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
Archive
a black and white picture of Linda.
UK CFS/ME Research Collaborative
a black and white picture of Linda.
Paralysis, a qualitative study
a screen shot of the website.
Special Facebook page for August 8th
a screen shot of the website.
Webpage for Severe ME day.
a photo of Linda
We Live in an Impossible World
a poster saying  Imagine you are running a marathon at full speed, that is the muscle pain a person with severe me feels at rest
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 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 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 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
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.
a woman slumped in a chair Boxing Day
Boxing Day was the tail end of an obscure Christmas, the fag end of a year of abuse.
A stick figure lying on a bed, the Christmas star shining outsideChristmas wishes
A photo of a woman, all collapsing in on herselfME Spring
The  cold eats into me
Chilling my bones
And sending nerve pain screaming
round my  battered body...
A phot of a lamp, all collapsing on itselfMoments
The moments tick by
So slowly
Yet time is still running out
Days slowly drip by
And in the centre
I sit....
 A candle light burningAdvent Reflections
Every day of December, until Christmas , Stonebird will be posting an Advent Reflection on the reality of living with Very Severe ME.
 The cover of our new book, a woman holding her head in her hands, title saying How To care for Someone with Severe ME, a Stonebird Carer to carer guideStonebird : How to Care for Someone with Severe ME
Communication , an extract from our forthcoming book : How to care for Someone with Severe ME
 The cover of our new book, a woman holding her head in her hands, title saying How To care for Someone with Severe ME, a Stonebird Carer to carer guideStonebird : How to Care for Someone with Severe ME
Partnership , an extract from our forthcoming book : How to care for Someone with Severe ME
 The cover of our new book, a woman holding her head in her hands, title saying How To care for Someone with Severe ME, a Stonebird Carer to carer guideStonebird : How to Care for Someone with Severe ME
The MOMENT approach, an extract from our forthcoming book : How to care for Someone with Severe ME
 The cover of our new book, a woman holding her head in her hands, title saying How To care for Someone with Severe ME, a Stonebird Carer to carer guideStonebird : How to Care for Someone with Severe ME
Coming Soon : our Carer-to-Carer Guide.
 photo of a man outlined against a windowBroken Lips
Do you know what it is like to be an irritation to the one you love ?
 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.
a photo of Emily holding Bella, her dog, a white westieAn Appeal from Emily
Severe ME is utterly devastating. It is time for proper research and proper care. That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she hopes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.
a banner saying DSM V25% Group and Stonebird DSMV Submission
The inappropriate involvement of psychiatry, particularly the Wessely School, in ME in the UK, promoting a psychosocial agenda and even denying the definition and existence of ME as a neurological disease, would make it wrong for the DSM to validate CSSD and SSSD.
a picture of Linda very illBodies of Evidence :Injustices and Opportunities in Central Sensitivity Syndromes by Clara Valverde and Equipo Aquoan .
Stonebird is privileged to publish this truly ground-breaking article on Central Sensitivity Syndromes (CSS) , by Clara Valverde and Equipo Aquoan, which powerfully highlights the social injustices and inequalities that affect people with conditions such as Fibromyalgia , ME and Multiple Chemical Sensitivity . Brilliant.
a stick picture of a person with ME being tormented by swirls and arrowsDancing
Everything is dancing around me
And I feel stretched beyond my limits
a box saying Rapid ResponseLinda's response to the BMJ article : "Medical Research : Dangers of research into chronic fatigue syndrome Nigel Hawkes"
Because a few people are behaving inappropriately, it does not mean that the real physical needs of people with neurological ME are not a genuine issue.
A screenshot of the Carer TimesCarer Times June 24
Why Symptom Control is not enough
A screenshot of the ME Symptom ToolME Symptom Tool
Another first. Use our ME Symptom tool, to help you print out a list of your Symptoms
A screenshot of the ME Symptom MapME Symptom Map
For the first time ever ! A graphic new way to map out the physical symptoms of ME.
a photo of the skyTwo poems by Theresa
In the pain and desolation of illness, love triumphs. Every life is sacred, precious and of infinite value.
a screenshot of The Carer TimesThe Carer Times June 6 2011
One of the greatest barriers that people with ME face are the lack of Randomised Control Trials (RCT's) to back up whatever treatment a Consultant might recommend.
a screenshot of Voices From the ShadowsVoices From the Shadows
The Trailer is now released. Watch, weep and speak-up !!
a screenshot of The Carer Times.The Carer Times June 2011
What people with ME need and have always wanted , is a biomedical service based upon clear , fundamental values that validate the physical disease and multisystem dysfunction. They have never wanted a therapy-led, psychosocial service.
a photo of Amos Dog.How do you survive ?
The recent death of our dog, our comrade this last eleven years , has stripped bare the isolation we endure. How will we cope ?
a photo of Amos Dog.Amos RIP
How hard it was to get up this morning and know that our beloved Amos is dead.
a photo of Linda, in pain.May 14th 2011
Today we continue to pray the Breakthough Prayer for all those who are struggling.
a photo of an autumn leaf on a drainMy World
by Theresa

