The Science
What Causes The Condition* & The Lack Of Consensus
One of the biggest challenges in researching the condition*, is that there is such a large and varying array of symptoms and dysfunctions. This creates a large and varying body of scientific research that is very much disconnected. And the focus of most of the research is by experts in their respective fields of medicine investigating a particular angle or treatment application.
The result of this, is a lack of consensus and even though ME/CFS & Fibromyalgia have been described as a neurological conditions due to the many neurological symptoms and the observed neurological dysfunction, the cause is often still described as being unknown. In fact, with the focus usually being on symptoms to identify the condition, many people still view these conditions as separate illnesses.
Whilst POTS is recognised as being dysautonomia, other disorders like Multiple Chemical Sensitivities (MCS) or Electromagnetic Hypersensitivity (EHS) are often described as being psychological in nature or a somatoform disorder. There are also a number of other diagnoses of this condition* that fall under this spectrum of illnesses.
The ANS REWIRE program is strongly based on the premise that this condtion is multi-systemic illness with a neurological dysfunction as the central driving mechanism.
For Fibromyalgia, it has now been widely recognised that the illness involves the Central Nervous System (CNS) and is a central sensitization syndrome. In fact, the National Institute of Arthritis and Musculoskeletal and Skin Diseases now supports researchers to understand why people with Fibromyalgia have increased pain sensitivity.(1)
Even though the mechanisms behind pain has been well researched, when we look at the rest of the syndrome (ie. ME/CFS), the inherent complexity has resulted in a lack of consensus regarding the driving mechanism. Whilst the World health Organisation (WHO) has classified ME/CFS as a chronic neurological condition, there still remains controversy and this decision hasn’t been accepted by everyone working in the field.
This is despite the fact that dysautonomia, the dysregulation of the Autonomic Nervous System (ANS) has been clearly observed, measured and discussed by countless scientists (2)(3)(4) (note: you can scholar google ME, CFS, Fibromyalgia, POTS, MCS + heart rate variability, orthostatic intolerance, dysautonomia, classical conditioning – for a large range of research papers spanning several decades).
* The Condition:
There are a large number of separately identified illnesses, diseases or syndromes, some of which go by multiple names, that we identify as having the same root cause and hence identify as the same illness.
This condition is referred to in this website as "ME/CFS/FMS" or "ME/CFS & Fibromyalgia". Here are a list of diseases and disorders that we believe falls under the same umbrella:
Other conditions that likely also sit along the same spectrum and may also benefit from this approach include:
including conditions that involve secondary dysfunctions /infections such as:
Please note that ‘chronic fatigue’ is a symptom and not a condition. Chronic fatigue is a symptom of ME/CFS/FMS but can also be a symptom of many other conditions, including some of the secondary dysfunctions of ME/CFS/FMS. Chronic fatigue, like any other symptom needs to be investigated by a medical doctor to determine the cause. It is important that all people experiencing symptoms be thoroughly investigated by their Doctor to allow an appropriate diagnosis to be made.
What is Dysautonomia?
Dysautonomia (or autonomic dysfunction) is a term for various conditions in which the Autonomic Nervous System (ANS) does not work correctly. The ANS is in the brain and unconsciously regulates the body’s vital functions to maintain homeostasis and to allow the body to respond to physical demands or infection and injury and to rejuvenate to maintain ongoing function and health. Dysautonomia can lead to a very large range of symptoms and secondary health problems.
Why Dysautonomia & What Does That Mean?
I personally arrived at the inevitable conclusion that a type of dysautonomia, a dysfunction of the ANS is at the root of this condition, because all trails of the countless symptoms & dysfunctions led to the ANS. This is not surprising, because the ANS is the control system that regulates all the bodily functions and systems. But because it lowers immunity and triggers many secondary dysfunctions, the picture quickly gets complicated and confusing. In my book CFS Unravelled, I gave a synopsis of how I arrived at this conclusion and how it ties together not just how all the symptoms are generated, but also how and why people get sick in so many different ways, and why they recover with different methods.
