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.
- A tragic mishmash of ideas.
A response to Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Redefining an Illness Committee on Diagnostic Criteria for ME/CFS, February 10th, 2015
- Can you help ? Has any of the material here on Stonebird helped or inspired you ? Would you be willing to write a short supporting statement ? Please do get in touch for more details. Thanks !
- Inspired by the Tymes Trust's Young Hearts Day, we light this candle for Merryn, who is in hospital. We surround her with love and healing prayers.
- Young Hearts Day : we light a candle and send light, hope and healing out to all young people who have M.E.
- A statement on our sister site, Holy Way, regarding Karina Hansen
- Price of Myalgic Encephalomyeltis.
- Stonebird is immensely proud to publish Wendy Boutilier ’ s outstanding account of the physical price, those who suffer from ME pay.
- Issues of Noise, Light,Touch,Chemical & Movement Sensitivity in Severe/ Very Severe ME that carers need to be aware of.
- Poster : 3pm on Aug 8 is when we particularly remember all those who suffer so terribly, beyond words or comprehension, with Severe ME.
- A Comet of Destruction by Sarah-Louise "Feather" Jordan
An exquisitely beautiful, haunting account of the lived reality of Severe ME.
- Living Death Disease by Sally Burch
The best article we have read on Severe ME. Please read and spread widely.
- What has happened to ME patients is morally and scientifically wrong"; Mary Dimmock and Matthew Lazell-Fairman spell out in extraordinary detail just why.
- In 1978 ME was taken seriously, as this BMJ article shows, there was enough medical evidence, since ignored, to raise alarm.
- 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
- Why ?
Stonebird response to: " ME/CFS is an organic disorder" by Professor Malcolm Hooper
- " This book is not only about
Severe ME, but about all
levels of ME. "
Susanna Agardy,Emerge Magazine (Australia) Autumn 2014
- Justice for Karina Hansen’s petition asking for a second opinion from leading ME expert Dr Nigel Speight.
- For Nurses : an extract from " Severe ME featuring Justice for Karina Hansen"is available for free online.
- Very Severe M.E.
seeing an invisible illness
- Book endorsement by
Natalie Boulton, maker of
Voices From the Shadows
- 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
The isolation of Severe ME
Incredibly important !
- 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.
- 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 !!
- 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.
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.