"Fallen Leaves in the Grate", photo by Piomar
Into the fug and snugness
of my human habitat,
you came racing in, flinging open
an exotic window to the Great Outdoors.
a screen shot of our You Tube video Stonebird ME Awareness Week Video 2011
a photo of a hand held up in a stop gesture Strong Voices
Photo : Stop Hand Gesture by Nutdanai Apikhomboonwaroot
Where are the strong voices speaking up clearly for biomedical tests and treatments for ME ?
a photo of a St Mark's Fly St Mark's Fly
Photo : www.copyright-free-pictures.org.uk
The discovery that the tens of millions long-legged , bug -eyed, enormous creatures that have been pinging me , irritatingly painfully, in the face, on my early morning cycle ride, are called St Mark's Fly, has set me thinking.
a photo Greg holding Linda Good Friday
The Cross is no stranger at our door. We live every day in pain and immense physical, mental and emotional distress.
Linda, very ill One Pixel
Is it just us, or does the experience of living with and caring for someone with very Severe ME mean that along the way, we are talking decades here, most people : I mean, friends, church, neighbours, charities, fellow activists, literally, stop speaking or give-up trying to reach out to you?
The Hardest Hit logo Fight the Cuts to Disability benefit !!
The Hardest Hit have launched an excellent online form, which you can fill in.
sign saying Saying No can be Positive Saying No ! can be positive.
The Grace Charity have just updated their excellent document . It supports M.E. sufferers who choose to not attend the current NHS Chronic Fatigue Syndrome/Myalgic Encephalomyelitis clinics, set up across the country.
a stick picture of womeone with ME being attacked by denial atc ME Attack
I do not want my ME to define me
So I try to define it
to clarify it
to demistify it
to explain it
so others understand...
a sign saying Negated It is not "reassurance " that is required, but proper respect and treatment !!
There is simply nothing more devastating than for a sufferer to be shoddily dismissed by a Neurologist...
a stick picture self portrait by Linda Friday afternoon
I am screaming
My body is screaming
at me.
Throbbing intolerably
many sensations assault
my sense of time and
place....  
a photo of a yellow daffodil against a blue sky You decide....
"She shouldn't have had to go through this for this length of time, she should have the right to end her life if she chooses, I know it isn't right, but is it right for someone to suffer like this for this long??? You decide....." Click here for a response to this comment, left on our YouTube site.
a photo of a camera shadow on a tiled floor Rear window By Eva Caball
Stonebird is proud to publish Eva's incredibly powerful new article about toxins and multiple chemical sensitivity
a box saying NICE How Outrageous !!!
Kevin Short outlines how NICE have decided not to change their Clinical Guideline on ME. This injustice must be vigorously challenged !!
a photo looking at a church tower in the distance framed by a bare rose branch We pray for Pauline
We have just heard the very sad news that Pauline, co-author of The Breakthrough Prayer , a deeply spiritual person , full of love , who endured a dreaful amount of suffering with ME , Cancer and Diabetes, died this morning. In Theresa's words, " A great spirit is gone" We pray tonight at 9pm, especially for Steve , her beloved husband , " one of the saints" says Theresa, and for the daughter and three sons that she leaves behind.
a photo of Linda fallen on the ground Fallen
Linda lies, covered in dirt, where she has fallen and hit her head, hard, on a brick.
a self-portrait by Linda Utterly Broken
The breaks in connection are complex and many layered
a photo of Big Ben Stonebird
UK Government : ME is not "CFS/ME" !!
picture : www.copyright-free-pictures.org.uk
a box saying Pace Trial Stonebird
Pace Trial : the facts at a glance .
a box saying DLA Reform Consultation The 25% Severe ME Group and Stonebird
Neither Reasonable Nor Fair :
Response to Consultation on replacing Disability Living Allowance (DLA) with a Personal Independence Payment (PIP), on behalf of people with Severe ME.
a box saying DLA Reform Consultation The 25% Severe ME Group and Stonebird
DLA Reforms : Severe ME Form Letter.
a box saying DLA Reform Consultation Stonebird
DLA Reforms : What the disability community can learn from the experience of people with ME
a box saying DLA Reform Consultation Stonebird
DLA Reforms at a Glance
Broken of bbritain logo Stonebird : Briefing Document
DLA Reforms
a photo of linda in great pain
Withering Away
a screen shot of the Now is the Time web page
Now is the Time !