Besides the fact that dysautonomia has been measured in people with ME/CFS/Fibromyalgia/POTS/MCS in a research setting, the staggering list of symptoms is clearly the biggest clue that ANS dysfunction is occurring.
Another significant clue pointing to dysautonomia has to do with the onset of the illness, which involves a physical or mental stressor (6), or usually a combination of both. Hence the large range of initial triggers including physical accidents, infections, immunisations, child birth, surgery, and exercise as well as life events causing emotional stress, can be involved.
Consequently, many researchers have come to the conclusion that dysautonomia is involved (5) (7) and could even be used as a diagnostic tool in a clinical setting (2).
What Is A Stressor?
A stressor is stimulus that causes stress to an organism. It may be a biological agent (eg. a virus or bacteria), chemical exposure, environmental condition (eg. hot or cold or physical injury), or other external stimulus that causes stress.
The word stress is often misunderstood because of its use in relation to mental stress. Stress is the body's response to deal with the challenge of a stressor and interferes with the normal physiological equilibrium of an organism.
I have been a practicing clinician treating anxiety and stress disorders for over 40 years and have researched fibromyalgia for more than 20 years. In my time I have spoken with dozens of top fibromyalgia clinicians and researchers and I am convinced that the conclusions Dan Neuffer has arrived at are shared by top researchers who don’t harbor a bias.
Dan’s model of a stuck stress response system makes the most sense and one used by people I know who have recovered. What remains is a cohesive protocol to calm the over active sympathetic nervous system and restore homeostatic systems of balance."
Somatoform, Psychosomatic or Something Else?
Unfortunately, due to ignorance and lack of clear diagnostic testing methods, many patients with this illness over the decades have been falsely assessed as “having nothing wrong with them”. This has not only been upsetting for patients, but also left them with no treatment options and labelled as suffering a psychosomatic illness (in essence this suggests that there is nothing wrong and it is all in their mind, similar to a hypochondriac). The evidence of severe physical dysfunction in multiple systems and the very real physical symptoms are obviously clear and contrary evidence that this is NOT the case.
This has created a strong backlash in the patient community about any research from the field of psychoneuroimmunology. Whilst much excellent research has been performed in the medical community, clearly demonstrating psychosomatic connections, this has not been well received, probably largely due to the history with somatoform suggestions in the past and lack of understanding of the word psychosomatic.
A psychosomatic connection is where mental factors make the illness worse or even cause them. A classic example of a psychosomatic event is a shock or accident that leads to somebody having a heart attack. This is obviously a real medical event and not imagined or solely caused by the psychological stress experienced. Other diseases prone to psychosomatic influence include psoriasis, eczema, irritable bowel syndrome, high blood pressure and even cancer. The reason for this is the role of the nervous system and the immune system that is regulated by it, which directly impact the disease process.
However, whilst undoubtedly a psychosomatic connection exists, it is not necessarily the primary or sole driving factor in the perpetuating pathogenesis of ME/CFS/Fibromyalgia. This is because physical stressors also trigger the illness, not just initially, but also ongoing. These secondary problems include gut dysfunction, mitochondrial dysfunction, hypoglycaemia and many other problems experienced and observed with this illness.
This is why dysautonomia more accurately describes the condition. Further, whilst many of the secondary dysfunctions and problems can be treated, without addressing the driving factor of the dysautonomia, this usually results in only temporary results and without ongoing treatment, exacerbations can occur during symptom flare-ups.
Similarly, treatments that have led to recovery from the syndrome without treating all these dysfunctions would indicate that many of these secondary problems resolve naturally as ANS function normalises. This has been evidenced by programs developed around the psychosomatic aspects including CBT and various other psychologically based brain training programs.
