Spoonie Radio Ep 12: Dan Neuffer
In ep 12, Dan describes his ME/CFS journey, how to reset HPA axis dysfunction, the wonders of neuroplasticity, and more...
Full Text Transcript:
Dr. Craig: Welcome to another episode of Spoonie Radio. I'm your host Dr. Courtney Craig. Today my guest is Dan Neuffer. Dan is a former physicist and now he is also a recovered patient, from both ME/CFS and fibromyalgia. Based on several years of research Dan pieced together a hypothesis for the pathogenesis of these illnesses to answer all of his unanswered questions.
As a result of his research on recovery, he wrote and published the book – 'CFS Unravelled: One Man's Search for the Cause of Fibromyalgia and Chronic Fatigue Syndrome and the Discovery Essential for you to Recover'. His book shares an explanation and demystifies how people get ill in so many different ways and how recovery is possible. Welcome to the show Dan!
Dan: Hi Courtney, great to connect with you.
Dr. Craig: Yeah, thanks for being here. So just to start out I would kind of like to get a synopsis, a little brief summary of about your CFS story, how long ago that you got sick and what was your experience with the illness?
Dan: I first got sick back in 2003. It's funny, it's only years later that I made the connection of some of my triggers of the illness because at the time I didn't really realize. What actually happened for me was I was walking--I used to go out for walks at lunchtime with my colleagues and some of my colleagues were like 20-30 years older than me who were in their 50s and early 60s. And we would go for a walk and one day I couldn't keep up. It was such a bizarre experience because I could not understand why I wouldn't be able to keep up walking. I mean I've never had a problem in my life. But like a typical man, I kind of try to sort of brush it under the carpet and just ignore it. It was somewhat embarrassing at the time because they are look at me going like, “Well what are you doing?" Why are you walking 10 steps behind us?" And they were only having a stroll, you know.
But then it happened again a couple of days later. I was with my wife, and again it was a similar experience, but she couldn't quite understand if I was making a joke or what because why would I not be able to walk? We were pushing a pram and I literally felt like I could not take another step. That was really my first experience. From then on I actually started to get like a flu, I suppose is the best way to describe it. I had a flu, and I had actually just to mention, I had an immunization two weeks earlier for the chickenpox because I had a baby at home and I wasn't sure if I had been vaccinated or not. I never made the connection until years later that that may have been part of the trigger.
But anyway, I looked and I started to get the flu like symptoms and things and I just felt really, really exhausted more so than I ever had. It didn't quite feel like the flu and I went to the doctor and he looked at my throat and he said, “Oh my God, you have a terrible sore throat. You have such a bad throat infection. That's what making you sick." So he looked at it and gave me some antibiotics; I went through the treatments and they didn't really help and that's really how my journey started.
Then from then on it's a bit of saga really, I mean if I were to summarize it, it basically was like a flu that never went away. I was very, very ill and I had pain. I was exhausted and that sort of came and went over a period of the next six months. I never seemed to get over it and then what happened after that is not only did my symptoms get worse in terms of the fatigue but I also started to get a whole range of other symptoms.
I got to a point where it was kind of embarrassing to go back to the doctor. I did go to one doctor after another, like most people do, and I tried to have tests and this test and that test and different ideas and certainly weeks turned into months and months turned into years. I would get these in bouts so it would come on really strongly like a flare-up and then I sort of felt better again.
So I found my general level of energy was just terrible. I just got a lot of really weird symptoms. Like I couldn't take lights or sound…
Dr. Craig: Yeah, I am sure a lot of listeners can relate to a lot of those symptoms. I hear a lot of my patients talk about similar symptoms and I have had them too. Now you are talking to us today from Australia right?
Dan: Yes, that's right.
Dr. Craig: So how was the experience there are being shuffled from physician to physician? I mean most of our listeners here on the show are US, is the opinion of ME/CFS and the diagnosis process very different in your experience there?