Campaign Page launched.

a painting of a bride and groom
Chronic Illness within Marriage :

MA Dissertation now online

a screenshot of the documentNow is the time
NHS Consultation : a must-read Severe ME Response

Please click here to download Now is the time in Word format

Please Click Here for Instructions on how to take part before Monday Jan 17th

a screenshot of the magazine article
The Praise of Suffering
our latest article
in Good News Magazine./a>
a simple poster saying Pace Trial
As Rous concludes : "A dark side to medicine exists." Indeed it does : it's called the PACE trial.
a photo of an autumn leaf on a drainMy World
by Theresa

"Fallen Leaves in the Grate", photo by Piomar
Into the fug and snugness
of my human habitat,
you came racing in, flinging open
an exotic window to the Great Outdoors.
a screen shot of our You Tube video Stonebird ME Awareness Week Video 2011
a photo of a hand held up in a stop gesture Strong Voices
Photo : Stop Hand Gesture by Nutdanai Apikhomboonwaroot
Where are the strong voices speaking up clearly for biomedical tests and treatments for ME ?
a photo of a St Mark's Fly St Mark's Fly
Photo : www.copyright-free-pictures.org.uk
The discovery that the tens of millions long-legged , bug -eyed, enormous creatures that have been pinging me , irritatingly painfully, in the face, on my early morning cycle ride, are called St Mark's Fly, has set me thinking.
a photo Greg holding Linda Good Friday
The Cross is no stranger at our door. We live every day in pain and immense physical, mental and emotional distress.
Linda, very ill One Pixel
Is it just us, or does the experience of living with and caring for someone with very Severe ME mean that along the way, we are talking decades here, most people : I mean, friends, church, neighbours, charities, fellow activists, literally, stop speaking or give-up trying to reach out to you?
The Hardest Hit logo Fight the Cuts to Disability benefit !!
The Hardest Hit have launched an excellent online form, which you can fill in.
sign saying Saying No can be Positive Saying No ! can be positive.
The Grace Charity have just updated their excellent document . It supports M.E. sufferers who choose to not attend the current NHS Chronic Fatigue Syndrome/Myalgic Encephalomyelitis clinics, set up across the country.
a stick picture of womeone with ME being attacked by denial atc ME Attack
I do not want my ME to define me
So I try to define it
to clarify it
to demistify it
to explain it
so others understand...
a sign saying Negated It is not "reassurance " that is required, but proper respect and treatment !!
There is simply nothing more devastating than for a sufferer to be shoddily dismissed by a Neurologist...
a stick picture self portrait by Linda Friday afternoon
I am screaming
My body is screaming
at me.
Throbbing intolerably
many sensations assault
my sense of time and
place....  
a photo of a yellow daffodil against a blue sky You decide....
"She shouldn't have had to go through this for this length of time, she should have the right to end her life if she chooses, I know it isn't right, but is it right for someone to suffer like this for this long??? You decide....." Click here for a response to this comment, left on our YouTube site.
a photo of a camera shadow on a tiled floor Rear window By Eva Caballé
Stonebird is proud to publish Eva's incredibly powerful new article about toxins and multiple chemical sensitivity
a box saying NICE How Outrageous !!!
Kevin Short outlines how NICE have decided not to change their Clinical Guideline on ME. This injustice must be vigorously challenged !!
a photo looking at a church tower in the distance framed by a bare rose branch We pray for Pauline
We have just heard the very sad news that Pauline, co-author of The Breakthrough Prayer , a deeply spiritual person , full of love , who endured a dreaful amount of suffering with ME , Cancer and Diabetes, died this morning. In Theresa's words, " A great spirit is gone" We pray tonight at 9pm, especially for Steve , her beloved husband , " one of the saints" says Theresa, and for the daughter and three sons that she leaves behind.
a photo of Linda fallen on the ground Fallen
Linda lies, covered in dirt, where she has fallen and hit her head, hard, on a brick.
a self-portrait by Linda Utterly Broken
The breaks in connection are complex and many layered
a photo of Big Ben Stonebird
UK Government : ME is not "CFS/ME" !!
picture : www.copyright-free-pictures.org.uk
a box saying Pace Trial Stonebird
Pace Trial : the facts at a glance .
a box saying DLA Reform Consultation The 25% Severe ME Group and Stonebird
Neither Reasonable Nor Fair :
Response to Consultation on replacing Disability Living Allowance (DLA) with a Personal Independence Payment (PIP), on behalf of people with Severe ME.
a box saying DLA Reform Consultation The 25% Severe ME Group and Stonebird
DLA Reforms : Severe ME Form Letter.
a box saying DLA Reform Consultation Stonebird
DLA Reforms : What the disability community can learn from the experience of people with ME
a box saying DLA Reform Consultation Stonebird
DLA Reforms at a Glance
Broken of bbritain logo Stonebird : Briefing Document
DLA Reforms
a photo of linda in great pain
Withering Away
a screen shot of the Now is the Time web page
Now is the Time !

