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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.
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 !!
My wife is a severely ill and disabled person who relies upon DLA.
a poster saying you have until Tuesday to save DLA
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 ?
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 "Charcot’s 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 Caballé 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 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.

For 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.