vicky van der Togt  
But fortunately for me, he's also taught me how to read research papers, which is also a skill in itself and something that we aim to teach others as well, because it really is a skill. You kind of need to figure out what to focus on and but it takes practice and It's not for everyone. 

Vicky van der Togt  
But it's, I think, almost a positive between the two of us as a team. Because if I don't understand what a certain paper says, then most likely the general public won't either. And so it's really almost like this test, if I can understand, then it's fine to share it. But as long as I don't understand, like, No, it's not going to happen just yet. 

Vicky van der Togt  
And it's also a reason why I'm a real fan of things like lay summaries for papers, it's so important to make it accessible for people. And it was a big thing for our own paper as well to make a goodly summary, and even an audio version so that everyone could get the information.

Jackie Baxter  
And that is a really beautiful segue, actually, on to the paper that you guys have brought out. And I think maybe the best question is just to say, tell us about it.

Jeremy Rossman  
So we've been, along with so many people, have been trying to understand what is going on with long COVID. Even though we have a knowledge of other post infection illnesses that have occurred in the past, this is still really new. The amount of research on you know, post viral illness, previous to COVID was pretty small. It's not unheard of, but it's pretty small. And so this is this is a new field. 

Jeremy Rossman  
And long COVID, specifically, is a very new disease. Yes, it's related to so many other post viral illnesses. But that doesn't mean that it's operating in the same way. And so there's so much to learn to understand. And it's a really complicated disease. I mean, as any patient will tell you, it is a really complicated disease, when you have over 200 symptoms that can change over time during the course of the day, during the course of the year, that you don't know how long it lasts, and you don't know what is triggering it, let alone all the different disease mechanisms. It is abysmally complicated, with no diagnostics or treatment. So it can't really understate the importance of a dedicated research community really looking at this, because it is a huge, very complicated problem. 

Jeremy Rossman  
So our sort of take on this was to sort of look at commonalities between different symptoms that patients were experiencing, and trying to understand things that might be linking them, and sort of common disease mechanisms that all might be intersecting together. And our focus on this was really the sort of dysregulation of the acid base balance as sort of that key intermediate between what is triggering the disease and what patients are experiencing. 

Jeremy Rossman  
And so what I mean by that, because, again, this is, you know, easy to talk about in a scientific term, but I can say an acid base balance, but that's not necessarily clear what that means in terms of an individual, and especially an individual that is suffering from long COVID. So what I mean by acid base balance is that when you look and your body and your blood in your tissue, there's a specific amount of acid and base that is in a delicate balance. 

Jeremy Rossman  
So if you've ever seen those, like pH strips that you're testing, like your water, or a pool, or something like that, there's all those different colors, and they show you were basically on the pH range that liquid is, so the body has the same thing. But the body needs to maintain a very specific pH range. So a very specific range of acid base balance in order to work properly. And if you start to get that skewed, either too much acid or too much base, all sorts of things can go wrong. 

Jeremy Rossman  
And one of the things that we really saw was that so many of the different symptoms that we've seen for long COVID Patients can be explained at least partly in terms of a dysregulation in terms of acid base, because, since it's such a core fundamental aspect of biology, it can affect almost anything. I mean, this affects clotting, this affects inflammation. This affects you know, how your muscles feel, this can affect how your brain is functioning. There are so many different things that it can can affect. 

Jeremy Rossman  
So this is a really a broad impact on the body as a whole. But I guess one really sort of crucial thing is to say, Well, okay, why do we think this is occurring? How did we get here? And the reason is that we know that COVID causes a whole bunch of dysregulation in the body. There's no question everything from from lungs to the blood brain barrier to inflammation to vascular change, it's whole bunch of different things. 

Jeremy Rossman  
But one of the things that's very consistent is that it changes blood flow. We know that it can reduce microvascular circulation, so how much oxygen is getting to your tissues, it can affect your lungs and your breathing, and so how much oxygen you're able to get from the air into your blood. And we've seen all this research recently on micro clotting. And we don't really know exactly how that works yet. But we know that micro clotting can also potentially affect how much oxygen gets to your tissues. 

Jeremy Rossman  
So you have this oxygen reduction. And then at the same time, we know that what happens in your tissues, when you don't have enough oxygen, your muscles start to work differently. Instead of using oxygen, well, they don't have as much oxygen anymore. So they switch to what's called an anaerobic respiration, which is just a way of, again, using energy, but doing so without oxygen. And one of the consequences of doing that is that you produce a lot of acid. 

