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.
an old medical book illustration of a man with many wounds

XMRV : the Stonebird random fact generator !

(Press your browser's "Reload"Button for another XMRV fact .)

a photo of Greg holding Linda Rad ! How people with ME can change the world.
We may not be able to organize, to get together at all, to march in the streets : but we still have a very important job to do.
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.

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.