“It can't get any worse.” But it did. How one man's desperation led him on a quest to unravel the mysteries of ME/CFS and Fibromyalgia.
Dan Neuffer was barely 30 when his life was turned upside down by an initially unexplained illness. Eventually diagnosed with ME/CFS, his frustrations increased as both fibromyalgia and POTS also set in, leaving him struggling to cope with no real hope for recovery.
Accepting that these were lifelong illnesses, Dan decided he would do what he could to make the best of a bad situation. However, when his symptoms became extremely severe, the scientist in him could no longer just sit back and accept his fate. Using his research skills as a former physicist, he embarked on a remarkable journey – the quest for a deeper answer to “why this illness occurs and what drives it.”
Bit by bit, Dan began unravelling the tangled mass of confusing symptoms and was gradually able to piece together a comprehensive explanation for the pathogenesis of these illnesses. Once he felt he understood what was at the core of his illness, he was able to focus on a treatment plan that would address both the primary and secondary dysfunctions. About 18 months later, Dan had made a full recovery.
Following his recovery, Dan shared his journey and findings in his book CFS Unravelled. Since the first edition came out in 2013, more and more research has been published demonstrating the root and secondary dysfunctions described in his book, and the medical community has moved closer to a consensus on the root cause of the illnesses as he describes.
Now a revised and updated version of CFS Unravelled has just been released in paperback.
CFS Unravelled – A Brief Review
The full title of the book is CFS Unravelled: Get well by treating the cause, not just the symptoms, of CFS, Fibromyalgia, POTS & related syndromes. It is divided into three logical sections:
- Part I: Introduction – tells Dan's story and what started him on his quest.
- Part II: Unravelling CFS – takes you step-by-step through his thought processes as he unravels the symptomatology and gets down to what he believes is at the root of these diseases.
- Part III: The Path to Recovery – lays out a multi-faceted treatment plan.
If you're looking for a book that you can skim through quickly and come away with one or two simple answers, this is not the book for you. However, if you want to gain a deeper understanding of what's going on in your body, what causes certain dysfunctions, why those dysfunctions may be manifesting as multiple symptoms, and how you can begin to restore your health, I think you'll find this book insightful and helpful.
I've been studying these diseases and reading the research for more than 25 years. In that time, I've come across many experts who have put forth various hypotheses that would explain some of the symptoms of ME/CFS and/or fibromyalgia. But they all seem to fall just short of painting a full picture of what's going on with these diseases.
Dan has done the best job I've seen to date of putting all the pieces together into one comprehensive explanation. His hypothesis clearly explains why such a variety of “causes” or triggers can all result in the same illness. It also reveals how symptoms can vary so greatly between patients who are diagnosed with one or more of these illnesses.
After sharing his insights into the pathogenesis of these illnesses, Dan lays out a path to recovery. I found this section especially interesting. Dan doesn't offer a one-size-fits-all treatment plan. Rather he gives a framework for rebuilding health and offers suggestions as to how patients can construct their own customized treatment plan designed to meet their own unique needs.
CFS Unravelled is not a book to be read quickly and set aside. It's one of those books that you want to digest slowly and thoroughly – highlighting parts that you particularly relate to, making notes in the margins, and using it as an ongoing guide on your journey to recovery.
You can purchase CFS Unravelled through Amazon, or for links to other purchase options worldwide, go to https://cfsunravelled.com/cfs-unravelled/#retailers
Interview with the Author – Dan Neuffer
I recently had the privilege of talking with Dan and learning more about his book.
Karen: In your book, you say that after suffering with ME/CFS for several years, you had come to accept that it would be a lifelong condition, and you would just try to make the best of a bad situation. What changed that later led to your fierce determination to figure out not only what caused your illness, but how you could get well?
Dan: I think I should probably start by saying that the explanation I put forward is a hypothesis, although the wider medical community is more and more coming on board with this explanation now and evidence continues to mount that this root dysfunction is central to the illness.
But to answer your question in one word; desperation!
I often remember thinking during my ill years, it can’t get any worse, but my experience kept proving me wrong. In my 5th year I suddenly found myself unable to cope with the pain which I had more or less been taking in my stride up to that point.