Campaign Page launched.

a painting of a bride and groom
Chronic Illness within Marriage :

MA Dissertation now online

a screenshot of the documentNow is the time
NHS Consultation : a must-read Severe ME Response

Please click here to download Now is the time in Word format

Please Click Here for Instructions on how to take part before Monday Jan 17th

a screenshot of the magazine article
The Praise of Suffering
our latest article
in Good News Magazine.
a simple poster saying Pace Trial
As Rous concludes : "A dark side to medicine exists." Indeed it does : it's called the PACE trial.
a photo of sparklers on New Year's Eve Breakthrough Prayer New Year's day 2011
We pray at this time especially that the year will bring new understanding about the physical reality of ME as a neurological disease.
a photo of the Stonebird looking at a calendar2011 : a wish-list
By the skin of our teeth, we arrive at the end of yet another year of the torture and living hell that is Severe ME. Here is our wish list for 2011 :
a photo of a the morning sun over snowChristmas Day 2010
Each one of us is a gift ...
a YouTube screen shot The Truth of Christmas 2010
Happy Christmas everyone from Stonebird !
a photo of Emily in a hospital bed A Poem from Emily Collinridge, author of The Essential Severe ME Handbook
I am being beaten, my side kicked...

a photo of Emily in bed From 6 to 30: A life with ME by Emily Collinridge, author of The Essential Severe ME Handbook
I loved school and my boyfriend; I could spend hours in a swimming pool and always wanted to climb everything in sight; I couldn't wait to have a proper bike without stabilisers. Life was out there and I was going to live it to the full.
a photo of a red telephone box in the snow A Christmas Message from Emily Collinridge, author of The Essential Severe ME Handbook
Christmas is such a happy, fun time for most people. Hearing what it is like for those with severe ME is likely to make a huge impact on those who've never been in that position (even those with mild or moderate ME) and being reminded of such things will touch the hearts of those who've recovered. So let's use Christmas to get more help and support for people with severe ME.
a photo of two seagulls in flight Breakthrough Prayer, 9pm BST, Saturday , Dec 11
Tonight we pray the Breakthrough Prayer especially for all those who are severely ill, untreated, dying from neglect and a lack of respect for their physical illness.
a sign saying NICE Stakeholder Response to NICE
I am greatly concerned that Clinical Area 1, case definition, concludes that "no conclusive evidence was identified that would invalidate current guideline recommendations. " that Clinical Area 3, management, concludes that : "There is currently no new published evidence that would invalidate current guideline recommendations ."
a photo of a nasturtium growing through a garden seat "Rehabilitation is not synonymous with Recovery...."
Two otherwise hidden moments in a carer's life yesterday . Reading the quote above, from Barbara Wilson, University of Cambridge, in Time magazine and going "Wow", for it was liking stumbling across the meaning of the mysteries, then shortly afterwards lying with my wife on the bed; it's early afternoon and we aren't going anywhere.
a photo of the stonebird looking at a computer screen Stonebird : a Response to the Nov 1 London Demo
Of course I could not attend the demo in London;but looking at the pictures last night I had to wonder would I have crossed the street and joined in ?
a sign saying don't just ban me, cure me, over blood being poured into a blood bag November 1st 2010, Protest, Department of Health, Whitehall , London
The DOH wrote to the MEA to say that people with ME would be excluded from giving blood to "protect the donors health".Let's tell them what we think of that !

For more details please visit the : official demonstration website ,or click here to download a flyer. There is also a poster that is more suitable for people to use at home in windows and cars etc if they are unable to attend the demo. Feel free to download it here.

a photo of a bleak winter field Breakthrough Prayer, 9pm BST, Saturday , Oct 23
We come to tonight's Breakthrough Prayer circle meeting with more news of injustice for people with ME; the ludicrous reason given by the UK Blood Transfusion service for the ban on people with ME giving blood ...alongside the disclosure of the PACE and FINE Trial manuals, which show a blatant disregard for the biomedical truth of ME .

