Showing posts from October, 2014


I am a broken butterfly
My wings no longer flutter
Or lift me from the ground
What remains of me
Inaccessible to most
The world
    too big
    too busy
    too noisy
Crushes me with its
It's neglectful ignorance
It's persecutory hostility
And it's lazy incompetence
Am I then too broken to dream
To hope
Not to despair
Some days
I just don't
Know the answer.

Paralysis : so much more than not being able to move.


It sweeps in, it crushes all strength, flows up through your hands and feet, through your limbs and into your back and your chest, your throat, your face, your eyeballs, your mind.

Experienced from the inside, transient awake paralysis is a brutal nightmare forced upon a body that the moment before could, to some extent, move. 

It intensifies the pain, already present, increases the inflammation, yet it also numbs the senses all over your body, it steels your proprioception, so that your awareness of various parts of you, just disappears with no boundary.

It blanks and paralyses your mind, it stops your thoughts reaching your mouth, it stops your mouth from speaking anyway,  it numbs your tongue, it paralyses your throat and clenches your jaw, so that eating is impossible.

It swells your stomach and stops it emptying, it presses on your diaphragm so that breathing becomes a struggle.

It increases your hypersensitivity on every level still further, so that every torment is increase…

Why is Paralysis ignored in Severe ME ?

Fatigue : a slap in the face and an insult

Greg & Linda Crowhurst September 2014 (Published in the ME Global Chronicle Oct. 2014)

The situation regarding Severe ME is so dire as to be almost incomprehensible. You have to ask : why are people not bending over backwards to help those who have been pushed, through unimaginable physical suffering to the very edge of society ?
Imagine if cancer was treated mainly with psychiatric therapy while those with malignant or terminal cancer were left at home with no treatment, help or support, to die, their serious disease ignored.
There would be such an outcry !
You do not get that outcry with ME.
Why ?
The seriousness of the illness is no longer understood or adequately represented. “Myalgic Encephalomyelitis”, the neurological disease, has become hopelessly lost in a sea of poorly identified fatigue issues, in which Severe ME barely registers.
After three decades of psychiatric misdirection, a bewildering array of inappropriate and vague terms : “CFS/ME”, “CFS”, “ME/ CFS”, even “Chronic…

Guidelines on writing and presenting information on M.E.

Focus on Truth at all times.
Be Passionate but be true.
Be very clear what your values are and make sure they underpin every word and have an overarching principle, rather than a relative origin. Do not sacrifice them inadvertently or compromise them. Stay focussed and true. Compromise leads to dilution,betrayal, ambiguity,lack of clarity, inconsistency, stagnation.
Be clear in your purpose, why you are writing and what you want to say.
The credibility and integrity of your document must not be compromised by lack of accuracy. Check your facts, double check, triple check your facts and make sure they are correct.
Approach with humility, acknowledging your own fallibility, admit error and rectify any error where necessary, without delay.
Focus on issues, not personalities, when challenging another view or opinion or making a point. Never attack anyone personally. It leads away from the issues and potentially causes harm and offence. It weakens your presentation and clouds judgemen…

Wanting to be me, not ME

This poem says so much about relationship
 in Severe ME :

Inside I am still me
Somewhere, hidden within
The tattered shreds of my tortured mind
The limp empty, useless limbs
Which lay motionless, immovable, numb, unfeeling,
Refusing, absolutely, to conform with my will,
Portray a statue
Thrown upon its back, helpless, useless, broken, 
Unable to rescue itself,
Stuck in whatever pose, it was accidentally arranged in.
Moving takes time.
How long I cannot say.
My body, bathed in sweat, is far too hot.
Uncomfortably saturated, itching, burning,throbbing,
My skin crawling with irritation and indescribable sensations.
I am desperate to move.
I cannot call out.
I cannot wipe my face, bejewelled with sweat,
I cannot move my twisted body, my awkward limbs,
I cannot help my self at all.
I cannot even think, 
So blank my mind
My head and neck twisted to one side, 
placed at an unexpected angle
To avoid the worst pressure on my skull,
To try and prevent the intense agony from piercing my brain,
From invading my head, my jaw…