Dan: Well, this was obviously now 12 years ago. I don't think there was much awareness about ME/CFS back then. Because I had gone to so many doctors and I kept getting new symptoms, the muscle twitching and then I had the dizziness, had chest pains, I had palpitations and I had all the symptoms, and all the classical CFS symptoms. I had gone to… I honestly don't remember how many doctors probably it was eight, nine, 10 doctors, something like that and it was only at the very end that I actually got diagnosed because until then I was just used to getting almost an eternal roll of the eyes from the doctors because they just go, “Well I don't know what it is."
I had some really caring doctors that really tried very hard and they did a lot of testing and they did not find much except. So yeah, I think it was really a bit of a problem and not getting diagnosed until so late and then by the time I was I kind of looked it up and it didn't exactly boost me, because what I read was that everyone has it and doesn't get well. I didn’t come across anyone on the Internet that had actually recovered.
Dr. Craig: Right, right. It's a dismal picture and that sounds very similar to the doctor patient-experience here in the US too. I mean eye rolls and mistreatment and misdiagnosis and many, many visits. So let's talk now about when you kind of decided to take matters into your own hands, right, and use… Really dive into the research. So what brought you to the place where you decided to not just accept the illness, but to uncover it for yourself and kind of put the pieces together?
Dan: It is a bit of a journey really, Courtney. I looked for all kinds of solutions. I tried all the alternative healthcare stuff as well. I mean I tried treatments that I would be embarrassed to tell you about over the years in my desperation. I had a scientific background and everything, but I was just looking for anything because I was so desperate and not knowing what was going on actually thought I had some sort of virus that they couldn't identify. But then I read all these things and then when I of course learned that I had CFS, I then read all the CFS books that I could find. I tried all these treatments and they it was sort of like I’ll fixed everything: your hormones’ out, I fixed the hormones and your energy and take these supplements and this stuff and for me it was just like well why is that all happening in the first place? I mean why is everything wrong? It just didn't kind of make sense to me but I tried it because again desperate. And then to be honest, I actually give up because I tried, I put in inverted commas everything because I feel everything I knew, everything I could find and I read all these books and I have researched by reading the column, sort of CFS books over the Internet and then I just gave up.
Then what happened is I thought I would just kind of live with the illness as best as I could. That wasn't that good but you do the best you can. Then one Christmas my health took another turn for the worst. I got so ill, I was bedridden. I was so ill I couldn't speak so it went from, “Oh my God, I couldn't stand it any longer" to, “Oh my God, I think I might die." I know this sounds a bit dramatic but I couldn't speak and I was lying in bed and all I could feel was I felt like my heart was laboring with every beat and I couldn't move, getting to the toilet was just like, it was just an ordeal.
We had Christmas and of course I didn't help with anything that Christmas in the family. You always try and fake it for your kids. I was in such a state I couldn't even fake it for my kids … It was just a mess and that was… I remember sitting in my living room looking out through the curtains and that's when I decided I was going to take this into my own hands. I went to my wife and I said, “You know what, forget about all the research and the books and all this stuff, all they told me is I have to treat everything, it doesn't make sense. I have to know what's really causing this.”
I saw this movie called Lorenzo's Oil. It's about where these parents go on this crazy journey to do this research and go down to the nitty-gritty and find some scientists who work something out. I was kind of inspired by that. I said you know what I'm not going to look for what everyone else says, I'm going to look from the ground up; what's going on? What do I know for fact and was something going on in a cellular level or something like this. Part of me didn't believe it because it sounded a bit ridiculous. It was like, “oh, I'm going to climb Mount Everest. It was just a moment of desperation. And unfortunately or fortunately my wife is like, “Yes I think you will." So then I kind of had to go and start doing something about it even though it seems like a ridiculous notion.
Dr. Craig: Yeah, how did you start that? How did you start climbing Mount Everest? Did you look away from the ME/CFS research and looked into maybe other fields or how did you start working from the ground up?
Dan: What I did is I went away from this model of looking at all the things that are wrong, we’re going to treat everything because as I said that didn't make sense. I wanted to know WHY. So what I did is I said, “Okay well what do I know for a fact?" So I looked at the things that we know for sure.
So one of the things we knew and one of the first things I looked at was that magnesium is ridiculously low okay in people with this illness and I go, “Well what is magnesium?" What's that got to do with my body? Because I had no background in medicine. And trying to read stuff was very difficult for me because I had a bit of brain fog too. So this was a crazy journey.
