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.


Severe ME:More Notes For Carers

“Compassion, faultless knowledge, decades of shared experience are all in this book. I wouldn't hesitate to recommend this beautiful work of love. If you care for a chronically ill, very fragile person, please read and implement the strategies found on every page. This book is a treasure. ” Nicky Baker


DOWNLOAD FOR FREE

Caring For ME

A Pocket Book Course for Carers

“We are sure this will be a great life saver to many carers out there ...This book offers a caring and helping hand coming from a person of such experience and knowledge in the field.” 25% ME Group

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Severe ME : Notes for Carers

Stonebird is proud to announce the launch of Severe ME: Notes for Carers!

“One of Greg's most important works ...the information here isn't dry or wooden, it lives and breathes.”

Kara Jane Spencer


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Issues of Noise, Light,Touch, Chemical & Movement Sensitivity in Severe/ Very Severe ME that carers need to be aware of.

Living in the Heart of Love

A book to inspire, comfort and uplift those who are suffering.

"To say that 'Living in the Heart of Love' is about indescribable suffering would be accurate, but incomplete. It is about much more."

David Coupar

Very Severe ME : underlying principles of Care

The care needs of people with Severe ME

55 Reasons why it is difficult to treat a person with Very Severe ME

artwork Severe/Very Severe ME BRAVERY IS REQUIRED
artwork THE DIFFICULTIES POSED BY ORDINARY , EVERYDAY, TAKEN-FOR GRANTED THINGS, FOR PEOPLE DIAGNOSED WITH SEVERE/VERY SEVERE ME
What? Be The Change You Want To See
What? WHAT DOES BEING PRESENT ACTUALLY MEAN FOR PEOPLE WITH COMPLEX SYMPTOM EXPERIENCE AND HYPERSENSITIVITY?
How? How Are You Going to Help Me ?
The Skills of an Me Aware Nurse/carer Every Moment With Severe ME
Affirmation means to give your full attention to the other How to Care : the Importance Of Affirmation
Who is speaking out? PROFOUND IMPLICATIONS FOR PEOPLE WITH A DISABILITY; THE UK CORONAVIRUS ACT.
You may feel as if you have fallen off the edge of the world SEVERE ME : THE UNEXPECTED LOSSES
Every day you must fnd a path SAINT OR SINNER? CARING FULL TIME FOR A PARTNER OVER MANY YEARS, THE LOSSES..
You just know it in your gut when you have been listened to THE LONG HAUL CAN BE A VERY LONG TIME : LISTENING SKILLS IN THE CONTEXT OF COMPLEX CHRONIC ILLNESS.
You can only do this together ON BEING A PARTNER TO SOMEONE WITH VERY SEVERE CHRONIC ILLNESS
Even the angels dance slow DANCING AROUND THE IMPOSSIBLE : RELATIONSHIP, COMPLEX HYPERSENSITIVITIES AND MULTI-SYSTEM DYSFUNCTION.
Every noise, movement you make hurts more than you will ever understand FIVE IMPORTANT LESSONS WORTH LEARNING WHEN CARING FOR SOMEONE IN SEVERE PAIN WITH PROFOUND HYPERSENSITIVITIES
ME the awful truth ME : The Awful Truth
a list of 26 years saying will I ever know the truth?. I HAVE A DIAGNOSIS OF VERY SEVERE ME, YET HOW CAN I TRUST THAT DIAGNOSIS ?
a drawing of someone frowning. Why Would Anyone Want To Say They Have Got ME?
a drawing of someone collapsed in a chair. The Torture Of Another Day
a drawing of someone holding their arms out. TEN WAYS TO PROVIDE EXTRAORDINARY CARE
a drawing of someone being held. SEVERE ME : SIX ESSENTIAL SKILLS FOR CARERS
a poster saying nothing is possible. Very Severe ME: It is Time for Something New!
(Guest Blog for the ME Association)
a poster saying focus on the 2% who have Very Severe ME FOCUS ON THE MOST SEVERELY AFFECTED
a screenshot of the MEA article Severe ME Day: A Call to Act with Truth and Integrity
a photo of a candle What Can we Say?
artwork You Cannot Even Define What ME is !
artwork THE PARADOX OF CARING FOR PEOPLE WITH SEVERE ME : why a MOMENT APPROACH is necessary.
artwork CARING FOR SOMEONE WITH SEVERE ME : GREAT WISDOM AND SKILL IS REQUIRED.