However, none of these programs can be termed a cure for ME/CFS/Fibromyalgia because whilst effective for a proportion of people with ME/CFS/Fibromyalgia, they do not work for everyone. Whilst this may be due in part to participation rates, given the role of physiological triggers in dysautonomia, it would seem clear that these triggers also need to be addressed as part of the efforts to reset the function of the ANS. This is especially the case where immune suppression has led to heavy infection loads in the body.
Final Comments
With large bodies of research demonstrating numerous dysfunctions in the pathophysiology of ME/CFS/Fibromyalgia, it is easy to get opposing views. However, clearly the numerous dysfunctions including mitochondrial dysfunction, endocrine dysfunction, infection, gut dysfunction, hypoglycaemia, neurotransmitter imbalances, methylation problems, cardiac issues, mineral imbalances and the many other identified issues, all play a role in the generation of symptoms.
Whilst many arguments or theoretical treatments as to the true cause can be made, it is important to take into consideration not just the observed dysfunctions and symptoms of the illness, but perhaps most importantly the events leading up to onset of the illness as well as the range of effective strategies used by people to recover all around the world.
Whilst the classification of the illness as a neurological dysfunction by the WHO as well as other major medical associations and other governing professional bodies and research organisations around world suggests some consensus as to the nature of the illness, more needs to done to clarify this view and generate consensus to translate this into more effective treatment frameworks accessible to people the world over.
The ANS REWIRE program is 100% based on the premise that the illness is a neurological condition with a range of secondary dysfunctions, and that central sensitisation and dysautonomia are the central mechanisms driving the disease process.
References
(1) the National Institute of Arthritis and Musculoskeletal and Skin Diseases – “Questions and Answers about Fibromyalgia – What research Is being Conducted on Fibromyalgia” http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp#h
(2) John Allen, Alan Murray, Costanzo Di Maria and Julia L Newton “Chronic fatigue syndrome and impaired peripheral pulse characteristics on orthostasis–a new potential diagnostic biomarker“ Physiological Measurement, 25 Jan 2012 Volume 33, Number 2 http://iopscience.iop.org/article/10.1088/0967-3334/33/2/231;jsessionid=23C0D1A173AC6E290DCB88CCAA5EA8C4.c1.iopscience.cld.iop.org
(3) Julian Stewart , Amy Weldon, Nina Arlievsky, Karl Li, Jose Munoz “Neurally mediated hypotension and autonomic dysfunction measured by heart rate variability during head-up tilt testing in children with chronic fatigue syndrome” Clinical Autonomic Research, August 1998, Volume 8, Issue 4, pp 221-230 http://link.springer.com/article/10.1007/BF02267785#page-1
(4) De Becker P1, Dendale P, De Meirleir K, Campine I, Vandenborne K, Hagers Y. “Autonomic testing in patients with chronic fatigue syndrome.” Am J Med. 28 Se[ 1998 ;105(3A):22S-26S. http://www.ncbi.nlm.nih.gov/pubmed/9790478 (Abstract)
(5) Jochanan E Naschitza, Daniel Yeshuruna, Itzhak Rosnerb “Dysautonomia in chronic fatigue syndrome: facts, hypotheses, implications” Medical Hypotheses - February 2004 Volume 62, Issue 2, Pages 203–206 http://www.medical-hypotheses.com/article/S0306-9877%2803%2900331-1/abstract (Abstract)
(6) American College Of Rheumatology – “Fibromyalgia - Facts Fast” http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia
(7) Martínez-Martínez LA1, Mora T, Vargas A, Fuentes-Iniestra M, Martínez-Lavín M. “Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies.” Journal of Clinical Rheumatology – Apr 2014, 20(3):146-50 https://www.ncbi.nlm.nih.gov/pubmed/24662556 (Abstract)
Is this programme suitable for fatigue caused by long covid?
Hi Susan
The program is not for symptoms, but for recovery from the range of ‘syndromes’ as described, including Post Viral Fatigue Syndrome.
If you have been diagnosed with that, you are welcome to enrol.
