Jill Brook: [00:00:00] Hello, fellow POTS patients, and marvelous people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are interviewing Patrick Usher, author of the book, understanding Me, CFS, and Strategies for Healing. Little note, he's gonna be giving away three copies and he'll talk about that at the end of the episode, but stay tuned.

He's going to get us up to date about some of the latest thinking on what causes ME/CFS, a unifying theory of ME/CFS, what are some promising treatments. He'll discuss his journey with getting POTS and ME/CFS and the many treatments that he has tried, some of which are experimental. So I have to remind you that this is not medical advice and you should talk to your doctor about what's right for you.

I hope he will also talk about how after getting misdiagnosed with a psychogenic disorder, he wrote an entire book about the common error his doctors had made so that future POTS and ME/CFS [00:01:00] patients should they be in a similar situation, which interestingly can involve getting accused of drinking out of the toilet, no less can hand their doctors a book explaining why their extreme thirst may not be a psychiatric disorder after all. Patrick, in addition to being an author and patient, also has a YouTube channel where he shares research findings and more to help educate about ME/CFS, and he's a very multi-talented guy and is also a composer and has written books about philosophy as well. Patrick, thank you for being here today.

Patrick Ussher: Jill, it's a real pleasure to talk with you.

Jill Brook: So can you tell us more about your background and your journey to becoming an ME/CFS you know, author, educator, advocate.

Patrick Ussher: Yeah, certainly. So, before I became ill, or I should really say that I'm 36 years old now, and for much of my adult life I have actually been unwell. But because I've had two of these kinds of illnesses, I [00:02:00] first of all had POTS back in 2014, 2015. Then I recovered for three years. And then in 2018 I went on to develop ME/CFS, which I still have. But to give listeners an idea of where I come from before that, I was a PhD student in England at the University of Exeter, where I was studying stoic philosophy, which is an ancient Greek and Roman philosophy as a way of life, which has been coming more popular again these days. But I was of course working far too hard, as my perfectionist nature sort of, sort of drove me to do. And then apart from the philosophy background, I also, as you mentioned am a composer of classical contemporary music. And that's something that I did both during the years when I was kind of had a, a break from being ill, and also in the first few years of my second illness I worked quite a lot on music composition. So my background has [00:03:00] been quite creative, also academic. And those skills I, I brought into you know, the academic skills I brought into trying to actually understand the illnesses that I ended up with because as listeners will, you know, relate to we're very often left on our own.

And so I really had to, to get to grips with, with what was happening to me on both occasions of being ill.

Jill Brook: Yeah. Yeah. And I know we're gonna talk mostly about your Understanding ME/CFS book, but you wrote another book and it was about your misdiagnosis with polydipsia. Can you share that story? Because I think it applies to a lot of POTS patients and ME/CFS patients, and when I heard it, I realized that could have easily happened to me if my doctors had misread my similar behavior to yours.

Patrick Ussher: Yeah, certainly Jill. This is a very important topic. It's something I'm very passionate about. So, just around five years ago I was you know, when I, when I developed ME/CFS, I [00:04:00] went into a period of complete hell. I was suffering with symptoms that often seemed, and I later learned, were life threatening and they revolved around extreme thirst.

And this was a thirst unlike anything that you, you could easily imagine. My whole body was screaming with thirst. Every muscle was aching with thirst, and no matter how much I drank, I could not quench it. And just to put it into context for people, and I know that I was at the most extreme end of this, I've come across a few other patients who were as bad as me.

Most people don't have it this bad, but I could drink between 10 to 20 liters in a 24 hour period. So this was total hell. I had about 12 nights in the six months period where I didn't sleep at all because the thirst stopped me from sleeping. And I basically thought I wasn't gonna make it much longer. And in the end, I decided I needed to go to hospital [00:05:00] because I hadn't been able to work this out myself. I was at a loss, and so I packed my bags. I was in Dublin at that point, and I went to the accident and emergency of my nearest hospital. Now to cut a long story short, I was there for one week. It was very intensive time. I was treated pretty much as an intensive care patient, even though I was in a standard ward. They just didn't have enough beds in the, in the ICU. And I tried to explain to them that ME/CFS patients could be thirsty. Of course, as, as you and I know, and people listening to this know POTS patients can be thirsty as well. And I tried to point them towards some research and everything, but basically they diagnosed me as having psychogenic polydipsia, or psychogenic water drinking. And this is, believe it or not, an established medical condition that all doctors are taught about in medical school. The idea [00:06:00] being that people are drinking a huge amount of water simply because they're mentally ill and, and they, and they have this compulsion to, to drink water and not because they are actually biologically thirsty. And so this is what I was diagnosed with. I remember hearing a doctor and nurse talking about me and laughing about the diagnosis. Nothing I said about ME/CFS mattered. It was a very lonely time. It could have gone either way looking back. And I should say I went in with life-threatening hyponatremia as well, low blood sodium levels. So anyway they, those were corrected in the hospital and I was very grateful for that part of it. When I got out, the problem I had was the next time I crashed, the thirst came raging back, and I was still left with how to resolve this problem. So I, I'd ordered a book on low blood sodium levels by Tim Noakes called Waterlogged. And [00:07:00] in that book he had a diagram which talked about thirst physiology, and it said that the brain has two thirst centers, which was the first time I'd ever heard of that. One of them is for water and one of them is for blood volume. And I immediately had this kind of you know, moment, or this aha moment that, you know, ME/CFS patients often don't have enough blood. I feel like I don't have enough blood. I mean, literally I felt like the blood was not getting into my skin, not getting into my brain. I thought, is that the reason? And I've just been drinking this water, but, you know, you can't hold onto the water. It just goes straight through you. So I went out to the pharmacy and I bought a packet of oral rehydration solutions because I had remembered a wonderful study by Medow, actually into POTS patients looking at the effects of drinking one liter of oral rehydration [00:08:00] solution. And for listeners who aren't so familiar with that, it's these are these little sachets of glucose, potassium and salt which are, you know, won't get into the, into the weeds, but they're highly effective at boosting blood volume and much more so than just adding salt to your meals or just adding electrolytes in, in a normal weight to water. So highly, highly effective, as effective as a saline IV, in fact. So I went out, bought the ORS, drank 600 milliliters, and the thirst went away. And my, the light switched back on and I felt much better. And in that moment I realized actually this problem had been caused by my illness. And that contrary to what could have happened had I died, where, you know, I would've had a mental illness listed as my cause of death, and all my friends and family would've been told that, it was actually caused by my condition. And so I was very happy to be out of the woods there. But about a year later I had this voice nagging away at me saying, where does [00:09:00] psychogenic polydipsia come from? You know, why do people think that it's likely that people would drink water until they die because they're mentally ill? How does this make sense? And so I started to read the papers into the condition. There's not many of them. There's only a few hundred papers in decades, you know, since since 1930s there's only a few hundred papers. And what I found was, again, to cut a long story short, that it hasn't changed hardly at all since the late 1950s. So the main conception of the, or conceptualization of the condition started in the 1930s and forties, and it's pretty much stayed in its core understanding as it was then. And back then they had all kinds of ideas to explain it, being a hysterical woman was considered to be a possible reason, being gay was considered to be an a possible reason. All kinds of Freudian ideas were part of it, being emotionally disturbed. And these people were operating at a [00:10:00] time when the fact that the brain has two thirst centers was not known. They only knew about one. And so they made this classic mistake, which is, you know, we can't think of what it is, therefore they must be crazy. And it's essentially become ossified like that. And there's been very little research since, and no one's ever questioned it. And another really fascinating thing was when I read the case studies from the 1950s papers, they actually were patients who were, were describing ME/CFS symptoms, even though the authors of those papers didn't, didn't take them seriously. The, the authors would say, oh, these patients have hysterical weakness of the legs. So I, I developed this theory, hypothesis that psychogenic polydipsia has always been a misdiagnosis of the thirst experienced by ME/CFS and POTS patients. And in fact, you know, there are, there are [00:11:00] even some academics now who work in this area who say that it could well all be wrong.