artwork Severe ME : What You Don't Say, What You Don't See.
artwork LA EM ME MANTIENE OCULTA
(Thank you to Humbert EM Sfc for this Spanish translation!)
artwork ME Cover Up
artwork Three Steps To Protect People
artwork DO NOT ADOPT THE IOM CRITERIA !!
artwork ME: THE BREAKING WAVE OF TRUTH.
artwork SEVERE ME: THE MOST DIFFICULT CHALLENGE OF ALL.
artwork The Basic Principles Behind Severe ME Aware Care
artwork Severe ME and Intimacy
artwork Corgi Reggae
artwork SEVERE ME : CHALLENGES TO RELATIONSHIP
artwork 25% ME Group and Stonebird : Questions That Must Be Answered
artwork We Say No More!
artwork It is just a Fairy Tale
artwork Fundamentally Flawed
a photo of Linda TOUCH, FEEL,INTIMACY, ALL LOST
May 12th, International ME Awareness Day
artwork Build A Matrix Of Truth
artwork Walking Lightly : Understanding the Moment Approach, part 2
artwork Meeting Need Tenderly
artwork 13 MILLION, 148 THOUSAND 730 MINUTES OF MY PRECIOUS LIFE
artwork Brain Fog in Severe/Very Severe ME
artwork Pain in Severe/Very Severe ME
artwork Paralysis in Severe/Very Severe ME
artwork Perfume Sensitivity in Severe/Very Severe ME
artwork Movement Sensitivity in Severe/Very Severe ME
artwork Light Sensitivity in Severe/Very Severe ME
artwork Touch Sensitivity in Severe/Very Severe ME
artwork Noise Sensitivity in Severe/Very Severe ME
artwork PEOPLE WITH ME ARE IN GRAVE DANGER OF BEING MISREPRESENTED BY PEOPLE AND ORGANISATIONS THAT WILL NOT TRULY REPRESENT THEIR NEEDS
artwork Severe ME : WHY A MOMENT APPROACH IS REQUIRED
a poster listing how invisible people are DECADES OF PSYCHIATRIC SWAY AND INFLUENCE
a poster listing how invisible people are PEOPLE WITH ME ARE ENDANGERED BY A SYSTEM THAT DOES NOT RECOGNISE THEM
a photo of Linda A New Vision
a painting of Linda Very Severe ME : Risk Assessment
artwork Strait-Jacketed by Empty Air, book review by Nancy Blake
artwork 10 GOOD REASONS why ME should not be labelled a Functional Somatic Syndrome
artwork 55 REASONS why NICE must recommend a home visiting, biomedical service,
for people with Severe Myalgic Encephalomyelitis
a poster saying TRUTH Impossible Things
Notes Part 2 Notes for NICE Stakeholders Part 2
London Bus with Notes For NICE Stakeholders on side Notes for NICE Stakeholders Part 1
Omsorgsbehov hos mennesker med svært alvorlig ME
(Norwegian Translation of our 25%/Stonebird Care Document)
Straight-Jacketed by Empty Air The new book: "Straight-Jacketed by Empty Air."
So much more than overwhelming exhaustion Very Severe ME is like
The book cover Introducing the new book: "Living in the Heart of Love"
A Reply from NICE A Reply from NICE
A World of Medical Denial
This level of Torment is a Crime against Humanity A Crime against Humanity
a drawing of a man and a woman hoklding each other in love Five Ways to be a Better Carer
Recognise as Torture? Recognise as Torture?
NICE, a reply to Sir Andrew Dillon A Reply to Sir Andrew Dillon
MEICC Time For #MEICC
by Colleen Steckel
Fly Free Merryn In memory of Merryn Crofts
Corina Duyn Book in a Box Into the Light, Artist Book in a Box by Corina Duyn
An image of Linda Art in Suffering
On Being a Carer by Greg Crowhurst On Being a Carer
Severe ME Day Aug 8th Ten Golden Rules
This is not an argument with psychiatry. Really ? This is not an argument with psychiatry. Really ?
We need a psot-Pace world Hoping for a post-PACE World
The Skills of an ME Aware Carer Ability to listen to instruction and follow it accurately. An understanding of how to be with someone with profound Light, Touch, Movement, Noise & ChemicalSensitivity without triggering a reaction. Ability to flow gently, quietly and gracefully with the person’s energy, so as not to waste it. Skilful contact appropriate to the person’s hypersensitivities. Honest self reflection, awareness and understanding. Skilful timing, knowing when and when not to act. The Skills of an ME Aware Carer : in a nutshell
Lost services, lost lives Lost Services, Lost Lives
Outer space, person on a lonely moon Lonely does not really cover the experience.
