102 - Dan Neuffer - how can ANS Rewire help in Long Covid Recovery?

Episode 102 of the Long Covid Podcast is a chat with Dan Neuffer about his experiences with ME/CFS and how that led him to create the ANS Rewire program. We discuss Dan's hypothesis for post viral fatigue syndrome, and how this relates to Long Covid recovery.

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(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID podcast, I am delighted to welcome my guest today, Dan Neuffer, who is an MECFS and fibromyalgia recovery coach, as well as the founder of ANS Rewire, which has been mentioned by some of my previous guests. So today, we are going to dive a little bit deeper into what this is all about, and how it could help with long COVID recovery. So a very warm welcome to the podcast.

Dan Neuffer  
Thank you very much, Jackie. It's my pleasure to be here.

Jackie Baxter  
I'm so excited to dive into this. Would you mind just saying just about yourself and what you do before we dive into more?

Dan Neuffer  
okay, so my story, I'll  make it very succinct, is I was ill myself, for about six and a half, seven years with, well, I guess I didn't accept MECFS diagnosis. But when I eventually did, I suppose that was sort of my primary thing that I connected with. And everything else was just seemed an extension of that. So when I started to get the pain and fibromyalgia and then started to get PoTS, it was just like another symptom. I didn't think of it as another illness really. 

And similar story to most people - went around, tried everything that I could find, gave up, got more sick, in my case, until I got very, extremely ill where I suddenly thought that living with the illness as best as I could no longer seemed an option. And in a moment of desperation, I suppose, I had this harebrained idea that I would determine what causes the illness, because I didn't like doing treatments. I tried too many treatments. And it didn't make sense to me. 

My background was in science and physics, engineering. And I found the medical approach to be, both mainstream and alternative medicine, illogical. Someone says you have an imbalance? Let's fix it by doing this, or you have hormone deficiency, let's give him a hormone. And, you know, and it's like, Well, but, why? Like, why would you fix it? You know, it's like, if your car's broken, or there's not oil in the engine, you don't just go and it's not oil in the engine, I'll put oil in it. Like it's illogical. 

And, of course, no one seemed to have the answer of what causes the illness. It's everything's a mystery. And to be honest, it was just a bit of desperation. But my wife looked at me and said, Yes, I think you will. So anyway, when I got a little bit better, got out of bed again. I started to do a lot of research, started going to medical libraries and so on. 

To cut a long story short, I' formed a hypothesis for the pathogenesis of the illness. And I felt extremely confident that this was correct, because it explained how people get ill, explained all the symptoms. And it kind of suggested a pathway for recovery, which I started to undertake, with probably zero confidence. Not zero confidence. But like I was 100% confident that the explanation was right. But I just couldn't imagine myself really being well again, after so many years. I did make some progress. I had setbacks. Eventually, I got well, it took me about a year and a half. 

And then I decided to write a book. The primary purpose of the book was to share my hypothesis, as I put it, then. I didn't realize that other people had come up with similar ideas, going back to the 70s. It was like reinventing the wheel. Maybe some distinctions are a little bit different, but in essence. But then I published this book. And I started doing advocacy work where I started to share recovery interviews, because suddenly I found all these other people who had recovered in all manner of ways, and I wanted to break down this mess that recovery wasn't possible, because I guess that's part of the reason why I felt so hopeless. 

And and I didn't like the stories when people said, Ah, yeah, you have this and you did this treatment. And you know, because I've tried all this treatment, other people tried, it never worked for me. And you know, because they'd say Ah you have Candida. That's why you're so sick, you know, like, not CFS. So I'm like, okay, and none of these things ever worked, right. But I started to share stories with the view of really going to a lot of depth. And of course, every recovery story that I share, or that you come across, in essence, makes sense based on the explanation that I offer. And so that of course, I thought it's a confidence provoking thing, hopefully for people. 

So I did that advocacy work. I helped people in my spare time to coach them. I found it had, to be frank, limited effectiveness. There's a lot to understand and if you're talking to someone, even regularly for an hour, it doesn't necessarily translate into the actions and changes that are required. People kept asking me for my help, they kept asking me to do like something more in depth - an education program. 

And then a couple of years later, I was contacted by one of the top researchers in the world, who had been giving a presentation for fibromyalgia, on the pathogenesis of it, explaining how it works, and what's the underlying cause, how that mechanism works, and, and someone in the audience piped up and said, You sound like you're saying what Dan Neuffer says. And they were like, who's Dan Neuffer? Obviously, I'm not in a research base. I'm not a medical researcher. I'm a medical scientist, I'm not a doctor. 

And, and so then that sort of led to someone contacting me, and then I ended up creating this program. And that was then released in 2016. It's called The ANS Rewire program, which is an education and training program. Many people compare it to brain training programs, because it has brain training elements. But it is actually a multilateral recovery program. And we need to understand how the illness works. To understand why all the different strategies matter and why there is no cure. I mean, not that there's a cure for many other illnesses. There are not really cures in medicine, not many, maybe, I don't know, handful, if you're lucky. And that could be argued. But like people think this is how the world works. For some reason, I don't know where this myth has come from. 

