Showing posts from March, 2013

Happy Easter


UK Minister of State confirms ME and CFS are not the same.

Norman Lamb, UK Minister of State for Care and Suport,  has written to me. His letter contains the following clarification  :

"The use of the composite term "CFS/ME" is not intended to imply unanimity of aetiology of conditions covered by the term, or indeed to suggest that all conditions which fall within the scope of this term are equal in terms of severity of impact. The use of an umbrella term is also not intended to imply that fatigue syndrome and myalgic encephalomyelitis are equivalent "

He also stresses that "The Department of Health classes CFS/ME as a chronic neurological condition and we are clear that CFS/ME is a chronic illness and health and social care professionals should manage it as such."

Even when

Even when the noise has temporarily lowered
The echo vibrates, reverberates , resounds physically around my body, tearing at my ravaged guts, my muscles tremble then shake violently out loud
Diminishing me
Demolishing me
Damaging me
Dementing me
Even when the paralysis looses its grip for just a second
Still it clings to me pulling every cell towards total incapacity time and again without relent
Halting me
Hurting me
Hindering me
Harming me
Even when I have managed to move my finger or my toe or my eyelid or my mouth
The inability still lingers, lurking in every muscle
Reducing me
Redefining me
Ravaging me
Rasping at me
Even when the headache finally lowers,
The head pain and body pain is ever present, no cell unaffected
Shouting at me
Screaming at me
Scorching at me
Sundering me
Even when the moment by moment external assault diminishes slightly ,the  constant, internal, pounding bodily assault remains, harming me with its ever presence, never leaving for a millisecond
Tearing at me

The Big Shave 2013 : please support Amy and Sharon

"Hello! My name's Amy, I'm 30 years old and I live in Winchester (Hampshire). I have suffered from this horrid illness M.E. for over a decade and am mostly housebound and often bed bound. Every year I try and do something in my own little way to raise funds for charity, but when you have severe M.E. you are quite limited in what you can do!

 In the past I've done a sponsored silence and sponsored screen free weekend, as well as giving up Birthday and Christmas money to raise awareness and money for M.E. However, each time that I do, I am very aware that it is only those in the M.E. community or their immediate friends and family who donate. Very rarely does the news travel to the general public. I realised it was going to take something a bit bigger to do this and given that my body won’t allow me to bungee jump or parachute jump... sadly, I have made the bold or should I say bald decision to shave my hair off to raise money for charity!! Very drastic I know, especia…

Announcing Unstoppable Spirit

This is just to announce my new book, written with much love for all who suffer and struggle - God bless us all.

Unstoppable Spirit is coming !

Just got  back from my cycle ride today - the final proof of Unstoppable Spirit has arrived ! 
It is almost ready.

Every moment, with Very Severe ME

Every moment is a  moment of extreme limitation
Every moment is a moment of constant and severe physical torment
Every moment is a moment of total constant continuous pain everywhere
Every moment is a moment of unpredictable reaction
Every moment is a moment of feeling severely ill.
Every moment is a moment of numb limbs.
Every moment is a moment that the environment is hostile
Every moment  is a moment where noise is harmful, damaging and dangerous.
Every moment light pierces and impacts painfully.
Every moment  is a moment that the world is inaccessible. 
Every moment the environment is hostile and unpredictable.
Every moment is a movement away or towards paralysis.
Every moment is a moment of inability.
Every moment is a moment of brain fogged unreality.
Every moment is a moment of difficulty interpreting incoming information.
Every moment is a moment of physical difficulty.
Every moment is a moment of physical distress.
Every moment is a moment of  profound disability.
Every moment is a moment of n…

55 reasons why people with Very Severe ME cannot access health care.

Greg & Linda Crowhurst 18th March 2013
All the time that ME is treated only as a fatigue illness the health needs of the very severely affected, who feel unimaginably ill in every moment, who are not generally part of research and whose experience is poorly if at all understood, are massively at risk, for some of the following reasons - this is not an exhaustive list by any means :
1. It is impossible for the person to travel to a clinic or a hospital. 2. It is extremely difficult to find a knowledgeable GP or consultant . 3. There is little, if any choice of biomedical ME consultants. 4. Knowledge of how to approach or communicate with a person with Very Severe ME is minimal. 5. The system expects people to fit into it and is not very accommodating of those who cannot. 6. Hypersensitivity to touch makes physical contact unbearable, dangerous, impossible without harming the person with Very Severe ME. 7. Hypersensitivity to noise makes it difficult to impossible to bear the sound of the vo…

In loving memory of Emily Collingridge



Of course.
Who would not be
With so much discrimination
And death?
It is time
For all the misdirection to stop.
We are  all so very very  physically ill.
We cannot live in the normal world.
Our hypersensitivity is an invisible barrier
That excludes us from normality
And opens us to
And denial.
We should be treated with respect.
We should be adequately investigated.
We should be understood and protected.
Yet instead we have to explain, articulate, argue our case
We have to suffer indignity upon indignity,
To risk mistreatment,wrong treatment or no treatment
To live in total isolation
Whilst professionals misinterpret our reality
Charities compromise the truth
And politicians toe the party line
Not wishing to upset the vested interests.
It is time to accept the fact that
ME has been abused and abandoned
Thrown to the psychiatrists
Cast on a sea of fanciful fatigue
Obfuscated in an ocean of wrong jargon and lies
Smoke and mirrors.
And who will  honestly speak…

Rest is impossible

I despair sometimes - there is a very interesting article in by Jason et al , in Fatigue: Biomedicine, Health & Behavior Volume 1, Issue 1-2, 2013, on an "Energy Envelope" in ME; the premise being that a person with ME needs to learn how not to exceed that envelope. However the assumption that you can rest bears no relationship to my wfe's reality. She has Very Severe ME , rest is actually harmful to her, it increases her symptoms, pushes her further into paralysis. My wife cannot rest - relaxation, sleep, brings no relief, makes her much, much worse.

This Energy Envelope theory is far too simplistic for someone with complex needs, like Linda.

The fatal flaw in current ME research is that it does not appear to take into account the most severely affected - in what other disease would that be acceptable ?

By definition if you have Very Severe ME you are not able to attend a clinic, you are not able to engage in two way interaction, you are not able to bear visitors - no …

This is ME


ME is not CFS MP3

I'm cryin
Mr psychiatrist my wife is dyin
every day I'm out there trying
to free her
from the CFS game
you're playin ME is not CFS x 3
..but you know that anyway WHO 93.3
I wish there was someone
she could see
I wish there was someone
who would take it seriously ME is not CFS x3
..but you know that anyway Mr psychiatrist
what is your deal
when will you admit
ME is real
we are paying a terrible price
you have compromised NICE
and the CDC
they call it fatigue and not ME ! ME is not CFS x2
..but you know that anyway

I cannot wash the ME away

No matter how many tears I cry
I cannot wash the ME away
No matter how much I shout
I cannot get over the barrier between my world and yours
No matter how much I try to move
The paralysis will not shift till it is ready
No matter how much I strive
I cannot make my energy materialise from nothing
No matter how many positive thoughts I think
It will not heal my physical dysfunction
No matter how hard I try to pace myself
I cannot stop my health deteriorating afterwards
No matter how much I long to be well
It does not make it so.
No matter how ill I am
I will not get better without proper medical investigation, tests and treatment.

Just feel so ill !