1 – The Root Cause of MECFS Fibromyalgia & POTS

So what is the root cause of ME/CFS, Fibromyalgia and POTS?

What criteria would have to be met for you to feel comfortable that an explanation for the root cause of the illness is valid?  

We discuss such questions and summarise the cause for a single root cause of the illness and what that is!

Below you can see links to the other two videos as well as the transcript for the video.

Transcript:

Hello, welcome to my 3 part video series that summarizes my explanation for what I believe causes Chronic Fatigue Syndrome and Fibromyalgia Syndrome.

Fibromyalgia Syndrome and Chronic Fatigue Syndrome are very closely related, in fact I believe they are different expressions of the same underlying dysfunction. 

Other words like Myalgic Encephalomyelitis, CFIDS and post-viral fatigue syndrome are also used.  For now, let’s just call all these CFS just to make it easier.

Perhaps you have seen some of my other videos where I discuss the different theories regarding what causes CFS.  Undoubtedly you have already done a lot of research yourself, so a lot of what you hear in these videos may be familiar to you already.

In order to get the most out of these videos, I would suggest that you make a decision to put any skepticism on hold until you have all the information, even if you feel you’ve “already heard it all before”.

Because having heard a part of something before and having understood it and having applied it successfully, are all different things.

So depending on your background or experience, you may find that this is ALL new and somewhat overwhelming, or you may find that you have already heard about many parts of the information presented and you may even have already tried a lot of strategies or treatments based on aspects of what we are talking about there with varying success.

The important point I would like to make is that you can be doing 95% of things right, but unless you get that final 5%, success can actually allude you.  And, now that 5% is probably different for everyone.

So, in the first half of my book CFS Unravelled, I actually give more detail of how I arrived at my understanding and how I accumulated evidence to give you the conviction that this explanation is absolutely correct.  Whilst the second part focuses on recovery planning, it also gives more insight into the pathogenesis of this complex syndrome.

The book basically gives a framework that brings the merit of all these different theories together.

So whilst I obviously can’t include all that information in a short video series, I wanted to make sure that you at least the overview of what we are talking about.

The important thing to note is that the explanation is a hypothesis – it has not been proven.  Although, in much scientific literature the cause of the underlying reason for Chronic Fatigue Syndrome and Fibromyalgia are casually referred to as “well-understood fact”. So it seems a little strange that on the one hand people act like we all know it and on the other hand, the vast majority of people out there are saying it is a mystery and there is still so much discussion and controversy over the cause.

Whilst what causes CFS & Fibromylgia might be regarded as self-evident or accepted, it has not been “proven” as far as I know anway.  But ask yourself, how do you prove any such hypothesis?  After all, if it is based on already known physiology and based on observed dysfunction, how do you prove the connections that are known, or obviously implied or observed.

The reason why I ask this, is because you have to ask yourself, what do you need to see in order to feel confident that the explanation is valid and not just another theory.

So I personally looked at these criteria:

Does it explain the symptoms?

Does it explain why certain treatments work?

Does it explain why certain treatments don’t work?

Does it explain why people recover despite using different treatments?

Does it explain how people get sick in the different ways?

Okay, so let me start by making one glaringly obvious observation.

In Chronic Fatigue Syndrome and Fibromyalgia, just about everything is out of whack” 

There are problems with various hormone levels, adrenal hormones, thyroid hormones, testosterone, estrogen, progesterone, growth hormone – just about all of the hormones.

The are also problems with neurotransmitters, there are bowel dysfunction, there is immune system dysfunction, cardiovascular dysfunction. And obviously there is also metabolic dysfunctions, which means you have problems creating energy. There is poor liver function and there is also neurological dysfunction.  That’s a lot of dysfunctions.

So what could possibly be causing so many different dysfunctions. It’s almost a case of what is working correctly rather than what is not working correctly. And this is your biggest clues as to the cause of CFS.

Normally, if you have an illness, you have a certain symptom or group of symptoms, and we can do a  medical test which reveals a dysfunction somewhere in your body, and then you will probably receive an appropriate diagnosis and treatment.

However, in Chronic Fatigue Syndrome and Fibromyalgia, you experience multiple disorders.  This is what doctors call co-morbidity. 

So clearly we should ask ourselves this question; What affects every system in the body?

The answer is; The Autonomic Nervous System!

Now this may already sound similar to you, similar to you some other information you’ve heard. There are various authors out there that are saying that CFS is a result of a dysregulated HPA axis that produces the wrong amounts of adrenal hormone, or sometimes they say that your fight or flight response is dysregulated.

But that is only one small part of the Autonomic Nervous System.  Let me called it the ANS from here on.

Now, the ANS directly influences all the major systems of your body. So you can see it affects the Digestive system, the Endocrine System, the Nervous System, the Circulatory System which obviously includes the heart, it includes the respiratory system, the urinary system and reproductive and other systems.

The HPA axis I just mentioned, is only a small part of the endocrine system.  It’s how adrenal hormones such as cortisol are produced in the adrenal cortex above your kidneys. Now, cortisol is a very powerful and important hormone that is chiefly involved in immune system control, breaking down and mobilizing tissues, making glucose, blood sugar available and some other functions involved with the fight or flight response.  Now the Adrenals are stimulated by the pituitary gland which in turn is stimulated by the hypothalamus. So that’s where the term comes from; HPA.