But we need to understand that we need to tailor our approach. And we need to focus on the root mechanisms of the illness as opposed to just treating the dysfunctions, of which there are many. And that's what the ANS Rewire program aims to educate and support people in doing. And I always say to people, you haven't done the Dan Neuffer ANS Rewire program. If you'd done it, I'd say you've done the Jackie Baxter ANS Rewire program, right? Because everyone's experience of the program and what they need to do to recover is different. 

And how that can be, even though it's one illness with one pathogenesis, is something that is a little difficult to understand. And it's, I suppose, one of the reasons why mainstream medicine hasn't had many answers for this group of illnesses, which I consider to be one illness, not just because my personal experience, but because of the pathogenesis of these conditions.

Jackie Baxter  
Yeah, sure. And I mean, that's certainly been, anecdotally what I've noticed is that, you know, people who have recovered, there have been commonalities for sure. But everyone's route has looked different, because every person is different. And everyone's kind of iteration of the same illness looks different. So I guess, yeah. Do you help people with long COVID?

Dan Neuffer  
Okay, that's a good question. So what I can say is that, people who identify as having long COVID, and people who have been diagnosed for long COVID, have gone in the program and been helped by it. I guess I have never spoken about this term long COVID because that's a strange word. And I guess, I kind of think, ideally, when it comes to health and medicine, one should be science based, as opposed to using strange words. And long COVID is like, I really don't like that word. What does that mean? 

It's like, it kind of suggests that people have COVID. So are we saying that these people have COVID? Still, two years later, three years later - you got long COVID. So you still have COVID, an infection? That's what long COVID sounds like. I know that some medical authorities have made such suggestions. I'm not aware if there is scientific evidence to back that up. If there is, then we should focus on treating the virus and if there isn't, then we shouldn't say such things. That would be my point. 

What I would say is, if we're just saying we're using term long COVID for somebody who's ill after they've had COVID, that, again, is the most ridiculous, unscientific non medical notion, and I just don't understand why people would do that. I've never seen a physician in the emergency department saying, Yeah, we got three surgeries going right now. What's wrong with them? Um, well, they all have long car accident. No, one person has a ruptured spleen, the other one has a collapsing lung. The other one is got organ damage and broken leg. You know, this is what's called a diagnosis. You don't just go long car accident, I think it's a very, very odd. 

People becoming ill following viral infections is obviously not new. If that is what somebody has, then we might call that post viral fatigue syndrome. That's what it's always been called. And I would not make a distinction between post viral fatigue syndrome and me CFS or fibromyalgia or PoTS. To me, this is one illness with one pathogenesis and one pathophysiology. 

That is not to say, I'm not suggesting that every single person who experienced the symptoms after COVID simply has post viral fatigue syndrome. Because I'm not sure there's any science to definitively back up making such a statement. Whilst we see cases always different with MECFS, there's a lot of commonalities, you see a lot of patterns. I think it might be fair to say, and again, I'm not an expert on Long COVID. In general, I would say that I have had the sense that there are some things sometimes that are different with people having illness post COVID, as with other post viral illness that we've seen, like with the flus or nondescript infections, let's say. 

And what is behind that? Well, I can't say, but it may be a case that these people actually do have post viral fatigue syndrome, and they have some additional pathogenesis. What does that mean for their recovery - does it mean they can recover? They can't recover? Again, like, where's the evidence, you know, where's the actual evidence that means you can't recover. And if we don't even fully understand what those mechanisms are, it's difficult. But what unfortunately happens, though, is that when we turn medical science onto a problem like this, it often gets too focussed the spotlight. And this is part of the problem that unnecessarily mystifies illnesses. 

So if I just step away from long COVID in a moment, because this gets complicated, if we're talking about MECFS, let's say, then, Oh Well, we have researchers, and we look at it and go, well. What do we know? What can we see. And the problem is that depending on where somebody is, in the progression of the illness, and what day you catch them on, you're going to have a different assessment. Let's say I want to look at just real basic things. 

Like let's say, I want to look at the catecholamines, let's say the cortisol output of a 24 hour period, well, I can say - look at some patients go Well, look, that looks normal. And then we look at next patient and go, well, wow, that's like flat in the morning. And then look, the next patient go, well, that's flat in the morning, but at 10pm, it went through the roof to a place where we can't even measure it. It's so high. And then I take the same patient and I look at it the next day and I see something different. 

And I think if you look at that you can perhaps see, that's just all a bit too hard. And that's basically what's happened - it's too hard. That's why it's fallen aside. If I've got Addison's disease, it's very clear. Oh look, I measured the cortisol, there is none. I'm measuring aldosterone, it's like look at this, like, this person's clearly got no adrenal glands, they've got Addison's disease, or if I get Cushing's it's very, it's much simpler, or, you know, type one diabetes, or you know, any of these kinds of diseases. 

Medicine is great at broken. It's terrible at dysfunctioning. And break the arm, cut the arm off, put the arm back on, you know, medicine's good at this kind of thing. And if something's really broken, I mean, let's not mince words, you got Addison's disease. You don't go to a doctor, you're just going to die. You go to a doctor and give you a pill and you swallow it and, it's like so good. I mean, this is like magic, right? 

