What Causes ME/CFS/Fibromyalgia & The Lack Of Consensus
One of the biggest challenges in researching ME/CFS/Fibromyalgia, 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 has been described as a neurological condition 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.
The ANS REWIRE program is strongly based on the premise that ME/CFS/Fibromyalgia 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 or Fibromyalgia + heart rate variability, orthostatic intolerance, dysautonomia – for a large range of research papers spanning several decades).
The condition discussed and referred to in this website as ME/CFS/FMS or ME/CFS & Fibromyalgia includes Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Systemic Exertion Intolerance Disease (SEID), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Post-viral Fatigue Syndrome and Fibromyalgia Syndrome (FMS). It also includes the conditions identified as Multiple Chemical Sensitivities (MCS), Electromagnetic Hypersensitivity (EHS) and Postural Orthostatic Tachycardia Syndrome (POTS).
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 ME/CFS/Fibromyalgia, 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 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 ME/CFS/Fibromyalgia 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 somatoform disorder (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 ME/CFS/FMS 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.
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.
(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)