139 - Patrick Ussher & Peter Deen - Excessive Thirst in ME/CFS & Long Covid

Episode 139 of the Long Covid Podcast is a chat with Patrick Ussher and Peter Deen about excessive thirst in ME/CFS & Long Covid. We talk about what this is - and how it can be a very serious issue, as well as what brought Patrick & Peter together for the research they are now doing.

The Survey mentioned is not quite ready yet - it will be added and publicised when it goes live - also follow www.longcovid.org 

Peter: 

• website https://www.streasure4health.com
• https://www.linkedin.com/in/peter-deen-4b9a1993/
• Email: info@streasure4Health.com

Patrick: 

• website www.patrickussher.com
• Book: www.themythofprimarypolydipsia.com 
• YT channel ‘Understanding Myalgic Encephalomyelitis’ https://www.youtube.com/channel/UC8p46sk36RDASjeGHhF9G1A

Visser & Van Campen study: https://pubmed.ncbi.nlm.nih.gov/32140630/

Health Rising blog: https://www.healthrising.org/blog/2023/12/09/chronic-fatigue-syndrome-thirsty-psycogenic-polydipsia/

Thirst Survey **coming soon**

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

(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello and welcome to this episode of the long covid Podcast. I'm delighted to be joined today by Peter Deen and Patrick Ussher, and we're going to talk about a whole load of stuff around excessive thirst and how this relates to long covid and pots and MECFS, and what brought these guys together as well. So a very warm welcome both of you to the podcast today.

Peter Deen  
Thank you very much.

Patrick Ussher  
Thank you, Jackie.

Jackie Baxter  
So to kick off, maybe you would just introduce yourselves. 

Patrick Ussher  
Sure I'll go first. My name is Patrick Usher. I'm an MECFS patient. I've been ill for six years. Initially, I was pretty not functional, down at two and a half 1000 steps for a few years. I'm more functional these days, thankfully. And one of the symptoms I suffered from was excessive thirst and to the point actually that I was hospitalized with life threatening low blood sodium levels. So that's what I'll be talking with people about today,

Peter Deen  
I'm officially still a professor at Robert University in Nijmegen, but I'm not practically active anymore. I've always been very interested to understand how a body works in order to improve the quality of life of patients and people in general. And let's say, for the last year, I focused on MECFS because I see a lot of high needs with the patients, of having more clarity about the things. 

Peter Deen  
And in fact, I also started the company, which is called Streasure for health, in which I developed a diagnosis and a sense of for helping long covid And MECFS patients out, based on the underlying mechanism that I think I understand. Now, maybe you would like to tell, Patrick, how we met.

Patrick Ussher  
We met after I wrote a blog about the thirst. And then we connected. Then to to refine it further, but we can come to that point of the of the story later. Yeah, yeah.

Jackie Baxter  
And there's, there's a lot of interesting stuff here, because, you know, obviously my knowledge of long covid doesn't actually go back quite far enough to your experience, because you became unwell before long covid was a thing. But, you know, I don't know how long it really took. It took longer than it should have. But you know, before people started making a connection between Long covid and MECFS, which has obviously been around for many, many, many more years than long covid has. 

Jackie Baxter  
But I think the jury is still out on whether they are the same illness. But what we do know, obviously, is that there are a lot of crossovers. But I think what is also just really cool is that people are starting to take things into their own hands. They are thinking, Okay, well, this is showing up for me. So what can I do? And this is where we're getting some really cool kind of research collaborations, which is, I guess, what is brought you guys together, kind of across the world as well, you know, to try to look into all these different bits and pieces of the illness. 

Jackie Baxter  
Because what we also know is that one person with long covid is one person with long covid, one person with MECFS is one person. So there's a lot of different presentations. 

Jackie Baxter  
So maybe to start with excessive thirst. I mean, this is something that does come up again a lot in long covid. We talk a lot about electrolytes and hydration and stuff, and I imagine it's similar in a lot of the MECFS world. But you know, your experience had sort of worse consequences. 

Jackie Baxter  
What does excessive thirst actually feel like, you know, we've all known that feeling of, well, haven't drunk enough today. But what does it feel like to you? 

Patrick Ussher  
Well, Jackie, you're absolutely right. My experience was at the more extreme end, and it seems to operate on a spectrum amongst MECFS and long covid patients. I know from one study of long covid patients, about 10,000 people were asked what are your worst symptoms? And 40% of them said that excessive thirst was one of their worst things that they had to deal with. 