But when we're dysfunctioning - well, how do you fix that? And really, we can't fix it. We can encourage the body to start functioning normally again, but we need to understand what's going on. We can't just go in and Ooh this is what you should do. You know, it's more complicated, especially given the variance, not just between patients and the symptoms. I mean, obviously, there's huge amount of scientists and physicians who still say well, fibromyalgia and CFS are different illnesses, and PoTS is different illness and post viral fatigue and multiple chemical sensitivity. And, you know, they look at all these things as being different. 

But I don't. I believe this is all one group of illness. Now, in the context of long COVID, I would suggest that I have seen many people who have been, like I said, say they got long COVID. From my point of view, they had post viral fatigue syndrome. And I've seen them recover. And I think there are some people who have some other stuff going on. But I've seen those people make recoveries too.

What exactly is everything that how everything works? I mean, we don't have answers to that. And I'm not even sure we need to have answers to that. You know, I know that in Germany, there's a lot of blood washing going on. And but this has been a discussion with MECFS for years, seeing the changes in our immune system. But this is not curing people, you know, some people feel better, some people don't. We're looking too low down in the problems. We're in the trenches. Okay. That's the problem with a lot of this medical approach is looking at treating symptoms, making symptoms go away, instead of saying, why are they there? 

And I'm not saying we shouldn't do treatments, because treatments can be very helpful. And then they can also help resolve the root underlying problem of the illness. Yes. And that's I guess, where ANS Rewire is different to brain training approaches. Yes. Because in ANS Rewire, we speak about getting people to reengage with medical help, and we explain why this is required, and why it's required for some people more than others, and why it's looks completely different for everyone. Right. But I would caution people about going into a fixing symptoms, bio-hacking, magic cure solution, because there have been others who have walked before you for many decades. Who're still ill.

Jackie Baxter  
Yeah, I mean, you're talking about long COVID as a term. And there was someone I interviewed that said something along the lines of A diagnosis is only useful if it leads to a cure or a treatment pathway, or something practically useful from it. And I think because, I mean, a lot of people do like long COVID, because it makes them feel heard, or for all sorts of reasons. But because it's such a huge umbrella term, it's like, well, that could mean so many different things within it. It could be anyone from organ damage, to post viral fatigue, to all sorts of other things, that, as you say, maybe, you know, it's useful as a term, maybe for some people for some reasons, but in terms of kind of getting help, it could maybe be more useful.

Dan Neuffer  
This is exactly why I kind of rejected this MECFS diagnosis in the beginning, because I'm like, that's just sounds like, No, I mean, I've got a real illness, you know, like, I'm like sweating and I've got fevers, and, like, my glands, like, I think I've got a virus or something, you know. Like, I was fine, and then I'm not fine. And I don't know, I'm not just fatigued, like, you know, a bunch of other problems. Fatigue is just the smallest part. Well, not the smallest, obviously, that grew over the time. So I was like, what you're saying, like, if that didn't seem helpful, it was just a mystery illness, you know? 

And that's why I, regrettably in hindsight, distanced my self and kept trying to find a doctor who would find what virus I had, you know what I mean? I guess, you obviously, you've noticed my irritation with the term. I feel for all these people. I mean, the pandemic was so - there was so much fear mongering, then, you know, this on top of it, and then you're ill, and then there's all this additional level of fear, like, getting ill is scary enough as it is, when you don't know what it is. But but then when it gets described, like, in a term, like long COVID, and it's also non science based, and it's coming through. I just find it to be unhelpful. You know. 

I don't think doctors like it, I don't think is particularly helpful for them. I mean, they can have patients come to them, and they want to help them and it's like, they don't have some magic pill that they can give them. You know, I mean, if they did, they would write us scripts like crazy. So I feel bad for the doctors too, because I often feel doctors kind of can't do any right by anyone either. It's like people have unrealistic expectations. We all have this image of the world, you get something wrong and go to a doctor, and then they'll just fix it. And it's like, What illness does that happen with?

Jackie Baxter  
Yeah, and it's almost like, because there's so much within long COVID - I mean, certainly my experience has been that I've kind of needed to sort of unpick it a bit to try and work out some of those things that were actually wrong. Because like you say, I have long COVID. Well, there isn't a cure for that. So what do I do - I, you know, kind of look at what that involves. And, you know, kind of discovering Dysautonomia - that was quite a big thing for me, because there is stuff we know about that, for example, and kind of then being able to work out what that meant in some form. But you wouldn't get that from, I suppose the term Long COVID So yeah, I've never really thought about it before.

Dan Neuffer  
You wouldn't get that from the term MECFS 

Jackie Baxter  
No, 

Dan Neuffer  
Now obviously. That is what I'm saying. Dysautonomia. But people don't even say that about fibromyalgia. There's even like researchers who would not say that. Right. Supposed experts and I suppose in the beginning, I was like, talking about hypothesis. And, you know, I think goodness, that ship sailed now, from my point of view anyway. And some people will strongly disagree and it's like, okay, just look at the evidence is what I say. 

