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The experience of Severe ME




This website seeks to share some of the experience of living with Severe ME, both from a carer's perspective and from the perspective of having it. It offers insight into the physical reality, yet also seeks to place this in a creative context; however stark :

a grey stone carving of a pigeon-like birdThe Stone Bird
The Stonebird represents the idea that you don't have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters.
Support independent publishing: Buy this book on Lulu.
Support independent publishing: Buy this book on Lulu.
a quote from the MRC and a quote from Simon Wessely .
People with ME are owed an apology.
a sign saying scandal people with severe me are being ignored
Scandal - the ignoring of people with Severe ME.
a screen shot of the webpage
Stonebird Video for Bedding Out
a poster of Linda lying on the ground surrounded by a list of all the things she cannot do
I cannot
a poster listing the 10 reasons
10 Reasons why you should chose to live with Severe ME
a poster of how impossible it is to access help if you have Severe ME
Who will help me ? No one if you have ME
Even When
a poster advertising the Big Shave
The Big Shave 2013
a black and white photo of Linda very ill Every moment, with Very Severe ME
a photo of a surgeon 55 reasons why people with Very Severe ME cannot access health care.
a screenshot of the video The physio-pathological abnormalities, which distinguish a patient with ME from other diseases.
a screenshot of the video Is ME and/or CFS a disease?
a black and white image of Linda in bed In the Shadows of other People's Lives
a pastel painting of a lilly DO NO HARM, DO NO BETRAYAL by Diane
A harrowing, must read account of Severe ME and psychiatric misinterpretation.
The new Voices From the Shadows Trailer, now available to purchase in nine languages.
Made with love for all who have Severe ME
an xray of a brainWhen I am 64 and other false positives : The PACE Trial.
an xray of a brainThe Five Myths that underpin UK ME Policy
ME Support LogoME Support feature : Care for Someone with Severe Myalgic Encephalomyelitis
a screen shot of the web pageA call for a broad-ranging Parliamentary Select-Committee inquiry into UK Government policy on Myalgic Encephalomyelitis (ME)
a diagram of all the issues that need resolving in MEA Human Rights Approach to People with ME
a poster saying how wrong it is to code ME to CFS ME is NOT CFS ! Stonebird Case Definition Poster to download.
a drawing of the Cross Announcing a brand new page- prayers for those who suffer the injustice and agony of Severe ME.
a poster outlining the physical reality of ME 19 - this poster is very, very good - but it does not convey the horror of ME.
a a picture of a fish Riding the Wave (Still) Part Two
a picture of the Community Living Magazine Cover July 1991 Riding the Wave (Still) Part One
a poster advertising the screening on Nov 24 2012 Voices From the Shadows in Hexham
a photo of Linda The Agony of Living with Very Severe ME
a black and white picture of Greg looking out to sea The Agony of Caring for Someone with Very Severe ME
a screenshot of the webpage - a slide show over a union jack The Great UK PACE Trial Scandal
A slideshow.
a black and white sketch of a prison cell with bars on the window I just do not get it !
Why we should not use the term CFS and why we all need to challenge its use and stop being complacent about it.
a comic strip cartoon showing ME and CFS being split Let us say no more CFS
a diagram showing ME and CF and other illness being separated through an hourglass How to separate ME from CFS
a screenshot of the full screen slide show This is Severe ME
Stonebird Autumn Art Installation
a picture of people pushing the boulder of ME up and over a hill Get ready for ME Awareness Week May 12
The entire month of May 2013 is AWARENESS for NID's, including M.E. & Lyme Disease Awareness.
a photo of the book cover Everything Beautiful in its Time
Such a profoundly important, exquisitely beautiful work; I defy anyone to not be moved, horrified and far better informed about ME after reading this book
a screenshot of the webpage - designed to look like an old American drive-in movie theatre The Great American ME Scandal - for Obama
a black and white picture of two eyes A Long Slow Torture unto death 
Who am I?
I am head pain raw and hurting
Hammering deep inside
Where nothing can touch me.
a drawing of an ME Body showing the pain and suffering 25% Group & Stonebird : Do Not Mess with Severe ME
Imagine the gap that exists between the person with Severe ME and you...
a pink heart and a rose Emily Rose: an appreciation by Cathy Stillman-Lowe