But I started with magnesium because it wasn't useless so I started looking at that. And I said okay, it is low, how could it be low? What is it used for? Where does it leave my body and how does it get in and how is it controlled? I basically looked at all these things of what do we know for sure? And then I left that and I followed that until I said, “Okay, where could the dysfunction be occurring?" Of course magnesium is controlled by the hormones produced by adrenal glands and these are in turn controlled through the autonomic nervous system--HPA axis. Okay okay I said all right, I will look at that.
Then I looked at other symptoms so I looked at everything and I followed it; and eventually no matter what the symptoms seem to be when I dug deeper and deeper it sort of always led me back to the autonomic nervous system. So that was sort of interesting. So I started to form a picture. I started to do a whole bunch of treatments. So these were treating all the physical dysfunctions similar to the treat everything kind of model all right. It was amazing like especially with magnesium when I started to take that I went from not being able to stand up in the morning to just getting out of bed and standing up like an old person and that happened quite quickly and it was quite profound for me.
So I went from that and as I started to get better, I also started to notice that some symptoms, that were there probably all the time but I wasn't aware of. So I started to feel better in my body and my energy had picked up somewhat, relatively speaking okay so I mean I was probably really still fatigued but compared to where I was it was a fantastic improvement. I remember going to brush my children's teeth and as I was brushing their teeth I suddenly realized that I was holding… It was like I was trying to defuse a bomb. I was so stressed out. I was just brushing their teeth and I noticed that I wasn't breathing and I was tensing and I thought, “Well what's going on here?" So it was all these sorts of little a-ha moments where I thought, “Well that's strange, what's going on?" That's how I gradually pieced things together and I started to see how everything led to this primary dysfunction, and then I found all of these secondary dysfunctions. One caused the other.
The gut; I researched the gut and that went back to the autonomic nervous system and everything suddenly was connected and made sense to me. So I had a great deal of confidence that I was on the right track.
Dr. Craig: Right, the puzzle pieces started to come together for sure. That was a lot of my experience too as I learned so much about this illness and one thing that I… It took me years to understand all of these things; I didn't realize that I had that I didn't realize were related to my ME/CFS, like gut issues and autonomic dysfunction issues. I just thought I had fatigue so it is so interesting when it's like a light bulb goes off in your head and everything kind of starts to make sense because this is a systemic illness and there is really no system that's not affected.
Dan: That's so true and everything is wrong. It is not what is right, it's what's actually working. It always puzzles me when people talk about… They could all look at the proof that's really something that you can measure that's wrong and they make it out like there is no proof. I mean really if you do the right tests, everything is wrong, you just need to do the right tests. Just because a blood test to show an infection or doesn't show that your kidneys are not working does not mean that there is not something wrong with you.
Dr. Craig: Yeah, exactly. And if I remember from your book your main focus is really addressing the autonomic dysfunction and you come back again and again to stressors. So if you could talk a little bit about these different types of stressors that you think kind of perpetuate some of the symptoms of this illness.
Dan: Okay, so I do think we need to address the issues in our body. So I do think we need to do what we can to heal our gut, to improve our cellular metabolism, to improve our insulin sensitivity, to treat all of these different things that are wrong in our body and I am not going to name all of them but there's a lot. So when we can do things about it, great. I actually think we should treat it but the point is that if most people find that they would do that they might get better but then it might get worse and that is because what is causing it is not fixed. So we need to fix what is causing all of these secondary problems and all of these symptoms because otherwise you are just chasing your tail. And because that is the autonomic nervous system we need to fix that.
Now you've got to appreciate, when I write the book this all came out of my own head. It was only afterwards that other people had suggested something similar going back all the way to the 70’s, and also only afterwards you learn that we've got all the scientific proof we want, but you can appreciate when I wrote the book it was all a hypothesis. In my view, this isn't really a hypothesis. I mean the autonomic dysfunction has been measured and researched in depth, there's just nobody screaming, “Well this is what we need to do." To answer your question; is the autonomic nervous system which regulates everything is causing all of these problems and the way this happens is it was in an overwhelming amount of stress.