But the problem is that there's so much like, if it was narrow dysautonomia, like when somebody suddenly developed PoTS, everyone goes - they even call it dysautonomia, right when people have PoTS, because that's so obvious. But when you've got 1,000,001, other things going on, which are real, right, the immune system, the problem, the changes in our bloods, the hormone level, you know, there's so much going on. It then obscures it, and then people think, oh, maybe that's part of it. But you got to look at a logical progression of how an illness works. 

And, and the other thing, just to call it long COVID, because you had COVID and you're ill, I mean, like you said, if you have organ damage it's different. I mean, I knew one person, she had long COVID. And, you know, she had the original Wuhan virus, which was pretty nasty. And, uh, she ended up like, they wanted to amputate one of her lungs, because she was still coughing up blood, like three, four months later. And I definitely have long COVID. I mean, you know, I don't know that. It's not the same is it? So I think it's unhelpful. 

And I suppose in summary, I don't know what long COVID is. I don't know if it's more complicated than post viral fatigue syndrome. I would suggest in some cases it is. And in some cases, it isn't. That's been my experience. And I would also suggest that even in the cases where it is more complicated, that this does not mean that you don't have post viral fatigue syndrome. It does not mean that you cannot recover. And doesn't mean that other symptoms won't also resolve. 

Now, I can't say categorically that that's absolutely what's going to happen. Because nothing is certain with post viral fatigue syndrome and any of these conditions. But there is no scientific determination to make such statements. And so we need to be very mindful about the determinations we make in ourselves. Because our illness is scary enough as it is without overlaying such horrific narratives. You wouldn't do it to your child or your nephew, or niece. So it's inappropriate to do it to yourself. So if we don't know all the answers, let's not build the most horrific picture possible. That's my answer.

Jackie Baxter  
Yes. And it is something that we do, isn't it? I'm 100% guilty of that as well. Sort of catastrophising.

Dan Neuffer  
I was guilty of that, too.

Jackie Baxter  
Yes. Yeah, definitely. So I'd love to talk a little bit about what causes post viral fatigue syndrome?

Dan Neuffer  
Okay, well, if you Google, What causes post viral fatigue syndrome? You're gonna get as good an answer as if you Google What causes MECFS? What causes Fibromyalgia? So officially, it's a big mystery. What I can tell you is, what I propose is causing post viral fatigue syndrome and this group of illness. The word cause has to be understood. So what I'm saying What is the primary mechanism that causes these dysfunctions and symptoms to perpetuate? That's what I'm talking about. 

And what I'm saying is that it is Dysautonomia, that is the root driving mechanism that creates the dysfunctions and symptoms. And the dysautonomia is basically a dysfunction of the autonomic nervous system. And the autonomic nervous system is the part of the nervous system that regulates everything. So regulates your heartbeat, regulates your digestion, all the hormones in your immune system, your skin, your you name it, right. 

And really, I guess when I came to my conclusions, I was a little irritated at the time, because I'm thinking, Well, surely, if anybody were to come in to the doctor and say, Oh, I've got problems with my guts, and they're not working properly. And, you know, and then at night, sometimes I get so thirsty, no matter how much I drink, and I get sweats at night. And then I get really exhausted, and then I get pain, and like a problem with sounds that make me upset. And like, I mean, the list just goes on and on and on. 

And I remember I used to be embarrassed to go to doctor because I sounded like a hypochondriac. It's like, you've already had like 20 problems. Now I've got like, another five. Like, it's kind of embarrassing. You know, you can't bring yourself to say it, because it kind of sounds so unlikely, let's say, you know what I mean? And now like, when you see any kind of patient with that many symptoms, then surely, it would seem obvious to me that either this person has Dysautonomia. Or they're crazy. And just making it all up. Right? Because no one person can have so many different illnesses and symptoms. 

And unfortunately, it seems that even though the obvious one of the dysautonomia, that seems to be ignored, and instead, the second one of the gets adopted, which is that you're making it up or that you're crazy, or it's all in your head or something like this. But yeah, I'm saying it's Dysautonomia, and that is what's driving the symptoms. 

But a lot of the secondary dysfunctions that we then experience and the symptoms, and lots of other things - are stimuli that we experience in life, trigger the autonomic nervous system. And that's normal, we always trigger the autonomic nervous system. But when the autonomic nervous system is in a state of dysfunction, then this triggering is excessive. And this is why we are ill, this is why I'm saying people are experiencing illness.

Jackie Baxter  
Yeah. And I think, again, over my experience, it was understanding that there was kind of this one link between all of the stuff, and the stuff can look different for different people. And I think this was part of the confusion for me. It was like, Well, you know, I have this set of many symptoms, and somebody else has this set of many symptoms, and there's a lot of crossover. But you know, that person's got gut problems, and I've got breathing problems, or, you know, so it was this kind of like,  How can they all be related? 

And then when I realized that the autonomic nervous system was like, well, a thing. It was like, oh, so that controls kind of everything. So that's why all of these different things are affected, and why it's not always 100% the same in all these people. Because everyone's different. Again, it's coming back to that again, isn't it? So it was yeah, it was a huge kind of moment for me when I understood that. 

So I guess the next question after that would be, how would one recover from that? And I guess a part of that would be how can the program help people to do that?