Jeremy Rossman  
And if you have this occurring throughout the whole body, and over a long enough period of time, we think that this excess acid production that's coming from this anaerobic respiration, but it's probably coming from this change in blood flow and oxygen to the tissues. All of that is creating excess acid that is stressing the body, that is then setting us up for all sorts of diseases. 

Jeremy Rossman  
I mean, we're not saying at all that this is the only thing that's going on, but like not at all, I mean, clotting is clearly going on, inflammation is going on. But we think that this is a key linker between all of these different things and what we're seeing on a symptom level. And this fits in with some of the data that people have seen in acute COVID about excess lactate, which is sort of used as a marker of how much of this anaerobic respiration you have. 

Jeremy Rossman  
We see similar things in ME. And so a lot of the information that we've had here has also been based on what we've learned from the ME community. And so that's sort of the very broad overview of sort of what we're looking are how we think it sort of all intersects, but it is very big, very broad, and I'm happy to dive into any bit.

Vicky van der Togt  
I was gonna say, there's really no short way to explain this hypothesis. We've done it many times now. There's no way to keep it brief. You've done brilliantly, though. 

Jackie Baxter  
Yeah, I think you were beautifully concise. And, and very clear, as well, you know, which again, speaks to what you guys are doing with the whole bridge thing. And, you know, I love what you're saying about, you know, this is a thing, but, you know, everything in the body is so connected, you know, you get one thing that goes out of balance, and that has a knock on effect on something else, and something else and something else. 

Jackie Baxter  
And I think there seems to be a lot of kind of disagreement into what is that kind of bottom of the pyramid thing. But I think there's you know, a lot of agreement on the fact that things like clotting and inflammation and the nervous system and the immune system, you know, they are all kind of daisy chained, don't they, into one kind of thing. And, you know, yeah, no one can really quite agree on which one sits at the bottom. 

Jackie Baxter  
And maybe it's not the same in every person, because you know, long COVID, it's one condition but it's actually not, you know, it certainly seems to be very different in different people. You know, some people will clearly have a lot of dysautonomia as their main thing. Some people may have more obvious immune dysregulation. Some people may have like absolute shedloads of inflammation. Some people may have had scans and know that they have clots. And like all of these things are definitely connected, but I don't know... 

Jackie Baxter  
Do you have a theory on whether long COVID - Is it one thing? Is it many things? Is it many things that are all connected and look different in different people? That's another ridiculous question, isn't it? 

Jeremy Rossman  
But it's a great question, though. I mean, it's it's an incredibly Important question too. Because this is really that disconnect between what we see when we read, you know, a new scientific paper and what patients are experiencing. And I don't know, exactly, I don't think that it's multiple diseases. But I think that you have similar mechanisms. 

Jeremy Rossman  
But, you know, just as an example, just as I was talking about how you can have all of these different changes in how much oxygen gets to your muscles, once the, you have that reduction of oxygen, then you have a similar set of outcomes. But how you get to that reduction of oxygen has so many different paths. 

Jeremy Rossman  
I mean, you can have inflammation reducing blood flow, you can have it, you know, lung damage, that is reducing oxygen, you can have, you know, damage to the microvascular, you can have clotting, you can have direct damage to the cells or the tissues themselves. So, with all of that there's so many different permutations about how you get there. 

Jeremy Rossman  
So I think one of the big challenges is to try and deselect cause from effect. So what are the similar causes that we are seeing in all patients, versus what are the effects that maybe some patients have, and others don't. And even acidosis, or this acid base imbalance, is something that varies. Which makes sense, because everybody isn't going to have the same change in oxygen flow to every muscle in their entire body. There's going to be variability in there, it could change over time, it could change during the course of the day. And that's what we see, too. 

Jeremy Rossman  
So I think that it's trying to piece together, those things that are in common, versus those things that might be affected individual people in individual circumstances. And that is incredibly difficult. And it's even more difficult, because, you know, one of the sort of first things that you were mentioning here is this sort of, we see all of these papers on individual things. 

Jeremy Rossman  
And there's been this trend in biology for quite a long time of sort of siloing, everybody really ends up specializing on their own very niche part of research. And that's really good, because it allows you to really develop that, become really an expert in that. It's helped advance science in a lot of different ways. 

Jeremy Rossman  
But the consequence is that often we miss that connect between all these different fields. And I think there's some effect of the long COVID research and in looking broader, and trying to make those connections again. So I would be really hopeful, it would be great to see if one of the long term consequences of the pandemic is a sort of broadening of those silos. It hasn't really happened yet, but there are indications and there are some groups that do that wonderfully. Yeah.

