Dan Neuffer discusses new treatments for Long Covid & ME/CFS targeting ANS dysfunction

YouTube interview:

Written Transcript:

[00:00] Liz: All right. So I’m so excited today to be chatting with Dan Neuffer, who is the creator of ANS Rewire, which stands for Autonomic Nervous System Rewire. And he’s joining me today for a candid discussion.

There’s a lot of research that shows the nervous system plays a major role in ME, CFS, fibromyalgia, POTS, Long Covid, and related conditions. There’s medications, there’s gadgets, there’s supplements, there’s surgeries purported to help with these.

Then there’s also lifestyle changes and nervous system regulation methods like meditation, brain retraining and somatic tracking.

Dan is going to be sharing his insights for those weighing their options or those just interested in the science. And just a friendly reminder that this is not medical advice, we’re just sharing our opinions today.

Yeah, so Dan, how’s it going over there in Australia?

[01:04] Dan: Yeah. It’s going great. But thanks for inviting me to talk about this.

It’s a very interesting topic, and I think some people might be surprised by what we’re going to talk about.

Quick summary: In this interview we discuss the new Stellate Ganglion Block study for Long Covid, how LDN works, Vagus Nerve stimulators, and why a multilateral approach is often needed for healing from the conditions mentioned above.

[01:16] Liz: And before we get into this, I just want to say Dan, because your channel, CFS Unravelled, it was the first channel that gave me hope for believing that I could fully heal from ME/CFS. 

And I remember, I think it was James’ story on your channel. There was Beth’s story, and there was that lady – she had fibromyalgia, but just her story was so inspiring. It was the first thing that really gave me hope.

And I actually did do your program, ANS Rewire, and I didn’t initially fully commit to it when I was doing it, but then over time I ultimately would implement everything it recommended.

But yeah, I was just a little bit too caught up on the diet and supplements route at the time. And then looking back, I realized that might’ve been more of just a feeling of control or the placebo from all those supplements. But I ultimately had to put in the work with the lifestyle and the brain retraining.

Liz note: My super healthy diet was helpful during my recovery journey for helping stabilize my blood sugar (which was hypersensitive) and avoiding diet-triggered symptom exacerbation. I also found several supplements supportive, though spent tens of thousands down this rabbit hole trying hundreds of different ones. My body seemed to need much more nutritional support when I had CFS. While my supplements helped me to some degree, looking back, spending so much money on supplements and taking 40 a day wasn’t the solution for fully getting out of CFS.

[02:24] Dan: Thank you for saying that. You know, most of us have to go through this journey.

And the issue is, well, obviously, unlike the brain training programs, ANS Rewire is a multilateral. approach, and it does have this inherent challenge with that, that when we talk about why diet is important, why physical treatment is important, which is I guess what we’re talking about today, why working with your doctor is important.

It’s easy to go off on a rabbit hole and forget the context.

The other thing though is, which perhaps you were alluding to, is we need to be ready to engage in this. And when most of us first get ill or first get diagnosed, we go into this tailspin and because we know there’s something wrong in our body, we go, well, whatever’s wrong in the body, we want to fix.

And so we look at the supplements or medications or this or that, and we keep trying to hack our way out of it, we’re trying to fix it, and this makes it very difficult, and many people get stuck in that, sometimes for years.

And it’s not until they finally go, “Oh, none of this stuff works, I give up on everything.” 

That they’re then actually ready to look at a more holistic approach.

[03:37] Dan: And then they get frustrated because now I’m trying to ask them to do the things that they tried before that didn’t work. 

But it’s one thing trying to do something in isolation and another thing doing it in a multilateral approach. 

And this is really a key theme with regards to the treatments that we’re talking about.

[03:56] Liz: Yes, everything kind of has to fall into place. and your program is very comprehensive. Though it’s not crazy complicated either.

It’s definitely doable, but yeah, I did have to go down the rabbit hole for, I think two and a half years, I was going down the rabbit hole. So if you’ve been down the rabbit hole, trying to find the latest supplement, perfect diet protocol, you are not alone.

Liz: So, the reason I initially reached out was because I saw something online.

There was a small study showing something called a Stellate Ganglion Block relieves Long Covid symptoms in 86 percent of patients in this small study. So for people watching a Stellate Ganglion Block is when they inject anesthesia, I think in your sympathetic nervous system and the nerves next to your voice box. And I was like, I want to get Dan’s opinion on this.

Because I guess they’re basically shunting the sympathetic nervous system and for, I guess, 86 percent of people that’s helping reduce symptoms of Long Covid.

However, I did read people, in forums are saying, “Oh, this didn’t work. This made me worse.”

So I love your thoughts.

Liz note: The forum I believe contained people with CFS, Long Covid, and similar chronic illnesses.

[05:22] Dan: Okay, so…

Liz note: I recorded a separate full explanation of the study.

[05:23] Liz: So before Dan shares his thoughts, I wanted to share more details on this study. The researchers behind it had a hypothesis that the nervous system’s immunomodulary activities are playing a key role driving Long Covid symptoms.

And it’s clear, if you read the paper, they really have a good grasp on the vast scope of what symptoms people are experiencing and the prior research that has been done.

  

They cite how the autonomic nervous system, or the ANS, plays a crucial role in managing inflammation and endothelial function. And they suspect for people with Long Covid that they have sympathetic nervous system over-activation, and also underactive Vagus Nerve activity. And the Vagus Nerve, I believe, is associated with a parasympathetic response.

But in this study, they initially focused on blunting or reducing the sympathetic activation by anesthetizing the sympathetic ganglia of the participants. And there were 41 people studied, 35 reported fatigue, and 27 reported post- exertional malaise, which are also hallmark symptoms of ME CFS.

