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Unravelling the Mysteries of ME/CFS and Fibromyalgia: Meet the Man Behind the Book

  [ 57 votes ]   [ 19 Comments ]
By Karen Lee Richards • www.ProHealth.com • October 11, 2017


Unravelling the Mysteries of ME/CFS and Fibromyalgia: Meet the Man Behind the Book
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?

Dan: Absolutely!

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.

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.



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Article Comments Post a Comment

I know I am a skeptic
Posted by: IanH
Oct 13, 2017
Dan lives not far from one the worlds most significant immunological research centers dedicated to ME/CFS research. A multi million dollar centre. (Griffith University: Center for neuroimmune disease).

Dr Ian Lipkin is using up millions to research the causes of ME/CFS.

Now according to Dan's thinking they are wasting money because once you understand his idea of the cause and apply "rewiring" you will be cured or recovered. In some ways this is exactly what they tried to do in Britain: convince people that if you do X Y an Z you will recover (Pace trials)

Maybe Dan could read Dr Jason's paper:

"Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective" It only cost my institution $55 to get the paper - if you are a clinician then it is well worth reading.

I wouln't refer anyone to Dan.
Reply Reply

 
I am a skeptic too!
Posted by: DanNeuffer
Oct 13, 2017
Thanks for your comment Ian.

Actually what I am saying is the exact opposite to what you appear to have perceived.

It is NOT about a simple protocol of X Y Z (something of course that every doctor and patient would like to have), it is about tailoring recovery approaches because our secondary dysfunctions vary greatly.

Brain training can take many forms and there is wonderful research coming through and hopefully more technological advances to make the process easier and more direct. So I am all for research for better treatment solutions. Not sure why you linked me to the PACE trials, clearly the approach I advocate is very different.

I strongly advocate patients to engage with their physician and take advantage of a range of treatments to reduce symptoms which takes the pressure off the nervous system. Any treatments that reduce viral loads or other infections, reduce inflammation and support the immune system and improve cellular function can be very helpful for the recovery process. But I don't see how any of these will be that "X Y Z protocol" to simply allow people to recover from the syndrome.

Research that leads to improved function of the immune system is great, however, that is only one aspect of ME/CFS and hence I don't see how it can be a unilateral solution.

Any research and consensus on defining and measuring recovery from ME/CFS/FMS is absolutely fantastic and to be strongly encouraged - of course, I love the premise of that paper, which is my core message that RECOVERY IS POSSIBLE.

 


Hopeful.
Posted by: IanH
Oct 14, 2017
Over 21 years I have not seen tailoring treatment of "secondary functions" lead to a recovery of a ME/CFS chronic (>5 yrs) case. In fact, I have yet to see a full recovery. Many people improve over time, some by doing nothing remarkable at all.

I have studied many "brain re-wiring" approaches and have interviewed many people who have methodically followed such programs. Even though some people claimed a great recovery only to find a relapse some months later.

The problem I have with non biophysical approaches is the vagueness of recovery and the oftentimes reframing of recovery to make it look like the patient has misapplied the program. (My comparison with PACE). Such programs also lead the patient to believe they "just have more work to do on it" and they will get there eventually. Some patients say "I have to apply "it" every day and if I let it slip I get worse...

So, my belief (from observations and scientific evaluations) is that there is no cure, there is no recovery - only partial recovery that allows one to live a better life but not pre-morbid health.

There will be recovery one day - I am sure; but I do not believe our mind will cure us no matter how we think. (again CBT-PACE trials).

However I do accept that we may be talking about different diseases because I have seen people with a diagnosis of CFS which I do not agree with and have been proven correct when an alternative diagnosis is made followed by the correct treatment for the disease. (similarly such mis-diagnosis occurs in Fibromyalgia).

I am sure you help many people to live a better life. I am put off by your marketing which looks like the typical web of intrigue, drawing me into the eventual sale. Too me, it is not professional and unbecoming of a medical practitioner. (I am not sure what your credentials are).
Reply Reply

 
Confident
Posted by: DanNeuffer
Oct 14, 2017
Thank you for confirming my experience and my point. Whilst solely treating the SECONDARY dysfunctions may lead to some improvements most people need to do more to achieve a full recovery. Hence the subtitle of my book.

The real question here is WHY is there a difference in the results people experience? That is one of the many questions I answer in the book which involves gaining a deeper understanding of the complex dynamics of the illness.

