(Dan Neuffer, a recovered patient, spent years trying to build a big-picture view of this illness. In this provocative blog he argues that researchers often get too wrapped up in their specialties to see the forest for the trees and that there really is a ‘single’ cause for this illness… and it’s staring everyone in the face. )
After so many decades of ME/CFS & Fibromyalgia Syndrome being described as an enigma by the medical world, I see the day in sight that the mystery will give way for clarity for everyone.
The mystery ended for me personally some years ago, shortly before my recovery, in fact. But we are far from all agreeing what is really going on. There are so many different opinions about these illnesses. Some of these are very strong and are aggressively defended and sometimes it gets very adversarial
Some argue that ME is completely different from CFS. That Fibromyalgia is a different illness than either. Some argue that our illness is caused by epigenetic gene expression, others are sure it’s caused by hypo-methylation, others fight tooth and nail to defend Dr Armand’s theory and the Guai Protocol, then there’s mitochondrial dysfunction, sympathetic nervous system arousal, viruses, natural killer cells…the list goes on and on.
I believe that all these hypotheses, ideas and treatments are actually part of the same big puzzle.
I also think we often miss the forest for the trees. I think our focus on the many symptoms of this disorder leads us (and that includes our researchers) to miss the big picture. I’ll make the provocative assertion that there is very little REAL ME/CFS & Fibromyalgia research going on.
Let me explain…
While there are a huge number of scientists and researchers writing papers and doing investigations on this illness, most look at the illness from one aspect of medicine; the aspect they are specialists in.
And in doing so,I think they tend to disregard other facts and things we know about this illness when they form their hypothesis and conclusions. I think they’re missing something and I actually think, call me bold or naïve, that I, a patient who is a laymen, know what that is.
My story is probably similar to yours, just with a twist at the ending, which is that I eventually recovered after all those years of suffering.
Probably like you, I could talk about it for hours, but then, you have heard stories just like mine before. Our stories are all different, but they are also all the same. And it was by focussing on the similarities of those afflicted with ME/CFS and Fibro, that I found my answers and consequently my recovery.
So I can summarise my story in a few paragraphs:
I got sick. I ran around to countless doctors who didn’t know what was wrong with me. I developed more and more severe and bizarre symptoms. I ran around to more doctors and every alternative “solution” I could find. I eventually learned that I had ME/CFS. I started to develop severe Fibromyalgia Pain. And then, when I said “things can’t get any worse”, they got a whole lot worse!
When things were at their worst, I was forced to change something. I decided to find answers myself. It was a very slow process at first, as I was bed-bound at that time. But I was not looking for what would make me feel better or what would be a good treatment. Because I had already spent years buying every promise and treatment out there, and frankly I was already pretty cynical, sceptical and perhaps downright jaded at that stage.
All I wanted to know is :
What I Think Causes ME/CFS & Fibromyalgia
After my decision to find answers to some hard questions, I spent a lot of time reading Not books about the illness, but basic physiology and biochemistry as well as research papers. My background is not in medical science or biochemistry; it’s in physics, specifically optoelectronics and laser systems. So it was all a whole new language to me. However, over a period of time, by applying some sound logic to what I learned, I believe the mystery of this illness unravelled before my eyes.
The word CAUSE! Sounds simple, but actually needs some consideration.
A boy falls and his arm breaks. What is the Cause?
- The impact on his arm during the fall? (do you stop here?)
- His low bone density that causes his bones to break easily? (do you stop here?)
- The wrong mineral composition that led to low bone density? (do you stop here?)
- The specific reason that led to his poor mineral composition?
And so it is with CFS/ME and Fibromyalgia:
- Yes, low cortisol contributes to fatigue, BUT WHY IS IT LOW?
- Yes, killer cell abnormalities lead to poor immune function, BUT WHY ARE THEY ABNORMAL?
- Yes, inflammation contributes to pain, BUT WHY DO YOU HAVE INFLAMMATION?
- Yes, mitochondrial dysfunction and nutrient deficiencies cause metabolic dysfunction, BUT WHY DO YOU HAVE MITOCHONDRIAL DYSFUNCTION AND NUTRIENT DEFICIENCIES?