And as those familiar with ME/CFS know, except for cough [and loss of taste/smell], all these other symptoms analyzed in the study are very familiar.

Though like with Long Covid, not everyone has everything.

So the results after the stellate ganglion block procedure show to have a significant impact on relieving symptoms across the board. And it looks like even more so for the women in this study.

And I just wanted to acknowledge in the second chart, it seems the symptom “post-exertional malaise” wasn’t copied over, but it says “Symptoms will worsen,” which I assume they meant “Symptoms worsen after exertion” based on the same number of participants who reported the symptom and the same ordering on the chart.

In the discussion section within the published paper, they acknowledged timing may decrease the effectiveness of the stellate ganglion block. In this Long Covid study, they studied people with post Covid symptoms from 3 to 29 months.

While this study only looked at people with a Covid onset, which is a more recent thing, they said in their clinic that they have observed people who have Chronic Lyme, CFS, or ME for a longer time, typically on average have a 10 to 20 percent reduction in their symptoms with each injection, which is definitely something, but it’s less than the results we’re seeing here for people with long Covid.

We should also keep in mind that this study might not be representative of those who are very severe or severe as it required going into their clinic.

And this is just a friendly reminder that nothing on my channel or what we’re talking about is medical advice.

The people who ran this study were clinical experts who were able to address potential side effects.

So don’t just run off to some country to try to get this.

You can see the full study on Cureus.

And you’ll see these researchers really seem to grasp the dynamic interplay of our nervous system and immune system, and that this small study really is only a starting point and it calls for more research.

But let’s get back to the interview and back to Dan’s thoughts.

[08:57] Dan: Okay, so, the first thing is, I group post viral fatigue syndrome together with CFS, fibromyalgia or POTS. I do not consider them separate conditions.

But the medical community does. They give them different names. And this is because they’re diagnosing, except for POTS, they’re diagnosing based on symptoms, as opposed to pathogenesis. This comes out of the fact that the illness has been sort of described as a “mystery.

When I wrote my book 12 years ago, if you went on any of the medical colleges websites, let’s say for rheumatology or for whatever, and you’d look at these illnesses, it would say it’s a mystery.

“It’s a mystery. We don’t know what causes this,” right? And I was proposing even back then that it’s not a mystery, and it really should be obvious to any second-year medical student what’s going on with such a patient.

Because there’s so many symptoms, that’s really the biggest clue. Now, things have changed.

If you now go to these places, or if you look at any research paper, you’ll start to see them referencing to the root cause of the illness as being a nervous system disorder. And again, it’s a bit odd, because the World Health Organization said this like many decades ago.

So it’s no surprise if you have, autonomic dysfunction…

So autonomic nervous system is the part of our nervous system that regulates whole body. Our heart rate, our breathing, our immune system, literally everything. And so it seeks to regulate us to function appropriately. So, if you’re going for a 100-meter run, you need to be really revved up.

If you were going to sleep, you need to be really calm. And everything has to change accordingly. That’s what the autonomic nervous system does. And we’re saying that this is the part that doesn’t work properly. And, so I’ve spoken about dysautonomia for this, for a long time. Many people have also talked about this, and they’ve described it as a sympathetic nervous system over-activation.

And I have some thoughts about that, but before we go into that, if we were to assume that you have a sympathetic nervous system over activation. So that’s the part that mobilizes you, that depresses your immune system, that gives you energy, it’s basically a fight or flight response.

And the sympathetic nervous response is causing a lot of your symptoms because it’s overactive, right? A bit like, when you feel rundown and your immune system goes down and then you catch a cold.

That’s like one example of an overactive sympathetic nervous system, right? So if you were to blunt that, it makes sense that some of the symptoms would go away. And so, sure enough, that’s what was done in this study, and of course it showed results that we might expect. But here’s the thing.

Before I go into this whole is it sympathetic over-activation discussion. The first question is: Is reducing your symptoms a good idea?

Most people would say, “Oh, of course I have to get rid of my symptoms.” And of course you will do enough for two and a half years, right?

Why are the symptoms there? It’s like when we see people getting a fever and they get an infection. Oh, the fever’s really high. Oh, it’s this high now. I won’t even use numbers because everything gets controversial, right?

It’s this high now. Oh, but now you, you know, you could have a fit. Now we have to use medications, which, by the way, we don’t even know how they work, right? Panadol? Paracetamol? Okay. We have to use this to bring down the fever. Why?

Fever is like an example, of the immune system being ramped up. And many people go, “Oh, it has to do with the temperature in your body, because viruses can’t survive at higher temperatures.” This is not really what’s going on. When the temperature in the body rises, it changes the way the immune system can mobilize and function.

It’s more about that than killing a virus with heat. Because think about it, you know, it would be odd if the virus can survive at 37 degrees but not at 40, do you know what I mean? And so by actually suppressing this immune response, this fever, you actually suppress the ability to fight an infection. But because people have found the idea of someone having a febrile fit very uncomfortable and distressing, they say, well, we’ve got to make sure we stay on top of that. But does it make sense to get rid of it?

And here’s the thing. Does it make sense to get rid of the symptoms? I mean, one, how long would you get rid of the symptoms for?

And two, how does that impact the problem?

Because the problem is not your symptoms. The symptoms are an expression of the problem.

Like when you have pain in your leg, that’s not the problem. The problem might be you have a broken leg or blood clot or whatever, right?

What we really want to do is we want to resolve the root dysfunction.