They just haven't thought what, what the other solution might be. So I wrote this book. It's available for free as a PDF. People can get it from themythofprimarypolydipsia.com. It's also available as a paperback on Amazon. But I, I, I wrote this hypothesis which exposed the Freudian history and laid out a different theory. And since I published that book I have been written to by maybe a dozen patients with ME/CFS or POTS who have told me that the same misdiagnosis has happened to them. And I've also been working with a Dutch professor who specializes in thirst metabolism. Professor Peter Deen who has also published on psychogenic polydipsia previously. And he agrees with me. He believes that this is a mistake. And we have been working together on hypotheses papers. They're written in draft [00:12:00] form now we just need to, to actually submit them to journals. And I hope to find other academics who might want to come on board, 'cause I think it's gonna take a concerted effort to turn this around. But I am determined somehow, you know, in my life to actually make sure that this changes, because at the moment, not only are people not getting helped, I know that this symptom was total hell. It's hell for other people 'cause you can't get out of it. And some people do die and, and mental illness is listed as the cause.

So this has to change. And I'm hopeful that I can play my part in the coming years in driving for that change.

Jill Brook: Wow, that is just so enormous, and I can't believe it's falling to you to do this, but wow, I mean, the power of the patient who has been wronged. I mean, wow. Wow. And you know, I would just throw in there that we know that one of the, you know, maybe not common, but not terribly uncommon comorbid conditions of POTS [00:13:00] is Sjogren's syndrome, which would make people even more thirsty.

And my understanding is that extreme stress and cortisol can also make you thirsty. So there's just so many things that could be piling up and piling up for our patient community to be the ones that run afoul of this misconception.

Patrick Ussher: Yeah, you're absolutely right Jill. And I, I think low blood volume is the most likely, the, the key reason, but I do agree with you that I think there are others that come in on top of it. Sometimes not even Sjogren's, but there are other autoantibodies, antimuscarinic three autoantibodies, which can also cause the the saliva glands to dry up. So I think there's a range of things and, you know, I thought for this, I've, I contacted the hospital again afterwards, and they didn't, they weren't interested. They, they, they, even when I'd written the book, even when I'd had Peter Deen working alongside me, they, they simply you know, just weren't, weren't, weren't interested.

So it's, it's an extraordinary thing, this, you know, not listening to the patient. Even in the case [00:14:00] where I actually, if I truly were mentally ill, I would still be suffering with the compulsion to down 10 liters of water a day. I don't drink more than two liters of fluid now. But they weren't curious about that change.

Jill Brook: Wow. Wow. I mean, so that's amazing in itself. That could just be an episode in itself. But then you also went on to write a book called Understanding ME/CFS and Strategies for Healing. Why did you feel like you needed to write this book?

Patrick Ussher: Sure. So, this book, which I published six months ago, is really the, the culmination of being seven years ill. And the, the truth is, Jill, that in the first three years of being sick, I, I was pretty clueless about what I was really facing. I mean, I knew a lot of kind of, you know, maybe more alternative understandings of ME/CFS or people who just talk about nervous system issues and so on, and, and I know we'll be talking a bit about that. But I, I was in the dark and [00:15:00] around three years in, I came across some really exciting research that just made me feel that the condition was illuminated and I could actually understand it. And that was out of Germany by two professors, Professor Carmen Scheibenbogen, who works at the Charité University in Berlin and the ME/CFS clinic there, and Professor Klaus Wirth, who has a very interesting backstory because he didn't actually know about ME/CFS at all before 2018. But then he came across a report about someone who had the illness and he suddenly became fascinated by it, and he really wanted to understand it because some parts of his background working in cardiovascular issues kind of tied in with ME/CFS.