Hello there Dan
It’s so good to return here and have the concentration and wellness to be able to read your explanation about this and find that it all sounds absolutely spot on. I could not do that when I first found your website 3 years ago. I did your program, recovered, gradually returned to full time work and completed my studies. It is so good to feel physically & mentally well and myself again.
Anne
Hi Anne
That’s wonderful to hear – congratulations on your recovery. ❤️???
How much does the program cost?
Hi Kat
Those details are in the ‘enrol here’ tab next to the purchase button!
Hello Dan,
My 13 years old son has CFS/ ME. Do you think he will be able to follow your program or it is designed for adults only. Needless to say my son is very intelligent. I hope it will be suitable for him. Thank you in advance.
Hi Olga
The program is designed for adults only.
It isn’t a matter of intelligence, but rather about maturity and experience to be able to process the concepts presented around the confronting experience of chronic illness.
Some people have tried to do the program themselves and filter it through to their child appropriately, but I have not had feedback on wether this was at all successful.
Hi there, have people recovered from extreme food sensitivities with this program? Thank you!
Hi Ryan
Yes, food sensitivities are quite a common symptom and we have seen people recover from these when they have made a recovery.
However, it’s important to remember that we don’t specifically address symptoms, but rather help people work more effectively with their practitioners for a recovery from the syndrome as a whole.
Hi there!,
I have been looking through the your program and am deciding whether to take the plunge or not. I have dysautonomia with a host of symptoms, however, I would say that the fatigue part is fortunately one of my lesser ones (it is still present, I can mostly only walk, but still have an exaggerated response to exercise).
Am I correct in understanding that this program is addressing/correcting ANS dysfunction overall, rather than just specific “named syndromes”?
To an extent you are right. Many people experience this dysfunctional dysautonomia and get a large range of symptoms, but they don’t quite meet the CFS, POTS or Fibromyalgia criteria for diagnosis (diagnosis is difficult WITH the criteria).
However, if the dysautonomia is due to a physical brain injury or other such identified cause (ie. damage instead of dysfunction), then the program may be less appropriate – although it is difficult to say for certain given that we know the brain is plastic!
Is this evidence-based therapy? If so, please reference the published materials. Thanks!
Hello Bridawg,
I have not had the resources to do a proper study on the program for publishing.
However, I welcome the opportunity to do so in the near future.
Thanks for your query.
The above article is actually referenced! And besides, when looking through the material available on ansrewire and cfs unravelled, u will notice multiple references to the immensity of scholarly and medical studies available on Google Scholar. It’s just with a relatively new area, there is as yet, as the above article pointed out, no arrived-at simultaneously agreed upon conclusion about these conditions in the medical world at large, and as such the coherence and collation of understandings about this vast area is still a work in progress as are innumerable other fields pertaining to health and wellbeing.
Please can you give your views on Somatic Experiencing and its following methods such as Somatic Practice or Organic Intelligence and Integral Somatic Practice? (Peter Levine, Kathy Kain, Stephen Hoskinson and Raja Selvam). They are all bottom up methods that are targeting regulating the ANS. I have been trained in Somatic Experiencing myself.
Hello Xisca
Whilst I have limited experience with such techniques (I have never experienced it or trained in it), based on reports from others it would appear that these are a little similar to some of the techniques I teach in the program. I have had feedback from others that have found these methods very helpful and I believe such techniques can be particularly beneficial for a subgroup of people experiencing ME/CFS/Fibro/POTS. I encourage people to explore these in the program!
Hi,
I have been suffering from dysautonomia for the last six years. My body is stuck in fight and flight mode. I have many other diseases because of it like psoriasis, IBS, neurogenic inflammation, hyperalgesia, skin thinning, bone thinning, low libido, excess weight gain etc. I have gone to many doctors and no one could help me. Meditation helps me for a while. The tone of sympathetic nervous system is so strong that nothing can beat it. I am in so bad condition right now. I feel so hopeless and suppressed. There’s just no hope left.