[13:56] Liz: Yes. you were talking about Tylenol. I think there is now more awareness around not always just popping Tylenol when you have a fever because you want your body doing what it’s meant to do And it sounds like what you’re also alluding to is that our nervous system needs to be. dynamic, because sometimes we want it to rev it up, and sometimes we want it to stop fighting. So, I know that ANS Rewire talks about how we want the nervous system to be dynamic, but, How do you actually go and do that?

[14:36] Dan: So, me unpack a little bit more about this, this question if you’ll see around this particular intervention. The fever is not the problem. The fever is the solution. And the problem is that you have an infection. Yes? Okay, so, let’s have a look at this here. First of all, there’s this widely held thought that in this group of illness that there’s an overactive sympathetic nervous system.

Many academics and specialist researchers in the field will even reference each other on this determination. I think this is simplistic. I don’t feel this is fully accurate, this determination. Because this determination is made by, they look at heart rate variability and come to this conclusion.

But actually, heart rate variability does not measure sympathetic nervous system activation, it actually measures parasympathetic nervous system activation.

And so people tend to think parasympathetic or sympathetic. They think it’s a see-saw. But actually you can have lot of both or very little of either.

Or very little of one and not enough of the other. So it looks like it’s dominant. It’s not dominant. It’s low, Okay? It’s like having, two bank accounts, yeah? One’s got $7 and the other one’s got $3. Wow! $7! That bank account is huge! It’s like over double the other one! But, you know, they both only got a few dollars in them, right?

So, this is the first thing. The next thing is, when we’re looking at either neurology, immunology, all of these fields, they are extremely complex. And whilst medical science understands a lot, we’ve got to understand there’s a lot we don’t understand. so when you’re looking at, at these issues, the autonomic nervous system is called autonomic nervous system.

Autonomic meaning it functions on itself. And this complex responsive system is just that, it is responsive. So the whole idea of the autonomic nervous system is that the brain activates the body to respond to the environment. whatever that is. It’s cold, it’s hot, it’s time to sleep, it’s time to run, it’s time to make love, whatever it is, right?

All of these autonomic responses, right, are required. Now, what we’re doing in this way of thinking is to say, well, it’s too much sympathetic, I get rid of the symptoms if I blunt that… but then if you blunt it, how can you have a sympathetic response? Isn’t that getting rid of your ability to produce a sympathetic response?

Now, you could say, yeah, that makes sense because I’m reducing the symptoms, but I just don’t think this is a very logical way of approaching health, and how does this impact the autonomic nervous system’s ability to regulate? I mean, it’s already not regulating correctly.

Now you’re reducing its ability to affect a sympathetic nervous response on the body. It’s not gonna make it better or worse.

It’s not going to teach it how to regulate correctly or not.

[17:43] Liz: Yes. don’t think some of these modalities are going to teach your nervous system to regulate itself.

You have to put in the work. So, The block. I guess it helps some people temporarily, but as you also know, there’s also the placebo effect because it sounded like the people doing this study, it was a very nurturing environment. They were very validated.

They were experts proponents of this. So I wonder how much of that also played a role into things and just being given hope for these people.

[18:20] Dan: Well, it’s hard to say, isn’t it? I mean, it’s, it’s a reasonable point you make, especially about the validation, because, you know, so many of us, when we get this illness, are sort of, I mean, I spoke with the doctor last night who’s being gas lit herself. And sort of like told, just take some antidepressants, pull yourself together. And she started talking about mind-body. 

I’m like, “Listen, you have a neurological disease. You are ill, can’t mind over matter this.”

So absolutely getting validated, would obviously make people feel more at ease, less stressed out.

I mean, they could have obviously tried to do a placebo study that would have answered that question.

But I personally, I don’t really have a doubt about the fact that people were helped, because a significant amount of people have severe sympathetic nervous system activation, or least they have it at times.

So, this is the problem again, because it’s not like we can measure it and say, “Oh, this is the problem, this is broken.” It changes.

Like, it’s different on a Monday than it is on a Wednesday. It’s different at, 9 p. m. than it is at, 1 p. m. And this is why it’s so confusing.

[19:25] Liz: Yeah. That makes me think of people also prescribe cortisol.

For some people with ME/CFS, their cortisol is really low, actually, and I was surprised when I found out that my cortisol was low as well when I finally got the functional medicine tests, because I had felt like I was so wired all the time.

Anyway, I didn’t want to take cortisol, because I didn’t want to be more wired, but yeah.

[19:56] Dan: So this is what happens very commonly, right? And the cortisol is low and it makes you feel bad. And many doctors prescribe, hopefully, very conservative amounts reduce them very slowly when they come off them.

And people can feel better from this. But again, is the low cortisol the problem or the solution? And what I mean is, it sure feels like a problem because you don’t feel well. The low cortisol is so many of our symptoms. You know, when you get up in the morning, you can’t face eating anything, you don’t get going till like 11:30 or 1:30, right? This is why, because your cortisol is low. 

And we think, “Okay, if my cortisol was higher, I’d feel better.” Yes, this is true. 

But the low cortisol is the solution, not the problem. The problem is the dysregulation. 

Because when your cortisol is 20 times what it should be last night at 9pm, when you’re supposed to be going to sleep, if you now have normal cortisol on top of it every day, you’re going to have so much cortisol in your body all the time that this creates a real problem.

So if you’re going to have this crazy overreaction last night at 9pm, how about we just, you know, dampen some of this down to reduce the amount of cortisol in your body over a 7 day period, let’s say.

And again, it’s the way we think about these things is, I think, really, really important.

We don’t give the body enough credit.