Now the word stress is often misinterpreted by people because they go, “Oh, you're saying I'm all stressed out." Well, yes you are all stressed out, but people think that stress is something we do in our minds. Which is of course true and can be one source of stress but you usually find people get this illness have a multitude of stressors. Those stressors can be physical stressors, mental stressors, emotional stressors and it is really any stress to our nervous system. Most of the time you actually find out people have got all of them and that's why there is this excessive amount of stress that then tips people into dysfunction.
But once we were all in the dysfunction, and our body doesn't respond correctly to stress—doesn’t regulate our hormones, our gut, our whole body gets dysregulated which then leads to also secondary problems and those secondary problems will also be stressors. So if you think about your life when you have ME/CFS, if you think of your whole life there has probably never been a more stressful time for you then when you were ill. So when you were ill you have physical stressors like when your blood sugar is dysregulated. So when your blood sugar drops too a low everybody, healthy or not healthy, will have a stress response and the stress response will bring up the blood sugar but because we experiencing this all the time, this hypoglycemia our body keeps having to deal with this stressor. We are actually creating this stressor. The dysfunction is creating the hypoglycemia so it is a cycle.
Dr. Craig: A vicious cycle.
Dan: It is a vicious cycle but it is not just the hypoglycemia, the dysfunction is creating and then responding to it like the stress or of the hypoglycemia, it’s also your gut dysfunction. So that actually can be created and can be accessibility by secondary problems like Candida and infections and those sorts of things. It is actually the nervous system that affects the gut, and then this gut dysfunction actually affects the nervous system so again we have a loop. And this goes on with all the different systems in the body. And then of course on top of all of that because we are so sick, we are also mentally stressed out, and sooner or later we get emotionally stressed out. So this is part of the reason why it perpetuates. But what happens in the beginning is… In the beginning we might have… I mean mine was triggered by… I had immunization. I happened to be working long hours getting up very early, working on a project before my day job, coming home to a young family. I was exercising very heavy so there is another stressor all right. I was exercising what you might say was excessive, and I had an emotional stress or shock a couple of years beforehand.
Now that didn't bother me, that was dealt with, that was in the past but you see some of these things they all affect or nervous system over time. Let's face it that's how we get triggered in. But then in order for us to recover the problem isn't just the triggers, the problem is how we respond to the triggers.
So what I mean by that is the hypoglycemia--anyone has a low blood sugar its normal the body responds--but it may respond excessively. And it's the same with any sort of trigger and what could happen if the triggers could become anything over time. So I mean people get suddenly triggered by light, too much light, too much sound. They get triggered by smells and that's how the multiple chemical sensitivities come in. There is no way on earth that a smell of perfume or petrol has enough toxicity to make us sick, but it is making us sick. I am not saying that this isn't happening, it is happening 100% but what is happening is through the olfactory bulb it goes directly to the centers of the brain that are involved in this dysfunction and it basically triggers the nervous system with an excessive response. That excessive response can either be sympathetic, which the fight or flight response or parasympathetic, which is the rest and digest. But it isn't a healthy response, it's excessive. All of this creates more symptoms. So what we have to do is we have to take advantage of the wonders of neuroplasticity, and we have to retrain the brain to start responding normally again. That is the path to recovery in my view.
Dr. Craig: Wow, okay so autonomic dysfunction is really central in your model of ME/CFS and it does make a lot of things and I think we think we have a lot of research to support that. So what type of interventions did you find helpful for your own recovery to kind of help reset this autonomic dysfunction for yourself?
Dan: You've got to appreciate first of all that major science is just now only catching up on all this type of thing. Most of the doctors you will go to, when they went to university they were taught that the brain is static. That means that by the time you reach adulthood the lecturer has told them at university that, that's it, the brain is fixed. But the truth is that the brain is plastic. It can change. So because I recognized the problem in the brain I had to go, “Well how can I affect the brain?"