So whilst you seem really sceptical about ‘brain re-wiring’ approaches, you have commented that you have seen people experience improvements, even if they “relapse some months later”. So if this is something you have seen produce partial recoveries, then surely this is an area that warrants further research! (Unless you think their progress was imagined - it seems we have an issue in our patient community about not being believed about our symptoms)

Your reference about ‘our mind will cure us’ and the PACE trials again, seems to refer to the notion that the illness ‘is all in our head’. Of course, I also find such notions offensive.

But it’s important to understand that brain-training and neuroplasticity does not imply that at all! For example, I have never heard of anyone that has had a stroke and is receiving brain-training to affect neuroplasticity say “you want me to move my leg – it doesn’t work, are you saying it’s all in my head?” This is why I feel education is so important, as is letting go of some of the unfair treatment we have experienced over the years.

My view is that it is important to remain scientific, objective and to have an open mind. So before arriving at any conclusions, it is most helpful to really look at the details. I don’t get the sense that you have looked at what I am saying in any detail.

I agree that a firm 'protocol' is ideally much more preferable than something “vague” – but until technological advances are made to allow ANS brain-training to be done more directly, I guess that is what we are stuck with.

Regarding your lack of belief in full recovery, I can appreciate that your experience would shape your outlook as it is exactly the same for me (dare I say for all of us). The difference is that I have seen many many recoveries, not just years and decades after they have happened (showing how people STAY recovered), but also in real time. Recoveries that allow people to return to work, exercise and live a full and fulfilling life.

I agree with you that some people get misdiagnosed with CFS/Fibromyalgia. However, suggesting that anyone that recovered has therefore been misdiagnosed would be completely illogical and unscientific in my view. I have worked hard to dispel some of these myths, but I appreciate it will take a while longer to get there.

It is disappointing to read your comment about the ‘web of intrigue’. I work hard to deliver my message in a balanced and effective way so that it can reach people. The challenge is that there is no simple short answer like “it’s ABC, that’s it” (although I tried to give that to you as best as possible in the interview above!)

The dynamics of this illness are extremely complex (otherwise everyone would have managed to get their head around this decades ago) and I do my best to explain it in a way that people can understand. The feedback about CFS Unravelled appears to be that I have done a pretty reasonable job. However, it’s not easy to summarise the scope of the book in short interview or short website content.

For the record, I am not a medical practitioner, I am an educator and coach who helps patients work with their medical practitioners for better outcomes. It would be nice to know who you are, if you are a medical practitioner and where you are based.

 


Dan
Posted by: IanH
Oct 15, 2017
I am a Psychologist (PhD) with Biochemistry (BScHons) training. My main areas of research were mostly "effects of drugs on cognition and behaviour, specifically as related to driving" My clinical experience has been helping people with chronic illness mainly associated with neurological disease or spinal injury. I am now retired.

I have had ME and FM for 21 years. I have improved significantly and done many of the things you recommend in your book (as gleaned from the reviewers comments). I have an unusual family. My daughter has ME and MCS (she is part of the research at Griffith). Her son, (13 yrs) has Juvenile ME and FM and seriously disabled. The illness first produced symptoms at age 6 yrs.

None of us have a significantly stressful life. None of us were unfit (my daughter was a professional athlete for many years) and we have always had a good diet and since my illness have taken key supplements. Her son is very bright and keen on life and the family is relaxed, easy going and happy.

This history should suggest to you that a genetic predisposition is very important. In fact if you get in touch with "Invest in ME" they have numerous DVDs of their conferences. There is much to learn from these and well worth the investment.

I can list many people who's ME (and FM) are familial, many of these I know personally and can say that stress was not the activator of their illness.

However I suspect that many psychological and biophysical stressors do aggravate the illness as is the case for many illnesses which affect the CNS. (Also, for all your readers: just because an illness significantly affects the ANS does not mean the illness is a neurological illness - in this respect the WHO are premature in labeling ME a neurological illness).

I have read most of the reviews of your book on Amazon, indeed there are many glowing reports. I have not read your book - yet! I may read it but I am not too keen to spend the time doing so. Convince me.
Reply Reply

 
Details
Posted by: DanNeuffer
Oct 15, 2017
I am sorry to hear about your daughter and grandson – unfortunately, it is not quite as unusual as you might think – I see this familial connection regularly, which of course makes people make a genetic connection.

The syndrome can also present in clusters at times, which then makes people look for a pathogen or toxin connection.

My belief is that both environmental and genetics can play a part, I don’t think these cases are isolated or coincidence. How much of the genetic side is a predisposition and how much is epigenetic isn’t clear. But in any case, I don’t believe that such cases exclude the possibility of recovery as I have seen such recoveries in family situations. I must admit, I always find stories of children getting sick particularly distressing.

