Stonebird : the experience of Severe ME

a grey stone carving of a pigeon-like birdThe Stonebird
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.


Resources :

Severe ME : featuring Justice for Karina Hansen

“With unparalleled imagery and quotations the book describes like a surgeon what it is like to live a life as and with someone who is severely stricken with the devastating disease Myalgic Encephalomyelitis.”

Rob Wijbenga

The MOMENT Approach App

“All our experience, over two decades of living with and caring for someone with Very Severe ME, finds expression in the MOMENT Approach.”

Greg & Linda Crowhurst

(COMING SOON) Severe ME : Notes for Carers

Caring for people with at the severe end of the spectrum, can be extremely challenging to get right it requires a quantum leap in understanding.

Latest Postings :

Severe ME is about Needing Care, Hands unable to work, feet unable to work, severe headache and headpain Severe ME is NOT about Fatigue !
POSTER 2
Severe ME is about Pain, Paralysis, Light Sensitivity, Noise Sensitivity Severe ME is NOT about Fatigue !
POSTER
a photo of Linda and her unlying horrednous physical reality
. I Have Learned What is True
(Severely Affected does not mean you have Severe ME)
where n = infinity
. Where n = infinity
the Conservative party manifesto states that those with long-term but treatable conditions,  might lose benefits if they refused recommended treatments. A Society that has lost all moral compass
People with Severe ME are being to rot The Great Myth
If we were dogs we would get more protection,  better healthcareWith ME
Just let go and danceThe medical neglect of ME
I scream and rage at the nothing which consumes meThe Nothing.
this must stopThis Must Stop.
Worlds best Severe ME Nurse Greg Crowhurst "World's Best Severe ME Nurse" by Michael Evison !
a photo of the app on an ipad and iphoneAnnouncing the MOMENT Approach App.
BJN logoSally Burch - Congratulations Greg! BJN Nurse of Year: 3rd Place.
Coming SoonComing soon : the first ever Severe ME App.
Greg holding LindaThank you to the British Journal of Nursing
an alphabet for carersAn Alphabet for Carers
Greg Crowhurst shortlisted for Nurse of the YearWhy Greg deserves Nurse of the Year award by Linda Crowhurst
Short-listed for Nurse of the Year 2015From "Severe ME, Featuring Justice for Karina Hansen".
Greg CrowhurstGreg Crowhurst - Short-listed for Nurse of the Year! by Sally Burch.
I am left weeping and diminished from decades of medical neglectA Life Diminished
a bed and a handWhen I first became ill
Homebound MusicHomebound Music
Time has slowedOnly Now is Important
a poster listing many of the symptoms of Severe MEPoster : How does anyone cope with this level of torment and denial ?
a poster saying Severe ME Day, Remember US, Remember ThemA Comet of Destruction by Sarah-Louise "Feather" Jordan
An exquisitely beautiful, haunting account of the lived reality of Severe ME.
a poster saying Living Death Disease by Sally BurchLiving Death Disease by Sally Burch
The best article we have read on Severe ME. Please read and spread widely.
a poster saying the silence of those too ill to speak is met by apathyApathy (=lack of interest) poster
a poster who has the integrity to speak upFive Myths that every ME Campaigner needs to be aware of
a poster saying ME Awareness Day 2014Announcing the Launch
of the 25% Group & Stonebird
Severe ME Day Webpage
a poster saying if clinicans are serious about ME they will separate it from CFSME poster
a poster saying that the most serious symptoms are often ignoredME poster
a poster saying get real about ME, it is paralysis not fatigueParalysis poster
a poster saying the mididentification of ME with fatigue has to stopME poster
a poster how we need better testing and illness identificationME poster
a poster saying how ME has come to mean anything people it doesME poster
a poster saying it is not easy being a long-term carer for someone with Severe MECarer poster
a poster saying how paralysis can hit in momentParalysis poster
a poster saying how paralysis takes over your whole bodyParalysis poster
a photo of Greg holding LindaThis afternoon....
a poster saying how to make a disease dissapear What has happened to ME patients is morally and scientifically wrong"; Mary Dimmock and Matthew Lazell-Fairman spell out in extraordinary detail just why.
a poster saying how hard it is to care for someone with Severe ME in the face of medical neglect Journal Extract 1
a poster saying the government is doing nothing to help Failed by the Government
a poster saying how there has been a complete fatigue take over Fatigue take-over
a poster saying how CFS is a mechanism for neglecting the most severely ill. CFS : a mechanism for wholescale neglect.
a poster saying the medical  profession has comp0letely failed us Failed by the medical profession.
a black and white photograph of Linda It just would not be so...
a poster with a picture of Linda The state of unutterable indescribable agony
a poster witha 1978 quote from the BMJ ststing that ME is a paralytic disease. In 1978 ME was taken seriously, as this BMJ article shows, there was enough medical evidence, since ignored, to raise alarm.
a photo of the book cover 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 photo of a woman in bed, in agony, sunglasses, 5pm Tues June 17th saying 21 years with Severe ME
21 years of neglect
a poster listing the many symptoms of chemical sensitivity in Severe ME
This is Severe ME : Chemical Sensitivity
a poster listing the many symptoms of movement sensitivity in Severe ME
This is Severe ME : Movement Sensitivity
a poster listing the many symptoms of touch sensitivity in Severe ME
This is Severe ME : Touch Sensitivity
a poster listing the many symptoms of light sensitivity in Severe ME
This is Severe ME : Light Sensitivity
a poster listing the many symptoms of Severe ME
This is Severe ME poster