[21:20] Liz: Yeah, I know. And, yeah, I do know people who did take the cortisol but I didn’t want to mess with that. And it certainly felt for me that my body was in the upside down, especially with sleep.

At night I couldn’t go to bed. I was usually awake from 3 to 6 a.m., sometimes 3 to 8 a.m., and then I couldn’t get out of bed until 10, and it was so hard to get out of bed, and I thought I was doing everything right. But I really had to perfect my sleep hygiene and I’m not just talking about blackout blinds.

I literally had to do everything and in your program, sleep hygiene is one of the components among many, but yeah, that was so essential to my recovery. I mean, there were multiple components.

[22:11] Dan: Well, that’s how it is, multiple components.

The sleep hygiene won’t fix your sleep, because you’re not sleeping because there’s lack of sleep hygiene.

You’re not sleeping because your brain is whack-a-doodle.

It’s the autonomic nervous system is all over the show.

Dan: And so, but [the sleep hygiene] helps. It’s like, you know, they talk about death by a thousand cuts. Well, we’re talking about healing, you know. I don’t know, I can’t think of the right analogy.

[22:35] Liz:  I’m just thinking of that analogy. It’s like, there’s a downward spiral that got us in. There can be your upward (spiral) staircase, kind of. And you can build on each other. So you’re doing the brain retraining. 

And when I really started committing to brain retraining, that was when my sleep, I finally was able to go to sleep. 

And stay asleep. And then everything started to build on one another. 

And I think building your health rather than just trying to go down the rabbit holes is actually such a good long term solution.

[23:11] Dan: I want people to recognize that the way we do this is based on sound reasoning, logic and science.

It’s not like, I don’t want what you just said… it’s really spot on. I don’t want people to interpret that as being sort of like, I don’t know, airy fairy, you see, because we often think, “Oh yeah, I’ve got to build my health,” and “oh, from many angles,” and many of us will go, “Hang on a sec, there’s something wrong.”

“I want to fix whatever’s the problem.” And I appreciate that way of thinking, but if you actually understand how the problem works, then your comment is 100 percent on track, and based on that, deeply in science, logic and reasoning, not, “Oh, I’ll just need to build it.” It’s not airy fairy. Do you know what I mean?

[23:59] Liz:  Yeah. And I think there’s so much research that you list in your program. So Dan’s program is for people who are more science-minded. 

I would say there are some programs where they only touch lightly on the science. You really explain it. But also just looking at nature. I just remember as I was really healing, looking at, like, how do plants thrive?

That is also science. Observing, as well, and observing all of us who healed. So there is that core research that is there that you site. But just also the recovery stories and just observing what actually makes for health and healing and thriving. 

And it’s like, we’re not just giving plants miracle grow, we’re creating the right sunlight, the right amount of water.

[24:51] Dan: You have to nurture them. You can’t force them to do something.

[24:57] Liz: yeah, so we talked about the stellate ganglion block. We talked about, cortisol. I also want to talk about vagus nerve simulators.

So vagus nerve simulators, they stimulate the vagus nerve. which is a key part of our parasympathetic nervous system. So people use these vagus nerve stimulators on themselves to improve their heart rate variability and activate their parasympathetic nervous system.

However, I have seen people who are like, “I was like zapping myself, and it made me worse,” for some people who are very severe.

But, I know other people who found them helpful, but I did not buy a gadget myself and I still healed. So what is your thought on them, Dan?

[25:47] Dan: So first of all, don’t want people to think I’m anti-gadget per se.

In fact, some of the researchers that I’m associated with who do some of the most magnificent research, actually use a combination of brain training with machines, if you like, that stimulate the Autonomic Nervous System as a way to train.

However, I guess we are in the same field of thinking of fixing something.

And people go, “Oh, there’s not enough parasympathetic, so now I’m going to stimulate the parasympathetic.”

But why are you not… you need this to happen automatically. Okay, hopefully.

Are you going to walk around now and go, “Ooh, I think I need a little bit more.” “Tch, tch, tch.” “I’m just getting to sleep.” “I just ate something.” “Tch, tch, tch.”

This, this is not a solution, right? And also it’s a little bit more complicated. You see,

The vagus nerve is actually 80 percent afferent and only 20 percent efferent.

And with my German accent, it’s I’ve probably said the same word twice, but what that means is that about 80 percent of the fibers actually carry information to the brain.

So when you’re stimulating the vagus nerve, I mean, people think, oh, the vagus nerve, that’s the parasympathetic nervous system in my body.

Hang on, 80 percent of the vagus nerve goes the other way. It’s information collection to the brain.

Okay. So, I hope that’s interesting. That should raise a big question mark about this approach in the first place.

Because we’re actually talking about an input system rather than an output system.

The next thing is, you know, these, these sensing fibres, they terminate in the brainstem. Specifically in a nucleus called the Nucleus Tractus Solitarius, or normally they call it the NTS. And this is a very, uh, interesting part of the brain, and in the autonomic nervous system.

And I see this in some really cutting edge research where there’s a lot of focus on that with different kind of brain training and physical devices. Because the NTS connects to a whole bunch of structures, including the locus coeruleus, which is something I’ve spoken about really immediately after when I published my book, one of my first videos, which really helps us understand why certain people are predisposed to this condition.

It also connects to other structures in the brain, like the amygdala, the hypothalamus, the dorsal rafae, and, and others. But all of these key structures here have to do with autonomic function.

And the thing to recognize, okay, so it’s more of an input thing, but this vagus nerve stimulation isn’t new.

It’s been around now for over 100 years. Did you realize that?

Liz: No.