Then I had a flare up that caused me to deteriorate so severely that I was suddenly bed-ridden, struggling even to speak or move my arm. I remember lying in my small bedroom all alone and it felt like my heart was really laboring – it was very unsettling.
Some weeks later, I managed to drag myself to the couch for Christmas but was unable to participate. Forget helping with any part of the festivities, my biggest job was somehow getting from the couch to the dinner table. But I couldn’t even fake a smile for my two little kids that Christmas, not even during the present giving. As a dad, I would normally always pull myself together somehow, but I didn’t even have the energy to fake a smile – I never thought such a low was possible.
About a month after that, I finally managed to get off the couch. At this point, I don’t think I had been out of the house in at least 2 months. I was looking through a gap in the curtains at the blue sky and reflected on my dilemma.
I felt that ‘living with it as best as I could’ was no longer a viable option. Not only wasn’t I coping with the pain, but the last flare up took my exhaustion to lows that were downright scary.
During all my years with the illness, my wife had always said that “someone out there knows the answer.” But I always said, if someone had the answer, then surely we would all know it!
Suddenly a thought popped into my head – “Dan, you find the answer”.
It seemed a strange thought, but then I remembered a movie I had seen in the past called Lorenzo’s Oil. In it the parents of severely ill boy decide to research answers and work with researchers when no medical solutions were readily available. Whilst they didn’t find a ‘cure,’ in the movie, they end up having some success to improve their son’s condition. So I immediately told my wife about my idea and she looked at me confidently and said “Yes, you will. Do it”
To be frank, my bravado left me immediately after she said that, because it felt like such a ridiculous notion. But I had made a commitment, so I simply started to go through the motions, although I had very mixed expectations about my efforts to say the least.
Karen: ME/CFS and fibromyalgia are extremely complicated illnesses, affecting numerous systems in the body and confounding many of the medical experts who have spent years searching for answers. While a number of theories have been advanced that would account for some of the symptoms, they all seem to fall short of a full explanation for what is causing these illnesses. What did you do differently that enabled you to unravel the confusing tangle of symptoms and get to the root of the problem?
Dan: I think there are probably two factors here.
First of all, I was of course very highly and desperately motivated. Although, potentially that can be a disadvantage because it can affect one’s judgement. But I was so sick and tired of all these ‘theories’ and treatment ideas, because after years of trying one after the other, nothing had ever worked. Frankly, I had completely lost any interest in treating symptoms. It just didn’t make sense any more to treat symptoms unless I knew why they existed in the first place.
I couldn’t accept that it was just something that had happened, I felt there had to be some real concrete reason for all the symptoms and dysfunctions! So saying, “you’re feeling ill because you are not producing enough cortisol or thyroid hormone, here, just increase that and you will feel better” – that sort of thing just didn’t cut it for me anymore.
The second thing was that I was not limiting myself to any field of research. If you look at most research, I feel that it looks for a solution from a certain point of view, because of course it makes sense to research areas that you are highly skilled at.
So if you are an infectious disease expert – you look for infectious disease. If you are an endocrine researcher, you look for a hormonal disorder. If you are a specialist in cellular metabolism, you look for a cellular dysfunction, and so on.
Whilst I made use of lots of wonderful research out there by very skilled and amazing researchers, I had no such bias. In fact, I looked at all the angles I could find, but when I found an issue, I kept asking questions, “Why is that happening?” When I found potential answers for that – I then asked, “Why is that happening?” I wanted deeper answers. I didn’t want partial answers for just one aspect of the illness.
Karen: The subtitle of your book is “Get well by treating the cause, not just the symptoms, of CFS, Fibromyalgia, POTS & related syndromes.” In your opinion, are all of these diagnoses just slightly different manifestations of the same core illness?
This is where it gets so confusing – so many different symptoms.
For an example, let us consider three ‘different’ patients:
Patient One: She presents with severe and chronic pain, reasonable energy, normal blood tests, normal hormone profile, sleep problems and light sensitivity.
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Patient Two: She presents with flu-like symptoms, severe exhaustion, elevated white blood cells, low thyroid hormone and severe gut dysfunction
Patient Three: She presents with heart-palpitations, fainting episodes, dizziness upon standing, irritability and depression but more or less normal bloods and hormone profiles.
