Disclaimer: The material presented is educational and is not meant for treatment or diagnosis. Please consult your healthcare provider before starting any treatment.
Author: Patrick Bayer C.N.C. - all rights reserved
Some people on a forum devoted to M.E. asked me to summarize both the research and treatment I have accumulated over a course of a long time of research. I estimate that to be around 25k hours in both reading research papers, and my countless hours of observation and treatment. My M.E. had beginnings some 40 years ago and accelerated about 25 years ago. I went through multiple phases of M.E. and suffered Severe M.E. for many years being completely bed ridden for 20 hours per day to working 15 hours per week. Currently, I am working full time and lead a more functional life. I continue on my core treatments and continue to progress.
(Update May 2024: More evidence is coming out in published medical articles that butyrate may be one of the central actors in the auto-immune diseases which include M.E. Butyrate is a SCFA (Short Chain Fatty Acid, there are other SCFAs beside butyrate) that is produced by particular bacteria gut). This molecule supports the colonocytes which are key molecules in the gut that provide barrier integrity. SCFAs also migrate out the gut and are distributed body-wide, they provide power to the cells, thus improving key metabolic factors.
Barrier integrity means that the intestinal wall is sound. Without the structural integrity, then chaos ensues. Inflammatory cytokines are produced in greater amounts without the integrity. Cytokines are generally destructive and have systemic wide activity. This means that other body systems are affected such as the cardiovascular system, endocrine, neurological etc. Most diseases, particularly degenerative have inflammation at the core.
There are particular bacteria that naturally produce butyrate but cannot thrive in a high inflammatory condition, thus, butyrate production falls which leads to more inflammation. This high inflammation also impacts metabolic processes, in particular the mitochondria. With poor mitochondria function, comes less energy in the cell, without proper energy production in the cell, then other systems become adulterated such as the detoxification systems and so the cycle continues).
M.E. would be best described as the symptoms as being flu-like. To give a better picture of what M.E. patients go through, please imagine what it would be like to wake up with the flu for 20 years. Now anticipate what it would be like to run a business, a life or just daily activities with the flu.
M.E. stands for Myalgic Encephalomyelitis which is also known as Chronic Fatigue Syndrome, a recognized set of symptoms by leading authorities including the C.D.C. It is classified as many things including an auto-immune disease. This disease attacks many areas of the body such as the endocrine, immune and neurological. It is perhaps best to explain that the measurable energy output (Krebs Cycle) is low to very low. Energy is a valued and necessary commodity. Energy is needed to perform tasks and these tasks can be many such as work in terms of economic survival to the power necessary to perform the myriad of metabolic functions in the body. Energy is necessary for things to function; this is basic information.
The medical system has largely been unsuccessful in helping those with M.E. which forces patients to seek routes not commonly taken. Sadly, M.E. along with other disabling diseases receive little to no funding while the lion's share of research money is given to H.I.V ($34 Billion for 2017). What research has been done is little to no help to those who suffer with this disease. Many M.E. victims also suffer from societal persecution with accusations ranging from mental illness, to lying, to being a coward and a whole host of insensitive and ignorant statements. I find it both sad and disheartening that an "educated" and "civil" society would stoop to such nonsense but stupid is as stupid does. It is a very taxing disease in many ways, many doors are closed and so many obstacles are placed in the way. I made strong decisions to drive around the obstacles and not allow those to stop me in spite of the many refusals to help me.
M.E. has its roots in Western living where chemicals and other short cuts are a normal part of life. Western society has dis-valued others in order to worship at the altars of materialism and power. This leaves its victims in its wake.
M.E. is a multi-pronged problem that is rooted in biochemical dysfunction. M.E. is not a behavioral issue, a mental issue or an emotional issue, it is a biological issue unless you reference out-dated and poorly researched information.
Dr. Hooper, a leading M.E. doctor stated this:
Undoubtedly, the perverse use of CFS, to impose a psychiatric definition for ME/CFS by associating it with fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those with this illness. (J Clin Pathol. 2007 May; Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research).
Bestselling author, Laura Hillenbrand stated "This illness (M.E.) is to fatigue as a nuclear bomb is to a match -it is an absurd mis characterization".