Dan: Yeah. And mainly it has been around via massage and compression of the carotid artery. And the reason this has been done is to suppress seizures. When people get fits. Don’t start pressing your carotid artery at home folks, just yet.

And basically, the idea of using, instead of like massage, to use electrical stimulation has also been around a long time, about 80, 90 years now. So this is not like something that just came out last year. And again, one of the main reasons this has been done is for people, who experienced seizures.

But if you think about it, remembering that 80 percent of this nerve is actually a sensing function, And it actually ennervates structures like the gastrointestinal attack, the heart, the throat. Which is why you can understand now why breathing can impact the ANS, right? 

‘Cause the vagus nerve, which is corrected to your lungs, and then you change the way you’ve affect your lungs via the vagus nerves, goes to the NTS and the brain structures there, it starts to affect the ANS. Yes, this is why you talk about people doing breathing.

Again, not new age. It’s based in science. So we can see then if the Vagus Nerve can alleviate these symptoms, okay, that makes sense, but hopefully you can start to see how it can also cause these symptoms.

Because if I’m now stimulating this, then I’m sending feedback to the brain about what’s happening with my guts, what’s happening with my lungs, and if that feedback is really strong, what does the brain have to do?

It’s going to respond to that.

[30:06] Liz: What are you exactly saying there? Are you saying like, if you rely on the stimulator, it’s making yourself more scared or?

[30:12] Dan: No, it’s not so much that, but what I’m saying is, if you’re going to stimulate something like the Vagus Nerve, you are giving your brain more feedback about let’s say your lungs, right?

Liz: Ooh.

Dan: And you guts. In other words, it’s an input. If you have like a computer, right, you have an input and then it decides, okay, based on my input, I’m now going to do this, right?

And your brain has this input via the Vagus Nerve to your organs going, “Oh, what’s going on in my body? Yep. Okay.”

“Now I have to do this to my body, okay.” Cause it’s a feedback mechanism.

Now, suddenly I overload my feedback. I sent really strong signals. Then, of course, my brain might change how it is using my organs. 

What does it tell it to do with my organs, and this is how someone, like you said, even though some people have good results, some people might have bad results, right?

Dan: And the reason is, you know, you might get somebody experiencing problems with their breathing, like dyspnea. Or with their gut, because you’ve told the brain one thing’s happening, when actually something else is happening in your body. 

And now you’re creating confusion, and it’s changing how these organs are working based on false information.

[31:34] Liz: And I know breathwork and deep breathing is a part of ANS Rewire, and is in some of your meditations. 

For me, I also, had a yoga teacher teach me how to breathe normally again, because I was breathing so shallow, and when I was working with her, at first it felt like some parts of my lungs were like ripping just breathing fully into my body. 

But it was so key just learning to do that because I was not aware how shallow my breathing was. So yeah.

[32:08] Dan: Yeah. 

And again, it [dyspnea / shortness of breath] is a really chief signal of autonomic nervousness dysfunction.

Obviously during the pandemic, it got a little bit confused because, many folk, especially early on pre -Omicron, got problems, you know with very severe lung damage. And then, this was the chief problem, right? One of the chief problems. And then people will come and present with “unable to breathe,” but many people had nothing wrong with their lungs. 

They do the X-ray and go, there’s nothing wrong. It’s all confusing. But actually this is dyspnea, and dyspnea is something very common with CFS or post-viral fatigue syndrome and fibromyalgia and POTS, but usually it’s dismissed as being a psychological problem, like psychosomatic or this kind of thing.

[32:49] Liz: So you’re saying it’s neither organ damage nor psychological, it’s the autonomic nervous system causing the shortness of breath.

[32:57] Dan: I’m not saying this is the case with Covid. What I’m saying is many people experience dyspnea, because there’s this other pathogenesis for breathing problems.

It gets so confused, you know, poor doctors. Like you must be thinking, “Hang on a sec, you’re coming me, and telling me you can’t breathe, and I can’t see anything wrong with your lungs. Are you just making it up because you heard other people have this problem?” 

But that is not the case at all. This is a common problem that’s been around always. But it’s something that’s not very well understood because it’s difficult to measure. It’s an experience that you feel, you can’t measure it, and you can’t see it in an X-ray. And so, dyspnea is a very frustrating and it’s a very disconcerting symptom.

[33:39] Liz: 

Yeah, so people can have like air hunger, shortness of breath, and I kind of have that. Yes. And it can be scary. And I had it a lot at night. It was very interesting because as I was going to sleep, I would get it. It’s like my body, when it would be lulled to sleep, it would just like, I had this panic, I guess. Because when my body started to relax, I guess, looking back, that’s when I would get it.

But the breathwork and the brain retraining, that went away and recognizing I’m not dying, it’s not my lungs, I’m not going to run out of oxygen, recognizing in my case that it was the autonomic nervous system dysfunction, and how can I rebuild that? Mm, yeah.

Dan: Absolutely.

Liz: Yeah, so I wanna talk about Low Dose Naltrexone, which is also called LDN, and that’s one that’s been pretty popular, for the past, I would say six, seven years in just the ME/CFS forums.

And I believe what that one does, is you take it at night, and it blocks your opioid receptors, and then it triggers the body to produce serotonin and dopamine during the day,.So I want to know your thoughts on LDN.

[35:03] Dan: Okay. So obviously I’m not a medical doctor, and as you said in the beginning of this interview, nothing is to be taken as medical advice.

This is just information and thoughts. And as a result, I’m not an expert on pharmacology, I’m not an expert on drugs. So I’ll share some thoughts and my understanding.