We remember We Remember
Severe ME : Aware Care
New Guide (Best viewed in Chrome)
ME : we know better
It is incomprehensible to me, that the medical establishments of the world would accept for more than 2 decades, such stunningly incompetent work product as the so-called Holmes -1988, Fukuda 1994, and Willy Wonka Reeves -2005 'definitions' of something that doesn't really exist. The mysterious Chronic fatigue syndrome The mysterious Chronic Fatigue Syndrome
Dominated by Illness
Greg holding up his arm You cannot pretend
There's a war going on The need for another Chilcot Inquiry
The Pit
Remember us, remember them The role call of the dead
Stonebird is a CFS-free zone.
It is time for psychiatry to dissapear This is why we are all missing
breakthrough Song Breakthrough Song
Why the separation of ME from CFS is long overdue Why the separation of ME from CFS is long overdue
A 10 point nursing model of practice for patients with Myalgic Encephalomyelitis (ME) A 10 point nursing model of practice for patients with Myalgic Encephalomyelitis (ME)
Lives are at stake : PLEASE use the correct terminology Always use the correct term to refer to "ME".
The misrepresentation of Myalgic Encephalomyelitis in nursing. The misrepresentation of Myalgic Encephalomyelitis in nursing.
CFS = anything under the sun you want it to be syndrome Can we safely write about ME anymore ?
ME as close to an off switch on life as one can imagine. Excellent editorial by Sense about Statistics
People with Type 1 diabetes, Cancer and heart problems have a quality of life score 33% higher than people with ME Quality of Life Score in ME
When are they going to study ME? You cannot imagine how much worse it can get
ME is much more than fatigue Biomedical CFS Alert
The dull, feeble exclusiveness of the Royal College of Physicians, the tyranny and ineptitude of the Royal College of Surgeons, and the pettifogging malice and rapacity and imbecility of the Society of Apothecaries What would Thomas Wakely say ?
a person falling over CONTEMPLATE PARALYSIS, IF YOU CAN.
ME was never associated with fatigue How M.E. was never associated with Fatigue.
By Jerrold Spinhirne
There is only agony An open letter to my wife, following David Bowie's death.
a picture of a person in great pain 36 Issues worth pointing out IF A CLINICIAN REFUSES TO “BELIEVE IN ME” OR WRONGLY CONSIDERS IT TO BE A PSYCHIATRIC CONDITION
ME is not CFS , is not SEID There is little hope....
The PACE Trial was bound to fail.
Love gives strength
A Continuum of Paralysis
Paralysed in poetry and images
Transforming Suffering Being Present through Transforming Suffering
The Agony & the Isolation
we're responsible! “We're Responsible...”
No More ! No More !
? Is there an ME Community anymore ?
There is a new dawn ahead Stonebird Statement on the PACE Trial Controversy
How do you convey how very ill you are? How do you convey how very ill you are ?
Objective measurable dysfunction; heart rate erratic, bp low, temp low, oxygen low, hypoxia, low blood perfusion to the brain etc. So tell me. A guest post by Kara Jane Spencer
Has any illness been as vilified as ME? We must unite and stand firm ! A guest post by Malcolm.
We trust in tomorrow even when today is tortured We Survive Another Day
Never, ever give upNever, ever give up!
All days we love each other All days we love each other
I am left weeping from decades of medical neglect Decades of medical neglect
It gets harder every day? ME I choose to survive
how many more will have to die ? In honour of those who have passed on
please light a candle for Lili Terribly Sad News
some leave painfully quickly and young Living on the edge of existence
screenshot Very Severe ME, on a summer day.
a drawing of a house with question marks Are the sick, housebound and carers part of Labour?
Sally Burch Video Presentation This video could save your life !
If I was elected Labour leader... If I was elected Labour leader...
