In March 2012 I collapsed with CFS/ME and remained bedbound, unable to move, bear noise, light or contact with anyone for nine months. I was in constant pain, felt terrified and helpless, unable to understand what had happened to me or why. My background is that I am a trained psychologist and a homeopath, with an understanding and experience of other alternative therapies. Even with this knowledge I could not understand the mechanics of what was happening to me. In March 2013, when I was slowly able to do some more reading and was week by week recovering my abilities, I came across a neurological study that put everything I had experienced – and was experiencing – into perspective. I could finally understand the physiological mechanics of this illness. The beauty of this knowledge was that it empowered me and fitted in with my esoteric knowledge of healing. I took all that knowledge and understanding and was able to change my whole life. In 2014 I was back to living a normal life with my family, and now, in 2015, I am looking to go back to work.
My aim for this book was to share the knowledge and give hope to sufferers and their families. I have kept this book as short as possible and written in an easy style, as I know how difficult it is to process information when suffering from CFS/ME. In this book I will explain the mechanisms behind developing this illness and suggest a number of tools that you may find useful in your recovery.
There is no magic pill that can make CFS/ME go away. Nor any pills that can make the awful symptoms disappear. Yet, if you understand how your body has resulted in this condition, you can reverse the process. Unlike cancer, where the body’s cells have mutated, rendering them rogue cells, in CFS/ME we are physiologically healthy. It is our body’s system coordinator that has been overwhelmed to such a point that it shuts down all our systems and, like a computer, puts us on ‘sleep/standby’ mode. So it functions but only enough to keep systems ticking over until ready to resume function once more. This is a natural state in certain instances but not when it becomes chronic. The coordinator in our brain is called the vagal complex. It has evolved and adapted from our reptilian brain to our present human brain to deal with virtually all our automated physiological and emotional responses. This vagal complex, which results from many offshoots of our vagus nerve – known as the wandering nerve, as it weaves its way throughout our body – is what malfunctions, resulting in this illness.
Once I discovered this information I was able to take charge of my illness and work out what were the underlying causes of my condition. What it was that had caused my system to essentially go into a permanent state of shock and what I would need to do to overcome it.
My hope is that in reading this book you will feel the same sense of relief and empowerment I felt and understand that you can recover. It will just take a bit of time. Please scroll down for a free excerpt from Silent Pain, or Click Here to read the M.E. Support book review.
C H A P T E R 1
What is health? What is disease?
Before describing my theory on CFS and how it develops I would just like to say a few words on what constitutes health and disease from a holistic perspective. Health is when the body can adapt to stimuli around it, such as a change in the weather or emotional upset, by bringing itself back to balance. Disease (‘dis-ease’) is when the body is unable to do so. When there is a sudden imbalance that takes a few days to resolve it is referred to as an acute disease. An acute disease can be either mild or very intense, even in some cases resulting in death. When an imbalance develops over a number of months or years it is referred to as a chronic disease. Chronic disease tends to affect our lives bit by bit and we adjust to it without even realizing in most cases.
Have you ever pondered what symptoms actually are? I never had. It was not until the last ten years that I realized that symptoms are not the problem but simply road signs pointing toward the underlying cause of disease. Symptoms are in fact the body’s only way of communicating what is going on beneath the surface. It is quite a revelation when you begin to see symptoms as allies rather than something that need to be got rid of as quickly as possible. For example, imagine you had a raging fire in your belly and smoke was billowing out of your ears and nostrils. The symptom in this case is the smoke, and the body’s disease a raging fire. If you were able to put small corks in the nostrils and earplugs to stop the symptom (smoke) you may succeed in doing so, but the fire will still rage within. The body will then need to find a different way (symptom) to make you aware there is still an underlying problem. It may do so by causing you to double up in pain and feel a burning sensation in your belly. If you take a pain killer and antacid, once again you will rid yourself of your symptoms but not of the underlying disease. The body will continue to look for ways to ask for help.