First of all, I guess the first thing I would say is, I’ll say two things. One, again, we’re sort of in the same realm of trying to fix symptoms, when we actually want autonomic function to return.

So this is all the same. It’s just a wrong approach in general.

Having said that though, actually perhaps LDN and perhaps a number of other medications, in my view, actually have great potential, especially when used in the correct context and as part of a multilateral approach.

But this is not what people want because in science. If you want to measure something, you tend to have to do it in isolation. Like with the vagus nerve stimulator, right, I’ve had some universities come to me. They want to use some of my questionnaires, around CFS. They were doing vagus nerve stimulation for CFS and all of this.

I tried to convince them that we would do a study that is based on using vagus nerve [stimulator] on its own and vagus nerve [stimulator] with something like the ANS Rewire program, so that we have a multilateral program, and then you can compare, right? And then you can do ANS Rewire without the Vagus [nerve stimulator] as well. You see? This is a much better way of doing it.

But they don’t like to do that.

[36:27] Liz: I want to just quickly talk about that because yes, oh my gosh, this is a huge thing I feel passionately about! Why are we doing all these drug studies in isolation? And then we’re not even following up and asking these people who are taking these drugs,

“What are you eating? Are you watching TV at midnight?” We’re not doing any of that. And we’re losing all this information. 

And I just think all of that stuff that happens between the time you take the pill and the rest of the day matters. 

And that’s why you often get completely conflicting studies for the same drug often.

[37:04] Dan: The issue is that it’s from a lack of understanding of what is the problem and how it works dynamically, which is why the illness is always, you know, this enigma, right? Because people, it’s a heterogeneous patient community. Everyone’s different and they go, well, “How is that possible if it’s the same illness?”

Well, it’s very possible, it makes sense, if you understand how it works. But if you just go, “Ooh, there’s not enough vagus nerve expression here, we’re going to increase that,” and does that work? It’s a really rudimentary basic way of thinking, and has limited value.

So, by getting back to your question about LDN, I guess I just want to put it into context, that there is this and a number of other drugs that have really great potential, that have really great potential, because they affect the nervous system. 

Now, I’m not an expert in Naltrexone or drugs, but my understanding is that, yes, it does affect your opioid receptors when you use Naltrexone. However, you are not using Naltrexone when you use LDN. What you’re using is low dose Naltrexone.

And one of the key things about any medication, in medicine is the dosage is key. This was something that was always, at least before the pandemic. We must always administer knowing what is the dosage of any kind of medical intervention. During the pandemic that seemed to change suddenly, which I’m not sure why that would be.

But, nonetheless, this is normally something that is key, is how much medicine do I give? Now, Low dose naltrexone really, I think, works different. It doesn’t necessarily start to have this pathway that you described with the opioid receptors.

Instead, what LDN does, it it starts to blunt the nociception of the nervous system. So, nociception this is the sensing of the nervous system, of noxious (harmful) stimuli.

It could be, a number of threats to your body. It can be, um, physical pressure, it can be chemical, all of this type of thing. And what low dose naltrexone does is it blunts that sensing, of threats.

Now, if you think about what I’m saying causes this illness, which is autonomic nervous system dysfunction, which has to do with, how the body responds to stimulus, and we recognize that it overreacts to stimulus, like your blood sugar goes a little bit low, it’s not a problem for anybody, not even a diabetic, and yet, boom, it reacts very and gives you all these symptoms.

Or, you go do some exercise, or you have an argument, or the temperature changes, or goodness, even the pressure changes, the atmospheric pressure.

[39:48] Liz: I mean, all of those things were triggers.

[39:49] Dan: These are all triggers. It sounds almost like you’re talking about someone who’s a hypochondriac, right? You’d say this is not possible, but this is all through the nociception.

And so if you now blunt, that nociception, then your nervous system is not going to be as triggered because it’s not getting that information through the nervous system going, there’s a problem, some kind of a problem.

And, and that’s how I believe the LDN actually works for this group of illnesses.

[40:16] Liz: This is so interesting. Thank you for explaining that. And, as you said, consult trusted medical doctors, but it’s actually really feels validating for what we did to heal through the brain retraining aspect, because a key part of the brain retraining is, teaching our brains to have an appropriate response to those stressors and doing it, ourselves, I guess.

[40:45] Dan: Well absolutely. Look. And there can be other more sophisticated methods of doing this. you know, In ANS Rewire, we talk about physiological ways of training the brain that are not psychological. We talk about, like the breath, like the way we hold our body, and all of these types of things, but we also can use all kinds of other way stimulating the nervous system, even through blood pressure.

But again, these don’t work equally for some folk, right? So one way is to actually go via the baroreceptors in the neck, which feeds directly into the autonomic nervous system.

But some people can’t, fathom enough blood pressure to be able to engage in this type of training, especially on the CFS spectrum rather than the fibromyalgia spectrum of the illness. 

[41:27] Liz: Yeah. And I know, and you healed from severe POTS, ME, fibro, and… environmental sensitivities?

[41:38] Dan: [Dan nods yes to all except environmental sensitivities.]

I started to get some weird smell experiences, but I didn’t actually have MCS [multiple chemical sensitivities].

[41:43] Liz: But you had all the other ones. [Dan nods.]

Liz: So you had earlier talked about the pathogenesis of these conditions and linking it to ANS dysfunction. However, there are people saying that, “Well, maybe these are separate diseases.” The pathogenesis has to deal with the bug, the virus, and focused on killing the virus, killing the viral reservoirs, and they’re saying that those are what cause it.

So we might have all different stuff and just have to figure out how to kill that. have you come against that? People are saying, “No, this isn’t going to work. I have to just kill the bug.”