So he pivoted full-time to, to try and work it out. And he has a history in drug development working for three decades at Sanofi. So they did something amazing in their research that I found really exciting because I don't know about you, but [00:16:00] there's a lot of really interesting ME/CFS research, but when you look at it all, it kind of comes across as a bit random. It's like there's a problem, you know, over in this part of the body and that part of the body, and that's all essential 'cause otherwise we can't move forward, but you're left thinking if ME/CFS is to make sense as a disease, it actually cannot be a lot of random things. We have to be able to describe its core functions in, in a consistent way where the path of mechanisms, you know, they may vary in severity, but they actually need to be replicatable from patient to patient. And it needs, needs to be like any other illness, rheumatoid arthritis or MS, where you have distinct physiological patterns. And what I found so intriguing about their approach, their first paper was called something like A Unifying Hypothesis on the Pathophysiology of ME/CFS. And so what they were [00:17:00] actually doing was taking most of the preexisting findings and asking the question, how do these all interrelate? How can we derandomize these problems and actually show how they drive each other? And what they did is they mapped out an illness of many interlinking vicious cycles showing that in fact you can make sense of all the previous research and map out a unifying model. And that for me was so exciting because it just opened the doors to no longer feeling like I didn't really understand what my body was going through. And so that was a, a turning point for me because knowledge is power. So one aim I had with my book was I want to help other people, other patients, to understand this research and also to feel like they don't have to be so much in the dark about having ME/CFS. The second [00:18:00] motivation is more practical which is simply to talk about treatments, both that I have tried myself to try and improve quality of life. I know we'll be touching on the various treatments that I have have attempted. And also talking about treatments that I haven't tried, but which there is promising research for. And just to kind of, you know, map out for people options that they might be able to try in order to improve their quality of life. So the book is about understanding and it's also about trying to be a kind of conduit for healing. And I should also say it's trying to speak of a, of a, you know, with hope of a better future. Because I believe that when we have a foundational concrete understanding, then you know, there's better chances for therapies that could really work because at the moment we have a lot of medications which, you know, can help people to a degree like LDN or low dose Abilify. [00:19:00] But these were not designed for ME/CFS. They were designed for other problems and then repurposed. What we have never had is a therapy designed specifically for ME/CFS, and that is when you're likely to see a huge breakthrough because it's actually targeting the core mechanisms of what people are going through. And one aim of my book is also to raise awareness of a medication, a potential medication that is being developed based on the Wirth and Scheibenbogen model. It's being developed by Professor Klaus Wirth, it's called Mitodicure. He's still seeking funding for phase one trials and so on, but you know, he has made progress. And the, the, the aim of this medication would be to target the very cellular mechanisms which likely drive post exertional malaise and which likely cause damage to mitochondria. The idea being that when you take the pill, it'll be much harder to [00:20:00] crash and the mitochondria would have a rest and, and be able to regenerate and heal. And maybe after a year you'd come off the pill and hopefully the mitochondrial damage and depletion would've been healed and it would no longer be possible to crash, and the core mechanisms of ME/CFS would actually have been healed.

Jill Brook: Yeah. And that's amazing because I mean, like the name suggests he's talking about an actual cure, not a lifelong therapy. And I believe that he also wrote an introduction to your book, right? And so I guess I almost hate to ask you to, to try to explain a basic version of the hypothesis because I know you probably need like a PowerPoint presentation or a whiteboard, and I know that this stuff can get so incredibly complex.

So I'm going to, I know, give you a big challenge. But like, is there any way to sort of give a simplified explanation of what that hypothesis sort of [00:21:00] entails?

Patrick Ussher: Sure. I'll, I'll, I'll try Jill. You have indeed set me a real challenge there. But to describe, you know, how ME/CFS is in their model. It's, you know, as I say, interlinking vicious cycles across several major different components. You have the autonomic dysfunction. You have vascular issues leading to profusion disturbances, that is to say blood profusion issues, typically hypoperfusion or reduced profusion. You have low blood volume, which is also contributing to the hypoperfusion. Micro clots, likewise. They also focus on the autoimmune component, which is very common in ME/CFS, not for everyone, but it's very common, which further tends to reduce vascular perfusion. And then they go right down and dive into the cellular health, what's going on intracellularly, particularly in the [00:22:00] cells of the muscles. And they, and they talk about the disturbances there. So what they, what they do is they, they show how this reduced blood profusion throughout the body, particularly going into the muscles, the autoimmunity throughout the body, those two factors in and of themselves will, will create a, a worsening cellular situation where the muscle cells are struggling and getting more and more dysfunctional. And when the muscle cells just become dysfunctional, they actually feed back into earlier issues as well by causing reactive oxygen species and which further limit blood profusion. So there's a kind of interlinking vicious cycle. And you know, when it comes to the autonomic dysfunction, they talk about how this is both happening in and of itself because of the nature of the illness, but also how everything else that develops subsequently feeds back into and freaks out the nervous system further. So you get the low blood volume, which freaks out the brain because [00:23:00] the brain needs blood to work. The autoantibodies are often attaching themselves to receptors in the nervous system and causing them, the nervous system to go haywire. The micro clots and the vascular issues are also making the brain work less well. And so you get this situation where just like many secondary dysfunctions that are all feeding into and kind of, sustaining each other, and at a certain point you look at the whole shebang of it and you can actually say, well, what's primary and what's secondary anymore? Because they're all so interconnected and all of these anchors that are weighing down the body are so important. And at a cellular level, they've actually done some really important research, not just in terms of theory, but actual research based on the hypothesis that they, they tested and they, and they, they proved pretty much, which is that within the muscle cells there is first of all a buildup of sodium concentration. Now [00:24:00] immediately I want listeners to understand that I'm not talking about sodium in the bloodstream because there the opposite problem is happening. There is an excessive filtering out of sodium from the kidneys because the, the hormones that control salt retention are not functioning properly. Same in POTS, of course. But within the, in the muscles it's the opposite problem. The sodium builds up and this causes weak muscles, easy fatigable muscles and correlates directly with weakened or reduced hand grip strength, which is a very common finding in ME/CFS. So they established that and they show how earlier things in the illness, like the blood profusion and auto antibodies and vascular dysfunction actually force the cellular receptors to become dysfunctional and lead to the buildup of intracellular sodium. So it's all connected. But here's the thing, when you get the high intracellular sodium, you then have a certain tipping point that can arise if the [00:25:00] sodium concentration goes too high, where the muscle cell actually starts to no longer be able to clear calcium from the cell, it imports calcium, and this leads to a state of intense dysfunction where the muscle cells basically kind of shut down. They experience calcium toxicity. They can actually die because of calcium toxicity. This is how bad it can be. That, that, you know, the study out of the Netherlands by Wust and Appelman found that that the muscle cells of ME/CFS patients during post exertional malaise can actually die. And this is very striking because it's not like it's a huge amount of effort that that may, you know, cause the PEM, but actually it can cause the death of muscle fibers. And for Wirth and Sheibenbogen this is a result of the calcium toxicity. The calcium toxicity is also what damages the mitochondria within the muscle cells.