M.E. is a hyper-complex problem with many potential starting points (etiology). Many theories exist but I think they can be categorized in easy-to-understand concepts. With this complexity, there is many different etiologies so we cannot assume that what caused a problem for one then the remainder must have this same problem. That is broken logic in my opinion.
M.E. would best be described as being a problem producing energy, this is also known as the Krebs Cycle. Energy production starts at the cellular level which means that it is the cells themselves that produce energy. The hierarchy of the body starts with the cells (lowest level) then migrates to tissues, organs, organ systems and finally the whole organism. There can be a number of factors that disrupt cellular energy in which I will touch on below.
Observations.
Western medicine looks for a single cause, single solution problem whereas Eastern medicine looks at the body as a whole. I will take anxiety for an example. In Western Medicine they would simply say you have anxiety and give a pill for this. In TCM (Traditional Chinese Medicine or Eastern medicine) they might diagnose you with liver stagnation. In the minds of TCM, they would consider liver stagnation to be the causative factor of the anxiety which would be just one of the symptoms of liver stagnation.
So Eastern medicine views the whole system, where one situation can affect the entire body. The idea is that imbalances in the body tilt the whole system, so they try to harmonize the body. TCM largely depends on un-kinking energy blockages (acupuncture or acupressure) and to use botanicals to support the pathways that are blocked. They simply correct the imbalance which makes the system function normally again.
Research Mesearch.
Most of the research is directly towards either the immune system or metabolic pathways that are blocked. One of the key things I have learned about research papers is that the writers of these conceptualize a theory then use supportive evidence to build their case. This could be good or bad. Good in the idea that they are correct in your situation, bad in the respect that this may not be the case for you. In my opinion, the papers can be shallow in that, yes they have identified the problem and no in that solutions are not provided. No problem can be solved unless it is identified and a plan to unravel the problem.
The problem is that this disease is far too complex to summarize in a single theory. An example of this would be that the etiology of M.E. is due to Epstein Barr virus. This was an early idea and it built strength for sometime until they realized it was not entirely true for all patients.
The clinician needs to make several conclusions first. For many the onset of M.E. started with flu-like symptoms while others developed it without this specific onset. This is a very basic foundational diagnostic in which the first would indicate a strong pathogenic invasion while the second situation may indicate 'softer' issues such as nutrient deficit, a mild viral condition or perhaps a pharmaceutical interaction.
This differentiation would help direct the appropriate treatments. Any strong pathogenic invasion is very problematic and must be addressed. These strong immune reactions change the terrain of the body quite drastically.
MicroCirculation.
This is a newer concept and is gaining traction. The idea is the blood becomes "sticky", the official name is platelet aggregation. The blood becomes sticky due to immune system activation. When the blood becomes sticky then circulation of vital nutrients, oxygen and immune factors are stuck in a traffic jam. They need to be mobilized throughout the body.
There seems to be a few ways to help the platelets loosen up. Some are advocating the use of certain enzymes (serrapeptase, nattokinase and lumbrokinase). Enzymes do work and these seem to break up the sticky mess. The other is the use of anti-coagulants such as Plavix with one baby aspirin.
Metabolic Pathways.
There is quite a bit of information/studies done on aberrant metabolic pathways that are found in CFS/ME. Pathways such as BH4, Itaconate Pathway and up to 20 pathways that are affected.
Research Robert Naviaux stated this:
“Despite the heterogeneity of CFS, the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients,” said Naviaux. “And interestingly, it’s chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability.”
Source:American ME Society ammes.org
There is no question that these pathways are defective, unfortunately, the origins of these defects are murky. It is my belief that immune activation is at the core either through pathogenic invasion and/or environmental toxins. The immune system has a very strong pull on all systems of the body. You can read more here
Inflammation Model.
The inflammation model is used to describe a myriad of degenerative diseases including M.E. Inflammation is the end result of immune and endocrine activation. Inflammation destroys via oxidative stress. Oxidative stress is the enemy and failure to control it results in cascading downwards. Inflammation can have many starting places, from trauma, infections, poor nutrient quality, emotional stress and so on.