Patrick Ussher  
But I knew that I was when I was experiencing it. I was at the worst end. I was aware of a few other people online who were as bad as I had been. Had also been hospitalized, but I was definitely it became something very serious, as you said. So excessive thirst, in a way, it can sound quite benign, you know, because it's sort of like, it's just thirst, right? It's doesn't sound like such a big deal. But when I was at my very worst with this, which was in mid 2020 until January 2021, I had a six month period. I call it my descent into hell. 

Patrick Ussher  
And what was interesting about it was the thirst was always really bad whenever I crashed, so whenever I was in post exertional malaise. It went it went just through the roof. And it was basically like every single muscle in my body, every single part of my body, was screaming with thirst. It was just the most dramatic signal that was like ramped up far and beyond anything I'd ever previously experienced before. 

Patrick Ussher  
And no matter how much water I drank, I could never quench the thirst. And it just ended up into this cycle. I would feel this terrible thirst, I would drink a lot of water, and half an hour later I've already peed all of that out, and then the cycle would just begin again. And I was clueless. You know, I was really clueless as to why, why I could never quench it. So whole bodily screaming with thirst. 

Patrick Ussher  
The other thing is, although I didn't understand at the time, I had this very horrible sensation that blood was not reaching my skin or my brain. So it felt like inside of me, I was actually drying up. Now, I know that's low blood volume, but at the time, I didn't know. So there were things like that. 

Patrick Ussher  
And actually, during that period, I mean, my good days, I was drinking about six to eight liters. That was when I wasn't in a crash. When I was in a crash, I could drink, no joke, between 10 and 20 liters over 24 hours, and it was particularly bad at night, like if I was in a bad crash at night, I could drink 10 liters overnight, and I would feel like my muscles were twitching and kind of spasming. 

Patrick Ussher  
So these were, these were very extreme symptoms. I remember one time waking my dad up and going into him and saying, Look, can you please hold me? So these were very severe symptoms that I struggled with, and I was always walking on this tightrope. If I crashed, I went into hell for two or three days, and then it would become more manageable. If I just lay very still, thirst would go down. 

Patrick Ussher  
But yeah, that's what it's like, Jackie, when you're at that extreme end, whole body is streaming with it. And no matter what, how much water you drink, it never works.

Jackie Baxter  
Yeah. And this is something that's, again, as a person who just needs to know everything, which is me, you know, people started talking about, oh, you need to increase your fluid intake. I was like, oh, okay, well, that's something I can do, let's drink some water. But as you say, drinking water on its own isn't necessarily going to help, because it goes straight through you, and actually it makes things worse in some ways, because then you just need to get up to pee the time, and that's disruptive to rest. It's disruptive to sleep, and it's not putting the water into the places it needs to go. 

Jackie Baxter  
So I suppose that's where the salt comes in. But you know, adding salt to everything willy nilly is also a little bit unsafe, certainly for some people. So maybe we need to hand this over to Peter. And I mean, this is a really wide open question, isn't it, what's the sort of scientific explanation for what's going on here?

Peter Deen  
Because for me, when the blood from Patrick was there, it was, for me, quite a surprise that water was involved here, because I've worked for 15 to 20 years scientifically on water homeostasis. The reason for that effect, also Patrick figured out, and that's why I think this guy is an amazing person, Patrick, because he figured out so many different scientific things that I would have loved if my PhD students would have done the same thing, or postdocs. He's not even biology student. He did he did it himself. 

Peter Deen  
But to say the explanation is, when you normally have a low blood volume, your body tells you that you need to take more salt because you feel a bit weak. And you say, Hey, take a chip, or whatever, something salty, and you would like to take some salt. And when you then take salt, and your blood becomes a bit more salty, you could say, then it gives your body a very strong signal to drink more water. 

Peter Deen  
And what's so surprising, in this case, with long covid and MECFS patients, is that, that there is a sense for water, but it's hardly any sense for to take some salt. And that's because, when we discuss it, Patrick and I, and I said, Well, the first sense, the first sense that you had, is to drink more water without having any crave for salt. And that's this quite a paradox, physiologically, because normally I said, you're going to get a sense for salt, and then, when your salt increase in your blood, then you're going to be thirsty. But now you've only thirsty. 

Peter Deen  
And in some way you can explain it, because let's say there are papers out which show that MECFS patients, but let's say that apparently the enzymes which tell your body that you have to take more salt are not increasing in somebody who's in a low blood volume. So that's physiologically, quite well, quite a paradox. 

Peter Deen  
When you don't have the increase of these hormones, you don't get a taste for salt. So that explains why you want to drink water instead of that you would like to have some salt as well, and that you more or less have to tell yourself that it's better to, because of the low volume, to take salt as well. 