There are a thousand mitochondria in each muscle cell. They get damaged and depleted every time you experience PEM. And that's why Mitodicure [00:26:00] would be so exciting because it would actually work on the cellular issues. It would, it would stop the sodium increase, thereby preventing the calcium overload and removing the main damaging mechanism of PEM and allow the mitochondria to heal and replete themselves. And as you said, this is a, a curative attempt on, on the part of, of Professor Wirth. So, that's it in a kind of bird's eye view. It, it is quite complicated, but you know, it is, all of these things are all interrelated and so if you potentially work on any part of the path of mechanisms, you can influence the others.

Jill Brook: Wow, that was amazing. That was impressive. Thank you for explaining that so well, because it is amazing how many different pieces there are to it, but it kind of makes sense that when something gets you messed up at a cellular level, there are gonna be a lot of downstream effects. And so it is hard to figure out what's at the base of the problem and what is a second, third, fourth, fifth order [00:27:00] effect.

And, and there's just so much dysfunction, but it's really exciting that they, you know, believe that there's a cure possible. Do you wanna talk about what they're doing and what they need? I don't know, maybe there's somebody out there listening who has a few million dollars and an interest in this. Who knows? Might as well put it out there.

Patrick Ussher: Absolutely, we put it out to the universe, Jill, and see what happens. So, professor Wirth is, you know, the, the company Mitodicure has been established now for a few years. You know, he has had funding and still has funding for 2025 where they have been working on toxicology and early stage studies. The next step is phase one. And, you know, he's seeking funding for that and he's looking either for private or public avenues. And you know, I know he is actively working on that. And, you know, perhaps there may be, you know, even good news this year, we, we, we keep our fingers crossed. But he, you know, I, I know that in a public, in a public lecture, he said that in order to [00:28:00] get the drug to the end of phase two around 20 million Euro or $21 million is what is required. And I believe at the end of phase two, then it would be a question of selling it on to a bigger company for phase three or perhaps, you know, Mitodicure would continue with it. But, but that would be what's necessary to actually test this and see if, you know, it does as, as hypothesized. And I think that, you know, this is a great opportunity. To my knowledge, there is no other research group actually trying to have a specific ME/CFS pill. I believe that these are, this is the group that's trying to do that. And so I sincerely hope that you know that, that an answer is found for the funding and that we back this to succeed. And, you know, the way I look at it is I'm not on Team Mitodicure, I'm on team we need scientific trials for Mitodicure because I, I think the stakes are too high for that actually not to happen.[00:29:00]

And we need to back our strongest cards and then let's just see what the scientific process actually reveals.

Jill Brook: Yeah. Absolutely. And then to be clear, it's not like you are benefiting from this. You're not affiliated, you're not paid by them. This is just, you're just a person who's researched this and sees this, like you said, as the one, the one team that's trying to actually come up with a cure.

Patrick Ussher: Exactly, exactly. You know, this is just my line of advocacy work as I've been very drawn to the Wirth and Sheibenbogen model. I really hope that Wirth's work gets the chance to be tested out. And that, that's my motivation in trying to, to raise awareness of, of this strand of the ME/CFS research.

Jill Brook: So as you wait to get to maybe someday try Mitodicure, it seems like you have pretty relentlessly researched and tried other treatments maybe even some experimental treatments. And I think that's largely informed by what's in your book and what you're looking at as far as [00:30:00] other mechanisms that you have seen are going on.

So I guess I was wondering like what is your process for selecting treatments to try and what are some things that you've tried?

Patrick Ussher: So that's a very interesting question, Jill. I suppose the process has developed organically over the years. I mean, initially I didn't want to try anything at all because I just wanted my body to work it out itself and get better. And that, that that landed me in a hospital bed almost dying. But you know, in principle you do want your body to work it out itself because if you, if it can get out of it, you really have got out of it.

It's kind of, it's robust. And I think it's very important. We never lose sight of our bodies healing compass. It is actually set towards trying to get us better. But we need to work with that. And I suppose I've gone through different phases. Some phases I want to focus more on body healing itself alongside typically complimentary treatments, whether they [00:31:00] might be supplements to try and improve my baseline or, or you know, things like osteopathy or diet, 'cause I've done the carnivore diet, not at, not at the moment, but that's something that, you know, really helped me and kind of improved my stamina and, and, and reduces PEM episodes when I'm actually doing that. And in terms of supplements, you know, I've, I've tried quite a few, but the most helpful thing I've tried, which I think is worth mentioning for, for listeners, especially for POTS listeners, has been to stop drinking water for the most part. And instead, 80% of my fluids come in the form of the oral rehydration solutions that I talked about earlier, which initially, you know, solved or resolved most of the thirst that I experienced, a few, you know, five years ago, but, which have benefits far beyond that. It's the most helpful supplement I've tried. It helps me to, you know, just have better stamina and, and, and calms down my nervous system. It, it repletes my blood volume every day. So that's been a super, super helpful supplement for [00:32:00] me. And yeah, so I kind of go through these phases where I'll do, try trying to help out my body in, in sort of gentler ways, and then I come to these moments where I sort of feel. You know, I, I've not made the progress I, I need to make. I feel like I need to actually, I'm, I'm prepared to be brave enough to take a risk and go and do a different kind of treatment that's more well use the word yourself, experimental. And really there's been two treatments that, that have been in that category. Maybe a third as well. I've started another one recently, which we can talk about which is ongoing. But my first big adventure was to Germany, just over two years ago. I went to a town called Bayreuth and, and a dialysis center where I had a treatment called HELP Apheresis. And I was actually listening to the podcast recently and, and the episode you did with Dr. Assad Khan, and I know that he talked about that as well. He, he did this [00:33:00] too. But for those who aren't aware, it is a blood washing procedure. So, all of your, there's a line in one arm and your blood goes out into a filter where it is washed, and the washed blood is returned into another arm. And in a typical session, you'd have three liters of plasma washed. And considering that we tend to be a bit hypovolemic, you know, that's probably like, that's your whole blood volume plus a bit more. So what it's doing is it's actually using large amounts of heparin, the blood thinning medication in the filter, about 20 times the standard oral dose, or is it 40 times, it's a lot more anyway than the standard oral dose. And it, because it's, it's this powerful blood thinning, it actually counteracts the micro clots that are in the blood. It takes them out and it also takes out the clotting factors that tend to create them in the first place. [00:34:00] Now, I had wondered if I had micro clots because I wasn't making any progress.