Inflammation puts stress on the body and wastes nutrient stores. If you do not replace the core nutrients then the body cannot repair the damage. Antioxidants repair damage. Antioxidants are naturally produced by the body (glutathione, Superoxide dismutase and catalase) which all depend on raw materials (nutrients) to be produced. Exogenous antioxidants such as Vitamin C and plant-based antioxidants help the body to cope with the stress (inflammation).
Oxidative stress attacks the cell membranes. Several research papers have shown the deleterious effects of oxidative stress on the cell membranes. The vitality of the cell membrane is key for proper functioning of the cell and damage reduces the energy output (Krebs Cycle). The cell membrane is largely comprised of healthy fats and is protected by antioxidants.
Where does oxidative stress come from? The three likely sources are from immune activation, environmental toxins and psychological stressors. The immune system is likely elevated in M.E. patients due to pathogenic invasion(s). Oxygen and nitrogen compounds are formed by the immune system and these chemicals are highly damaging.
Reducing oxidative stress comes from the use of antioxidants. Oxidants cause damage while antioxidants heal. Antioxidants come in many varieties, Vitamins C and E* are the most well-known The body produces antioxidants (glutathione, superoxide dismutase and catalase) which are dependent on raw nutrients to be produced. Other antioxidants come from plants, so a diet that includes organic and preferably raw will help. Most spices have tremendous capacity in the antioxidant potential. I use bulk turmeric, Ceylon cinnamon and paprika (or cayenne) in a daily mix and drink herbal teas.
*Vitamin E as D-Alpha (not dl-alpha which is synthetic) and Vitamin C as Quali C or one that is minimally processed. Many vitamin C products have fillers and additives which are not good, in fact they can cause more problems.
Nutrient model.
The cells are very dependent on nutrients to do their thing. Every enzyme, protein assimilation, cell/tissue/organ function is dependent on nutrients. Nutrition is largely comprised of minerals, vitamin co-factors, healthy fats and adequate protein (amino acid). Deficiency or excess states will inhibit the proper function of the cells. And remember the cells are the foundations for tissues, organs and so on. The Krebs Cycle (energy) is dependent on nutrients to being robust.
Magnesium is just one of the vital nutrients and deficiency states of this will cause a myriad of problems, such as a dysfunctional immune response, cardiovascular issues, low production of glutathione and enzymes and the list goes on. Dr. Mildred Seelig was a comprehensive researcher of magnesium and wrote many papers that can be found at mgwater.com. One paper she authored was on the role of magnesium and M.E. http://www.mgwater.com/clmd.shtml.
Infectious Organism model.
Pathogens make people sick. This sounds very childlike, but people sometimes have a difficult time understanding the nature of pathogens, doctors seem to have a hard time understanding this, for what reason, I do not know. Pathogens cause a wide swath of problems from Lyme disease, the flu, rheumatoid arthritis, cancer, malaria and so on. Pathogens can kill.
This is the predominant model that I have worked on. Viral, protozoa, rogue bacteria, parasites yeast/fungal, unknown or stealth pathogens (l form bacteria, mycoplasma etc). This means that say one particular virus could be causing the problem. This was an outdated model years ago thinking that Epstein Barr virus was the only culprit. There are a multitude of viral agents that have been identified as a causative factor of M.E.
I had CMV which is in the herpes family, this was a troubling virus for me. Other herpes family viruses such as HHV6, HHV7 etc have been correlated to M.E. and other auto immune diseases. The problem is with testing in that the doctor may have a suspicion of what organism in which they guess. There are many types and subtypes of viral agents that they may not test for and undiscovered ones as well.
Research continues to point in the direction of immune activation as being a culprit in M.E. Most articles reference the T cells being activated. T cells are specific immune cells that are involved protection from pathogens. With any immune activation then metabolic changes occur which inhibit energy production.
With strong immunity kicking in, then the metabolic rate changes. One such enzyme affected by this metabolic change is pyruvate dehydrogenase (PDH). This enzyme is necessary for energy production (Kreb's cycle) and impaired levels are found in M.E. patients. Not only does PDH impairment show up in energy levels but muscle burn and neurological disorders.