- Yes, methylation creates problems with neurotransmitter production and countless other processes, BUT WHY DO YOU HAVE METHYLATION PROBLEMS?
- Yes protein deposits on nerve ‘gates’ may cause fibromyalgia tender points, BUT WHY WOULD WE GET PROTEIN DEPOSITS?
In order to really identify a “CAUSE”, surely we have to look at the ROOT CAUSE. The reason for the problem, the problem that causes ALL OTHER PROBLEMS. The problem that leads to ALL the symptoms.
I recognised that there must be a reason behind this illness. Yes, we are all different, with different stories of how we got ill. With different symptoms. And even with different stories of how we recovered (those of us that do so). But there is still so much in common.
It appeared to me that certain things need to be in place to make sure that “the cause” of this illness was the real McCoy. This is not a perfect list, and I am open for some better criteria, but for me these were a good start:
1. Does it explain the symptoms?
2. Does it explain why certain treatments work?
3. Does it explain why certain treatments don’t work?
4. Does it explain why people recover despite using different treatments?
5. Does it explain how people get sick in the different ways?
6. Does it explain why treatments that work to recover some people, don’t work for others?
7. Is the explanation congruent with the vast majority of the research and people’s experience with the illness?
Because the way I see it, most of the explanations out there of what causes this illness, don’t really stack up when you ask even just a few hard questions. That is not to say they don’t have value. In fact, they are often important pieces of the puzzle in explaining the dynamics of the illness and the symptoms. But nonetheless, I believe that all but ONE are secondary dysfunctions.
The Various Hypotheses: Are They All Right? OR Are They are All Wrong?
I don’t really think that the cause of this illness is a mystery at all (after I completed my hypothesis, I found researchers all over the world that in essence describe large parts of the central theme of my explanation)
The Big Clue
I believe the biggest and most glaringly obvious clue regarding the cause for ME/CFS and Fibromyalgia Syndrome is the almost RIDICULOUSLY LARGE number of problems that occur.
List of Common Symptoms
- severe fatigue
- loss of muscle power
- tenderness or pain in distinct locations on the body (fibromyalgia symptom)
- flu-like symptoms (including tender lymph nodes, muscle aches, sore throat, headaches, nausea)
- gastrointestinal disturbance
- low-grade fever
- depressed immune system leading to recurrent infections (more prominent in CFS & CFIDS)
- mental processing problems often described as ‘brain fog’
- unrefreshing sleep
List of Other Symptoms
Whilst some regard the above list to be the core ME/CFS/FMS symptoms, there are actually many others. These include but are not limited to:
- orthostatic hypotension – when a person’s blood pressure falls as they stand up and momentarily feel dizzy, nauseous, have dimmed vision or numbness and tingling
- the need to urinate, often along with unquenchable thirst
- heart palpitations and chest pains
- muscle twitching described by some people as jolts or flashes
- chills and cold extremities
- significant change in weight
- decreased libido
- morning stiffness
- alcohol intolerance
List of Psychological CFS Symptoms
- mood swings
- emotional “flattening”
List of More Obscure and Strange CFS Symptoms
- strange smell sensations often described as ammonium
- allodynia – which is when your skin hurts to be touched
- paresthesia – which are sensations such as itching, numbness, tingling, burning or a feeling that something is crawling on you
- hypersensitivity to sound and or light
- profuse sweating
- multiple chemical sensitivities
- electromagnetic hypersensitivity
Given all these symptoms it’s no wonder that some people don’t think this is a real disease.
In my view, there are clearly only possible 2 explanations that really explain ALL these symptoms:
- We are all in a mass conspiracy of COMPLETE hypochondriac insanity (this has been the preferred diagnosis of some doctors for many years) OR
- This illness is a dysfunction of the ONLY system that controls or influences EVERY system in the whole body, the Autonomic Nervous System(ANS)
Now I hope we can all agree to dismiss the first option without discussion.