You know, in the spring of 2023 I was thinking, what am I gonna do? And when I got to Germany and I saw my blood, it was black. It was actually black from the line out into the filter. And the doctor and the nurse told me that all of their long COVID patients, they see darker blood. Now mine was particularly dark, but they see this in most of of those patients and it's because the micro clots condense the blood so much that they make it thicker and darker. And so my blood was black. And not only was it black, it actually was moving, it was so turgid that it moved really slowly. They had to add a lot of isotonic saline to the filter in order to get the blood moving through it. So, you know, that, that confirmed for me, I didn't do a micro clot test, but didn't need to because it, it [00:35:00] showed me that my blood was this sludge, this dark sludge basically. So I knew that it was, I needed to be there. And to be honest, I honestly doubt that my body could ever have resolved that itself. I just, I just would, I struggled to see how it would've done so. Anyway, I had seven treatments over two months, and over the course of that time, my blood went from black to a normal kind of burgundy red again, and it went from needing lots of isotonic saline during the treatment to needing none at all. So by the end, my blood was flowing easily and happily through the filter and the micro clots had been taken out. And, you know, it didn't help me like dramatically, dramatically, but it did help me a full 20%, which I was very grateful for. And I needed these micro clots gone. I used to get symptoms where I thought I was, the blood flow to my brain was so bad that I feared having a stroke, and [00:36:00] that has never happened again since the HELP apheresis. You know, that, that symptom has never returned. As well as I had pressure in my chest a lot, which is also gone. So, sometimes I have a little bit of low blood volume badly, but it was kind of there in a general way, and, and that's gone as well. So I think that treatment was medically essential for me. And I, I've also done hyperbaric oxygen since, but maybe I'll just pause there in case you have any, you have any questions on that, Jill?

Jill Brook: Well, I guess that's just amazing to me that your blood could be that bad at flowing and oxygenating you and such and that getting rid of it and fixing it would only fix you 20%. Like that apparently wasn't even your worst problem.

Patrick Ussher: Oh, tell me about it. Tell me about it. Honest to God, you have to have a dark sense of humor with all this. You really do. I think that, like when I was out there, they also, I asked for the testing to the auto antibodies that have been implicated in ME/CFS and [00:37:00] POTS, the same ones, and they came back positive.

And my feeling is that those are my main issue that explain why I'm still ill, but I haven't pursued the treatment for that one yet. That's my last ditch resort, I think, because I don't like blood washing. You know, it's not, it's not fun. It's very expensive and it terrifies the bejesus out of me.

So I think I'll, I'll, I'll, I'll wait for that one, you know, if, if not, if all else fails, but that is my feeling as to why I'm, I'm still sick, to be honest.

Jill Brook: And I guess this is a little bit news to me that ME/CFS has been associated with micro clotting. And is that a long COVID thing or is that established in all ME/CFS patients, or is that something they're just now incidentally finding in some ME/CFS patients. Do you know what the status of that is?

Patrick Ussher: Yeah, I sort, I followed it you know, in a general way, the research. And you're right that initially it's, it was focus of long COVID research. So the work of professor, Resia Pretorius looked into [00:38:00] this and, you know, was able to find micro clots 'cause they had actually developed a test for it. But her and her research group subsequently did the same tests in ME/CFS patients and found, lo and behold, that they also tended to suffer from micro clots. Now they may not, I think, if I recall correctly, subject you know, to, to being corrected, but I believe that in general more micro clots were observed in long COVID patients than in ME/CFS, but still significant, still impactful. Perhaps the nature of the long COVID virus or the COVID virus was such that there's more endothelial damage that's caused initially, which kind of sets off the micro clotting cascade. But it does seem to be a problem in both illnesses. And there are, in recent times, the micro clot test is starting to become available. So it's going out of the lab into the world. I don't know the exact details, but there is somewhere in America that now is doing the [00:39:00] micro clot test.

Jill Brook: The Long COVID Clinic at Jordan Vaughan's Clinic in Alabama, I believe.

Patrick Ussher: There you go. There you go. That's it. So people might be interested in trying that. There's also the same test is being done in Switzerland as well. Again, I'm not entirely sure of the name of the clinic. You may also get a hint from looking at your ESR rate, your erythrocyte sedimentation rate, which you know, not medical advice, but just it's a rule of thumb, and I did talk to one of the micro clots professors about this, and he said it's, it's, it's, it's largely can be helpful. If your ESR rate is very low, zero to zero to three it's highly likely that you have micro clotting issues because that is a sign that your blood is settling down in the test tube very slowly and therefore, therefore, that it is thick and viscous and you know, sluggish and basically likely full of the micro clots.

Jill Brook: Oh, that's a great tip. Okay, and why does the HELP apheresis process terrify you?

Patrick Ussher: [00:40:00] You know, it's just, you know, that's a good question. I'm, first of all, I'm quite an anxious person actually. Even though I tend to take things on and be very brave, I am actually quite anxious. There's just something about all of your blood going into a filter and into a machine that makes me feel very vulnerable. What if something goes wrong, you know, while my blood is out there? You know, and just feeling, yeah, that, that some something might go wrong. I don't like, like in general, I like alternative or complimentary treatments. I am scared of a lot of conventional treatments because they tend to be more invasive. But you know, I'll tell you, I'll tell you this now 'cause I maybe this might, might, might help some listeners and I know some people have written to me about this. I was so nervous going to Germany. It was my first big trip. I'd been mainly living with my dad for a long time, you know, if not that I'd lived in a, in a village nearby.

And even then I'd struggled. And the idea of going alone to Germany, where, you know, anything could go wrong, terrified me. [00:41:00] And I'd never felt more anxious in the lead up to that trip. And when I actually had the moment of the first treatment, I was so terrified when I saw the blood going out of my arm that I begged them to stop.

I just couldn't take it, and I wanted to leave. And the nurse came in and she put her hand on my shoulder and I was shaking. And the doctor came in and he was having to think fast, you know, how am I going to help this patient who's clearly about to kind of collapse? And he told me that there are these wealthy sheiks in the Middle East who do this treatment once a week just for rejuvenation benefits.

Jill Brook: Wow.

Patrick Ussher: And this was like, you know, I was like, you know, I, I thought these were my last moments on earth, you know?

Jill Brook: Yeah.