Stonebird interview with Rob Wijbenga
Chair of the Dutch ME/CFS Association

a sign saying Stonebird
Stonebird, Letter to Danish Ministry of Health re: Karina Hansen
a poster saying there are over 5000 published reasons to treat ME medically andzero reasons to treat ME psychiatrically
ME Awareness Week Poster
a photo of Linda and the words What can I say that will express this illness inside of me ?
This Illness Inside of Me.
a poster saying we remember all those who have died from ME, no more !
ME Awareness Week Poster
a poster saying Do Not Ignore ME
ME Awareness Week Poster :
by Kara Jane Spencer
a photosaying 30 questions
ME Awareness Week :
30 questions for the Government
a photo of a raised fist saying in solidarity and suffering, the truth will be told
ME Awareness Week Poster
photos of Merryn in a hospital bed
This is Merryn, she is 17 and has Severe ME.
a quote saying :I cannot even articulate my distress

About the neglect

The denial

The mistreatment and the abandonment

.
I cannot begin to convey..
a quote from Llewely King :when I look at the federal funding for ME/CFS research, I am aghast: It is not funded at a level that can be expected to produce results. It is, to my mind, a crime against the sick; morally, if not criminally, indictable. To allow the scale of suffering that attends ME/CFS, without making research on the disease a national priority, is close to willful neglect; an abrogation of the high purposes of Hippocrates' calling.
A Bold Proposal for a Suffering Community:
a Manifesto by Llewellyn King.
a phot of Linda
If Only They Could See.
a poster saying ME Cover Up
ME Cover-Up !
a picture of a cross with a bird
Love alone connects
a picture of a man looking out over a bleak landscape
The Poverty of Severe ME
a poster saying Bodily Distress Syndrome is a biased, dangerous, supposition
Bodily Distress Syndrome :
a biased, dangerous supposition.
a poster stop the mistreatment of people with severe me
a poster saying it is so easy to abuse someone with Severe ME
It is So Easy to Abuse Someone with Severe ME
a poster marking 30 years of psychiatric denial
Marking 30 years of denial.
a black and white photo barbed wire with the word Why in red ?
Why ?
Stonebird response to: " ME/CFS is an organic disorder" by Professor Malcolm Hooper
a photo of Severe ME book cover
" This book is not only about Severe ME, but about all levels of ME. "
Susanna Agardy,Emerge Magazine (Australia) Autumn 2014
a poster saying it is enshrined in UK Law that ME is a physical not psychiatric disease
ME is an organic disorder. Professor Malcolm Hooper
a poster saying Karina deserves a second chance
Justice for Karina Hansen’spetition asking for a second opinion from leading ME expert Dr Nigel Speight.
a poster saying A desiderata for Carers
A desiderata for Carers.
a poster How to protect yourself
How to Protect Yourself.
a poster saying risk assessment in Severe ME
Risk Assessment in Severe/Very Severe ME.
a nurse looking at a poster saying 50 reasons why it is difficult to treat someone with Severe ME
55 reasons why it is difficult to treat someone with Severe ME
a black and white photo of Linda with 100 written across it in pink
100 things you cannot do with Very Severe ME
the cover of the Danish document
The Danish Translation of " How to Care, Really Care "
a drawing of a carer comforting a person with severe ME.
An holistic approach to caring for Someone with Severe/Very Severe ME
a poster saying a definition of me with the most severe symptoms is no definition at all.
Stonebird (informal) definition of Severe ME.
Dear Doctor.
For Nurses : an extract from " Severe ME featuring Justice for Karina Hansen"is available for free online.
Sophisticated testing is being denied ME patients.
CBT and GET cannot and should not be used to treat the symptoms of ME
Clinicians are failing people with ME
The isolation of Severe ME
The travesty of CFS/ME
From " Severe ME,
featuring Justice for Karina Hansen."
Incredibly important !
The danger to someone with ME
This is paralysis
Severe ME
featuring Justice for Karina Hansen
is now also available as a Kindle book !
Very Severe M.E.
seeing an invisible illness
is believing.
PLEASE READ
this extraordinary
photographic account.
This is Severe ME :
Kara Jane Spencer.
"Exercise and ME/CFS, the evidence"
Watershed, Bristol 6.30pm Feb 5th 2014.
Book endorsement by
Natalie Boulton, maker of
Voices From the Shadows
Severe ME Featuring Justice for Karina Hansen is out now !
Support independent publishing: Buy this book on Lulu.
10 Carer Rules.
10 Carer Rules
a picture of Linda.
An Honest Appraisal
a poster saying :Not sick enough for institutional care
Severe ME : New Book out early
December !
a poster of the 10 golden rules
The 10 Golden Rules
a poster saying There is no where as lonely as Severe ME
Very few care.
a cartoon of a doctor sitting at a desk
The Doctor's Dilemma eBook. Download and help the people of the Philippines.
an animated GIF of a femnce with the words You Cannot Lay on the Fence with Severe ME
You cannot lay on the fence.
an animated GIF of a magican covering up ME with CFS
This is what's going on.
a list of Severe ME symptoms
I have become what
I would not want to be
an advocate, arm outstretched, protecting the person
A Rule for an ME Advocate
a  poster saying mind, body, emotion, spirit
The Moment Approach
How to help someone with Severe ME
a  poster of different road signs saying No Psychiatrists, Cautuion Compromise and Danger CBT and GET
The ME Highway Code ?
a cartoon of a person being crushed by multiple symptoms and injustice.
Unbearable !
a cartoon of a man standing by a bed.
Very Severe ME :
underlying principles of Care
Norwegian flag.
Hvordan vise omsorg for, virkelig omsorg (How to Care, really Care : Norwegian)
a screenshot of a sky blue background and black slides with quotes from Tom.
Stonebird tribute to
Thomas Hennessy RIP
a drawing of someone caring for another in bed.
How to Care, really Care
for someone with Severe ME
the United States Flag.
Letter to Secretary Sebelius

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.