Dr. Fluge is a known M.E. researcher and had this to say about PDH impairment:
"I think that at present our data are primarily telling us something about the ME/CFS disease. Our findings indicate an impaired function of the PDH enzyme complex, resulting in reduced flux of pyruvate to the [tricarboxylic acid (TCA)] cycle. Increased lactic acid accumulates upon limited exertion, and there is a compensatory use of alternative substrates to fuel the TCA cycle. So, the results indicate an impaired mitochondrial PDH complex function, we believe induced by the immune system,"
There is a hierarchy in pathogens. This means that some pathogens can lay dormant in the system in which they are symbiotic (do not cause problems) while others can be aggressive which causes a myriad of problems.
The gastrointestinal tract is one area to look for infection and Dr. Leo Galland states this is the first place he looks for infection, particularly parasites. But parasites are not the only problem in the gut, rogue bacteria can harbor the gut as well.
The microbiome is the community of all the organisms living in the gut which provide more support to the body than ever thought. Most of the immune system (70%) is present in the gut. Dr. Galland thinks there is a reason for that in that the GI tract is the most vulnerable to infectious organisms. Fungal and yeast strains can be present there as well along with viral agents.
Pathogens manufacture toxins which makes cells sick. Pathogens evoke an immune system reaction which involves a myriad of chemicals, processes etc and these chemicals circulate in the body which causes further damage. Cells membranes become damaged which disrupts normal cell functioning and energy in the cell diminishes. With the diminished energy output then the cell cannot function correctly which creates a domino effect.
NEI SuperSystem.
The NEI SuperSystem is one of my favorite studies. The initials stand for Neurological, Endocrine and Immune. These 3 systems are intertwined meaning that they can help one another and conversely negatively affect the others. For instance, constant stress (neurological) will influence the endocrine (adrenal activity) which weakens the immune system. There is a hierarchy in the body and the immune system has the highest priority.
In most cases of M.E., the immune system has the highest gravitational force (assuming that the primary problem is pathogenic). With this strong force then the other systems become subordinate and dysregulated.
Cell Signalling.
Cell signaling is exactly what it says which means there is a complex network of signals in the body. These signals control the body much like a traffic light directs traffic. If there was no traffic signals then chaos would ensue. However the signaling in the body is much more complex than a traffic light since it involves a myriad of processes such as neurotransmitters, hormones, immune signals (cytokines) and much more. Research has shown that each of these classes of signals has the potential of affecting other signalling systems. For instance, stress triggers endocrine and the immune system.
The key to taming M.E. is to find the errant signalling system and then the rest should follow, however this is easier said than done. M.E. is like a big traffic jam due to a stalled semi-truck that is blocking the intersection, move the truck out of the way and the jam will be fixed. Traditional Chinese Medicine offers a glimpse into this complex world by attempting to balancing the body. Proper nutrition plays a key role in these signalling pathways for without it, the body becomes dysregulated. Without targeted nutrition then the chaos will continue or to worsen.
Neurological.
There have been repeated studies concerning the role of the psychological and the biological systems. Any form of stress triggers the neuro-endocrine system. It is almost impossible to avoid stress in this day and age, it comes at us in many different forms and directions. Trauma, abuse, financial and relationships can be some major stresses along with all the other things that gnaw at us. These events trigger the neurological pathways which in turn stimulate endocrine responses. Cortisol is one of the players in these events which can have deleterious effects after prolonged periods of release. There are known studies which show that cortisol has a negative impact on immune health. Activation of dormant viruses may occur as well as new infections.
One of the bigger omissions in neurological health has to do with the role of the immune system. It is generally accepted that the mind affects the body but the opposite is true as well: the body can influence the mind. For instance, immune activation releases powerful chemicals that change neurological behavior.
Newer research is showing that certain pathways are being block by wrong organisms in the gut. The pathway is kynurenine, psychiatric disorders result from this blocked pathway such as schizophrenia, bipolar, Autism, Alzheimer's.
Immune Health.
The immune system is comprised of a complex system of different components. Toxins, stress, improper diet and nutrient deficiencies can weaken the immune response. A weakened immune response puts us at risk for acquiring new infections or having dormant viruses suddenly reappear.