Patrick Ussher: But eventually they calmed me down and you know, I kept going and I'm glad I did. But I just want to say that, you know, there's that saying feel, feel the fear and do it anyway. But you know, sometimes feel the extreme fear and do it anyway, and you may surprise yourself with the bravery that that is within you. Because ever since that whole [00:42:00] experience of going to Germany, and I had some terrible times there, I had a couple of nights where I didn't sleep at all because I had terrible symptoms and you know, I was, I really hated being there sometimes. But I did, I did it and I got through it. And from that time forward, I have remembered when I'm faced with these big moments, and you know, I've had another big moment six months ago because I've come to Romania now where I did hyperbaric oxygen at the medical grade level. You know, that was also like a potentially terrifying treatment.

But I was not at all as afraid, maybe only 20% as much, because I had previously experienced jumping into the unknown and actually seeing that even though times would be hard, I could trust myself to manage and deal with it. And so to anyone listening who's scared about traveling for medical treatment, you can jump into the unknown and you may surprise yourself how your feet land and you will gain confidence from that for future such attempts.

Jill Brook: So let's talk next about your hyperbaric [00:43:00] oxygen therapy experience. And, and yeah, and it is, it is sort of, amazing that when you try these things, you also have to travel abroad to do it. That's a just a whole nother challenge added on. But tell us about that.

Patrick Ussher: Yeah, sure. So I'd actually listened to a podcast about medical grade hyperbaric oxygen at the Aviv clinics in Florida, which is one of the main, if not the main hyperbaric center in the US, back in November. And I thought it was all very interesting 'cause they were talking about a research paper in long COVID patients and there were genuinely positive results across the board pretty much.

And I was excited about that because, you know, I'd, I'd love to have a long-term benefit, even if it wasn't curative, but just a benefit at quality of life. However, the Aviv clinic costs around $50,000 for three months and that wasn't an option. And so I kind of put it out at the back of my mind until one day I thought, [00:44:00] let's look around in Europe and see what the options are. So I came across this clinic in Romania that looked very impressive, called Hyperbarium in Oradea, a town in the northwest of Romania. And basically it operates at a 10th of the cost, but it does pretty much the same protocol, just a higher atmosphere as absolute. So 2.4 rather than two. And I've actually always wanted to go to Romania.

I've, I've been interested in Romanian culture, films, music. I've learned a bit of the language. And so I thought, let's, let's, let's do this. Let, let's go to the country I've always wanted to visit and let's, let's try this therapy and I'm gonna do 60 sessions and I'm gonna bloody well go for it. And this is gonna turn things around for me. So I went in early March and I did, I, I went through all of those treatments, all 60 of them, two hours each time, pretty much five days a week. And very good clinic, very impressive, you know, very nice [00:45:00] medical assistants, very good doctors and everything. Unfortunately it did not work out for me as a therapy, and that's been a big disappointment. I actually, my baseline is worse now than before I did it. And I was really hopeful that, you know, sometimes people have a delayed reaction. That didn't happen for me. You know, it's now three months afterwards. I can do less steps in a day than before. Like I could do maybe 7,000 steps a day before, and now I'm kind of down four or five on my good days. That means my crashes are also worse and, you know, easier to happen. And it's been a big disappointment. I feel like perhaps it was because the level of pressure maybe was too high for me. As I said in the Aviv clinics, it's at two atmospheres, which is maybe less of a stress on the body because it does place a stress on the body as a treatment. So 2.4 is probably too high. Maybe I should have taken more breaks across the treatment. I kind of just, unless I was [00:46:00] in a crash, I just kept going. Or maybe it just wasn't, you know, meant to be. I don't know. But nevertheless, I did it. And unless we actually try, unless we are brave enough to try, we don't find the things that work.

So I don't regret doing it. I hope I can get back to my previous baseline. My sleep has improved. That has been a positive. But other than that, not much. You know, I had hoped that, that, they actually found that I had lung fibrosis you know, with the initial x-ray there which wasn't like huge. It was about kind of subtle, but, but diffuse. Basically they said you have the lungs of the smoker. So it wasn't like you know, horrendous, but it was there to some extent. And I had hoped the hyperbaric would at least help with that. But unfortunately, a follow-up X-ray showed very little improvement with, with that as well. But anyway, so unfortunately it it didn't work out for me, but I don't regret it for a moment. Because if you don't, if you don't dare [00:47:00] bravely, you don't, you don't find answers.

Jill Brook: Well, it's funny because I guess I, I put a different spin on that for myself, which is when I'm desperate. The more desperate I am, the bigger risks I'm willing to take. And I would love to be at a, you know, point where I feel good enough that I don't feel driven to try things, especially things that have some risk.

But I completely have been there at times and I completely understand. And the other thing going through my head is that I so feel for you and anybody, and I've been in this position too, where something didn't work and you don't know why. Right? And was it that I didn't do it right? Did I not do it enough?

Did I do it too much? You know, did I not use the right brand of supplements? You know, there's so many questions and there's just not always an answer. And so...

Patrick Ussher: Yeah, no, you're right Jill. It's not, there's not always an answer. You know, we are mere mortals trying to work these things out the best we can and we muddle along through and you know, I absolutely [00:48:00] relate to the, to the desperation driving treatments as well. I think that that was actually a factor in the HELP apheresis.

I think after five years of being sick, I was really a bit desperate.

So you you actually can surprise yourself with what you take on, 'cause I never would've wanted to do a blood washing procedure before, for example.

Jill Brook: Yeah. Yeah. I mean, I, I always, when I'm in that point, I always sing that, that little song to myself, freedom's just another word for nothing left to lose, right. Like, you get brave when you feel like there's less to lose.

Patrick Ussher: Yeah. Well, you, you get to the point where you actually are, you are accepting of the fact that, that it may lead you to feel worse. Because that actually is a risk that you're prepared to take because you know it's gone on too long and you you actually, like, I found a lot of my, even though I haven't, you know, have, I mean, I'm fortunate I've had this setback this year, but I have improved a lot in, in general. And you know, I was housebound and unable to be independent for long, for years. You, you reach, you reach a point where like [00:49:00] I've improved, but I'm, I'm, still mainly feeling like I'm looking at society from its edge, that I can't actually participate in the, in the real ways that I want to be able to participate.

And I'm very grateful for what I can do, but it's still cut off from life. And so that kind of makes me feel like, oh yeah, I, I, you know, I am prepared to actually take some risks, even though they're research informed risks, you know, in order to try and move forward.

Jill Brook: Yeah. Yeah. Okay. And you had mentioned a third treatment that you had tried recently. Is that anything you wanna tell us about?

