There are according to the UK's National Institute for Health & Care Excellence (N.I.C.E.) body, per their document {Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management: NICE guidelines [CG53]
Published date:
}, three categories of M.E.: mild; moderate; and, severe. I have been diagnosed by my NHS hospital consultant as suffering "severe" Myalgic Encephalomyelitis or M.E. in accordance with this classification.
I average, over the year, fourteen-and-a-half hours of sleep in every twenty-four. However, there is no pattern to my slumber. Sometimes I sleep up to twenty-two hours in a row; at other times I am insomniant. On occasions I have inverted sleep patterns: asleep during the day, awake at night.
It is only in the past few years that I have found a pain-killer that subdues the pain to a bearable degree; but with nasty side-effects, I only take when I am climbing the walls in pain. Nonetheless, most years I experience only one or two days totally pain-free.
I keep a spreadsheet of some eighty-five major symptoms from extreme ones like temporary paralysis to more mundane ones like temporary (from a few hours up to six months) dyslexia. The vast majority of my symptoms are neurological, from: the aforementioned dyslexia; dyspraxia; dyscalculia; hypersensitivity to odours, touch, vibration and noise as well as photophobia; forgetfulness - from names of individuals I know very well, including my own, to how to cross a road safely; dyscognition; loss of vision, or control of one or more limbs - so no driving for me; muscle twitching, spasms & cramps along with pins-and-needles; fibromyalgia; poor proprioception and equilibrioception - mixed with orthostatic intolerance is a recipe for daily falls (so I sport a pendant-alarm); hypersomnia; hyperalgæsia; chronic headaches & migraines; and so on…
The hypersomnia is another way of saying I suffer chronic fatigue or C.F.S. This is a symptom of many diseases including inter alia Cancer, Lupus, Fibromyalgia (F.M.S.) and Multiple Sclerosis (M.S.).
Like many, if not most M.E.-sufferers I also have several co-morbidities and separate conditions, that for me together create a downwards health-spiral. Over the past two visits to see my specialist, she assesses my over-all condition as having stabilised after years of deterioration. As yet, after more than twenty years of being ill, there has been no amelioration. I remain hopeful probably despite reason!
Whilst the majority of the year I am abed in what I quaintly call my bed-cell, I have better days when I can be taken out to do essential things like shop (mostly done on-line), visit the dentist or G.P. or optician or hospital. On my really good days I like to see friends. Most winters I go to southern Spain to benefit from their much more stable and warmer climate. It does not improve my M.E. symptoms, but massively subdues my various arthritides, thus reducing pain levels.
As I stated above, I am classified as a severe sufferer of M.E. There are however some sufferers who are so ill that they are on intravenous drips, they cannot do anything for themselves at all, and they have to lie abed constantly - often with blindfolds and noise-reducing head-phones. Thankfully, I have not pejorated to that extent.
Myalgic Encephalomyelitis kills.
The slogan reads:
Myalgic Encephalomyelitis
Cover Up
"I split my clinical time
between the two illnesses
(ME & HIV),
and I can tell you
If I had to choose
between the two illnesses
I would rather have H.I.V."
[2009, Dr. Nancy G. Klimas M.D.]
As a sufferer I am never - even were I to become well again - permitted to donate blood, plasma, tissues nor organs, except for medical research in the U.K.
[Image description: screen-shot from NHS Blood and Transplant website confirming my statement]
If you read this far, thank you. Perhaps next time you encounter someone suggesting M.E. is all in the mind, a life of Riley lying in bed all day watching television, perhaps you might consider challenging their misconceptions. Cheers!
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Over the years I have written several blog-posts on Myalgic Encephalomyelitis or ME. You can search for the articles using both those terms from the word index at the bottom of this page.