Dan Neuffer  
It's my view, that the most important thing here is to understand what's going on. Because without context, to persist with something is difficult, unless you get immediate magic results. It's difficult to persist. And it is the understanding that allows us to customize our approach, and maybe do some heavy lifting that we're disinclined to do. 

And so in essence, what I'm saying is what we need to do is we need to do multiple things. We need to first of all reduce the triggering. And then we need to create an environment that will allow positive neuroplasticity to occur. So neuroplasticity is the ability for the nervous system to change and how it works. That's obviously the big step, is we need to retrain the nervous system to behave normally. To behave normally to stimulus, whether that stimulus be noise, smell, exercise, an infection, existing symptoms in the body, and blood sugar regulation. I mean, whatever, right heat, cold all of these things. 

The key is not just in fixing dysfunctions, the key is in fixing the dysautonomia. And the addressing of the triggers and the dysfunctions in the body has to be in the right context. If we try and fix them to resolve them. That is a merry go round. I mean, people have been doing that for like 50 years. That doesn't get you anywhere. Yeah, I mean, bio-hacking, as it's called, was probably invented by these people, the scariest thing for any doctor, because they seem to know more than most people who are bio chemists, right. But like, these things can be helpful. But they need to be done for the right reason. That's what I would say. 

A lot of the brain training community basically, doesn't like physical treatments, because they see it as a contraindication to brain training. I'll give you an example. Like for mainstream brain training, for chronic pain, for instance. And this old, I mean, still not being used really, in mainstream medicine, but it's like, very old, established science, right? That is when people have a lot of pain. But there's no real need for the pain, like there's no acute injury or anything. And the brain is basically learned to feel pain, this is we get this a lot with back pain, you get this from people who've had car accidents, all kinds of things, and they have pain for years, you know. 

And then what we need to do is we need to treat the brain, re-educate the brain to start not to feel our pain, right? Now, some of that is done to manage the pain. It shouldn't be done to manage the pain, it should be done to get rid of the pain, like I've been sending people to pain psychologists for over a decade, now, they get there and they go, we can help you manage the pain. And I'm like arghhh don't manage the pain, get rid of it. Right. 

So, you know, everyone's trying to be careful not to over give expectations because they might not be able to meet them and all this. Look like, aim for the moon and fall short if I have to, but let's just try and get well, for goodness sake, you know, and, and like, the science is really established, you know, I mean, there's a reason why there's a field called pain psychology. It's not because the pain isn't real, or it's imagined. I mean, the pain is absolute real, it's as real as me smacking you on the hand with a hammer. Right. But the point is, we need to address that. Yeah, we need to address that. 

So and they don't like when you then talk about physical treatments. Because if I start talking to you about what's wrong with your back, then your ability to engage in the techniques to retrain your brain is hindered. Now, of course, they don't look at the science and the fact that the correlation between spinal abnormalities, and spinal pain isn't all that strong. You know, you get a whole bunch of people and scan all the backs and go, Oh, look, all these people got these problems, and they got no pain. All these people have got pain, and they got no problems. And oh, there's some people have got problems and pain - well it must be the problems that are causing the pain, right? I mean, this is not logical. So I don't know why we still do this. I guess we do it because in some cases it's true. In some cases, it's true. 

And so there's a difference between short term and long term. Right? Like, none of this stuff is so black and white. When I've spoken to like pain research scientists, they have often said that all chronic pain is in the brain. Full stop. Right, full stop. And I'm like, you know, one, somebody who's got severe SI joint dysfunction for the last 15 years and still has severe SI joint dysfunction, I would suggest it's not all in the brain. Call me old school, I'm going against the scientist here, okay. Right. Because when they then finally learn how to do the core exercises and resolve the SI joint dysfunction, and start to feel less pain. Well, how did that work? Alright. 

But to be fair, on the flip side, you might say, Well, why do they still have such SI joint dysfunction, why they're not engaging their back properly in the corner muscles, and a lot of that has to do with the way the brains behaving. So suddenly, you can make more of an argument for it's all in the brain, but it's not that simple. It's not a black and white, is what I'm saying. 

And so the challenge is there are huge benefits to physically treating our body, engaging with doctors, engaging with naturopaths, engaging with physical healing strategies, because there are even dietary strategies that directly impact your autonomic nervous system. And the challenge is doing that in a way that does not interfere with the ability for us to engage in the brain training. 

And I suppose, I think it would be fair to say, that there is pros and cons to the different approaches. I've had a ton of people who tried all the brain training things in the world, coming to the program. They're like, now it makes sense, this is amazing. I'm doing this stuff and this physical strategy, and that and this and that. And now I'm recovered. Like it really worked. 

But I can tell you, there are people who went into my program and did all of that. And then just didn't have progress, and went off and did a brain training program that would be just focused on just doing the brain training, who then had success. And the reason is because they couldn't manage this contraindication between the two opposing strategies. I try and help people, I try and teach it. It's not that easy, actually, you know, but all of this, if you can't even have this conversation of what is this problem that you need to overcome, then what are your chances of overcoming it? Right. 