Patrick Ussher: Yeah, sure. You know, I'm a glutton for punishment, so I just keep going, you know. So I have recently started a new treatment. It's too early to to say, you know, if it's gonna help me or not, and I'm still in the adapting phase to it. It's kind of the opposite of hyperbaric oxygen really. It's called intermittent high hypoxic hyperoxic therapy. And [00:50:00] it, again, involves breathing through a mask, but it's, you know, not as involved as hyperbaric.

You're not sitting in a chamber. It's not two hours, it's just 40 minutes. You're not doing it every day. You do it two or three times a week, so it's a lot less stressful an experience. But basically it is tricking your body into thinking that you're at high altitude. So you're actually breathing in lower concentrations of oxygen from the mask. And you go forward in a gradated way. You're not going in at the deep end. And the machine is very clever at kind of adapting itself to, to where you're at and, and what you need to aim for. But you like, just to give an example of where I'm at at the moment, my oxygen dose is now at 11%. So I've had six sessions and I'm at 11%. Oxygen concentration in the normal atmosphere is 21%, so I'm basically breathing oxygen as if I'm at 5,000 meters. And so [00:51:00] my, so my body has been forced to adapt to this. And the idea is that if it can successfully adapt, which people say takes around 10 sessions, you then will have better oxygenation capacity at baseline just like you do if you live at high altitude for, you know, a few weeks, because your body has to learn how to do more with less. And so there's a rationale that this could help, you know, change your stamina threshold, change your PEM threshold, and allow you to do more safely. And, you know, hopefully be something that can help you to, to improve. There have been a couple of studies into this for long COVID. Very encouraging, which showed people got significantly better at, you know, climbing stairs more quickly at, you know, being able to walk longer distances more easily. So there, there is some studies in long COVID, but not ME/CFS. And, you know, there's some, there's a doctor, a Russian doctor, Dr. Arkady [00:52:00] Popov who works on this with ME/CFS and long COVID patients, and, and Lyme, chronic Lyme patients. And purely anecdotal, but he has been reporting and his patients have been reporting real successes with this, including recoveries if people stick with it for six to eight months.

So it's kind of a, a long-term game. But I'm planning if this works out well for me when I, after I go home to buy a kind of clunky manual machine that I'll be able to continue doing this over the winter and, you know, yeah, hopefully, hopefully help me to move forward.

Jill Brook: Well, that's really interesting. I actually happen to live at altitude, not, not 5,000 meters, but pretty high altitude. And I have always felt great when I first go down to sea level, but then it wears off after a couple weeks and I've always said, boy, if I could somehow bottle that, if I could somehow always feel like it's my first day down at sea level.

And it sounds like this is the gadget that [00:53:00] could potentially get you adapted to feel like that.

Patrick Ussher: Exactly, exactly. Like, and you're not the only person. I've, I've talked to two or three people who've told me the same, that they feel better at altitude. But the thing is that a lot of people can't, you know, they can't just go and live at altitude.

So this is a kind of bridge for that, that could allow people to, to, to maintain the benefits, you know, at home and encourage people, maybe to check out if there's a clinic near them or, or to look into these kind of manual devices.

Jill Brook: Fascinating. Fascinating. And are there any other treatments out there that either, and they don't have to be experimental, but other things that have really helped you, that you feel like have been foundational for you? Or you mentioned that eating carnivore had made a big difference for you. Is there anything else you wanna talk about, that sort of has been a, I don't know, a, a superstar thing, even, even if it's been small.

Patrick Ussher: Yeah, sure. But aside from the carnivore, yeah, I think there have been the Buteyko method has [00:54:00] always been helpful for me. It, it, it, it is never been dramatic, but if I practice it, it improves my quality of life reliably. And this is an approach developed by a Russian doctor or Soviet, Ukrainian maybe I think he was, Professor Constantine Buteyko. And it is a method of breathing retraining, which actually is getting you to increase your carbon dioxide levels in the body. And that might sound kind of strange initially, but actually carbon dioxide paradoxically helps us to oxygenate our bodies better. The more CO2 you have in your body, the greater the aperture of your blood vessels, the more wide they are and the more blood will perfuse into, you know, your brain and muscles and everywhere. So it's, it's a form of, of, of breathing retraining, which is actually about breathing less. You want to reduce the volume of breathing. You want to get to the point ultimately where your're hardly breathing at all. You know, your oxygen [00:55:00] saturation will remain the same, but your CO2 will go up and your oxygenation will go up. And so when I practice this it can be a bit unpleasant initially, but your body gets used to it. And it actually becomes quite pleasant because you feel, your body feels warm and your circulation improves and you feel this sense of heat throughout your body, which is actually really nice. And, you know, people who are like hot-blooded literally probably have a lot of CO2 in their body. That's probably their secret. So it kind of works to, to, to improve circulation, improve oxygenation. And I found various groups useful. There's one called Learn Buteyko Online, which does five day free workshops over Zoom which is a, a helpful way into it. There's also various books and so on. I talk about it in my book as well. But yeah, that, that has been a reliably helpful thing for me to improve quality of life. And we know that CO2 [00:56:00] levels are reduced in ME/CFS probably in POTS as well. So it's kind of also working on, on one of the problems in the illness as well.

Jill Brook: Yeah, that's so helpful. And we've had a couple episodes about that in POTS. And one thing, this would be a conversation for another day, but I am fascinated by how many things overlap in POTS versus ME/CFS and you know, that being one of them. And it is just curious how, you know, I would love to know, are these just cousins?

Are they, are they the same thing, but some people get more of one symptom and some people get more of another symptom. I, it's, it's probably a whole big fascinating topic on its own.

Patrick Ussher: Yeah, I'd say it is Jill. I mean, I, I've often wondered about that as well. My own hunch is that probably they are very similar, if not the same, but it's just that maybe certain aspects of the pathophysiology are stronger and some people then in others and it kind of leans more into expressing itself as POTS or, [00:57:00] or is expressing itself as ME/CFS or of course as expressing itself as both.

Jill Brook: Yeah. Yeah. Well I feel like I could talk to you all day. You have so many fascinating things to discuss and you have so much information. So, let's tell people about your YouTube channel, because that's where they could listen to you all day if they wanted to.