Jackie Baxter  
And I think again, you know, people like yourselves that are trying to sort of facilitate this, like Vicky was saying earlier, you know, getting these people to talk, introducing them to each other. It's that kind of like, overview, isn't it? Like, you know, someone who is able to sort of look at everything, and, with the knowledge and understanding to be able to do that, able to go, Okay, I think they should be talking to them, because they're kind of doing the same thing. But you know, in two different corners of the world. And because they are in two different corners of the world, they haven't really realized that. And in kind of yet joining some of these dots together, seems like it's an amazing thing to be, hopefully, managing to do.

Jeremy Rossman  
Absolutely. And I think that, you know, some of the things that we've seen in long COVID research in general, has been this real bridging of a lot of different groups coming together. The long COVID community, including the long COVID community in the research field, has really come together in a lot of different ways. There's a lot of exchange of information. There are still silos, and that still needs to be addressed. But there is a lot more intersection than maybe we saw at the start of the pandemic.

Vicky van der Togt  
Yeah, and they're also just so many different long COVID networks, both patient networks as well as a network of researchers of different disciplines, as well as that there's now different events being started up where different disciplines come together. So that's that's been great to see, and so necessary? 

Jackie Baxter  
Yeah, amazing. I was just kind of like hypothesizing in my head just there, which is not always a good thing. But, you know, we were talking a moment ago about how, you know, all of the body systems, all of the things are all connected. And, you know, finding the sort of bottom of the pyramid, you know, what is that underlying thing, being the sort of holy grail question, right? 

Jackie Baxter  
But, I mean, in some ways, how much does it matter, if we kind of think all of them are connected? If you were to take one of the ways in, if you were to say, target inflammation, that is going to have a knock on effect on to this and this, and this, and this? So if that's the thing that you're able to target, because there are, you know, interventions, drugs, whatever available? Is that worth doing? 

Jackie Baxter  
And then, I'm using inflammation as an example, but, you know, I don't know - we want to know because we want to know, right? But how important is that? And is that something that we can sort of start targeting now while we wait? Because, you know, research takes time. 

Vicky van der Togt  
Well, you ask, how important is that? I think it's very important. It's what Jeremy said before, it's that differentiating between cause and effect. We do see different research teams, and research being published, that specifically targets inflammation, for example. But it's not a cure, it doesn't solve things. 

Vicky van der Togt  
And that doesn't mean that it's not valuable. I mean, symptom reduction is so important, especially while we don't have a cure. But I think it's safe to say that for us, specifically, that we're really looking for that cause, and trying to really tease that out. 

Jeremy Rossman  
No, I completely agree, that it's the sort of cause versus effect. And what is a treatment, versus what is the cure. And I think that that's the really big distinction in terms of how far down on that pyramid are you. Because if you actually get to that base level of understanding how this disease is first triggered, and continually triggered in patients, then you might actually have a cure. But if you're further up on the pyramid, you might have a treatment. 

Jeremy Rossman  
And not dismissing that at all. Because if we can have a treatment that is very effective for long COVID, that would be spectacular right now. So that's sort of the distinction is that that treatment versus the cure. And I think that there are a lot of people that are looking at those sort of different levels of those pyramids, you know, whether that's inflammation, or whether that's acidosis, or whether that's hypoxia, you know, whatever. And looking and saying, Okay, well, here's an intervention specifically for that level. And sometimes that helps, but one of the things that we're often seeing is that those interventions only help for some people, or only to some degree. 

Jeremy Rossman  
And so that's why, you know, the farther down, you can go on that pyramid, the more those interventions will help patients as a whole instead of just subsets. But yeah, the real core thing is to understand what is the driver for this, beyond just saying, okay, SARs cov 2. Beyond just saying the virus, we know that. But why? What about it? And what about it causes persistence? And that's a really difficult thing. 

Jeremy Rossman  
And that is, you know, a lot of people are saying, Okay, well, we're getting persistent viral proteins, or persistent virus, maybe persistent virus in the gut. But how long? In what tissue? In what way? There are so many unanswered questions about this right now, and it's a really complicated area. So we need a lot of people really looking at this from a lot of different angles. 

Vicky van der Togt  
Yeah. And on that cause and effect, like why we specifically focus on that cause, I mean, I can at least speak for myself on that is that, over the course of the pandemic, I have made many friends and partnered up with so many different long COVID groups. As well as that, I know a lot of patients, I've connected with many patients. 

Vicky van der Togt  
And so based on this hypothesis, I was able to develop a treatment that I did myself, which really gave me my life back. But I never started doing this just for me, just so that I could get my life back, like I want to help them as well. And like, for me, the work is simply not done before I can help all of them as well. And so given that I went from basically being bed bound to being able to do everything again, like, that's the goal, that's the goal for everyone else as well.