Peter Deen  
And Patrick does it in the form of ORS, which is then glucose and salt. And water, and that's the most efficient way in which your intestine can take up salt, because those are particular proteins which are taking glucose and sodium to form the water to the other, and then water will follow. So that's a bit of a nutshell what is happening.

Patrick Ussher  
Just to add to what Peter is saying, We know that in MECFS from a paper by two Dutch researchers, Visser and Van Campen, that MECFS patients can be one liter or more short on blood, so they may only have four liters rather than five. And actually, in their paper, which was called "Low blood volume in chronic fatigue syndrome relation to complaints," they found that one of the patients had one and a half liters less blood than normal. 

Patrick Ussher  
And this is something that creates a lot of the symptoms of MECFS, including the exercise intolerance, because your heart can't exercise if you don't have enough blood in you. But it also will create this signal for thirst, as Peter is alluding to, because the brain actually has, I never knew this before, all of this ordeal. But the brain actually has two thirst centers, one for water and one for blood, called the hypovolemic thirst center. 

Patrick Ussher  
And so that was what I later worked out was actually going on in me. I was never thirsty for water. I was, I was like, Dracula, you know, I was actually, I was actually thirsty for blood, as it were. It's a new a new take on MECFS! 

Patrick Ussher  
But also just to pick up again on what Peter saying that these hormones that control salt retention, they're called renin angiotensin and aldosterone. They work together as a group. They're called the renin angiotensin aldosterone axis, or RAAS and in a healthy person, they're working great to keep your salt levels up. But in MECFS, it doesn't work. 

Patrick Ussher  
The renin angiotensin aldosterone system is suppressed. We know that from a few different papers, and because of that, you're losing salt all the time. Every time you go to the toilet, you're peeing out salt, and your blood volume is going down, down, down. And over time, it eventually settles somewhere quite low and and then you're getting the hypothalamic thirst, the thirst for the low blood volume. 

Patrick Ussher  
As Peter says, It's a paradox, because, you know, you would expect someone to crave something salty when they're in that situation, but they don't, because angiotensin two, one of those hormones, is responsible for salt craving, and so if it's getting diminished, you don't even experience a craving for salty water. So you're just drinking water and making the situation worse. 

Jackie Baxter  
So the signals are all scrambled. You're not getting the signals that you should be. Yeah, that's very interesting. I mean, again, you know, it's an interesting take on it. People with long covid And MECFS are vampires. There's probably a paper in there somewhere. 

Jackie Baxter  
But, you know, joking aside, you know this, this is something that comes up again. You have more knowledge in the MECFS world, but certainly in the long covid world, low blood volume linked to dysautonomia and pots. Again, very, very, very common. And also, a lot of people have had some success with increasing the hydration with the salts or electrolytes. You know, doing one or other doesn't seem to do it, as you have discovered. But you know, both together can really make a difference. You know, it's not a cure, but it can make a lot of difference. 

Jackie Baxter  
And you know, I mean, like you were saying about the signals, if you don't understand, then you can't do anything about it. Whereas, if we now kind of understand, Okay, well, probably low blood volume, probably hydration issues of some description, my body isn't giving me those signals, but I know that it should be. So therefore I can maybe look into things like hydration and salts, and I know that I need to add the salts in, and therefore I can actually do it, even though my body's not telling me that I need to. 

Jackie Baxter  
So I suppose that's where starting to understand a bit of what's going on can actually be hugely helpful, because otherwise, how would you know to do that? So, you know, it's knowledge is power, isn't it? You know, we may not be able to solve the whole problem in a oner. But, you know, each little piece of knowledge makes us have a little bit more understanding, and that little bit more understanding then gives us some ideas of what we can do. 

Jackie Baxter  
As you just alluded to low blood volume, you know, what you said, four liters out of five. That's 20% you know, that's actually huge. And then when you're talking about things like oxygenation of your cells, which is hugely important, if you have a low blood volume, it's not carrying the right amount of oxygen around either. 

Jackie Baxter  
So that may link into some of the other things that we're starting to see about oxygenation. And the oxygen getting to the right places, and all of that sort of stuff, which is starting to sidestep into the breathing world. And I promise we weren't going to go too far down that rabbit hole. But it is super, super interesting, isn't it? That there is now more knowledge starting to come out about this. 

Jackie Baxter  
And I suppose does this may be tangent quite nicely into your collaboration. Now, you guys met, I think, Patrick, you said that you'd written an article and you've also written a book, I think, which I can link into the show notes if people want to follow that up. And that brought you two together. Do you want to talk a little bit about that? 