Hi Pallavi
I am sorry you are having such a rough time – I appreciate how that feels. ?
You can rediscover your hope by hearing how others have recovered in all manner of ways (not just using ANS REWIRE) even though they were severely ill. You can see such stories here: https://cfsunravelled.com/cfs-fibro-recovery-stories/
Hopefully the free intro videos will help you understand how these recoveries are possible. Have you seen them yet?
I subscribed for free videos but I didn’t receive it. I checked my spam folder also.
And I wanna ask you a question is there a hope for dysautonomia sufferers? Can we get fully cured? Is it really possible? Because its hard to believe that it can get cured. I have tried everything and nothing could help me. I’ll waiting for your answer. Thanks!
Hi Pallavi
This program is for people experiencing the list of syndromes listed.
If someone has been diagnosed with dysautonomia, then based on it being ‘unexplained’ or diagnosed as one of those syndromes, the program is designed to help.
Where somebody has a physical injury to the brain like from an accident, then perhaps it is less certain on what is possible.
Please check both your spam and promotional folder – search for ‘neuffer’ to find the confirmation message. The confirmation email has been sent to you a few days ago.
I thought I had POTS, but while waiting for referral I got my CFS on track with your book, meditation, diet, and brain retraining (rick Hanson and Gupta) and my POTs symptoms went away. So many CFS sufferers seems to have dysautonomi. I think your analysis is spot on. Thank you for your great work.
Hi Dan, does your program only help POTS or any form of Orthostatic Intolerance (like orthostatic hypotension or low pulse pressure)?
The program is designed for people experiencing POTS.
POTS is a syndrome, it isn’t just orthostatic intolerance.
The program is not designed for people experiencing isolated symptoms (like orthostatic intolerance) – these usually respond readily to specific treatments.
Sorry what I meant was does it treat all forms of orthostatic intolerance that appear as part of chronic fatigue? You said yourself you had orthostatic hypotension as part of your CFS. I’ve been around the healthrising.org site and it’s pretty clear that many forms of orthostatic intolerance and low blood volume is present in a great deal of CFS and ME patients and is causing symptoms. Your program says it helps CFS and ME, ergo it helps people with blood volume and blood pressure issues yes?
POTS is actually a type of orthostatic intolerance. Orthostatic intolerance is just an umbrella term for different things that can go wrong when standing. See this article by Dr. Bell: https://www.healthrising.org/forums/resources/dr-bell-on-understanding-orthostatic-intolerance-in-chronic-fatigue-syndrome-and-fibromyalgia.238/
Kind regards
I think that perhaps my earlier response wasn’t clear enough for you.
People experience the large range of symptoms due to experiencing the SYNDROME.
“Fixing” and treating these symptoms often produces only poor results, and also often produces results that don’t last. This is because whilst the syndrome is still present, the secondary dysfunctions usually return (not always) or other dysfunctions arise.
So the program is not about fixing/treating symptoms – it is about recovering from the syndrome as a whole. When people make such a recovery, the symptoms and dysfunctions you ask about abate.
I am 71 years old man. I have struggled with Fibromyalgia for 18 years. Now I have advanced case of it. I have studied numerous literature on FM and have spent almost $150,000 chasing solution all over the country.
Almost 3 years ago I came to same conclusion as writer of this article: yes, I feel neurotransmitter imbalance as at the root of an ongoing case of Fibro.
Hi Henry,
It sure is a frustrating journey and a really money pit, often with little to show for it. Many of us have experienced that.
The point of the above article is to focus us on what is causing the issues, including these neurotransmitter imbalances. Of course, with such imbalances, nervous system dysfunction is perpetuated, so it becomes a bit of a cycle, which is why we like to focus on doing both neural retraining as well as physical healing strategies to encourage such dysfunctions to resolve.
Glad the article resonated with you, thanks for your comment.
Dan