Jackie Baxter  
So your hypothesis, this paper, which we'll link in the show notes, is to deal with the disruption of the acid base, I think I've got that right. So, you know, a hypothesis needs to be tested, I think, is that correct? So how do you go about testing it? And yeah, what comes next?

Jeremy Rossman  
Yeah, of course, the critical thing is, you know, it's easy enough to come up with a hypothesis, but we actually need to show whether or not this is occurring. And then, of course, if it occurs, what we can do with it and about it. So in the hypothesis paper, we do sort of outline of how this could be tested. And this is exactly what we're sort of looking at doing right now. 

Jeremy Rossman  
So there's a whole bunch of data that is out there in the literature already, that is suggesting along these lines, that there is a disruption of acid base balance, we do see things like elevated lactate. 

Jeremy Rossman  
So just sort of as an example, when you're exercising, when you exercise really intensely, at a certain point in time athletes have, you know, they often call this the lactate threshold. And professional athletes talk about this all the time is, and that's basically how strenuous do you exercise, for how long, until you get to that point in which your muscles start to go anaerobic instead of using oxygen. 

Jeremy Rossman  
And what we have some evidence for in the literature already, is that long COVID patients do tend to produce more lactate faster and longer than control participants do. And so that's a good indication that at least there is some level of this acid base dysregulation that either is occurring or can occur in long COVID patients. So that's that's sort of the starting point is that there's some good published evidence already. 

Jeremy Rossman  
And so what we're looking to do is really to then go and test as the first step just to say, what does it look like in long COVID patients normally, like not exercising, but just just normally? Do we see a dysregulation, and you can test lactate, but also specifically looking at, well, how much acid is in the blood? What does that look like? So we can test that. 

Jeremy Rossman  
And then we can test that response to - not necessarily exercise, I don't want to use that term. Even though technically, in research, we would call it exercise. But I just mean, some level of exertion, you know, some level of activity. How do long COVID patients respond to movement versus control participants? And what does that mean in terms of buildup of lactate or acid? And then recovery? And how does that correlate to symptoms? 

Jeremy Rossman  
So it's relatively straightforward, because we're just sort of looking to say, what is happening in long COVID patients in the blood? And how does that correlate with symptoms? And how does that correlate with movement and activity and exercise? And so that's the first step that we're sort of putting together some collaborations right now to hopefully be able to do that, hopefully in the next couple of months. 

Jeremy Rossman  
And then from that, the next step would of course be to say, Okay, well, if this is occurring, and if this is occurring regularly, in long COVID patients. And you know, there's reason to think yes, it probably is, but we don't know for sure. That's why we need to test. If in fact, it is occurring, well, then maybe that's a real intervention point. 

Jeremy Rossman  
Whether that's a cure, I'm not sure because you're not treating whatever is sort of perpetuating this issue, but definitely a treatment at the very least. And it could have pretty broad effects. And it could be relatively straightforward. In the medical community, there's a long standing history of treating acidosis, which is what happens when you have too much acid in the blood. So we have all sorts of interventions that can be used. 

Jeremy Rossman  
Also, in exercise science. So there's a huge history of people looking and saying, How can you increase performance? How can you decrease lactate? How can you, you know, decrease acid, help recovery? So we have a lot of expertise on this, if we can show that in fact, this is what's occurring. 

Jeremy Rossman  
So that's the hope is do something relatively simple. How broadly is this occurring? Is it occurring? And if so, can we start to tweak that? Can we start to change it to actually, hopefully provide some real patient benefit? 

Jackie Baxter  
Yeah, this is exciting. And it sounds like as you say, you know, certainly to get some idea of whether your hypothesis is right, it's not crazy complicated to make this happen. I feel like you're about to disagree? *laughs*

Vicky van der Togt  
Well, no, I wasn't gonna say it's crazy complicated. But we did outline in the paper that there's a real need for continuous monitoring of lactate levels. And that is a difficulty because currently, we don't have any reliable or validated device that does that. And so we outlined clearly that there's most likely a need for use of a bio sensor. 

Vicky van der Togt  
And so we've been watching with with Hawk eyes for any research coming out, that specifically is about developing bio sensors that measure lactate pH. And luckily, we were able to find a company who has actually been in the process of developing this, which we are most likely going to incorporate into the study as well, which is very exciting to me as well. It's just this very like novel device that we can try. 