Patrick Ussher  
Yes, Jackie, if I just in order to explain how the collaboration came about, I'll just have to back up a little bit. What happened was, is I ended up in hospital. That was in January 2021, and I was hospitalized with a low blood sodium level of 116, so the normal range is about 135, I think, to 145, or something like that. So it was a very low blood sodium level, and it was very dangerous situation, because your brain can swell and you can get into a coma or whatever. 

Patrick Ussher  
So I was hospitalized. I was treated. I learned from my medical records later that I was essentially being treated as an intensive care patient, but in a standard bed. They didn't have space in the ICU at that time, so I was getting bloods every two hours, morning and night, etc. It was quite a serious situation. At the end of that week, they diagnosed me with something called primary polydipsia, also known as psychogenic polydipsia. 

Patrick Ussher  
And this is a condition that it is basically thought that people are drinking a lot of water, not because they need to, but because they're mentally ill, and they have some kind of strange psychological compulsion to spend their whole day drinking water when they don't actually need to. So that was what I was diagnosed with. 

Patrick Ussher  
And I was treated throughout my time in hospital, not by everyone, but by a few people, as if I was mentally ill. I would be talked to in a way that suggested that I wasn't being treated as in a way that I felt was kind of dignified at times. And I did, at one point, also hear them having a laugh about their psychogenic polydipsia patient. They didn't know that I could hear them. 

Patrick Ussher  
So this was quite humiliating. I tried to explain that ME patients can be very thirsty. I pointed to some papers about it, but they didn't want to hear so I got out of hospital. My Blood sodium was normalized, and I was very grateful for that. And over the following couple of weeks, I had to then try and work out myself what was probably happening. 

Patrick Ussher  
And that's when I stumbled upon the ideas of low blood volume, and I was able to fix that, and we can talk more about oral rehydration solution and so on later, but it had a magical effect on my thirst, when I was able to work out that I was actually thirsty for a lack of blood. But I just wanted to put the whole situation behind me, because it had been quite traumatizing, and I just wanted to move on with my life as best as I could. 

Patrick Ussher  
But about a year and a half later, I had this little voice nagging away in the back of my head saying, you know, what is psychogenic polydipsia all about? Who came up with it? What is its history, what's its rationale? So I started to research the papers that have been written about psychogenic polydipsia. There's not many. There's only about 30 50 lifetime papers, which is nothing. 

Patrick Ussher  
I went back to the beginning 1930s 1940s and I read through pretty much every paper, at least the abstract, but actually read through most of them in detail. And I was really struck by a few different things. The first is the people even writing today about psychogenic polydipsia say that they don't know what causes it. They say that they they actually regard it as a mystery. And some people will say, you know, but even though they say that, they nevertheless make the following leap to it must be psychological. 

Patrick Ussher  
So it's a similar pattern. We don't know what it is, therefore it must be mental health. Then I saw the fact that nothing much had actually changed, except for a few little things since papers back in the late 1950s that essentially, those people back in the 40s and 50s had worked out what they thought it was a psychological problem, and they had their rationale, but that since 1959 the amount of change in understanding is negligible. It's kind of remained a bit like a medical relic. Then I was thinking, Okay, that's interesting. 

Patrick Ussher  
Then I found out that the fact that the brain has a thirst center for blood was only discovered in 1968 so the people who were trying to understand the thirst at the beginning didn't even know that you could be thirsty for a lack of blood. Never mind the fact that they didn't know anything about MECFS either. 

Patrick Ussher  
Then, when I was reading a paper from 1959 called compulsive water drinking, which is another term for psychogenic water drinking, and it's by two people, Barlow and de wardener, and they were looking at case studies of so called compulsive water drinkers. I was reading these case studies, and they were full of terrible, blamed victim, Freudian stuff, from the part of the authors. 

Patrick Ussher  
But I was reading them, and I was saying, these are MECFS patients, because when I was reading about their symptoms from all the way back. These people in 1959 it was actually things like they developed health problems after other you know, health conditions. They were breathless upon exertion. They ached everywhere. You know. They had loss of stamina. One of the patients in that paper was described, I kid you not, as having hysterical weakness of the legs. So if that's not a Freudian term for post exertional malaise, I don't know what is. 

Patrick Ussher  
So I was thinking then in MECFS, people are thirsty with a very similar pattern, dilute urine, hyponatremia, unquenchable thirst. The pattern in psychogenic water drinking that is taught to medical students, is the same hyponatremia and dilute urine, and they're always drinking. And I thought to myself, is it? Has it always been a mistake? You know, has what they call psychogenic water drinking, at least in a subset of patients, always been a misreading of thirsty MECFS patients, POTS patients who actually have the same symptom presentation because they don't have enough blood, and that's why they're thirsty. 