And so my approach has been to go for multilateral approach, as opposed to and what most people are doing is either to go purely biological approach, or purely brain training approach. And I personally believe that the two should work side by side. So that's a long winded answer. *laughs*

Jackie Baxter  
I think it's fascinating and mean that there does seem to be this kind of almost war between the sort of biomedical cohort and the, what we might call maybe the mind-body cohort. And I don't know if I am naive, or just not involved in medicine and seeing it from a different standpoint. But I find this kind of opposition really strange, because surely both are important, as you've just kind of said, you know, the mind impacts the body and the body impacts the mind. I think we know that. So surely, we should have that in mind when we're looking at things that are going to help us. 

Dan Neuffer  
Well, you know, like, I don't like to to mind body that much. Right? I mean, I'm talking about a neural training approach. And because mind-body suggests there's something wrong with the mind. And if I fix the mind, then we're going to fix these problems in your body. It's like, hang on a sec that's not... Well, when I say that's not what's going on here, that might be going on for some people. Yes, I won't deny that, because of the way that the autonomic nervous system works. For some people, that can actually be true. But I wouldn't say that this is what goes on for most people. Like if I have somebody who's got severe PTSD, and depression, anxiety, and ends up with CFS, fibromyalgia, post viral fatigue and whatever, that resolving that would be absolutely key. 

But I mean, what about the rest of the people? So saying mind body? Yeah, I mean, I coined one term that I'm pretty sure I've invented. And that is a somato-neurological approach. Right? And that is where you train the brain through your body. So it is one yes, there is a mind nervous system connection. Right mind nervous system body connection. There's also a body nervous system body connection. Right? And there's more than purely neurological body connection, right? 

And that's where you see people who have like, especially triggered through their senses, whether that be the touch on the skin, they're triggered by cold or hot, smells, sound and lights. In fact, I think it's one of the key telltales whether someone has this illness or not. And I mean, some people are even triggered by changes in barometric pressure. They are like some kind of weather forecasting system, right? They'll get a flare up. And that's more of a purely neurological thing. Because it's not a mind thing. They don't know that the weather is changing. It's a beautiful day!

Jackie Baxter  
Yeah, that's really interesting, isn't it? Yeah. I hadn't even thought of that. And I think, I mean again, we're probably going down a bit of a rabbit hole here. But I think possibly it's linked with medical gas lighting. There may be other reasons as well. But I think there can certainly be a way that people can think, when you mention things like brain retraining, and even just kind of the brain, where people will say, It's not in my head. 

And, you know, you've said, you know, this, this pain, the symptoms, they are very real. I mean, we all know that, we've all felt them, haven't we, you know, it's like, my heart is going insane. My breathing is not right. I'm not making that up. That is extremely obvious. If I was to, you know, go for a medical exam right now, you know, they would pick it all up.

Dan Neuffer  
Yes. And it is not anxiety. It feels like anxiety, and anxiety will arrive sooner or later. Or anxiety might even precipitated it, or be part of the illness. But it isn't anxiety. In its pure sense, it's a symptom. 

Jackie Baxter  
So yeah, how do we answer the it's not in my head question, I suppose?

Dan Neuffer  
Happy to speak to that. Look, first of all, you know, you used to term gaslighting. If people were respected in the beginning, and oh, my goodness, you really have these symptoms, there must be something wrong with you, let's find out what it is. And then when they were just found out, they're being told what it is. And with the understanding that this is a real physical illness, with real physical symptoms, nobody would then if we talk about brain training, have an issue and go, Oh, you're saying it's all in my head? Nobody would do that. Why would you do that? 

I can tell you, that does not happen to any stroke victims. I've never heard of some stroke victim going in and going to the physio where they're learning to walk again, going, crossing his arms going, What are you saying it's all in my head? Have you ever seen them? No. Because they were told you had a stroke, you've got damage, and you can't walk properly. And that's real. We know you can't, you not just being lazy, when someone's had a stroke, no-one goes You being lazy. You don't want to talk, right? You're pretending to have a face hanging off to the side? No one does that. Right? 

And then they go, Okay, well, yeah, they've suffered an injury. And here's the process. And we have to teach the brain how to now do this, and we do the brain training with you and - never comes up. They never even heard of this it's all in your head concern. Now, obviously, I'm not suggesting that post viral fatigue syndrome is the same as a stroke, because there's a different problem. But it is a problem with the brain primarily, like a causal problem. Obviously, there's many more problems in the body. And I think anyone has to recognize that it's multifactorial, but those things are resulting, yes, or self-perpetuating, and can resolve once the autonomic nervous system returns to normal function. 

And basically, I think, you know, we need to just change how people are treated in the first place. And then we won't have this discussion anymore. You know, I've seen people being accused of saying that they're saying it's all in their head. And when I've looked at it, they never said that. The issue is often not that somebody is saying it's all in your head. The issue is, often the people are receiving it like that. And the reason is, because they're primed. They're emotionally primed, because they've had too many roll of the eyes, too much lack of understanding. 

And I am going to just point out that, before we get too judgmental, and we feel like we so badly done by - which we are - you got to recognize that you'd probably not be any different. And that is because we are not evolved to understand chronic illness. It's an unnatural condition. Have you ever seen an elk with type two diabetes? Have you seen a bear with chronic back pain? limping through the woods for years, likethis  is unnatural. It doesn't happen in nature, chronic illness, right? Something happens, animals get over it, or they die. And that's that. 