The first thing I did is I did treat my physical dysfunctions. The way I try to explain it is let's say it's like a reflex, it is like a conditioned reflex that the brain has. So blood sugar goes low, boom, it overreacts. Blood sugar goes low, boom, it overreacts and it does it over and over and over again. So it becomes a conditioned response like Pavlov's dogs, Pavlov, the Russian researcher, he rang a bell, gets the dog food, the dog salivated. Rang a bell, gets the dog food, salivated and then he just rang the bell and the dog salivated without the food. That is kind of what is happening in our nervous system to a whole bunch of these triggers.
I knew that if I reduced the triggers, my nervous system has more of a chance to retrain. It's like if I’m standing in the goal and every time a ball comes to me in soccer, I flinch. If you get like 20 kids out there kicking balls at me I'm not going to change that, I'm just going to be flinching all the time. But if I just get one person there that said, “Okay, are you ready?" Okay, we're going to try not to flinch, don't cover your face, try and look at the ball and punch it away and I go, “Yes, okay." Slowly, “Are you ready now?" "Yes." And the ball gets get kicked slowly and then I can try and change… I can try and use my brain and say, “Ooh, I am just going to kick it away now."
So I tell this analogy because what happens is when we’re ill and we have all of these problems in our body, our brain is so overwhelmed trying to respond and deal with all of this, that it's in a complete state of chaos. For it to really make a change it becomes very difficult. So I treated my body. I got rid of as much as I could treating my gut, treating my energy, getting up my mitochondrial dysfunction, trying to address that, treating all my symptoms, but then I knew that in order for the brain to change I needed to change my base level of arousal.
Now Harvard University has done research to show that the physical brain changes, that we can see that literally changes in the brain after 6 to 8 weeks of mindfulness meditation. So literally do a scan and go, “Wow, there is more gray matter here." So I knew that meditation was clinically proven to be able to affect the brain. So I started to do mindfulness meditation as my base. I did find this frustrating because it was not my type of thing. Some people are drawn to this. For me it was just like taking medicine. I would sit down every day and in the beginning I couldn't do it. It was like my brain could not do it. I tried even mindfulness lessons. I tred to get out and move a bit, get out and get some fresh air and I couldn't really walk more than a couple hundred meters often and you know but I would go and I would try and count my steps.
I could not do it without thinking about something else. So I did that mindfulness meditation every day and over time I extended this to a 40 minute session. I did it religiously and I don't mean as in religion, I mean as in dedicated, right. I did it every day, every single day and no matter how much I did not want to, and believe me, it wasn't my cup of tea, it is not in line with my personality just to sit down and do nothing. I did it, I did it and I started to find some room.
The next thing I did is I started to notice that I had… Remember I told you about the brushing of the teeth? So I recognized that I was actually doing a stress response in my body whenever I was doing anything and I hadn't been aware of this before because I was so sick and everything I didn't realize this. So what I said that to do was retrain my nervous system so that whenever I go to doing anything--whether it would be sitting down whether it be reading, whether it would be brushing my kids teeth, or bringing in the shopping from the car--that instead of being like not breathing and pinching my body and… I would go hang on, I can relax. I learned relaxation with my meditation. So I go, “hang on" I can let go of the tension of my muscles, I need to keep breathing. So here was another way I would re-train my nervous system.
I also went away from worrying about the illness and worrying about the symptoms and checking my body for symptoms. I focused quite a lot also on addressing all of those things that were dealing with the symptoms in terms of the tension and yeah, so… And a range of other things. I mean there is a whole multitude of things that I am doing but that gives you some idea of what the type of approaches that I took.
Dr. Craig: Yeah, definitely and mindfulness meditation is a huge one, it is something that I used too because I noticed that too. I get this tension and I have moments where I stopped breathing, and it's obviously a major stressor for the body and what I love about these interventions is they are so simple and they are free and anybody can do it. So even you who may doesn't have the personality for meditation, is not into it like people who are more into Buddhist mindset but anybody could do it with some practice, and some diligence, and it is simple and it can have profound effects on the brain absolutely. Very cool.
Dan: It wasn't like… This wasn't some alternative health thing or some… I mean this is clinically proven. I saw this other documentary and it had a professor from the United States, professor Ledoux, Joseph Ledoux and he is a brain researcher and his focus is on the stress response.