Patrick Ussher  
So this hypothesis formed in my mind, and I said, you know, Patrick, you're probably going to have to write something about this. So I sat down to write something. I thought it would be 10,000 words. We'll leave it there. But the more I researched, the more it grew. And in the end, I spent a year working on a book. It ended up being 50,000 words, and it's called the myth of primary polydipsia, why hypovolemic dehydration can explain the real physiological basis of so called psychogenic water drinking. 

Patrick Ussher  
And in that, I went through the whole history of primary polydipsia. It's Freudianism. You know, people used to say back then that these patients were having these symptoms because they weren't having enough sex, or because they were female, like that was the level, right? I went through all of that. I went through the stuff in MECFS, and I put forward a new theory. 

Patrick Ussher  
Now, of course, it's published a book, but no one's necessarily going to read it. So then I wanted it. So then I wanted to write some blogs about it. So I wrote a blog for health rising, which is the wonderful MECFS long covid, pots, blog run by Cort Johnson, in which I summarized my experience and the arguments in the book. 

Patrick Ussher  
And then that blog was published back in December, and I really hoped that it was going to lead to something I was really longing for, some kind of collaboration, someone who had experience to come out of the of the ether and say, this is interesting. Let's work together. And my prayers were answered. And Peter wrote me an email and said, You know, I really enjoyed reading your blog. Let's have a zoom chat. 

Patrick Ussher  
And so that, you know, because Peter has a background in water metabolism, he already knew about psychogenic water drinking in great detail. And, you know, he's someone who who's interested in solving puzzles. So that's how we then came to actually collaborate.

Peter Deen  
Was the connection. And then that's I was I said, I was amazed that Patrick, not being a biology student at all, was able to figure this out as a patient. So it was really cool. And I directly felt the connection, because this was water. In fact, I've worked for about 15 20, years on water homeostasis, that's a bit of a different disease. Was called nephrogenic diabetes, this sort of people who have lose a lot of water. So I've done diluted urine because of problems of the kidney. 

Peter Deen  
And I thought, well, this is very cool to have a guy like him being able to figure this out. So let's say we got in contact and saying, and Patrick also said, Hey, I'm busy trying to write an hypothesis paper so that, well, why not we team up? Because I can bring in my scientific background and knowledge about these things. Besides that, I'm very interested anyway, about the whole mechanisms here in relation to  MECFS, like long covid, and let's see where it brings us. 

Peter Deen  
So let's say that there's more or less is that we are now, let's say we I had some details about taste for salt, because I was surprised that that you drink so much water, whereas and taste for salt comes. So we'll look into the scientific literature about what's now out there on these kind of things, and there are even connections, possibly to EPO, which is also very well known to be reduced in in MECFS patients. With certain patients with pots. 

Peter Deen  
So we came up with, we could broaden the bit the thought, but also could could bring in the more scientific basis. And let's say, of course, we could also use my scientific collaborates from the past, because I'm not working on water homeostasis anymore, to see, hear their opinion, and to, let's say, maybe improve the manuscripts. So that's something we were about. Would like to send out to see whether the scientific community there, I also asked some of my colleagues, my ex colleagues, about whether they would be interested to step on this, because I'm not into academia anymore, but into my own company. 

Peter Deen  
Some one of them was quite was really interested in it, but he said, Well, I would like to know whether these patients really have hyponatremia, so it means a low sodium concentration in blood. So together with Patrick, we connected the UK organization to write out a survey to ask for patients who have may possibly measure this, because that is then very handy, let's say useful, for this academic group to bring it into their own scientific field. 

Peter Deen  
If they focus on hyponatremia, they would like to have the connection in order to do something with it. And then we can, of course, let's stimulate scientific research using our knowledge, but also more combining with their knowledge, in order to get deeper on what is now really the cause of this excessive water drinking in long covid 19 patients.

Jackie Baxter  
I think what I'm starting to realize about you research is that it takes a long time, and each research study is not going to solve everything. You know, one research study is a step on the ladder to the next one, to the next one, to the next one. But in order to get the sort of Holy Grail, you have to start somewhere. 

Jackie Baxter  
And you know this, this survey that you are working on with long covid support, I will make sure that goes in the show notes when this episode goes out, because I guess that's the first step, isn't it? You know that there are people who also have this symptom, but you need some actual like data to show that, I suppose, before you can go on to the next stage. 