Now some people suggest that cortisol is low in CFS sufferers which explains the symptoms of fatigue as well as many others.  This if often described as adrenal fatigue or subclinical hypoadrenia and suggest that adrenal glands are unable to produce adequate hormone levels and need to be rejuvenated.  This gives rise to the adrenal fatigue theory for CFS and treating CFS with various products to rebuild the adrenal glands or even replace the hormone directly as some doctors try to do.

Now, some people suggest the opposite.  They suggest that adrenal levels are too high, which would explain the depressed immune system and many other problems. Now they suggest that the reason why it is too high is the control mechanism, that is the the H and P parts of the HPA axis and some people go further to incorporate other parts of the limbic brain such as the amygdale.

So why is there such a problem? I mean this is the question we have to ask, and various researchers and authors have come up with various reasons.

Some people suggest it is due to suppressed emotions,some people say it is due to focusing on your symptoms. Some people say it is due to neuroassociative conditioning. Some people say it is due to the mysterious forces of CFS and that it is can’t be explained

So, there is a lot of reasons why someone comes out there with an explanation or theory of why this is happening.

And some people have suggested that we go from to high adrenal levels down to lower adrenal levels, which perhaps makes some sense.

But if you consider fibromyalgia in particular, there is a whole bunch of other symptoms that are not fully explained by these ideas alone.

And reason being that we are looking at the ANS, the autonomic nervous system a little simplistically here.  There is actually much more going on.

So if we look at the ANS we can simplify and split it into three branches.

The Sympathetic Nervous System, the Parasympathetic Nervous System and the Enteric Nervous System.  The Sympathetic nervous System is responsible for fight or flight, so getting all revved up – releasing lots of cortisol and the parasympathetic to do the opposite, reduce arousal and prepare yourself for rest and digest.  The enteric nervous system is a complex set of nerves to regulate the activity of the digestive system.

But the important thing to realize, is that the Autonomic Nervous System does not just influence the body via the control of hormones, such as cortisol, aldosterone or adrenaline, noradrenaline or thyroid hormone. No, it primarily uses nerve fibres.

So, the adrenal hormone control is only one part of the ANS, one part of the sympathetic nervous system. So there are two branches in the sympathetic nervous system.

So getting back to the different systems affected by the ANS.

The digestive dysfunction and any cardiovascular dysfunctions can be directly attributed to the ANS dysfunction.  No doubt you already know about racing heart beats or  butterflies in your stomach when you feel nervous. So that part can already be, very easily linked directly to the ANS

You have to realize that the ANS is just part of the central nervous system. So many different areas in the brain are affected, from the brain stem to the limbic brain to other parts of the brain.

Now, that means that areas such as the thalamus that are central to pain perception are also involved.  So when it comes to fibromyalgia pain for instance, many people often look at, the source of the pain in fibromyalgia and whilst there is undoubtedly some pain due to inflammation, and perhaps a couple of other factors, it is clear to me that the real problem is with the perception of pain.  Now, by perception I don’t mean how you as an individual handle pain or how tough you are. What I am really talking about what is happening neurologically.

So instead of looking for what is sending the pain signal down the nerve fibre towards the central nervous system, we should really be looking at what is actually happening within the nervous system itself where the signals are received.  Some of this is already happening now with investigations of high substance P levels in cerebrospinal fluid of CFS sufferers and also by science gaining a deeper understanding of how pain perception actually works.

However, let’s get back to what we talked about before, about cortisol.  Is cortisol too high, is it too low?  It’s an interesting question because cortisol dysregulation can explain immune system dysfunction as well as problem with energy production.

Not only is endocrine function directly related to energy levels with hormones like  cortisol, as well as thyroid hormone and insulin, but secondary dysfunctions in your mitochondria, which is where energy is produced in your cells are also linked to stress hormones. 

I actually believe that both theories are actually right, sort-of anyway.  Let me make 2 points here :

One; I believe that cortisol levels have a much greater impact on CFS sufferers and that this is due to the changes to cortisol receptors

And the other point I would really like to make is that cortisol is not as low as it appears.  In fact, despite what we can measure, in fact there is really often massive off the chart cortisol surges that are experienced and these are often the things that keep you up at night, and leave you like you’ve got that trapped energy in your body where you just want to twitch and move, that type of feeling.

But just looking at hormones alone is not enough, it’s actually looking at the nervous system, how that functions because that is really a big important part of CFS.

As you gain a fuller understanding of how CFS works, you can start to see all the different connections to all of your symptoms and dysfunctions, including some of the stranger dysfunctions such as hypersensitivities and some of the other neurological dysfunctions, so, it starts to make sense.

I hope this information so far is enough to help you see the link. You can always review the available literature on the internet or read CFS Unravelled for more details and more of these connections.

Remember when we looked originally at what we need to be sure that we have the correct working theory of what causes CFS, we needed more than just making links between the dysfunctions and the observed symptoms, although obviously what we see here is already pretty compelling, especially when you study it in a great deal of detail.

What I personally found most compelling is how the ANS dysfunction explains the different ways people get sick as well as different ways they recover. 

The real question I hope you are asking yourself is why is this dysfunction occurring, and how and where is the ANS regulated.  Because these are important questions to ask yourself if you wish to recover.

We will consider this in the next video and consider the role of the Locus Ceruleus in CFS.