Vicky van der Togt  
And there's just so much happening on that front as well, in the specifically focused on monitoring lactate levels, kind of the a lot of research teams are working on developing kind of the same type of sensors, as that we have for glucose. So like patches and stuff like that, that's very exciting to me, given this, this hypothesis, it will make things so much easier. Because yeah, ideally, we would just stick on a patch that does a 24 hour monitoring, and we would get a lot of valuable data. And we're not quite there yet. But I do have hope that we will get to that point soon.

Jeremy Rossman  
Overall, on a patient level, and I can say this having been a long COVID patient too, is that I know that it's incredibly frustrating, that this feels incredibly slow. And it does. And as you're experiencing this, it is incredibly slow. But on a research side, on a research community side, we are learning an incredible amount in a very short period of time. 

Jeremy Rossman  
And yeah, there's there's definitely a need to have more research, to have more trials, to be more focused on having clinical trials that are really going to benefit patients. So there's optimization here, without a doubt. But there is a huge amount of progress that's been made. And I'm not just talking about anything that we're doing, I'm talking about the field as a whole, it gives me a lot of hope that we will have some interventions that can be used in the not too distant future. 

Jeremy Rossman  
I don't know whether I can say that's a cure or not. Again, that's a different story and leads to the whole other question of, you know, if you're being treated and are feeling better, well, you know, you're still at that risk of reinfection. And so that is that's just I guess the last thing that I want to say is that I think, while we're making a whole bunch of progress, we still have that continual risk to patients, is even that when they get better, or if they get better, we're at a constant risk of the virus still going around. 

Jeremy Rossman  
And so it's a whole other issue, and why something that is actually either a full prevention or a full cure is so incredibly valuable. But at this point in time, I will take anything that is proven that we have good clinical evidence for that shows, in fact, it does work. And I'm really hopeful that we will have something along those lines in the not too distant future. But it's slow, and it's frustrating. And I feel that too

Vicky van der Togt  
Throughout our work over the last couple of years, we have learned so much from other patient communities. We've learned a lot from the ME community. I connected with the ME community in the Netherlands fairly early on, and they kind of warned me about what was to come, in terms of the gas lighting that I should be expecting. And the type of responses to even mentioning ME. 

Vicky van der Togt  
And they were right. And I feel like they've given me kind of like an early notice that I should develop an elephant skin. And I did. So that's really good. And I just hope that all of this, I don't just hope, I'm quite sure that all of this will benefit that patient community as well. But it's not just ME community or better yet, it's not just from one specific cause. 

Vicky van der Togt  
I mean, we have different groups in the Netherlands, for example, we had a big Q fever outbreak in the Netherlands years ago. And that also left people with long term symptoms. And although they get a different label, the symptoms are so similar. And so I do believe that even though the eventual treatment, or cure if we can find one, may not be exactly the same. I do believe that everything that we learn now can be applicable to other diseases and other patient groups. 

Vicky van der Togt  
And it would be amazing if they can be helped as well. Because yeah, it must be so difficult to see. And I'm hearing these comments from those communities as well, it's so difficult to see to that there's now millions of people with long COVID. And they get all this attention. And you know, of course they do, because it's a gigantic problem. 

Vicky van der Togt  
But they've been advocating for so long. And they have been fighting tooth and nail to get small amounts of research funding, and oftentimes that wasn't even given to them. And now there's this huge amount of funding being made available for long COVID research. So it should benefit them as well. It would only be fair. And so that's that's really my hope. 

Vicky van der Togt  
It doesn't end with finding a potential treatment, right? I mean, we started this whole conversation with that information needs to be communicated to those it affects. And so what we've seen now happening in many countries, and I mentioned we're involved in partnering up with many different long COVID groups. And so we kind of hear these stories from different countries. 

Vicky van der Togt  
That even though there's nowadays a huge body of research, and even some evidence that some therapeutics may work, it's just not trickling down. There's still such difficulty with going to your GP or getting your medical specialists to take you seriously. There's no education on it. 

Vicky van der Togt  
And so even if we do find that treatment, it needs to be communicated. There needs to be education of those medical professionals that are supposed to treat the patients then. And that's going to be difficult, because that requires a framework and requires funding to get that done. And so it's going to be difficult. So there needs to be a shift in mindset.

Jackie Baxter  
Yeah. Which brings us back to the work that you guys are doing in both the research field and the communication field being super, super important. 

Jackie Baxter  
Guys, thank you so much. This has been so fun. I feel like we could keep going for an awful lot longer. And yeah, maybe you want to come back when you have some results. That would be really cool to share as well. So yeah, thanks for giving up your time.

Jeremy Rossman  
Thank you. That'd be great to come back.

Vicky van der Togt  
You're very welcome. Thanks for having us.

Transcribed by https://otter.ai