Jackie Baxter  
What I think might be useful to just talk about a little bit; we've kind of danced around water and salt and low blood volume and low salt. Can we just talk a little bit about the kind of, I suppose, biomechanics of why does the salt help? The salt makes the body absorb the water. But it's a little bit more complicated than that, isn't it? So what happens there?

Peter Deen  
Well, let's say that's, that's. The point is, I say when, because water is uncharged, you could say it's, it is bipolar, but that is one charge. It is affected in our body, attracted by any molecule. And our body uses sodium chloride mainly as the molecules to attract water. So it's this is called osmosis, and osmosis that means water moved from the one side to the other side. 

Peter Deen  
But the movement of water from the ones to the other side is the is the attraction by other molecules. And sodium chloride, as pedagogy mentioned, is about 135 to 140 millimolar concentration about this. That's the highest of those ones, and that's used by our body mainly to attract water. So also, when you it also the kidney. You know, when our body, our kidney, filters our blood volume, 180 liters a day, what it filters. 

Peter Deen  
So the whole blood flow goes through it about 30 times per day, with a with a healthy person, and that means that that's a lot, because we only pee about one and a half liter, right? Normally the healthy persons. So that means that the kidney more or less reabsorbs nearly 180 liters of water per day, and it does that by taking up salt from the urine in an active way. So it brings it to the inside, you could say. 

Peter Deen  
And because salt is then on the inside, it is an attractive force for water to come along. So salt is the way, sodium chloride maybe, is the way to be able to maintain our water in our body.

Jackie Baxter  
So it's the salt that traps the water to stay in the body. And if we don't have the salt, then there's no sort of magnetic pull of the water into the body, so it goes straight through effectively,

Peter Deen  
exactly. So this is we talked about the RAAS system. So the angiotensin and aldosterone, those are the two last hormones. Those are very active in the kidney to stimulate sodium reabsorption. And when that is not occurring, then the inside is not salty, and thus water will not get there because it's not attracted by the salt on the inside.

Patrick Ussher  
And that's the point that Peter made to me, is that in a healthy person, if their Renin and angiotensin aldosterone system is working, okay, if that person's just drinking normal water, they can maintain their blood volume because the RAAS system is instructing the kidneys to hold on to salt that's already in the body. So it kind of works regardless. 

Patrick Ussher  
The problem in MECFS and long covid And POTS is that the RAAS is not working. It's suppressed, and so you are losing this salt, and just drinking plain water can lead into a vicious cycle.

Jackie Baxter  
Yeah. And I suppose the analogy that a sort of healthy person might be able to understand would be the post exercise situation, so where you push yourself super hard, you're sweating loads, maybe it's really hot, maybe you're not taking in enough water, and you feel the salt on your skin, don't you afterwards? And that's why athletes take in electrolytes afterwards, I guess, to replace that. So in that situation, the stressor is the exercise rather than the illness. 

Jackie Baxter  
But I suppose that's maybe something that that people without long covid or MECFS might be able to relate to a little bit, because you find there that, you know you can drink tons and tons and tons and tons of water, but, yeah, it goes straight through. And actually, you still have a splitting headache because you've not drunk enough water while you were exercising, for example. 

Jackie Baxter  
Because, I guess you know, for someone who hasn't experienced it, it's very difficult to kind of really understand. I mean, your opening gambit, Patrick, was it sounds a bit benign, but it's not, and I think that's kind of quite an important point. Just being thirsty isn't just being thirsty. Or it certainly can expand into something that isn't just - for anyone listening, I'm making those air quotes around just because there is no just here,

Peter Deen  
no, in fact, it's a low blood volume and not being able to, I say, when you think about pots, people stand up and have a reduced blood volume, or at least a blood gets pumped up, being able to be pumped up by your heart, to your brains. Then, of course, the brain gets a sort of lack of oxygen, or otherwise, at least blood. 

Peter Deen  
And that by itself, of course, is what the blood the brain cells do need oxygen more or less all the time, because neurons are the most energy consuming cells that we do have. So when they run only also short periods of time out of blood volume and there's also oxygen, they get stressed by that and that that can cause inflammation. 

Peter Deen  
So the inflammation is, for example, also, let's say, identified in mecfs patients and in long covid patients, is to some extent related. Let's say you have a higher chance of getting these things when you have a low blood volume or pots, because pots, more or less than, say, a way in which, was the low blood shows up in some way. 

Jackie Baxter  
Yeah, so I suppose, leading on from that, you know, the question is, okay, well, we start to have this understanding. Now, you know, we've got the hypothesis. We have a bit of an idea of what's going on. What do we do next? So how do we boost the blood volume? How do we get the RAAS system to be working, and where do we go from here?