So I also read his book and in his book he talked about how this, the different factors that affect the stress response and these can be physiological expressions of the body as well as mental things. Through that I explored a whole bunch of things that suddenly became apparent to me that I suppose I had been too sick to even realize… I didn't really emphasize that these things had anything to do with my illness because it is not like I used to focus on my body or how sick I was. I mean everything was fine and after immunization I suddenly had a flu symptoms. I mean I would never have thought that the way I interacted with my body or my mind that that could have anything to do with my illness, because that is not how it started you see. But once the illness takes hold and perpetuates, once I look to all the research I could see how all of this was connected in the brain.
Dr. Craig: Yeah, we tend to kind of hone in on just the immune system piece with this illness and in doing so we kind of forget like all of this other piece is particularly the autonomic nervous system piece so that's really great advice for our listeners because there are simple interventions that could really have profound effects and there is a lot of clinical research now coming out showing dramatic changes in the brain from just some of these simple types of interventions.
Dan: Yeah, the key is any of these things in isolation are not going to be the cure. I am saying that people can recover and it's not an accident. But it's about addressing these things so you have to help people to physically heal. You have to remove the stressors in your life and do the meditation. It's like I was saying in the soccer goal, if there were 20 people kicking balls at you, how are you going to get over your fear of soccer balls in your face? It just doesn't happen. You need to give your system a break to allow to almost reset, if you like, and start to work normally.
When I speak to people who have recovered and I speak to them all the time. I mean people all the time. In fact they are everywhere. I used to think that there was no one with the illness that had recovered. But now I meet them literally in the street like across the road, neighbors and stuff and able to recognize pretty quickly usually because they live a particularly healthy lifestyle.
It's about doing all of these things together and including some of these mind-body interventions and techniques to rewire your brain. In my book I did actually give an example of a houseboat with anchors. These anchors are like these conditioned responses, these triggers. If you have anchors all around then you only pull up one other time. The boat is never going to move. If you pull up most of the anchors but if you lift one big one the boat will start to move and go, “Oh, look at me I have started recovering." And then it just turns around with the current and it's just stuck again and then before you know it, the anchor starts dropping again.
So this is an analogy but it is a good analogy, because the way to do it is you go to work on all the fronts. If you lift up enough of these anchors and then the boat goes. If you've got some little anchors--you don't have to do it perfectly--because if you have got some tiny anchors, if you have removed enough of them, the boat will lift off anyway and the little anchors will pull off the bottom. That is exactly what happens in recovery. So you don't have to do everything perfectly, but you have to just do enough to get them to normalize the body and once it normalizes the other stuff dissolves.
Dr. Craig: That's a good analogy for sure. Now instead of just you getting well and going on with your life, you decided instead to write a book about these experiences, and you have your own website where you share educational material. So could you talk about your work here and your motivation for creating this?
Dan: It was a bit peculiar. I had never met anyone with my illness and probably to be fair, it was because for so many years I did not even know what was wrong with me. Even once I learned that I had CFS I had fibromyalgia in the later stages I have to say the pain thing was… It is a whole other interview because if CFS was terrible, I found that the pain over the years really wore me down so that was a big thing for me to overcome. But what had happened is I never met anyone with the illness, and so as I had pieced all of the stuff together in my head and I started doing all of this stuff and I started to recover, suddenly I actually met all these people with CFS.
In fact I'm at about three or four within a month and it was just kind of – what is going on? It was very kind of weird. It was like maybe these people have been around all the time and I never saw them because I had my head down trying to deal with the illness. I suddenly met all of these people. I talked to this one lady and I said, “Look you know I worked all of this stuff out and it's really explains everything." And look, there is a lot of unanswered questions like: why is this person recover when this person doesn't with the same treatment, and why does this person get this illness and this person gets that illness, and why does this person have these symptoms and this one doesn't, and all of this stuff doesn’t explain everything.
So I am using this information and I'm actually getting well and she was so excited and I was like, “Yes I can help you and you can get well too." And I was very excited to share this with someone. She grabbed me by the hand and she ran out to grab the phone and started dialing it. She wanted me to speak to her mother to tell her mother that she wasn't crazy, that someone else has all the symptoms. I remember it was such a shock, it was such a shock for me, and I go, “Hang on, I was just telling you how to get better."