People used the term "ME/CFS" when the Canadian definition was published, thinking that would be adopted, but we can say that this did not happen.

Never use any term to describe the illness apart from the correct one, which is Myalgic Encephalomyelitis (ME). Abandon the forward slash CFS (/CFS) ; if you have to refer to "CFS" then clearly state the truth :" ME , wrongly called 'CFS'.

Greg Crowhurst

a photo of the stonebird looking at a computer screen Stonebird : a Response to the UK Comprehensive Spending Review
The back to work ethic that denies the reality of sickness, as a valid state and the covert message that if you are sick your are scrounging., started by Labour , is carried to unprecedented new levels of denial, by the CSR.
a photo of an empty lane

Winsome, By Joy

" What a winsome disease this is...."

a photo of a woman holding her hands over her mouth

WITHOUT A MASK By Eva Caballé

And in this decaying world, the worst is to be spineless and to have no personality.

a photo a lightening strike

(Photo :Lightning Strike by Mark Coldren)

Attack over the Lightening Process

I've been attacked by, yet again, over my stand on the Lightening Process .

a photo of the flag of Chile

Waiting on a phoenix

Four - fifteen in the morning and I'm thinking; what will it take for a phoenix to reach us here ? I hold Linda, my wife's, hand as Florencio Avalos emerges from the escape capsule ; his young son bursting into tears.

a photo of Linda paralysed and in pain

10/10/10

"There are so many things to do in the emptiness of days..."

a photo of a man walking towards a group of people with their back to him

Ten Rules for an ME Activist

"I have repeatedly said we should never compromise with falsehood and wickedness." Ghandi

a photo of a man walking on a wet beach

The Apprentice : Severe ME Carer Style

It 's a format that is screened all over the word. A TV show where a group of incredibly ambitious 20 /30 somethings try to convince a wealthy business man to take them on, as an "apprentice" for a 6 figure salary.

I wonder what the show might be like from a Severe ME Carer perspective ?

a photo of two hands holding

The Formation of a Breakthrough Prayer Circle

The Breakthrough Prayer Circle, for anyone who wants to join in, is on Saturday 9th October at 9pm BST.
a cartoon of a smiling suitcase

Stonebird : Briefing notes on the CDC Empirical Case Definition for CFS :

I spent a lot of time recently searching for a concise overview of the CDC Criteria and couldn’t find one – here’s what I was trying to find out :
a drawing of Death

Pseudo Science in the UK :

A Stonebird response to : Peter White's Psychiatric misdiagnoses in patients with chronic fatigue syndrome.
a pastel drawing of a young boy dancing

The Dance !

Greg Crowhurst has written a children's book : The Dance, part one of the LightNet Trilogy, which is currently doing the rounds.
a photo of little white dog asleep her head on a cushion

Hold on , we are doing our best

I have read many of your mails and some have made me so sad .

Joy

a photo of the stonebird looking at a computer screen, with response written on it Psychological Assault : a response to AfME's stance on the proposed Bristol Lightning Process Trial.
As it did over the NICE guidelines Action for ME has chosen again to take a lone controversial stand on ME, one not supported by the majority of UK ME Charities.
 a photo of Greg playing his guitarNobody knows how hard it is with ME
Our latest YouTube Video
a pen and ink representation of Linda behind a grid of lines A Stick Picture exhibition about Severe ME by Linda Crowhurst Part 2
They represent the starkness of my situation and how this paralysing illness has taken away so much of me.
A photo of a pile of clothes over a chair and a dusty, cluttered desk Dust
Everywhere I  look is
dust
Letters pile up go
unanswered
a photo of the stonebird looking at a computer screen The Stonebird (informal) Definition of Severe ME
Severe ME is a hellish experience that you live and endure without treatment, cure or respect.
a hand holding out an empty purse Hit the Bankers, not ME !
Right across Europe it's the sick, the poor, the vulnerable, who are being made to pay for the sins of the bankers.
a photo of Linda looking very ill I am still me
Our new You Tube video.
a photo of Linda in pain ME : Your Worse Nightmare
...I want you to think of the worst illness you have ever had
a photo of Emily in hospital The Essential Severe ME Book
"After many years of being housebound and bedbound with ME, Emily Collingridge has put her heart and soul into this book, which should prove an invaluable resource for other people in a similar position" Simon Lawrence, 25% ME Group
Dreams that Kill.

Stonebird is proud to publish the latest article by Eva Caballé , author of "Missing: A life broken by Multiple Chemical Sensitivity."

a woman lying on her bed
a wire brush Arms on Fire
There has probably never been a better description of the pain of Severe ME than this extraordinary article by Joss.