Patrick Ussher  
in terms of the first question anyway, I'll say what I've done that I've found has turned things around for me. So we talked about drinking electrolytes. We've talked about adding salt, but not all electrolytes are created equal. And the most helpful thing I found is drinking oral rehydration solutions. 

Patrick Ussher  
So in the UK, people will be familiar with something like dioralite. In America, petiolite, normalite, vitalite. There's different makes of them. If people don't know what that those are, they're little sachets of glucose, salt and potassium, and people will probably have taken them after diarrhea or vomiting in the past. 

Patrick Ussher  
Now, the amazing thing about these sachets is that there's something in the stomach called the sodium glucose co transporter, and so when you have a mixture of salt and glucose in the right proportions, the stomach is capable of pulling that salty solution very neatly into the bloodstream. 

Patrick Ussher  
So when you drink, let's say, half a liter of dioraite, all of that salty solution will be pulled from the stomach into the bloodstream, and that therefore has a really effective impact on boosting blood volume, more effective than if you were just putting lots of salt on your food. In fact, much more effective than that, because that's a bit messy. It's harder for the body to process that in the same way. 

Patrick Ussher  
So there was a study some some years ago by meadow, which looked at drinking a liter of oral rehydration solution over a half hour in POTS patients, and compared that to a group that got a saline infusion of a liter as well. And what it actually found was that the the oral rehydration solution group boosted their blood volume as effectively as the saline IV group. So it had a really powerful impact. 

Patrick Ussher  
And speaking from my own experience now these days, I drink one and a half liters of ORS every day. In the past, I used to drink more, but I drink one and a half. And what I find is, let's say I'm drinking a liter of oral rehydrated rehydration solution over a couple of hours. By the time I get towards the end of that liter, I am feeling very different. The blood is getting back into my skin. Is getting into my muscles. It's getting into my brain. My body feels lighter. 

Patrick Ussher  
There are times when I'm in a crash and I'm stapled to the couch. I can't move. I drink a liter of ORS, and, you know, it has sort of quasi biblical effect, you know, Patrick was touched, and then he got up and walked, you know, like you actually, basically, you can suddenly engage in life. I can sit up, I can walk around, I can do stuff, and only before I just couldn't move. So it has a really powerful effect on feeling better. 

Patrick Ussher  
And for me, it's been the most helpful supplement, the most helpful anything that I have found, but not just in producing the thirst and bringing that way down, but in improving functionality. So that's been the most helpful thing for me. 

Patrick Ussher  
Now I've come across people who say that it ORS doesn't work for them very well, and sometimes that's because they're still drinking a lot of normal water, which is then counteracting the effect of the electrolytes. So without giving medical advice, I've personally found that if the majority of your fluids come from ORS, it has a better effect. 

Jackie Baxter  
So it's doing more with less. 

Patrick Ussher  
Yes, yes, it is, yeah. 

Jackie Baxter  
So maybe if we hand over to Peter for the what comes next? You've got a med tech startup, is that correct? And you're making plans, starting to make stuff happen.

Peter Deen  
So I said, let's say I've always been interested to understand a mechanism underlying disease in general. Let's say to my opinion, and I can't share everything, because, unless I have a company, so unless I need to, let's say what I would like, what I'm going to try, what I'm what I'm had to is to develop a diagnosis which allows GPs to make a diagnosis just very fast, and that can be done in person, with just taking blood and sending it to a laboratory. 

Peter Deen  
But they say, I would like to develop a sensor as well, because I can see, I can develop a sensor based on the way in which we can make the diagnosis, which when it would be 24/7 kind of sensor, like the glucose don't know whether familiar with those ones, but those glucose sensor, which you can wear on your arms, which gives you 24/7 information on your glucose level. I see that I can do the same thing for parameter that I'm looking at. 

Peter Deen  
And I think that there is a positive the way in which that I'm going to develop a diagnosis which is based on some parameters with the diagnostic made fast, but the 24/7 sensor, I expect this sensor to be also possible to use, to use a patients, for example, to help them in recognizing when they get to PEM, for example. And that's a bit of a long term thing, because that takes a lot of time and also money. Let's say they have to be those are medical devices, so they have a lot of regulatory steps besides technical things. 

Peter Deen  
But let's say I see the need in this. I've always been quite busy with I would also like to, always like to help people, and I see I said, there's so much need in mecfs and long covid patients that I feel that this is a very important way to go. So let's say the startup was only there for two years. It's called Streasure4Health The website will likely become available this week, and I'm just, in fact, building for the company. 