[42:27] Dan: A lot of the time people say this and where’s the evidence? The second thing is, even if there’s evidence that you have a virus, who’s to say that that’s a problem?

[42:36] Liz: Well, I did see for Long Covid. I read that viral RNA induced interferons can reduce serotonin. And this can impair cognition via reduced vagal signaling, and that was a paper done at Penn, just I think, published last week [our interview was conducted in late October 2023]. And, now they’re going to be testing Prozac in their next study, to increase the serotonin.

So, they are showing that the virus…

[43:07] Dan: We did this 20 years ago. Where we gave people some very low dose, again, a low dose medication can be completely different than how it works in a high dose medication. And the use of low dose, antidepressants for CFS is not new.

Low dose antidepressants have nothing to do with depression. Nothing to do with depression. They’re never insinuated when they gave people low dose antidepressants for CFS, that they’re sick because they’re depressed. So, I’m not saying it’s wrong, I’m just saying it’s not new.

And then treating viruses, yeah, if, you can reduce the viral load, that can help. 

Of course, the ideal way would be the immune system to simply overcome this on itself.

[43:50] Liz: Yes, and it’s how can we get the immune system to overcome this on itself?

[43:55] Dan: And why is the immune system not overcoming it? 

What I’m saying, it’s autonomic nervous system dysfunction because obviously the immune system is 100 percent regulated by the autonomic nervous system.

[44:04] Liz: And I know that there are genetic studies as well, but I also know that there’s epigenetics and that we can switch on and off genes.

And one way we can do that through healthy diet, through nervous system regulation. and of course a comprehensive approach, I think, can change how the genes express themselves, that might be related to some of these things.

[44:28] Dan: You know, Liz, I think it’s really easy to get lost in the detail. If it looks like an elephant, and it stomps like an elephant, and it toots like an elephant, I mean, there could be some microbes in the elephant creating the problem in my house, but it’s probably the elephant.

[44:40] Liz: I think we are too lost in the details. I mean, your program does go into some of the details, Dan. You do talk about the mitochondria, the things, you explain how it all works. So you do go into the details, and you take people through how it all points to autonomic nervous system dysregulation, and then showing them practical ways to overcome that.

And, like what you said, yeah, the problem is very obvious. The solution is a lot more obvious than I initially would have thought, which was finding the perfect herb to kill this virus or bacteria I might have. And it was, my sleep hygiene, breathing, brain retraining, and the other stuff.

[45:26] Dan: Look, and sometimes people can really benefit from other additional medical interventions. 

The program encourages people to work with a range of healthcare practitioners.

[45:36] Liz: Yours is one of them that really does. Some of them are like, “Don’t trust those guys,” but you’re like, actually, “Yes, if you investigate, if you’re living in a water damaged home,” you’re very open to investigating but you do say like, “Don’t put all your eggs in one basket and spend all your money on those places.”

[45:55] Dan: If you are exposed to something like mold, that’s going to keep triggering your autonomic nervous system. 

How can you really do the brain training? And if you know, the whole thing about viral infections gets a little bit more complicated. I’m not sure how safe and efficous some of these antivirals are.

But there are perhaps some cases where It’s appropriate and may help people.

And there’s a whole range of physical issues and even psychological issues. If somebody’s got trauma and they’ve got a maladaptive stress response, that’s a problem. Or if they have an anxiety disorder, that’s a problem. Or if they have depression, that’s a problem. Or if they have, overrun with gap parasites, that’s a problem. 

I mean, the list is endless. It doesn’t mean we have to fix everything. Because the body can resolve, maybe not the psychological stuff so much, but like the physical stuff, it can resolve a lot of these things.

But sometimes getting some help, just to take the pressure off the autonomic nervous system until it learns to regulate. 

Once it starts to learn to regulate, your immune system starts to function, it can get rid of these things. 

I’ll give you a classic example. I’ve seen people with Lyme, okay? Is Lyme real? Of course it’s real. It’s Lyme a problem? Well, the people who have Lyme disease, and have chronic Lyme disease, will tell you it’s a problem, right? Because they’re saying they’re sick because of the Lyme disease. But then the doctors will go, what are you talking about? They give them antibiotics for like a few weeks, eight weeks later they should be good.

Which I know is the case for many people. But people who have CFS, that’s not the case. So they think they have chronic Lyme. So then they can have these infusions and treatments and more antibiotics than a whole village. 

[47:36] Liz: I was at one of these clinics and I saw someone who had Lyme.

I didn’t get that diagnosis, thankfully. And they had the silver mainline into their heart. She went five days a week and she got silver therapy mainline into the heart.

[47:50] Dan: And then people do all of that and it’s still, they’re still sick!

[47:53] Liz: Yeah, I think there are a few people who it does work for. Yes. But, know people who that route, made them worse.

[48:03] Dan: Maybe some folk find it beneficial, but I have never seen someone get fully cured from CFS or chronic Lyme, by taking these super heavy antibiotics forever. 

And maybe, I’m not a doctor and I don’t give that treatment, but I just haven’t seen it. 

And when I have seen it work, it wasn’t done in isolation. 

Liz: Exactly. 

Dan: Which is exactly what I’m saying you should do, is you should treat where you can in combination with everything else.

Because whatever intervention you’re going to have, you’re still going to need your own immune system to do some of the work. And if your own immune system is not working at all, this is a really steep hill. 

[48:39] Liz: And it’s going to be a problem next time you get a bug of some sort.