The longer it goes unrecognized, the more damage is caused. What started off as an isolated fire may begin to spread to the rest of the system, causing more problems and more symptoms. Thus, like a detective, it is best to look at symptoms as clues to a puzzle and work your way back to the cause of disease and discomfort in your body. In the case of CFS, I believe it is a chronic disease that for some develops over months, while for others it could be over a number of years. It is described as a multi-system and multi-causal disease with a myriad of symptoms, yet if you deconstruct it, and look at what lies beneath, to where the symptoms are pointing, it suddenly all becomes quite clear. Though there is no quick fix, there is a way for us to overcome this illness.
Discoveries of CFS Research:
- A large number of CFS patients suffer from low cardiac output (low blood supply going around the body). It has been found that CFS patients have almost normal levels of cardiac output when lying down but when they stand up it lowers rather than rising to meet the increased metabolic demand. For some with CFS the cardiac output is so low when they sit or stand up that it borders on heart failure. Cardiac insufficiency is one theory that has been put forward for people suffering from CFS.
- CFS patients suffer from cellular hypoxia (lack of oxygen, usually caused by an insufficient amount of oxygen being circulated by the blood, which can result from low cardiac output);
- Respiration rate is affected in CFS patients (it slows down);
- CFS patients tend to suffer from hypoglycaemia (low blood sugar);
- CFS patients suffer from high system toxicity (as the liver is under-functioning and has a hard time detoxing the blood);
- CFS patients suffer from inefficient digestion and as a result malabsorption (whereby nutrients are not efficiently absorbed/assimilated into the system), which results in malnutrition);
- CFS patients suffer from inexplicable weight gain and loss (though inefficient digestion may hold the key to understanding that symptom);
- CFS patients have poor mitochondrial function (mitochondria are known as the energy generators of each cell. They process fuel and oxygen to produce this energy we require to function as a whole);
- CFS patients have great trouble sleeping;
- CFS patients suffer from mood swings, though it has been clinically found that depression is not a causal factor of CFS. CFS patients get depressed as a result of their illness, when there seems to be no light at the end of the tunnel.
- CFS patients’ brain scans show impaired blood supply to certain areas of the brain. Studies show that hypoperfusion (reduced cerebral blood flow) is prevalent among sufferers;
- CFS patients’ brain functional scans have been described as closely resembling those of patients who have experienced a stroke.
The signs and symptoms experienced by CFS patients are extensive and differ in severity from person to person. They can include the inability to move, multi-task, think clearly or sleep well. There can be tremendous pain in the limbs in the muscles upon exertion that can linger. Some people feel nauseous and faint, and many have digestion issues. The list goes on (and often seems endless) but I have included two links at the back of the book where you can look at the criteria that UK and Canada use for diagnosing CFS. It is important to remember that chronic fatigue is simply one of many symptoms, and for some patients not necessarily a severely debilitating one. The word ‘syndrome’ is used to describe a collection of symptoms of unknown causation but which occur together regularly in a number of sufferers. Attempts have been made to change the name from ‘CFS’ to something more representative of this illness, as it has been found inadequate; studies have shown that people respond with less or more seriousness to the nature of the illness depending on the name used to describe it. Other names by which CFS is referred to is ME (Myalgic Encephalomyelitis), Post-Viral Fatigue Syndrome, NDS (Neuroendocrineimmune Dysfunction Syndrome), and CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome).
Okay. So, having established all this, my questions were: Why are we experiencing all these symptoms? Why is cardiac output low? Why are the mitochondria under-functioning? Some argue that one is the reason for the other, a sort of chicken-and-egg argument. Yet, we know the body works in a logical and efficient manner, therefore there has to be something that brings everything into perspective. For my peace of mind I needed to understand why and how this illness develops. I honestly thought the answer was already out there, but I soon discovered it was not. By pure chance I had an unexpected insight that came to me whilst reading a particular study on the vagal complex system within the Autonomic Nervous System (ANS); I realized that this study put into perspective all the other research and theory proposals I had read regarding this illness. Based on this insight, I propose that CFS is a malfunction of the tenth cranial nerve, the vagus nerve, as a result of too much pressure (stress) over a sustained period of time.
© Helen Germanos