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 :
- The 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.
- 10 Carer Rules
- Severe ME : New Book out early
- The 10 Golden Rules
- Very few care.
- 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
- A call for a broad-ranging Parliamentary Select-Committee inquiry into UK Government policy on Myalgic Encephalomyelitis (ME)
- 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.
- 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.
- 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 Long Slow Torture unto death
Who am I? I am head pain raw and hurting Hammering deep inside Where nothing can touch me.
- 25% Group & Stonebird : Do Not Mess with Severe ME
- Imagine the gap that exists between the person with Severe ME and you...
- 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..
- 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" ...
- The sensations creep in silently .
The sensations creep in silently My muscles scream in response Yet nothing is heard Nothing visible....
- The Detrimental Effect of Noise in Severe ME
- A YouTube Video showing the awful - and lasting suffering caused by noise.
- 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."
- 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 !
- Danish Board of Health threatens to commit Karina, a seriously ill ME-patient , to a psychiatric hospital !!
- Publication of Care for Someone with Severe ME is very close now. This blog has been launched to accompany the book.
- Can anyone really claim not to "believe" in ME ? !
- ME is assumed to affect about a quarter of a million people in the UK.
- 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.
- 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.
- 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."
- The Bullshit
Back screaming agony Muscles expanding and contracting Rippling in my diaphragm Causing irritation and distress
- Does she want to be well ?
Someone asked Do I want to be well After so many many years Of being ill ?
- Film Review: Voices From The Shadows
- by Simon Overton (editor of "Missed Diagnoses" & Author of "Charcots Bad Idea")
- Tenth Anniversary of the Breakthrough Prayer
- We pray for the success of Voices From the Shadows
- Voices From The Shadows
- International Premiere at The Mill Valley Film Festival, USA
- Naked ME
- The horror of Severe ME.
- Stonebird 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
- M.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.
- 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.
- 17 years ago, my wife spoke the truth that she is ill.
- Stonebird : Build a Matrix of Truth
- 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 !
- 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
- 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.
- 12 year old girl with ME, locked up in a psychiatric ward in Spain !!
- Please, please do what you can to help.
- Slow Caring
- I have become aware of a "Slow Movement", born out of a need for connection, which is taking root around the world
- This is a picture
- This is a picture of Severe ME
- Still Defiant !
- Caring : it will easily break you, or it will take you places and teach you things you never thought possible.
- Myalgic Encephalomyelitis:
International Consensus Criteria.
- The significance of this game-changer cannot be overemphasized; please click here to read our response.
- 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.
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.