[48:44] Dan: And here’s the thing, just to finish this off, the bug is not necessarily the problem, like, I’ve seen people who were tested, Lyme, Lyme, Lyme, CFS, all the symptoms from Lyme, then they did some brain training, and other diet strategies and what have you, and then they become well, and then get tested, And guess what?

They still have Lyme. Yeah. So, I’m just saying, beware of rabbit holes.

One thing always to keep in mind, Liz, is first, do no harm.

[49:11] Liz: Exactly. Alright, this was a really interesting chat, and thank you for providing your expertise and opinions, and I just really appreciate Dan, your comprehensive and your practical views on things, having worked in this field, healing yourself from the darkest depths of illness to having a program for many years now, helping others.

Yeah. So is there any final words you have to people listening to people evaluating their options here on their CFS, Long Covid, ME, POTS, chronic Lyme related journey?

[49:54] Dan: I hope one of the best things people get out of our discussion today. It’s the way I was looking at things where I was saying, you know, the body does what it does. We can’t force it or fix it like that. It’s autonomic, right? And like I said, it’s the low cortisol. It’s the fever.

Are they problems? No, there are solutions, just not very helpful ones, uncomfortable ones. One stuff we don’t like, yes.

But we need to fix problems, not symptoms. That’s my chief message.

And there are many ways to recover.

And, do not get caught up in people’s camps where they say, “Oh, you know, the biohackers just do this,” or “the Lyme people, you have to do this.”

The brain training people are just, “it’s all, you have to do this with the brain.”

You’ve got to realize, these things are not separate. It’s all connected. And it is that foundation of understanding that we don’t look at this problem in isolation. Yes. But when we do use physical interventions, which of course I talk about a lot in the program and elsewhere, that we do this, responsibly.

So first do no harm. Yes.

Because even something that there’s no harm like a test or an intervention that is no harm for your average Joe blow is not the same for someone with CFS.

So you should ask your doctor or whoever is giving you the treatment how much experience do you have with people with CFS orwith fibromyalgia or POTS. And what is the statistics of people in terms of getting better, the same or worse? And when they get worse, how much worse? And if they go shrug the shoulders, then you’ve got to think twice.

[51:45] Liz: And I also would say that some people might inflate their numbers or be like, yes, you’ll get better if you stay at my clinic for two more years doing these treatments.

So take it with a grain of salt, too, and trust your gut. because the right practitioner should really also factor the other things like things your program teaches. rather than selling you on just one specific protocol that they provide.

[52:14] Dan: Many do.

Really they do Liz. my program is being used now in over 50 countries and we’ve got doctors from all over the world referring their patients.

So doctors recognize that this is a complex problem, and it’s multilateral.

They understand the value of brain training, lifestyle medicine in combination, and often the way they’ve done this is because they have wonderful protocols, they have wonderful treatments.

There are many doctors who are very caring, very motivated, very smart, who work out very good treatment protocols. But they’re frustrated because they work with some people pretty good, and then other people they don’t work at all, and other people they get worse, and it makes no sense.

And what I’ve found is many of them have found me because they found some of their patients suddenly responded wonderfully to their treatments. They go, why is this working so well? And then they found out they’re in a program. So it’s not because of my program. It’s not because of their treatment. It’s the combination, often gives the really good results, you know.

[53:16] Liz: Yes, and that’s a wonderful way to end. It’s the combination and I really appreciate your comprehensive understanding of health and unlike some other programs are like, it’s just my little way and that’s the solution. You really understand the synchronicity of these things, are important, or can be really beneficial for our health.

Yeah. Anyway, this was so great, Dan. I know it’s early over there, and Australia. It’s late over here in California, but just have a good rest of your day. And thank you for what you do and for being the first person, to really give me hope that recovery was possible.

[54:01] Dan: You’re welcome, Liz. And yeah, thanks for giving me the opportunity.

I’ve interviewed over 30 people who have healed from ME/CFS and related conditions on my YouTube channel. Here are interviews of people who specifically mentioned they did Dan Neuffer’s ANS Rewire program. 

1. Caitlin’s recovery story from moderate/severe (sofa-bound) ME/CFS and POTS:

It looks like I did not make a written transcript for Caitlin’s story. That said, I put Timestamps in the YouTube video description and made closed captions, so you can watch the parts you’re interested in at your own pace.

2. Katie’s recovery story from mild CFS and moderate POTS:

Here is the written transcript of Katie’s recovery story.

3. Suzi’s recovery story from very severe ME/CFS:

Here is the written transcript of Suzi’s inspiring recovery story.

Caitlin and Katie are not health coaches and have other jobs, though Suzi has worked to help others since recovering. If you watch or read their stories, you can see where ANS Rewire fit into their recovery.

As a friendly reminder, not every YouTube guest is open to providing advice or providing free advice. For people who have openly stated they are open to provide help or answer questions, please first read their story and explore the resources they’ve shared or mentioned before reaching out. No one in particular has asked me to write this, but I just want to proactively ensure people’s time is respected. 🙂

If you’re looking for more input on choosing a lifestyle or nervous system regulation program like ANS Rewire to support Long Covid, ME/CFS, POTS, Chronic Lyme, and/or fibromyalgia recovery, Lindsay Vine and I put together an independent programs guide analyzing 25 different programs. Programs analyzed include ANS Rewire, DNRS, CFS Recovery Jumpstart, Primal Trust, and more. We factored opinions from many people who did these programs, describe the content within these programs, and state who each program is for and not for. Our guide is not medical advice, and is not meant to replace medical treatment. Please consult trusted health professionals as needed.

If you’d like practical and uplifting health recovery information, please sign up for our newsletter below. This blog is not medical advice nor meant to contradict what you have discovered yourself to be true. 

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