And in this artificial construct of humanity, where we live different to every other animal on Earth, especially in modern society. I mean, even if you go back, probably 50,000 years, probably didn't have chronic illness then. Right? But these days, we have chronic illness and people just can't get it. They can't understand it. 

I remember, I had this experience, even with some back problems a few years ago, My back, I can't walk, I can't get a bed. I'm really bad in a bad way. And it's like, oh, okay, oh, that's not good. You know, then one week later, hey, we're going like to the beach. And then we got to, like, do this, this and this, you want to come? I'm like, like they just, we cannot understand chronic illness. That's my view.

Jackie Baxter  
Yeah, you know, I think this whole experience for me has been an eye opener in many, many ways. And I suppose speaking kind of to what you've just said, it's very difficult for somebody to understand any experience, I suppose, unless they have some experience of it. So you know, I'm not saying that because I have had long COVID, and, you know, I'm now recovered, that I understand everything about your personal experience, or about anybody else's. But I suppose it's that I have enough experience of it, that I can at least understand on the same level. 

And I think that's the difference between someone who has and someone who hasn't had experience, I suppose, because even my partner and I have had this conversation quite a lot. And even though he has experienced it through me, through living with me, and through seeing it every single day, you know, he can understand probably more than a lot of other people. But he still doesn't understand, because he hasn't had the actual experience of having it. 

And, again, I suppose that was part of it being a bit of an eye opener, because I would have kind of considered before that I kind of understood my two friends who had ME. And now I'm thinking, Oh, no, I didn't, you know, I might have been empathetic and sympathetic, and hopefully understanding towards them as much as I could be. But there was no way I could have been, "I understand your experience", because I suppose in some ways, if I had said that, it would have been actually quite patronizing to say so.

Dan Neuffer  
look, I mean, patronizing. I mean, you know, nobody has bad intentions. I mean, of course, my experience, and that experience of 1000s of people around the world, maybe millions is exactly what you say, yeah. You cannot understand and experience unless you've been through it. You're going to get some insights, you know, and like you say, partners often have a great insight into the struggles that you have, and they can empathize, but they don't, cannot appreciate what goes on in your head and how terrifying it is. 

And you know, how suddenly staying extra 10 minutes at the shops, or having to drive home on your own, it's a problem, you know, what I mean? Like, and what fears associated with that, they cannot understand that. And that's probably a good thing. I don't know, if I want everyone to understand that, you know, if we all understand it, we're in a difficult place. Maybe we need to learn to accept somewhere along the line that sometimes in life, we just have to bear a burden on our own. Maybe that's always how it's been. And, and maybe we don't recognize that until we meet such a life changing challenge. 

I mean, people used to say to me, when I used to do the recovery stories sometimes and talk to people who recovered - Ah it was a spiritual journey, my recovery, you know, and often say that being a science background, and I was like looking at mitochondrial function and hormones and this and that and they're like - it's a spiritual journey, and I'm like, I would roll my eyes so hard, I almost injured myself. 

Yeah, now, of course, that was just ignorance. Even after I've recovered, it's taken me many years more and seeing so many hundreds of people's journeys, that I finally understand and appreciate what they're talking about. And, when you consider some of the things, for instance, that I ask people to do in a program for the brain training, you kind of understand it, because I mean, these are unnatural things to do, they're stupid, they're wacky, and without context and understanding education. They're just madness. Illogical, stupid madness. 

And until Dr. Merzenich came along, and finally through the overwhelming evidence that he had been accumulating and that was starting to be accumulated, managed to turn around the narrative that the brain was set at adulthood. You know, in the beginning, he would do his research papers, and he would use language that was, you know, politically correct for lack of a better word, like the Brain appears to have responded in a way that one might not have expected. 

You know, he couldn't say, Oh, I observed neuroplasticity. Because everyone said, Well, there's no neuroplasticity, you can't have that once you're an adult. Alright. And he had evidence, right. But even with the evidence, he was ridiculed. Yeah, until eventually what happened? And then we got cochlear implants based on his findings. And so we know now the brain is now plastic, but people get very rigid in their beliefs.

Jackie Baxter  
Yeah, I mean, I've definitely found keeping an open mind to what might and might not help has been helpful. And you know, don't dismiss something, just because it might not fit into your very specific worldview. Because, you know, you're maybe entering a different world when you're experiencing something.

Dan Neuffer  
Well, I mean, what was the saying, like, the whole thing about doing wacky things? If your great, great grandfather, right, and he had a stroke, and he would have gone to a doctor, and doctor would have said, Oh, part of your brain has died. And you'll never be able to walk again. And there's nothing you can do. If I were to take him to the physio now and say, oh, you know, just walk, take a step. And he's like, What? What's are you talking about? Yeah, we're going to teach your brain to walk again, you'll walk again, we've got patients all the time coming in, they can walk again. He'd be like the brain is dead, and then go, no, no, look what you do it. Just imagine your leg walking. Imagine, imagine moving your leg and then the physio drags the leg, shuffles it along the ground? Goes see, you took a step. 

