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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 Why does the ME Community have to endure CG53 ?
<"a With Hindsight : Things I would say to myself when I first got ill.
Linda Crowhurst
<"a We are immensely proud to be awarded a "Do Not Go Gentle ~ Triumph In Adversity" Award
<"aDashed Hopes & Inappropriate Services
<"aConcerns about Biomedical CFS, not ME Research.
<"aPrice of Myalgic Encephalomyeltis.
Stonebird is immensely proud to publish Wendy Boutilier ’ s outstanding account of the physical price, those who suffer from ME pay.
<"aHouse and bedbound does not describe Severe ME.
<"aWhat is the word beyond unbearable ?
<"aStop the ME Cover Up : gallery of images.
<"aThe role of the facilitator
<"aA prayer for Aug 8
<"aIssues of Noise, Light,Touch,Chemical & Movement Sensitivity in Severe/ Very Severe ME that carers need to be aware of.
<"a25% Group & Stonebird Aug 8th Press Release
a poster saying remember them, remember us, remember MEPoster : 3pm on Aug 8 is when we particularly remember all those who suffer so terribly, beyond words or comprehension, with Severe ME.
a poster saying the denial of ME is the greatest medical scandal everPoster : the denial of ME is the greatest medical scandal ever
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’s petition 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
a black and white picture of Linda.
UK CFS/ME Research Collaborative
a black and white picture of Linda.
Paralysis, a qualitative study
a screen shot of the website.
Special Facebook page for August 8th
a screen shot of the website.
Webpage for Severe ME day.
a photo of Linda
We Live in an Impossible World
a poster saying  Imagine you are running a marathon at full speed, that is the muscle pain a person with severe me feels at rest
a quote from the MRC and a quote from Simon Wessely .
People with ME are owed an apology.
a sign saying scandal people with severe me are being ignored
Scandal - the ignoring of people with Severe ME.
a screen shot of the webpage
Stonebird Video for Bedding Out
a poster of Linda lying on the ground surrounded by a list of all the things she cannot do
I cannot
a poster listing the 10 reasons
10 Reasons why you should chose to live with Severe ME
a poster of how impossible it is to access help if you have Severe ME
Who will help me ? No one if you have ME
Even When
a poster advertising the Big Shave
The Big Shave 2013
a black and white photo of Linda very ill Every moment, with Very Severe ME
a photo of a surgeon 55 reasons why people with Very Severe ME cannot access health care.
a screenshot of the video The physio-pathological abnormalities, which distinguish a patient with ME from other diseases.
a screenshot of the video Is ME and/or CFS a disease?
a black and white image of Linda in bed In the Shadows of other People's Lives
a pastel painting of a lilly 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
an xray of a brainWhen I am 64 and other false positives : The PACE Trial.
an xray of a brainThe Five Myths that underpin UK ME Policy
ME Support LogoME Support feature : Care for Someone with Severe Myalgic Encephalomyelitis
a screen shot of the web pageA call for a broad-ranging Parliamentary Select-Committee inquiry into UK Government policy on Myalgic Encephalomyelitis (ME)
a diagram of all the issues that need resolving in MEA Human Rights Approach to People with ME
a poster saying how wrong it is to code ME to CFS ME is NOT CFS ! Stonebird Case Definition Poster to download.
a drawing of the Cross Announcing a brand new page- prayers for those who suffer the injustice and agony of Severe ME.
a poster outlining the physical reality of ME 19 - this poster is very, very good - but it does not convey the horror of ME.
a a picture of a fish Riding the Wave (Still) Part Two
a poster advertising the screening on Nov 24 2012 Voices From the Shadows in Hexham
a photo of Linda The Agony of Living with Very Severe ME
a black and white picture of Greg looking out to sea The Agony of Caring for Someone with Very Severe ME
a screenshot of the webpage - a slide show over a union jack The Great UK PACE Trial Scandal
A slideshow.
a black and white sketch of a prison cell with bars on the window 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.
a comic strip cartoon showing ME and CFS being split Let us say no more CFS
a diagram showing ME and CF and other illness being separated through an hourglass How to separate ME from CFS
a screenshot of the full screen  slide show This is Severe ME
Stonebird Autumn Art Installation
a picture of people pushing the boulder of ME up and over a hill 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 screenshot of the webpage - designed to look like an old American drive-in movie theatre The Great American ME Scandal - for Obama
a black and white picture of two eyes A Long Slow Torture unto death
Who am I?
I am head pain raw and hurting
Hammering deep inside
Where nothing can touch me.
a drawing of an ME Body showing the pain and suffering 25% Group & Stonebird : Do Not Mess with Severe ME
Imagine the gap that exists between the person with Severe ME and you...
a pink heart and a rose 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..
a distorted, cracked picture of the world A demented outlaw from my own bed
I live in a cracked world
Dislocated
Damaged
Assaulted
a painting by Sanda Aronson 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" ...
a picture of Linda in great pain The sensations creep in silently .
The sensations creep in silently
My muscles scream in response
Yet nothing is heard
Nothing visible....
a photo of a globe This evil : the global biopsychosocial regime. Learn from the experience of people with ME
a screenshot of the youtube video The Detrimental Effect of Noise in Severe ME
A YouTube Video showing the awful - and lasting suffering caused by noise.
a photo of the suthor, in balck and white 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."
a screenshot of the BJN Magazine website “Unpaid , but as professional as they come.” British Journal of Nursing, by Greg Crowhurst.
a screenshot of the book cover, featuring a detail from a picture   by Catherine Ashenfelter 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 !
a screenshot of the book webpage Care for Someone with Severe ME is now ready and available in paperback -at last !
a poster stating  the truth of ME, how it is a WHO Classified neurological disease and will never be cured without biomedical tests and treatment - whereas the lie is to simply ignore all this The Truth Poster
a poster stating  how ME is a real disease whereas CFS is a made up condition ME Poster
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 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 !!

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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.