Searching for Answers to the Chronic Illness CFS / ME - A Carers Viewpoint
Is it all in your head, Curious ? Read on ……
While Julie spends many hours resting or sleeping, either at weekends or during the evenings in the week, I spend this available time surfing on the Net looking for answers and possible solutions to Julie's dilemma. Since the site's conception it has given me a platform to pass my findings on to other sufferers of CFS / ME and, hopefully via the sites contact page, give others the opportunity to share their views and findings.
On my latest venture on to the Net I came across an excellent article that answers some of the many questions that arose from a recent night out. For those of you not familiar with the night out in question you can read it in full on the attached link http://www.youranswerswithin.com/2/post/2010/07/living-in-the-shadows-of-cfsme-night-out.html
I will briefly lay out some of the findings, which I consider help to explain some of the symptoms Julie experienced on the night out, and later on attach a link so you can read the article in it's entirety if you wish to do so.
This article is based on information published by a Dr. Goldstein from Toronto Canada in his new book entitled " Betrayal By The Brain, The Neurological Basis Of Chronic Fatigue Syndrome, Fibromyalgia Syndrome And Related Neural Network Disorders " ( now that's what I call a book title)
In this book he explains why the symptoms are " Neurosomatic " and not " psychosomatic ", that is to say that CFS / ME is a neurological illness and not an imaginary one. All CFS / ME sufferers already knew this, but unfortunately many Doctors and the layperson do not. It is a neurotransmitter/receptor dysfunction and some of the symptoms of CFS / ME occur because sensory information is not properly managed by the brain.
I have watched on many occasions as Julie becomes overwhelmed by her surroundings for no apparent reason/s. The following information I obtained from Dr. Golsteins article explained to me exactly what has been going on inside Julie's head ( been married for 35 years and that's a first for me) sorry dear couldn't resist that one LOL. I hope that some of these explanations will remove some of the fear factor involved when these episodes occur.
The Technical Stuff
The problem occurs in the Pre Frontal Cortex ( PFC ) of the brain where sensory information from your surroundings is received and processed. This sensory information is received and given a priority relevant to it's importance, this process is known as " Gating ". This gating process is abnormal in CFS / ME sufferers and the information that should be given a low relevance is often given a high relevance ( priority ).
A crucial concept to understand is the " signal " to " noise " ratio. This is where your PFC is supposed to assign a high relevance to the " signal " and a low relevance to any other sensory information " noise ". Let me try to explain , if you're reading this article then the " signal " at that moment is reading, this is what you are concentrating on and everything else is "noise". You may be reading with the TV on, cooking smells from the kitchen, traffic noise outside , air conditioning or fan on etc, you are aware of all this other sensory information but they are all given a low relevance by your PFC so you can concentrate on the " signal " in this example reading.
Now what happens with the CFS / ME brain is that all these other distractions which should be given a low relevance are given a high relevance by your PFC so it becomes increasingly more difficult to concentrate on the " signal " and you become fatigued by this effort of trying to maintain concentration on the " signal ".
This is exactly what happened to Julie on our night out, she became totally overwhelmed by her surroundings with head buzzing, unable to concentrate on the " signal " ( a four way conversation), the background " noise " became too much to cope with and her concentration faltered shortly afterwards followed by fatigue and total disorientation.
Gating information is transmitted to your Thalamus by a neurotransmitter called glutamate. Glutamate levels are abnormal in the CFS / ME brain, Norepinephrine a neurotransmitter that increases " signal " to " noise " ratio is low in the CFS / ME brain, whereas substance " P " a neurotransmitter which lowers " signal " to " noise " ratio is increased in the CFS / ME brain.
messages get confused in the PFC and you receive more " noise " than " signal " resulting in difficulty in concentration and other functions. Let me explain further , the Thalamus receives all this misinformation and has to modulate signals and transmit messages to various other brain centres. The thalamus is vital in normal brain functioning, it modulates signals that control many functions such as pain information, appetite, mood, sleep, autonomic nervous system, libido and the neuroimmunendocrine systems. All of these functions are found to be abnormal in CFS / ME sufferers.
I hope you found this useful in explaining some of the reasons for the symptoms you experience on a regular basis. To try and find out more answers I have just purchased a companion version of Dr. Goldsteins book, this version is supposed to be easier for non- medical people to understand. For those of you who wish to read the article in full click onto the attached link. http://www.ei-resource.org/articles/chronic-fatigue-syndrome-articles/a-book-summary-by-dr-j-a-skerkey-%11-betrayal-by-the-brain/
I thought I would leave you with the following quote which I consider to be a good way of dealing with life as it is with CFS/ME, unfortunately I don't know who the author is.
Yesterday is dead. Tomorrow is a dream. Today - each today - is where the action is - where all of life occurs. Today IS your life - your only life. Live today to the fullest.