Monday 8 August 2016

Severe M.E. Day 2016

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."

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!


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.



  1. Thank you for posting this, and under such difficulties. FWIW, I believe that we are nearing the tipping point in biomedical research on ME, where too many people know too much to stop studying now. It may even be an advantage that most of this research is being done by crowd-sourced funding. NIH can't give us less than they do! Stanford, Columbia, Hopkins, Cornell in the US; Griffith University in Australia, Jikei and Osaka U's in Japan, Newcastle U in the UK - we're making progress. The biopsychosocial school is doomed to a place in history reserved for ridiculous medical theories. Changes are coming.

    1. I hope you are right re biomedical research. I am fortunate that my hospital consultant is an endocrinologist who has a special interest in M.E., so she already is aware of biological aspects.

      BSP will take a very long time to disappear in the UK as the Establishment will do everything it can to avoid having to pay compensation - at least that is what has occurred in the past.

  2. I really like the comment comparing HIV with ME. I have often said that I would swap losing my lower leg for having ME, often to a response of raised eyebrows in the room. People just don't get how awful it has been and how difficult it can still be to live with this horrible illness!! I am actually just down the road from you in Partington so it's good to know that there is support out there just a few minutes from my door.

    1. Thank you for your comment. I hope you never feel unsupported as there are plenty of folk with M.E. lying in the shadows of your locality. It is calulated that each G.P. surgery has about forty such patients, five of which will have severe M.E. Given same, there should be a fair few sufferers much nearer to home. One could always try to set up a local on-line group.

      I know that in some on-line M.E. groups some sufferers can be, shall we say, a tad earnest; but do not let that put you off joining a few. There is nothing wrong with not engaging with the argumentative types - far too sapping in any case.

      And, of course, if you need some moral support you are free to contact me. Note however, I do have long patches of being too ill to respond; so do not feel despondant if I do not get back to you for a few days/weeks. %)))

    2. Thanks for the reply. I am on a new phase with the illness at the moment so just trying to find my feet but things are moving in the right direction. Luckily I am with the Optimum Health Clinic so I have support there and it's good to read the ME blogs etc. I am going to steer clear of the groups for now - I do find them tiring. I will keep reading your blog as it has cheered me up and is interesting and entertaining all rolled into one!

    3. You have to do whatever is best for you & your well-being, Becky: quite agree.
      Glad you like the blog. I know some articles are better written than others - much depends on the state of my cognitive abilities. I have several part-written items in process. generally I can only write a few lines at a time. Hopefully, a new blog-post should appear soon-ish! %DDDDDD