International M.E. Awareness Day 2020

I have not been well enough at this time of the year since 2017, so this is my first blog-post to mark the international Myalgic Encephalomyelitis awareness day in three years. (Underneath this blog-post is a list of words and terms, click on any of the ones referring to M.E. to find some of my previous outpourings.)

Under the UK’s current N.I.C.E. Guidelines and by my NHS hospital specialist, I am classified as having the severe form of M.E. There are three official categories: mild, moderate, & severe. However, the severe category itself covers a range of folk from those who are mostly bed-bound, like myself, to those who cannot ingest food or water and have to be kept alive via feeds.

In my previous blog-post I wrote:

“M.E. is not about being tired all the time. It is not a psychiatric illness as the UK’s psycho-cabal (along with their colleagues in Holland & Denmark) would have us believe. It is a multi-systemic, neurological disease (recognised for decades as such by the WHO, currently under ICD-10 G93.3). There are 106 conditions on my health spreadsheet; 104 are connected with Myalgic Encephalomyelitis. Only three are related to sleep. Under the WHO’s ICD-10 I have conditions under sections I, IV, V, VI, VII, VIII, IX, X, XI, XII, XIII, XVIII & XIX.”

I have mulled over the possible threat to my privacy and so forth, but have decided to publish the full list of my conditions. Obviously I have had to hide certain personal details to prevent identity-theft. I am not publishing this list to garner sympathy. My hope is that the reader will come to realise just how ghastly this disease is in its depth and breadth of conditions and symptoms. Many of these are covered in the broad and all-enveloping rubric of the term Myalgic Encephalomyelitis, many are classed as co-morbidities; but which is which is very much still debated.

The list below has not been updated since 2016. However, since that time my medications have altered. I have left the original medicines listed so one has a sense of what is or, in most instances, is not available.

The European Parliament recently unanimously voted for more funding for research into the biological causes of M.E., because despite millions suffering across Europe (and indeed the World), very little is invested into medical research. Individuals with the worst form of M.E. have worse quality of life scores than any other measured illness, including cancers and AIDs. Because we are hidden in our homes, we are ignored or dismissed. Please consider donating time or money to a Myalgic Encephalomyelitis charity or research proposal.

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: August 2007}, 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!

*

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.

 

 

Disability Living Allowance (DLA) Renewal - Again!

On the 6th September the Disability & Carers Service, part of the Department for Work & Pensions (DWP), sent me a letter and a renewal claim form. Despite the UK's notoriously inefficient postal system, Royal Mail somehow succeeded in delivering the missive on 10th September. Actually 'form' is an understatement: it is a thirty-five page booklet. Thus far I have managed to complete the first twelve pages at a rate of what is averaging out at two hours per page. At the rate I am going I shall definitely overshoot the required return date of 4th October. I have actually been given less than a month to complete it.

[Image description: page one of the mentioned form, DLA80; Crown ©]

Unfortunately I have multi-morbidities with concomitant co-morbidities which include several fluctuating conditions. This means I cannot answer yes/no to most things, but rather have to explain the range of symptoms, etc. Furthermore, on many days I cannot concentrate long enough to do anything useful on the form. I calculate at the current rate of progress, it is likely to take me up to two more months to fully complete, as I have already begun to enter my annual winter malaise. Yikes!

Every time I complete one of these renewal claims, I have requested that the form(s) be sent out much earlier, due to my inability to manage to fit into their tight time-frames. Every time I am ignored. This adds to my anxiety, puts me under unneeded additional stress and thus pejorates my health and well-being. This is direct discrimination and in breach of disability legislation, which expects service-providers, etc. to make reasonable adjustments.

Furthermore, I cannot write. And there is no carer to do it for me. So all my responses have to be typed. In this day and age one might have expected that the form could have been completed on-line or, at the very least, the DWP could have sent an electronic pro forma via email. (See also my rant on Govt. passport forms, disabled-friendly official forms.)

The only thing left to do is write a letter to the DWP to apprise them of the delay. Thankfully, I might just cut & paste and emend this article. But tomorrow, as I need my siesta now. ZZZZZzzzzzzz…