Emily Collingridge's passing is a terrible loss - the light that shone so brightly has finally been dimmed after many years of deeply painful struggle. Her extraordinary spirit will however never be forgotten by those whose lives she touched..
a distorted, cracked picture of the world A demented outlaw from my own bed 
I live in a cracked world
Dislocated
Damaged
Assaulted
a painting by Sanda Aronson Art and Comment by Sanda Aronson .
Is is possible to show an illness thru art? Linda Crowhurst (UK) does an admirable job word-painting the illness we both have (called ME myalgic encephalomyalitis in the UK and CFS chronic fatigue syndrome, in the U.S., a politically motivated gov't led downplay of the severity of this illness by naming it "fatigue" ...
a picture of Linda in great pain The sensations creep in silently . 
The sensations creep in silently
My muscles scream in response
Yet nothing is heard
Nothing visible....
a photo of a globe This evil : the global biopsychosocial regime. Learn from the experience of people with ME
a screenshot of the youtube video The Detrimental Effect of Noise in Severe ME
A YouTube Video showing the awful - and lasting suffering caused by noise.
a photo of the suthor, in balck and white Liberating the NHS ? My foot !!
Still conducting my background research into the Government's NHS Consultation on "Choice" , it is instructive to look at the powerful players who are busy Liberating "the NHS budget to hand it over to the corporate sector."
a screenshot of the BJN Magazine website “Unpaid , but as professional as they come.” British Journal of Nursing, by Greg Crowhurst.
a screenshot of the book cover, featuring a detail from a picture by Catherine Ashenfelter Everything Beautiful In Its Time, by Catherine Ashenfelter of the Grace Charity . Such a profoundly important, exquisitely beautiful work; I defy anyone to not be moved, horrified and far better informed about ME , after reading this book. Highly recommended !
a screenshot of the book webpage Care for Someone with Severe ME is now ready and available in paperback -at last !
a poster stating the truth of ME, how it is a WHO Classified neurological disease and will never be cured without biomedical tests and treatment - whereas the lie is to simply ignore all this The Truth Poster
a poster stating how ME is a real disease whereas CFS is a made up condition ME Poster
the Danish flag Please, please`, help Karina : write to the Danish Ambassador.
a screenshot of the poster webpage ME Awareness Week Posters to download
a photo of Karina lying ill in bed Danish Board of Health threatens to commit Karina, a seriously ill ME-patient , to a psychiatric hospital !!
a purple poster saying : be aware PIP is coming 25% Group & Stonebird : DWP Personal Independence Payment (PIP) Consultation Response
the cover of care for Someone with Severe ME I have great pleasure in
announcing the release of my book.
a painting saying all of me hurts Who wants to know ?
a photo of Greg holding his new book Just awaiting the second proof.
a screenshot of our new blog
Publication of Care for Someone with Severe ME is very close now. This blog has been launched to accompany the book.
a poster saying ME is Real Can anyone really claim not to "believe" in ME ? !
ME is assumed to affect about a quarter of a million people in the UK.
a poster saying Voices from the Shadows , Make it Happen, This is an opportunity for the mE community to be heard. Voices From the Shadows out now on DVD !
This is a film that must change hearts and minds. This film is our best hope to get the truth of myalgic encphalomyelitis , a severe and devastating physical disease, out to the world.
a poster saying no to PIP No to PIP !!
a black and white photo of a ghostly pier Tombstone Land 
My head now wanders through the usual
 sea of fog once more
I had no sleep last night.
There is no easy place to be ,  
right here , in my mind.
a poster saying no to cfs Pushed to extremes
The caution order issued to the clinical scientist , found guilty of professional misconduct over the Sarah Myhill case, has been predictably greeted by accusations that he is a victim of "ME extremists."
a woman in pain being held gently The Bullshit 
Back screaming agony
Muscles expanding and contracting
Rippling in my diaphragm
Causing irritation and distress
a woman holding her head Does she want to be well ? 
Someone asked
Do I want to be well
After so many many  years
Of being ill ?
photo of a woman, in great suffering and painFilm Review: Voices From The Shadows
by Simon Overton (editor of "Missed Diagnoses" & Author of "Charcots Bad Idea")
photo of a woman, in great suffering and painTenth Anniversary of the Breakthrough Prayer