Any reasonable physician might look at these three patients and think they have nothing in common – completely different illnesses, right?
However, of course many of us that have been sick for longer, actually identify with all 3 patients over time (and many more symptoms). So that alone might be enough to help you connect these apparently differing symptoms or illnesses.
The patient community of course is varied, some see the connection and some still think these are different illnesses (largely because they themselves haven’t crossed over to experience the symptoms of the ‘other’ syndromes). But if you look at many websites, like ProHealth for example, many of these syndromes together on the one site, because the authors see some kind of overlap.
So whilst my own personal experiences with the symptoms of the different syndromes made me feel like there was a connection, just like others out there had, it was my research into what causes them that transformed my feeling into a conviction.
Karen: In your book CFS Unravelled you detail how all the symptoms and all the ways that people get ill and recover all tie back into one root cause – can you summarize this?
Dan: Well, I am always wary about simplistic explanations as they are prone to oversimplification, but I’ll do my best.
The reason for the confusion with the illness, is that there isn’t just a primary dysfunction but also numerous secondary dysfunctions and symptoms that greatly vary between people. That’s why the 3 patients above look so different.
So the real question for me was, what could possibly be causing so many different symptoms and secondary dysfunctions. The answer is dysautonomia, which is a dysfunction of the autonomic nervous system (ANS).
When I first published CFS Unravelled in 2013, this was considered quite controversial in some circles. But since then, more and more evidence is accumulating about dysautonomia and it appears that the medical community is gaining more consensus that these syndromes have a neurological component.
With some syndromes like POTS and RSD (a.k.a. CRPS), dysautonomia has been recognized as playing a key role for some time, however, because the symptoms of ME/CFS and fibromyalgia are more complex and dynamic, this connection hasn’t been as obvious.
So in the book I explain how the various symptoms are created in some detail, and how my analysis ultimately always ends up at the ANS.
The ANS is designed to regulate the body and create homeostasis in response to anything that creates an imbalance, so we can understand why people seem to get ill from so many different triggers. A physical accident, giving birth, a severe infection of some kind and even mental stress or upset, they all impact the nervous system and the ANS activates to deal with these things and help the body cope and heal. In my case, the tipping point trigger was an immunization, but when we look at how the illness starts in the patient population, there are probably as many triggers at onset as there are symptoms.
It’s also important to realise how dysautonomia is triggered once the illness sets in. Even mild experiences disturbing homeostasis (like slight blood sugar movements for example) can often trigger the ANS leading to symptoms. It gets very complicated and involved, I try to give as much detail as practical in CFS Unravelled to help the reader connect the dots.
Karen: Between your book and your website (cfsunravelled.com), you share quite a few stories about and interviews with people who have recovered from ME/CFS and/or fibromyalgia. Though their paths to recovery vary, have you noticed any key similarities?
Dan: Yes there are many similarities.
The first key recovery commonality is that people usually reduce any triggers that disturb homeostasis, reducing the impact on their ANS. So whilst they often speak of a particular treatment or strategy that they felt helped them, when you probe deeper (you will hear me doing this in the interviews), you will always hear how they also made many other changes.
This is really an important aspect of recovery. And so it becomes really important to understand what type of things can affect homeostasis which again, is why I get a bit technical in the book.
To help you understand, let me give you a metaphor. If you have a leaky roof, even if you patch 4 of 5 holes, your house will still get wet when it rains. If you treat 4 out of 5 major triggers of the ANS dysfunction, dysautonomia may still continue.
The second most obvious commonality is that people tailor their recovery strategies. So this is really for the same reason as I just explained, the need to address our specific personal triggers. This also helps us understand why we see something working for one person and not the next – they basically have different triggers and secondary dysfunctions and symptoms.
The third commonality to note is that they change their relationship to stimulus, which helps change how they respond to pain, lights, noises, smells, exercise and even symptoms.
I think almost everyone notices how things that didn’t bother or affect them in the past suddenly become offensive and trigger symptoms, with pain perception and chemical and light/noise sensitivities really being some of the most distinct examples.