All she wanted to do was show other people that she is not a crazy person for all the symptoms. But I realized that perhaps my explanation, which I gave to you very quickly, was too confusing. I thought in order for people to get better here they have to get away from treating symptoms, and they have to understand illness as a whole and I thought I wanted to have these people.
I started helping those people and I try to explain to them like I am doing to you now and I couldn't, it was just too complicated and I got too technical. I started talking about acetylcholine and mitochondrial dysfunctions and lipids and all these cellular processes… They were standing there like, “What are you talking about?" And I thought, “You know what, if people are going to get better, they have to get their head around this and they have to understand what's going on." So that's basically what spurred me on to write the book.
I thought I would write this little book and just sort of do it fairly quickly but actually it took me a long time, it was a very difficult project because I tried to write it in a way that would satisfy people's scientific curiosity, but also that it would make sense to the layperson. To explain something that was sort of so complex in a way that I could get a head around it was quite a challenge for me. That's basically how I got inspired to write the book. The other thing I guess on my website you will see is all of these recover interviews. I interview people who recovered. I don't care how they recovered because it is just showing that you can recover and some people recovered during…
They didn't even know why they recovered so not everyone had a plan like me, an action plan, some people just recovered by doing a bunch of stuff. But the point is that there is always good reason why they recovered and so by demonstrating it I just wanted to give people hope that they go, “Oh recovery can happen." So that's one thing that I have been focused on doing, is sharing other people's journeys of recovery and I hope people get insight and most of all they get help because I didn't have any of that.
Dr. Craig: Right, we've all been there. We have all been there hopeless. All right Dan, we are about out of time, this has been great. So before we go though I want to ask how can our listeners reach you and find out more about new videos you have out, new educational things you have out.
Dan: The best place probably is to visit my website first and foremost which is www.CFSunravelled.com. Some people don't recognize that they are also doing my fibromyalgia because people still think that they are two separate illnesses but I just had to use one term so I decided to use CFS to try to encapsulate everything. There seems to be more diagnosis of fibromyalgia, I don't know why that is, maybe that when you have pain you suddenly get taken seriously.
I think there are a lot of people who are just undiagnosed with CFS but yeah, but to the website. Now what I have there is… I actually created a series of videos that you can request to be sent to you. Pop in your email address and that will send you a series of four videos. The idea is just to explain to you a little bit more about along the lines of what is the root cause, and how do people recover, and why people recover. And they are short videos and they give them to people in step it so that they are not snippets so they are not overwhelmed.
Also so that they don't fast-forward trying to listen for some magic bullet because that misses the whole point. The magic bullet is treating the syndrome as opposed to trying to take a pill; and it is changing the brain as well as the body. So they can have a look at those videos. If they want to they can buy the book. It is a book that is a Kindle book but you don't need a Kindle, you can read it on any tablet. If you have a tablet, if you have Kindle reader you can read it on that, you can read it on a laptop, you can read it on a desktop computer, you can even read it on your phone you just have to buy the Kindle app and that's the easiest way to read the book. It is fairly inexpensive. It is like eight dollars or something like that. So that's a book you could read if you are interested.
I have been working on a recovery program. People for many years now have been asking me for help and coaching. The problem I have is there is a lot of education involved and I feel it is too expensive, and it all takes too much time to do that one on one. Also because we’re in a state of brain fog we don't get it into our heads and I have looked at doing seminars, but people are too sick to come to the seminar so I decided the best way would really be for people to have an online education program and a virtual mentoring program. I have been working on that for the last two years. It seems to be one of these never-ending projects and I hope to have that released sometime later this year. So if you connected to me by the website and requested the videos then you get updates on any other resources.
Dr. Craig: Okay, that sounds great. Lots of ways to connect and get information. Alright Dan, well thank you so much for being on the show today. And thank you for continuing to spread this knowledge that you have gained from your own experience, and through your research, and the most important thing is sharing hope with this community. I invite our listeners to subscribe over on iTunes so that you never miss an episode and this is Spoonie Radio signing off