Totally appreciate your comment about stress, and of course I cannot comment on the cases you have seen. However, based on your comments, I expect that our definition of ‘stress’ may vary very significantly.

I’ll finish off by saying I wish you and your daughter and grandson the best possible outcomes you can enjoy. Hopefully you find that the research study your daughter is part of helps her achieve an improvement in function.

I have presented significant information on my explanation in articles and videos and detailed them in the book in my efforts to help people make the same connections as I have.

Anyone with whom these resonate can explore them in more detail. I hope that our discussion has been helpful in some way.

 


Thank You
Posted by: IanH
Oct 16, 2017
for your sensitive concern
regards
Ian Hodgson PhD
Reply Reply

In response
Posted by: IanH
Oct 18, 2017
" However, based on your comments, I expect that our definition of ‘stress’ may vary very significantly."

Hmm! I don't think so.

I have read your book now. The problem with your book (Hypothesis) is that you decided that stress was the cause. It appears you decided this from your set of symptoms and you appear to have "self-diagnosed".

Problem with this approach is that it is easily confused with other pathologies that produce similar sets of symptoms. The most common is post anxiety syndrome. Sometimes also though of as depression. However I have seen many people with this post anxiety syndrome and I think it differs from depression itself.

By lumping all of the "conditions": CFS, FM MCS etc all into one you are making an epidemiological mistake.
Reply Reply

Unravelling the Mysteries of ME/CFS and Fibromyalgia: Meet the Man Behind the Book
Posted by: whoopingcrane
Oct 18, 2017
Your article is interesting, but not once are chronic Lyme infections mentioned as the cause of this illness! Lyme and co-infections are pandemic, but no one every mentions this fact.
Reply Reply

 
Lyme & ME/CFS/Fibromyalgia
Posted by: DanNeuffer
Oct 18, 2017
A very good point you make.

As you suggest, many people who have Lyme infections end up with CFS/Fibromyalgia/POTS. This, of course, takes the confusion of their illness to a whole new level, because it becomes near right impossible to determine what symptoms are due to which (although perhaps that isn't really what matters).

I have seen many people have their CFS/Fibromyalgia be triggered by Lyme infections (& other infections also). I think it really highlights the importance of treating these infections as part of the recovery process. Thanks for bringing this up.

 


Recovery or Remission
Posted by: scott_45242
Oct 18, 2017
Remission is a much better word than recovery. Also, if it is within the first 5-7 years, recovery can be very possible on it's own. i was very disabled for a year and then started to get better, took a job that guaranteed me 40 hrs or less a week. Then a few weeks is they suddenly upped my hours to 50-60 hrs per week. I started to eat fast food at every meal, and I continued to slowly get better. I was very functional for the next 20 years, and now have been disabled for 8 years (homebound/bed bound). The most important lesson is use the word Remission instead of Recovery unless totally asymptomatic after 5-7 years. Be careful of false attributions!
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Remission Vs Recovery
Posted by: DanNeuffer
Oct 18, 2017
So sorry to hear about your relapse. I hope you manage to recover again soon.

It's such a poignant point you make Scott.

We have just had a big discussion about this in another blog on Health Rising - https://www.healthrising.org/blog/2017/10/12/prognosis-cfs-fibromyalgia-pots/

 


Stress
Posted by: scott_45242
Oct 18, 2017
I wanted to add that, yes indeed stress has been one component that has kept me less well. I have heard of one recovery of a person who moved to a silent monastery for 5 years and she "recovered" fully. Once out of the Monastery she relapsed. so I do agree that managing stress is one part of getting better. But only one part. I have tried brain retraining programs and they have failed miserably for me. There are many self reported "cures" out of the UK due to brain retraining but they are almost all people under 30 with a short duration of illness. No real science behind the "cure". Once again be very careful of false attributions. If you do heal in some way, please change your lifestyle to keep stress low.
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Brain Retraining\Remission
Posted by: scott_45242
Oct 19, 2017
I think I am replying in the wrong place - so please excuse me. If brain retraining along with other approaches works for you that's great. However, I became so functional on a fast food diet along with stressful work hours, although in a very stress free environment, then if you consider brain retraining, please consider my fast food diet with long work hours :). Be careful of false attributions! Please be careful of false attributions!

