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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 screenshot of the book webpage Care for Someone with Severe ME is now ready and available in paperback -at last !
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 !!
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 ?

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.