We pray for the success of Voices From the Shadows
photo of a woman, in great suffering and pain, holding her hand to her faceVoices From The Shadows
International Premiere at The Mill Valley Film Festival, USA
A black square with Naked ME written on it, in chalkNaked ME
The horror of Severe ME.
A screenshot of the Stonebird Autumn 2011 Art ExhibitionStonebird Autumn Art Exhibition 2011
Stonebird announces the launch of its online 2011 Autumn Art Exhibition , featuring works by Eva Caball and Greg and Linda Crowhurst, in order to raise awareness of the atrocious hidden suffering of Severe ME and Multiple Chemical Sensitivity
The AONM logoM.E. AND FIBROMYALGIA INTERNATIONAL CONFERENCE 2011
The Academy of Nutritional Medicine in association with The Midlands Fibromyalgia Support Group, are delighted to announce their International Conference to be held in Tullamore Ireland on October 9th.
a photo of a very il woman, eyes closed Stonebird : How Do You Help Someone with Severe ME ?
First and foremost you have to remember that the person with Severe ME does not react to the environment in the same way that you, a person without ME, does.
a pen and ink drawing of lots of interconnected circles, with the legend, Build Your Matrix of Truth 17 years ago, my wife spoke the truth that she is ill.
Stonebird : Build a Matrix of Truth
a logo saying defend the NHS that we love Our letter to our MP urging him not to back the NHS Reform Bill
PLEASE do all you can to defend our much loved NHS !
a pastel painting of a very ill woman in great pain and suffering There seems to be a line that most people will not cross friends, neighbours, family, health professionals even, government officials.
They accept I am ill to a degree but simply do not want to know or understand
an oil painting of an open mouth, bloddy teeth. It's too horrible to show; this picture, with its bloody teeth. I wasn't going to
It's just my outrage fulminates , steams so.
a photo of a seagull against grey thunderclouds 12 year old girl with ME, locked up in a psychiatric ward in Spain !!
Please, please do what you can to help.
a photo of light reflecting of the waterSlow Caring
I have become aware of a "Slow Movement", born out of a need for connection, which is taking root around the world
a pastel painting of LInda in great painThis is a picture
This is a picture of Severe ME
a photo of Greg holding his DiplomaStill Defiant !
Caring : it will easily break you, or it will take you places and teach you things you never thought possible.
a photo of blue sky, white cloudsMyalgic Encephalomyelitis:
International Consensus Criteria.
The significance of this game-changer cannot be overemphasized; please click here to read our response.
a photo of Linda, sitting head in her armsDespair
A poem about the invisibility of the severity and the isolation of having a completely misunderstood, misinterpreted illness. It is about the hidden torment of any interaction and the separation of my reality from everybody else; their normality.

For many more articles, please Click Here to visit our Archive


Myalgic Encephalomyelitis is a World Health Organization - classified neurological disease that affects multiple systems of the body, causing severe disability and may lead to death. It is not a psychiatric disorder.


Despite the physical suffering , which is indescribably complex and tormenting, for us it has been a spiritual journey , a continual journey of learning how to cope with the limitations set by the illness and how to be greater than the confines it places upon us both.


What we have discovered is that in order to survive , despite the difficulties, it has been essential to become medically aware, politically aware , self-aware and spiritually aware. It may take years but in order to try and get your needs met, you cannot afford to give your power away to others. Trust has to be earned because opinion is divided and truth is often hidden or obfuscated away. You have to be able to identify and understand your own symptoms, how they impact upon you, what will help you with them, what makes them worse and how to live with the never-ending impact of them. You have to find self belief, you have to fight your corner and be your own advocate or find out who truly understands and is willing to stand with you and fight for you.


A Fact :ME is bigger than AIDS, lung cancer and breast cancer combined. More people have ME than have multiple sclerosis or cystic fibrosis, yet nearly 90% of patients have not been properly diagnosed.


This is an immense journey of the human spirit. This is an immense story of continuing triumph over untold suffering. This is our story and our fight.