how do you think life is lived, moment by moment in these absolutely horrendous physical circumstances? A Vicious Attack
Living in torment with no real idea of what to do or how to cope moment by moment by momentWalking Away
3 reasons why Labours hands are red with blooodThree reasons why Labour's hands are red with the blood of the disabled and the sick.
ME : the boss battle ?ME : the Boss Battle ?
Severe ME : destroying livesSevere ME : destroying lives poster
Books by Greg CrowhurstBooks by Greg Crowhurst
This is what it is like to have Severe METhis is Severe ME by Merryn Crofts
How can I convey the suffering?The suffering, long beyond words.
Severe ME, where every moment hurts ME : your worse nightmare
Breaking the Silence Stonebird : Breaking the Silence
and you hope that you are not dying, even though you quite probably might be and you hope that tomorrow will be better, even though it is unlikely, because you simply cannot bear to believe that it won't be. And that is how you live your life with Very Severe ME. And you hope
The agony of my wife whispering to me, at 2am that the pain is too much to bear. The pain in caring
a picture of Greg holding Severe ME, Notes for Carers up Announcing “Severe ME: Notes for Carers”
Severe ME, where what you want to do is a million miles away from what you can do, which is nothing, not even think!. A merciless attack
ME does not exist on a continuum with CFS any more than Cancer does. There is no reasonable logic to the neglect of ME patients.
Feeling the ilness destroy her fliching body my mind is always racing:what to do? .What to do? Poster
I cannot tell you what would ease the suffering or how to help me .11pm: Paralysed in the Dark
I cannot stress how important being ME aware is, anything you can do to help prevent deterioration or suffering is incredible.ME Aware Poster
60 Years of struggle and agony. ME 1955-201560 year poster
when you cannot open your eyes, for paralysis has gripped them tight closed, you cannot see the look of kindness or concern on another's face. When a smile is not possible
once you reach this point, you seriously only have yourself, possibly your carer and God. Crossing a Line
It is more than a tragedy, it is the greatest medican scandal everMore than a Tragedy
after more than two decades, we do not believe, any more, that there will be a solution, if only we can find the right expert!We believe in our own power to bring about change.
so much harm can inadvertently be done, just doing ordinary things wrongly timed.From Severe ME : Notes for Carers.
Looking for ME in the sea of CFS ?Looking for ME in the sea of CFS ?
paralysisThe Hidden, Gutting Agony.
end the neglectThe Neglect of People with Severe ME
It is devastating knowing you are left on the edge of survival and society because of a group of powerful people representing vested interests, spreading confusion and untruth about this serious physical disease. ME Awareness Day Poster.
My arms and chest have melted into one large ball of throbbing agonyME Awareness Day Poster.
My body feels dead in so many ways, only open to the pain that holds it together.ME Awareness Day Poster.
My face burns, prickles, is palsied, I cannot even cry out, my eyeballs throb,my lids are shut unable to open.ME Awareness Day Poster.
It is terrifying there is no body of expertise in Severe MEIt is terrifying there is no body of expertise in Severe ME
POSTER
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
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 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 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 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
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 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 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 forfree 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."

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.