Endocrine Involvement.
The endocrine system plays key roles in regulation of cycles in the body. It is involved in reproduction, sleep wake cycles, energy production, inflammation and so on. However, the endocrine system is involved in immune reactions and the neurological system. Many studies have shown that the HPA axis is deeply involved in M.E. The HPA axis stands for Hypothalamus, Pituitary and Adrenal. There are more aspects of this but I will shorten this and focus on the adrenals. The adrenals are the body's pharmacy, they produce some 50 different hormones. These hormones act on the cells to change their chemistry. One well known hormone is cortisol. Cortisol has many physiological actions, one of them being a natural anti-inflammatory.
Continual activation of the adrenals leads to adrenal fatigue. With this draining of the adrenals then the body cannot produce adequate hormone output which then weakens the resistance of the body. A weakened endocrine response also changes neurological and immune function. These three systems (endocrine/immune/neurological) are closely tied to one another and each can influence the others.
The endocrine system is a dependent loop meaning that each of the endocrine glands have influences on other glands in the network. This follows much of Traditional Chinese Medicine models which I discussed previously, in other words, imbalance causes imbalance. The HPA axis (hypothalamus, pituitary and adrenal glands) plays a key role but there are other networks that are affected such as the HPG axis which is hypothalamus, pituitary and gonadal systems. Androgens play a key role in immune support and many people with M.E. have problems with either testosterone or estrogen. In later stages, these become very low mostly due to exhaustion.
The endocrine system is a dependent loop meaning that each of the endocrine glands have influences on other glands in the network. This follows much of Traditional Chinese Medicine models which I discussed previously, in other words, imbalance causes imbalance. The HPA axis (hypothalamus, pituitary and adrenal glands) plays a key role but there are other networks that are affected such as the HPG axis which is hypothalamus, pituitary and gonadal systems. Androgens play a key role in immune support and many people with M.E. have problems with either testosterone or estrogen. In later stages, these become very low mostly due to exhaustion.
Toxin model.
Toxins are poisons. Poisons are poisons because they damage cell function. Toxins come in many shapes and sizes. For instance, we are all familar with arsenic, it is a strong poison and can cause serious problems in very small doses but what about the other 800 or so chemicals that are produced? True, many of them do not have the same effect (potency) as arsenic but what if we are exposed to them day after day for say 20 years. Without proper functioning of the detoxification systems then they can accumulate and damage normal cell functioning.
Some will argue that the body is adept at handling these chemicals but what if the body is damaged? The body has an elaborate set of processes that can handle toxins, take glutathione for one example. Glutathione is a dual acting chemical in which it both supports immune function and assists in detoxification. Production of this chemical can diminish with nutrient deficiency and immune activation.
Other Considerations.
Other studies have shown correlations between auto immunity and vaccinations (ASIA) which is controversial in some circles, however some leading researchers in auto immunity have proven correlation.
Epigenetics (genetics) is a new field of study and researchers are finding correlations with genetics and M.E. A recent study looked at over 9,000 genes and found defects in 16 specific genes that correspond with T cell regulation (immune), neuronal (neurological) and mitochondria (energy)* .
(*J Clin Pathol. 2007 May; Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research)
With epigenetic studies, there has been proof that supplemental with nutritionals/botanicals can improve genetic defects and provide support for weakened metabolic functions in M.E. patients.
I have taken the most commons attributes of the etiology of M.E. and in closing would like to state that if the etiology of one of the above categories may well trip the breakers of the others. For instance, an issue of trauma could set off neurological responses which in turn trigger the endocrine system and with that the immune system becomes disrupted. With this disruption then a viral situation may set foot. Then the immune response will begin an inflammation model which could deplete glutathione stores which then further weaken immune responses and the ability to detoxify.
It is important to target the right areas in order to rebalance the body and they must be done in the correct order. Clinicians must be well versed in all of these areas in order to be effective. The body is an amazing creation and given the right materials, it has the ability to return to a state of balance.
A list of my studies can be found here C.V.
What treatments I have done that enabled some recovery Recovery
My Posts on PhoenixRising (M.E.) site
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