Our responses here are involuntary and reflect the neurological dysfunction we are experiencing. Unfortunately sometimes people that haven’t had the illness don’t understand this and suggest that ‘it is all in our mind’ or something like that. This couldn’t be further from reality and fMRI studies have shown that these neurological reactions are absolutely real as are all the subsequent symptoms we experience! So suggesting that these things are psychological or imagined is really quite silly!
The good news is that the brain is plastic, able to change, and so we can retrain the brain to start behaving more normally. This is really a key aspect of recovery, and often people that have recovered don’t even recognise how this was part of their journey. But again, when you listen to them tell their story, you will virtually always hear about these aspects.
Now the research on central sensitization and pain perception is really pretty well established and agreed upon, and some of these brain training techniques are even used in clinical settings in hospitals where opioids are inadequate (such as with severe burn victims). But research on brain training for other stimulus triggers is less established at this time. As more research and clinical trials are completed, I would expect that we will see more of these type of treatments become available for mainstream people experiencing these syndromes.
Karen: What hope or encouragement can you give to patients who feel like they've tried everything – both traditional medical and alternative treatments – but nothing has worked?
Dan: Well, the first thing of course is that I’ve been there and done that. So I truly understand how frustrated and upset you might feel. It is really so disheartening, that many of us would prefer not to try again because we don’t want to risk going through that hope and disappointment.
But I can assure you that many people who have recovered, felt exactly the same, and yet they still recovered when things somehow came together for them and they finally made their breakthrough. One of my favourite stories was when one lady wanted to prove how something wouldn’t work and then started to get better – so you never know. One thing is for sure, we need to do something if we expect things to change.
Having said that, I would say that you shouldn’t rush into anything halfheartedly. In my opinion a more sound approach with a higher likelihood of success is to have a sound plan and know what you need to do in order to address all your triggers, as opposed to just treating some of your symptoms,.
All these different treatments and recovery strategies take a lot of effort, energy and sometimes also money, most of which many of us don’t have much of whilst we are ill.
So instead of just going for it, I would suggest you always do a little more research until you feel confident about your recovery approach. Also, it’s about going up the learning curve for the different elements of your recovery journey. Once you have done that, you have ‘all your ducks lined up in a row’ so to say, so that you go for it all at once to tip your system back into normal functioning to restore robust homeostasis.
Faith and hope are really helpful to ensure your efforts are sustained. Frankly, I had very little of either of these because when I recovered based on my research, I didn’t know of anyone that had recovered. So listening to how others have recovered is really a powerful step to help you develop hope and faith again. When you start to experience some positive shifts yourself, that’s when can you really develop a deeper confidence that recovery is truly possible for you. Until then, we often think that we are different or that other people that recovered had something else.
Karen: CFS Unravelled was first published in 2013. Have you made any updates or significant changes in the paperback edition?
Dan: The book is about 30% smaller. I wanted to make it more concise and even more readable for the layperson.
The connections of the dysfunctions and symptoms and description of the root cause evolved from my own research and piecing together of the puzzle. So the book was originally presented as a hypothesis and this style was maintained in the new edition.
Although as I said before, it’s become much more widely recognized that the syndrome is neurological in nature. The World Health Organisation (WHO) actually classified CFS that way a long time ago, and the American College of Rheumatology also references research to say that Fibromyalgia is a nervous system based illness.
So besides a rewrite for readability and a foreword by Prof. Kati Thieme, the book still holds onto the core message.
More About the Author
Dan has been supporting people with these illnesses for years via his website cfsunravelled.com where he publishes interviews with other recovered people who tell their story and share their recovery insights. He also authored a second book: Discover Hope – 7 steps to help you rediscover hope and cope better with Fibromyalgia, ME/CFS, POTS, PVFS & MCS, which he gives away for free.
After years of requests, he also responded and created a comprehensive online recovery program called ANS REWIRE to support more people with their recovery journey. The program is now being used in over 30 countries around the world.
Dan lives on the sunny Gold Coast in Queensland Australia with his wife and two children. He is passionate about enjoying outdoor activities like hiking, sports and exploring the local beaches and rainforest with his family.