The Key Player in Chronic Fatigue Syndrome – the Autonomic Nervous System
I make the case that this ANS dysfunction, which can clearly be observed, explains why all the dysfunctions occur, why the different treatments work, why people get sick in such different ways and recover with such different treatments. It explains the symptoms as well as the peculiar commonalities and histories amongst people with this illness. Why?
Because it affects every system in your body. Because it’s involved in pain sensation, it regulates the immune system, heart rate, blood flows to every organ in your body, blood volume, your digestion, the saliva in your mouth, your temperature regulation, your ability to exercise. . Problems like immune dysfunction, oxidative stress, toxic accumulation, cellular dysfunction can all be linked to a dysfunctioning ANS.
The autonomic nervous system (ANS) is the control station of our body. It affects everything from heart rate, respiration and digestion to perspiration, salivation, urination and pupillary dilation and sexual arousal and it largely functions subconsciously. The main homeostatic regulator in your body; it gets you ready to meet the challenges of the world and then helps you repair your wounds afterwards…and it’s not working the way it should in ME/CFS/FMS.
People often divide it into two subsystems; the parasympathetic nervous system (rest and digest) and the sympathetic nervous system (fight or flight). But the function of the ANS is complex and works both neurologically as well as hormonally.
For example, the ANS dysfunction can be directly linked to the problems of:
- too low cortisol (usually in the morning) or too high cortisol (often at night), as the ANS directly controls these levels via the Hypothalamus and Pituitary glands;
- immune dysfunction, as too much cortisol can halt the maturation of white blood cells and also suppresses the release of the interleukin messengers. It can even shrink the thymus gland and destroy white blood cells;
- excessive pain, as the brain centres dealing with pain perception are directly linked with the limbic brain and the ANS, as well as excessively long term tension and fibrous tissue accumulation in muscles and nerves possibly occurs from overactive sympathetic activation;
- gut dysfunction, because the gut is directly regulated by the ANS which literally can completely stop or flush the digestive system/process;
- neurotransmitter levels which are directly stimulated by the ANS.
But the ANS dysfunction can also be indirectly linked to problems of:
- methylation which can become dysfunctional as a result of excessive oxidative stress through excessive sympathetic arousal, gut dysfunction and the consequent glutathione depletion (a vicious cycle here);
- nutrient deficiencies which result directly from the ANS dysfunction that affects mineral levels via the adrenal axis, but also by the malabsorption due to gut dysfunction.
The list goes on and on. And to make matters more confusing, some of the secondary dysfunctions cause further dysfunctions, some of which can also perpetuate in their own right if not addressed. It becomes messy and confusing.
In my view, this dysfunction of the ANS goes way beyond an overactive sympathetic arousal or a dysfunctional HPA axis that some people suggest. It is a dysfunction and hence not regular or steady in nature and it not only affects many other hormones besides those produced via the adrenal axis; it also is essentially a nervous system dysfunction, so it is neurally mediated.
A Free Copy
If you’d like to learn more about this theory and my recovery you can get a free copy of my book “CFS Unravelled” (over 250 pages) This book has taken me years of research and writing and more hours in front of the computer until the early hours of the morning, than I care to remember. My hope is that it will assist some people in their recovery.
Amazon allows me to make the book free for a number of days and hence it will be Free from the 23rd to 25th of February 2013, right here. It can be read on ANY Kindle device, PC, tablet or other computer device. For a complete list of reading apps – see here.
A Video Explanation
I’ve also produced a 40 minute movie that summarises what I believe is happening in ME/CFS. You can access to it via my website here.
Please realize, that I don’t believe in a single magic pill treatment for all. I offer an explanation that I think fits and a framework which will lead people on their own unique pathways. But I do think that focusing on the ANS dysfunction as opposed to just the secondary problems is critical because in my view, if the ANS dysfunction is not the focus of recovery and is not corrected, then any reduction in symptoms and other bodily dysfunctions will only be temporary. That’s why I speak about the importance of setting goals and creating an action plan.
I’ve recovered using the information and strategies mentioned in this book and I hope others will benefit from what I’ve learned. My hope is that 2013 is the year we all experience personal breakthroughs with chronic fatigue syndrome and fibromyalgia.
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