Patrick Ussher: Yes, they can go and listen to me all day there if, if they like. It's it's called Understanding ME-CFS. So, people can, can go and, and type that in. I post regularly there, a topic similar to what we've been describing today, but I, I try and talk about the research in ways that are hopefully accessible for people. I talk about, you know, human aspects of living with ME/CFS as well. I talk about treatments I'm trying, research about treatments, interview patients. And also now I'm, I'm hoping to interview experts as well. I had a previous interview with Professor Klaus Wirth. So, so if people want to check out and learn more about [00:58:00] his work, they should, they should look for that interview. So it's something that I'm growing and, you know, I really enjoy the work. It gives, it gives my life a lot of meaning. It helps me to kind of fight back as it were. And yes, people can check that out. I'd say in general, if people want to learn more about me, to, to look at my personal website, which is patrickussher.com and there they'll have links to, to the books and also to, to the YouTube. And I also just want to mention to people that I have recently started a Patreon Discord community, which is a treatment and research support community. And the idea is to kind of have people really pooling their knowledge and their experience together in a very focused way to help each other move forward. So we have a private Discord forum, with lots of kind of different channels on different themes where people are. You know, it's early days. There's only just about 15, 20 people there at the moment, but they're really engaging with each other, helping each other, as I say, move [00:59:00] forward. They're able to submit questions for upcoming speakers and also to myself for Q and A videos. And we have once a month Zoom calls, which again, are a chance for focus discussions. So details around that will, you know, can be found on my website. And, and maybe Jill, we should talk about the, the book giveaway as as well.

Jill Brook: Absolutely.

Patrick Ussher: So for listeners of the POTScast, for my book Understanding ME/CFS and Strategies for Healing I'm giving away three paperback copies. So all you need to do for that, for that is there's a link down below in the show notes. To a website called Gum Road, where you will see you can download a sample from the book. And as part of that, you can input your email address. Now, that will sign you up to my newsletter. However, you can choose to opt out and that won't affect anything to do with the, the giveaway.

And then you know a few about two weeks after this podcast goes [01:00:00] live, I will use ChatGPT to randomly pick out three winners, and I will contact them via email to arrange delivery of the paperback copy.

Jill Brook: Perfect. And so we'll have all those links in the show notes. And for anybody who's Googling you without the show notes, you have two S's in your name, Patrick USS Ussher. And so make sure the people can find you that way. And do you have any final words for people?

Patrick Ussher: Yeah, I think what I would say is, you know, as I've, as I've been ill now for seven and a half years, I'm sure there are plenty of people listening to this who've been ill a long time and maybe longer, or much longer. I have found that it can be hard to, like sometimes I go through periods where I can, I can honestly be a bit despairing about the situation and I can feel that I'm not making the progress, and that my life hasn't changed in as, as much of the ways that I would want.

And, you know, I can get down about it. [01:01:00] And it's hard when you feel that way to actually kind of for all of your actions and strategies to be in the hope and healing camp because we're human and you know, we can feel like, you know, we tried many things and we haven't got to where we want to get to. But what I want to say that I found helpful at those times is to try, you know, if I'm gonna be despairing, that's fine, but try and have one foot in despair and one foot in hope. So what are the things that I can do that don't feel overwhelming, which I can still commit to, even though it may not be like doing everything, but that I can, that I can commit to, which can actually still help me over time to move forward. And, you know, for example, that could be meditating for 15 minutes once a day. It's not, you know, like a huge commitment, but it's something that you feel that you can do, even though it's not a perfect or ideal [01:02:00] situation. And I have found that, that over time doing those kinds of things and other things too, eventually after the weeks pass or months pass, more light does emerge again, and you can suddenly feel that you're actually moving more towards hope.

And you can take that both feet and put them back in the camp of hope, but it's because you kept doing something. And so I want to encourage people if they're feeling that, you know, that way, feeling down, what can you do? Even if it's just small that you feel you can commit to that over time will accumulate in ways that might actually surprise you and then allow you to move forward you know, in a more focused way at some point.

Jill Brook: Yeah. That's great advice. That's great advice. And we've so appreciated, you have so much information and we so appreciate you sharing what you've gone through personally. And I mean, gosh, just, [01:03:00] you know, to see somebody who has been through hell and decided to make it mean something for everybody else is really beautiful.

And so, so thank you for putting all of this out there. And I know that I've started watching your videos and I get a lot out of them. And to listeners, Patrick's a really good composer. You should listen to his music. He's like the real thing. Beautiful, beautiful music. And I have not looked at your philosophy books yet, but but it is interesting because I, I know that there's a lot of people suffering who swear by stoicism as a strategy for that too.

So maybe we'll have you come back and talk about that sometime.

Patrick Ussher: Yeah. Honestly, I'd love to come back, Jill. We could talk, yeah, about, maybe more, about less about the research and more about finding hope and meaning and how do we actually cope with having a chronic illness. And we could draw on my, you know, my homies, Epictetus and Marcus Aurelius and Seneca and, and the other Stoics, and see, what they have to say about living with [01:04:00] ME/CFS.

Jill Brook: Yeah. Yeah. Well, I mean, okay. Just one super quick question on that. Do you feel like having that to lean on and draw from has helped you be able to do as much as you've done while having such profound ME/CFS?

Patrick Ussher: Well, I would say that I go through periods of being stoic and periods where I'm not stoic. It does actually require a kind of commitment to a certain practice, even though the general attitude I think I've taken on, yes, I do think so because the stoics say that the most important thing in life, like people value all kinds of things, but the most important thing in life is actually that we value, first and foremost our character and the kind of person that we are. So not fame or money, or even health, actually, they, they say that's secondary. You know, if you're going to be ill, can you at least be ill, and they would say, have a strong character in how you're facing what you're facing. So that, that has been, you know, [01:05:00] helpful for me because I, I want to try and respond to this challenge, you know, in a way that I will look back on, you know, with some degree of pride. And that is, you know, in, in, in trying now to, to derive meaning from actually turning around the situation and, and sharing my journey now as a kind of health journalist to, to, to help other people, you know, also move forward. And part of that I think is, is the Stoic question, what is the most important thing in life? And I agree with them that I think it's the kind of person that you are.

Jill Brook: Well, that's amazing and you're amazing and we're so grateful for all of this. And so hey everybody, check out the show notes. Everything we talked about will be in there. And Patrick, thank you a million. And listeners, that's all for today. We'll be back soon with another episode. But until then, thank you for listening. Remember, you're not alone, and please join us again soon.