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ME : a biomedical overview
SINCE THE EARLY 1990’S my wife has not known a moment’s respite from the screaming, throbbing, itching, symptoms that paralyse, numb, hurt every part of her body; sometimes if I think that if I took on board the full reality of my wife’s suffering I would explode.
She describes how it is :
“Another morning. I lie here in the vastness of agony. There are no words to describe its onslaught. It is intense, all encompassing, everywhere. I am in it and I am it.
My whole body lies motionless, impaled upon the pillow, I struggle with my breathing, I cannot move my arms. How long have I lain deep in this posture ? My left leg is outstretched, numbness pervades it. My right leg is bent out at an angle. I cannot feel my toes. My feet and hands pound, in the very centre, a throbbing beat of pain.
How long will this go on ? Hours probably, yet always these experiences lie within me, the pain ever present whether I am paralysed in bed or sitting on a chair. The experience is ever present within me, no matter what my external posture.
My face burns, prickles, throbs too in rhythmic unison. My face is palsied. I cannot even cry out, yet the hurt rages in me and I long to escape from this tormented place.
My head pounds inwardly and burns outwardly.
Please do not touch me. The contact will send me over the edge and still I would not be able to move.
My eyeballs throb, my lids are shut, unable to open to the dim lit room which still would pierce my eyes with pain, were they open.
My head pounds too. The pain is even worse in my arms. My arms and chest have melted into one large immense ball of throbbing agony, immobilised my body feels dead in so many ways, only alive to the pain that holds it together.
This is no odd occurrence. I return to this place again and again; always impossibly difficult to describe."
The burden on the carer is enormous; not only do you need to be able to grasp the intricate political systems and structures that are denying the one you care for appropriate biomedical treatment, you also need to have a working knowledge of the complex biomedical impact of ME upon the body , which , given that it seems to involve every single system and part , is quite a task.
There is a lot of information available - I have spent twenty years struggling through abstract lists of symptoms and acres of medical jargon, trying to make sense of it all.
I knew I could not make any progress towards safely helping my wife, without a basic understanding of what is going so wrong in her body. Please bear in mind that no one can tell you for sure; we do not yet have a fundamental mechanism to explain what is going on at a molecular, cellular, biochemical or physiological level that can account for the complex range of symptoms in ME, which, as we shall see, include :
Dysfunctional immune system - chronic infections which hardly ever occur in normal people .
Underlying intestine disorders– dysbiosis, gut permeability.
Problems of oxidative stress leading to DNA impairment, impaired proteins and structures .
Faulty mitochondria – shortage of oxygen and energy supply in body.
Cardiac abnormalities, heat defects, heart not being filled completely, too little blood volume, poor blood circulation .
Neurological abnormalities – with studies showing the grey substance or brain substance is reduced. Malfunctioning of short term memory, the recalling of words can be severely disturbed – patients thinking they have Alzheimer's.
Increased sensitivity to stress, disturbance in the hypothalamic -pituitary-adrenal axis, resulting in reduced cortisol (patients with depression have raised cortisol).
Various muscle abnormalities, malfunction at the molecular level of the ionic channels.
(De Meirleir 2013 Is it possible to diagnose ME/CFS ?)
These offer tantalizing glimpses, my experience is that as you begin to unravel one area of dysfunction , slowly, bit-by-bit a useful panorama begins to emerge.
When approaching someone with Severe ME, what do you see?
This is an extract. READ MORE
From "Severe ME" by Greg Crowhurst