I mean, can you imagine how you would have reacted? You would have gone like, what kind of an idiot you think I am? I can see it was you who moved my leg? I can't move it. I tried to move it. It doesn't move. The doctor told me that my brain is dead. Impossible, right. And yet, now your grandfather would go and be told a completely different story. And he'd be shuffling along in there holding on to the bars, right? 

So having context and education is essential for us to be able to engage in brain training effectively. There's no way the first person would ever have followed through. 

Jackie Baxter  
Yeah, that's fascinating. 

Dan Neuffer  
Because it's so ridiculous, right? It's not ridiculous, if you understand the science behind that. But it is ridiculous if you don't. That's why education is everything. In my view,

Jackie Baxter  
yeah, definitely. So that's just blew my mind a little bit.

Dan Neuffer  
I've had people go on my program. And like, a couple of weeks later, saying, Ah, I'm cured. I'm this, like they send me these emails. I get them every once in a while. And, and of course, I know that it's not true. It's kind of awkward, you know, I don't want to burst the bubble and go, well, I'm great you're feeling progress and just keep going, you know, and because they've had like a shift, they've experienced a shift. They've gotten an understanding and the whole way they're relating to everything. And it's like, they have this incredible shift sometimes. Not everyone, you know, just some people. 

And it's, this shows you the power of understanding. Now, I can promise you that none of those people after 8 days were cured - would not happen. Right. Okay. But obviously, they felt something, right. They wouldn't just say that if they didn't feel a big shift in their body. Yeah, at least for time being. Yeah. And I haven't done anything. They haven't done anything. All they've done is learn some stuff. I mean, it's not - how many strategies can you do in eight days? So education is key.

Jackie Baxter  
Is there anything else you want to say about the program itself? I think we touched on it quite a bit earlier.

Dan Neuffer  
Well, it gives you some idea what it's about. Look, I guess the thing to say is, the program is for post viral fatigue syndrome, or MECFS, Fibromyalgia. If people think that that's what they have, that's what the doctors diagnosed with them, or if they feel the illness matches those conditions. As long as they've been thoroughly checked out, we should always be checked out. We should never assume we have an illness because it could be something else, right? But they've been checked out by a doctor who shrugs their shoulders or says you have MECFS, post viral fatigue syndrome, then it might be appropriate. 

It's not a magic cure. Right. It's not a magic cure. And I think people should only do it if the whole premise of the program makes sense to them. If they believe that's right for what they experiencing. Because only then can they engage in it. So I actually discourage people coming to the website and buying the program. What I say is watch the first four lessons. So you learn one is about what's in the program to see if that's the right fit for you. 

And I've had some people go Nope, that's - I don't know about that. And then they come back six months later, and go, Yeah, I'm ready. And they do it. And that's great, you know. So don't rush into anything. That would be my key things. In terms of what's in it and how it works, you can see that from those free lessons. And you've probably got some idea already from our chat today.

Jackie Baxter  
Sure, and I will make sure that a link to the free lessons and your website, and there are some other things that you've sent me, go into the show notes, so they'll hopefully be easy to access. 

Dan Neuffer  
Absolutely, I guess not only parting comments is - don't let people fill your head with fear and negative stories. It's a terrifying experience to have such a chronic illness. And the information that we get sometimes is correct, but out of context. And it's difficult in this world to find a credible source of information. That's what I will say. It's difficult to find a credible source of information. At the end of the day, what really counts is, you know, I say the proof is in the pudding, you know? And so when people talk about these negative things, they go, is there scientific evidence that there's absolutely no way that you can recover, you can get better, that this is broken? 

Because, you know, we think that life is about having solutions. And that is completely incorrect. If life was about having solutions, then we wouldn't have many problems. If life was about having solutions, then we wouldn't have pollution in the world. If life was about having solutions, then we wouldn't have people with obesity and lifestyle diseases, heart disease and type two diabetes. And I mean, I can just about get a kindergarten kid four years old, to give you the solutions to break through the medical mysteries and science, they can cut through a lot in like 30 seconds as a four year old. Right? Okay. 

So the solutions are often not complicated. It's our ability to engage in solutions. So therefore, if it's all about what you're able to do, looking after your mindset, is probably more important than finding the correct strategy. Because you can find a mediocre strategy that you can engage in, you can still progress and you don't need to be 100%, you just need to progress. Because once you've progressed, you can have more progress. 

But if your mindset isn't right, you could find the miracle cure and couldn't use it. And I gotta tell you, there's very few of us who have a particularly strong, robust mindset when we undergo such a testing experience as this illness, you know, and so we need to be gentle with ourselves and understanding, and treat ourselves with compassion. I'm starting to sound more and more like those people who talk about the spiritual journey. *laughs* But now, I can see when we talk about that. So that I guess that would be my closing message.

Jackie Baxter  
Well, thank you so much for joining me today and for giving up your time so late in the day for you as well. It's been absolutely fascinating diving into all of this, and I hope it will be useful for people listening as well. So thank you so much.

Dan Neuffer  
My pleasure, Jackie. Lovely to meet you.

Transcribed by https://otter.ai