 

 
RE: Stress Avoidance is not enough
Posted by: DanNeuffer
Oct 18, 2017
Again I totally get where you are coming from

I have seen similar things many times (although not going as far as an actual Monastery :) ). I also see people treating all their dysfunctions and living a super clean lifestyle and think they have recovered. But really, in my view, they have just reduced their symptoms through spectacular management. That doesn't take anything away from that - obviously, that is still great to see if it allows them to feel good and engage a bit better in life - but to suggest that this is a 'recovery' would not appear sensible to me.

The word 'cure' is so inappropriate in my view (I think it's OK to use if you take antibiotics for an infection, but that's about it!)

Look some people have great outcomes with these 'brain retraining' approaches, so there is something to be said about this. However, not only is the nervous system triggered by many of our physical body dysfunctions, but some of these are so severe that I really feel they need addressing.

So I never put down anything that has worked for somebody else - I think it is great. However, in my view a multi-lateral approach is more helpful - I discuss this at length in CFS Unravelled.

I hope you make your breakthrough one day soon Scott - I would encourage you to reconsider your previous 'failed' strategies in the context of a comprehensive multilateral approach. I myself used many treatments/strategies during my recovery that seemingly did nothing when I tried them years before in isolation!

 


Fibro
Posted by: MelissaYelvington
Oct 18, 2017
Dan, I identify with you. I was diagnosed with Fibro in 1997. It took 1 year to figure it out. It was so severe and had acute pain and not walking. Better with physical therapy then 3 to4 months it would start again. Disabled2001. 2005 diagnosed with MS. Fell 3 times and ended up in wheel chair. Had 41 lesions! In 2012, in remission. 2016 became ill like flu and nausea. 2017 diagnosed with Lymphoma, Stage 4.
My immune system didn't hold up to infusions. Second infusion, stopped breathing. Daughter did CPR, and ended up in hospital 4 days. Found I'm Allergic to the treatment. Dr is gushy as I am. A waiting game. Chemo is suggested next time. Had 2 MS RELAPSES ANd Dr gave me meds to stop the pain and spasticity. It's a long journey, and I'm happy to know that you've discovered how to cure it. I haven't been as successful, yet I treat the pain with prayer and positive attitude. If pain is too severe, I take a pain pill, heat rest and knowing that the Lord is with me throughout this long painful journey...I pray that He is healing me every day.... Sometimes I get down, many times, but I know I'm loved, and God has plans for me... I believe His promises.... God Bless You Dan and all people who have these Autoimmune diseases. This book sounds excellent! Thank You for research and sharing your book to help others become well...
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Melissa and MS
Posted by: DanNeuffer
Oct 19, 2017
Hi Melissa,

Thanks for sharing - I am very sorry to hear about your difficult journey. You are a great testament to the human will and what we can endure and yet still find ways to cultivate a positive attitude. Your faith has clearly served you well!

I wish you all the best.

 


CFS & ME
Posted by: debcam
Oct 19, 2017
I am finding the comments very interesting. How can stress as in physical stress, or physiological stress such as viruses, bacteria, injuries, and even over use/fatigue/exhaustion not be a factor? Those stresses seem very significant to me. Viruses can be latent and linger and then flare up with other contributing factors like emotional stress or fatigue or lack of abundant nutrients being catalysts.

Not trying to get off the subject but I've seen a significant stressful life event like the death of a child or spouse or another type of loss/emotional stress light the fire under bipolar syndrome and dementia.

For the record I am just a RN, BSN with a great interest in functional medicine, naturopathic medicine and a deep sense of disillusion for allopathic medicine.
Reply Reply

 
CFS/ME/Fibromyalgia & 'stress'
Posted by: DanNeuffer
Oct 19, 2017
Thanks for your observation. The interesting thing is, that I would suggests it's pretty fair to say that EVERY SINGLE PERSON with ME/CFS/Fibromyalgia knows of this connection, even if they suggest otherwise.

Because we all experience the payback, the flare-ups when exposed to stressors, regardless of whether they are physiological like pushing too hard physically, a vaccination or infection, being exposed to mould or eating sugary foods sending our glucose on a roller coaster - OR even neurological or psychological stress like too much stimulation from sounds or lights, even smells or emotional triggers like you mention.

In fact, virtually everyone has something along these line at onset of the illness, usually multiple examples, although they don't always recognise it because they see these things as positive experiences (eg. being a professional athlete and high achiever in other things)

That doesn't of course take away from all the other good science, showing the numerous dysfunctions triggered by these stressors (often via oxidative stress) - and anything we can learn from such research to help us feel better and move back towards health is naturally helpful.

Appreciate your interest in functional medicine and naturopathic medicine - indeed the use of orthomolecular approaches is way underutilised in modern medicine at this time.

 



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