Peter Deen  
In fact, I asked Patrick, Patrick is a fantastic guy, and let's say, at least as a good is a knowledgeable guy, and this stuff and is a is also good in the PR to be part of my team as well. But that's cool. So the collaboration goes even further than just writing a paper about the stuff, but that's effective. 

Peter Deen  
So I'm in a state that I would like to - I'm looking for investors to come along with me to develop it and help long covid CFS patients, more or less. And that would be as I'm 62, I just started up a company when I was 62, so it was completely new fields. I stepped out of the academia. But it's the goals that I have is so high that it gives me a lot of energy to to work on this stuff. 

Jackie Baxter  
Yeah, so this is going to be a device that is a bit like a continuous glucose monitor, that's going to be detecting, instead of glucose, some sort of inflammatory marker, and you're not releasing exactly what this is yet, but the idea is that it's going to be able to predict an upcoming post exertional malaise episode. So this is quite interesting, because it's that similar kind of technology, but used in a slightly different way that's more applicable to things like MECFS and long covid. Is that right?

Peter Deen  
Yeah, in some way, let's say, from my point of view, there is something which is very fundamental under many of the different features of long covid, or MECFS, among others, the lower RAAS system. And I said, I will say when I would like to develop a sensor. It means that that an investor needs to be interested in their interest when they can earn some money with it. So therefore I cannot share all the different things. 

Peter Deen  
But to my opinion, this is quite basic to many of the features of long covid 19 invest. So I think I can make quite a difference for the patients to to improve their quality of life. If I die with that knowledge, that is great. 

Patrick Ussher  
From a patient perspective, I think it could be game changing, because it would basically be monitoring something in the blood that if it's going too high, it's indicating that you're moving towards a crash. And so it would actually take the guesswork out of pacing, potentially, you know, it would just beep at you when you're doing too much, or when someone's stressing you out, or whatever it is. 

Patrick Ussher  
And in that way, you know, you'd get real time feedback, slow down, take it easy, and it could help people avoid crashes over a longer period, which is what is, of course, important if you have to have any chance of actually healing, 

Jackie Baxter  
Yeah and I suppose, like we were saying earlier, we're constantly told, Oh, listen to your body. Your body will tell you what to do. And you know, for the most part, actually, yes, it will, if we listen to it. That is part of the problem, that we're not very good at doing that. 

Jackie Baxter  
But actually, as you kind of alluded to earlier in a lot of people, this signal is not really working correctly. So you may not be getting that signal, so you can listen to your body all you like, but actually, if it's not giving you that signal, then you're going to struggle to respond to it, because it's not there or it's not working. 

Jackie Baxter  
So if you, I suppose, had something to alert you, you're able to go, Okay, let's get some hydration sachets on the go. Let's sit down. Let's take a chill. Whatever it is that works for you in that situation. And you know, it's that kind of signal from the body you're sort of, you know, finding a way to make that work before, you know? 

Jackie Baxter  
I mean, we all know when we've hit the crash, but by the time you've got to that point, it's like, well, I can't really do anything about it. Now, you know, it would have been really nice if I'd had that signal, you know, 10 minutes ago before I hit the pit of doom, kind of things,

Peter Deen  
Of course, pacing myself, of course, is quite difficult to do anyway, because you're confident to balance on what is possible, is not what you can do on the one day is not necessarily what you can do on the other day. And I think it will cover variations between days or even other day as well. 

Patrick Ussher  
And sometimes you want to get away with something if you can, you know, because you might have that mentality like I do, and if something's beeping at me and saying, You're not going to get away with this, actually, I'd be far more likely to take that seriously if I knew that a crash was going to be my reward.

Jackie Baxter  
Yeah, but I suppose, conversely to that, if you were like wondering whether or not to do the thing, and your monitor was saying, actually you're all right, then you know, it would actually allow you to do the thing without the constant worry about whether you're going to overdo it. So I suppose it will allow you a little bit more control in some ways. 

Jackie Baxter  
And I think control is something that with something like long covid And MECFS, we feel like we have very little of so I suppose having something that we do have a little bit, as you know, that's quite empowering, I think. 

Jackie Baxter  
Guys, thank you so much for joining me today. This has been an absolute delight, and I'm so excited to hear where this goes. So I will drop all of those links that we've mentioned, including the survey and all of the research, the book, the blog. So if anyone wants to follow up with that, then please do and maybe we can talk when some of this stuff is a bit further down the road and see what's kind of shaken out, I suppose.

Peter Deen  
Thank you very much, Jackie for this nice interview. 

Patrick Ussher  
Yes thank you, Jackie. It's been a real, real pleasure, and to be great to come back if we can make some progress with these things.

Transcribed by https://otter.ai