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 :

Caring For ME

A Pocket Book Course for Carers

If you care for someone with ME, then you have to be the best carer you can possibly be!

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

Straight-Jacketed by Empty Air

“Psychiatry's shameful involvement in Myalgic Encephalomyelitis.”

FREE eBook

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

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

Latest Postings :

                    Three Steps To Protect People
                    DO NOT ADOPT THE IOM CRITERIA !!
                    ME: THE BREAKING WAVE OF TRUTH.
                    The Basic Principles Behind Severe ME Aware Care
                    Severe ME and Intimacy
                    Corgi Reggae
                    A review of M.E. and Me: A Doctor's Struggle with Chronic Fatigue Syndrome by Dr K.N. Hng
                    Christine's Story : a journey with ME and Ireland's Health Service.
a table with 3 legs missing
                    ME: The Fatigue Cover-Up
                    Paintings by John Ashenfelter
                    WE REFUSE TO GIVE IN
                    VÅRD AV PERSONER MED SVÅR ME (Swedish Translation of The Care Needs of People With Severe ME).
                    ME and Fatigue
ME is a disease that places 
                            a greater physical burden
                            on patients than cancer, 
                            stroke, multiple sclerosis 
                            and Type I diabetes.
                    The Crushing Physical Burden of ME
black and white shot of bedroom
                    Paralysis City
cluttered shelf
                    I have been 100% bed-confined for 25 years due to my condition of profoundly severe ME, since 1979....
                    Stonebird NEW FREE CARE GUIDE:
                    Silence Challenge for Severe M.E. Amanda Hendrie
                    Remember Us, Remember Them, Remember ME
                    Stonebird Response to NICE Guideline draft Scope
                    Greg Crowhurst on the Gary Burgess ME Show
                    Announcing my new book : Caring For ME
                    This is Severe ME
                    25% ME Group and Stonebird : Questions That Must Be Answered
                    We Say No More!
                    It is just a Fairy Tale
                    Fundamentally Flawed
a photo of Linda 
                    TOUCH, FEEL,INTIMACY, ALL LOST
May 12th, International ME Awareness Day
                    Build A Matrix Of Truth
                    Walking Lightly : Understanding the Moment Approach, part 2
                    Meeting Need Tenderly
                    Sophie Cooklyn : Severe to very severe M.E. is NOT ‘just’ M.E. and it MUST be treated differently!
                    13 MILLION, 148 THOUSAND 730 MINUTES OF MY PRECIOUS LIFE
                    Brain Fog in Severe/Very Severe ME
                    Pain in Severe/Very Severe ME
                    Paralysis in Severe/Very Severe ME
                    Perfume Sensitivity in Severe/Very Severe ME
                    Movement Sensitivity in Severe/Very Severe ME
                    Light Sensitivity in Severe/Very Severe ME
                    Touch Sensitivity in Severe/Very Severe ME
                    Noise Sensitivity in Severe/Very Severe ME
pictures of Merryn 
                    Merryn Crofts: Please Spread Awareness
                    Severe ME : WHY A MOMENT APPROACH IS REQUIRED
a poster listing how invisible people are
a poster listing how invisible people are
a photo of Linda
                    A New Vision
a painting of Linda
                    Very Severe ME : Risk Assessment
a photo of Johnny Toes against a starry background
                    The Power of Puppetry : a Tribute to Corina Duyn
                    Strait-Jacketed by Empty Air, book review by Nancy Blake
                    10 GOOD REASONS why ME should not be labelled a Functional Somatic Syndrome
                    55 REASONS why NICE must recommend a home visiting, biomedical service,
for people with Severe Myalgic Encephalomyelitis
a poster saying TRUTH
                    Impossible Things
                    GAME: Global Advocates 4 Myalgic Encephalomyelis.
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)
#TimeforUnrestbecause #ME kills
                                Time For Unrest, Because ME Kills
by Laura Vitale
Straight-Jacketed by Empty Air
                        The new book: "Straight-Jacketed by Empty Air."
Christmas Tree
                        A mini essay on Very Severe/Severe ME
and the festive season by Ruth Braham
Merryn Crofts
                        A review of Unrest by Clare Norton
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
                        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
Severe ME centered audio project
Severe ME centered audio project
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
A letter to NICE
A letter to NICE
Greg holding Linda
NICE Guideline CG53 :
a Human Rights issue for people with ME?
NICE Guideline 53 is not fit for purpose
NICE Guideline 53
is not fit for purpose .
Care Needs of People with Severe ME
New Care Guide .
A reply to the Department of Health
A Reply to the Department of Health .
A reply from the Department of Health
A Reply from the Department of Health .
An open letter to the Secretary of State
An open letter to the Secretary of State for Health, regarding the JCPMH MUS Report.
NICE does not list ME as a Functional Somatic Disorder
NICE does not list ME as a Functional Somatic Disorder.
what about me

ME is not MUPS, please sign this Dutch Petition.
25% & Stonebird Response

25% Group and Stonebird Response to BACME article on care provision for severe ME.
ME is a physical disease

JCPMH : Will you speak out ?

Why ME must be removed from the JCPMH Report

THE POWER OF PROPAGANDA ? by Margaret Williams
The Cost of Collusion

The Cost of Collusion by Margaret Williams
Today is another day lost

figure paralysed standing and lying

Channelopathy : an important issue for those with Myalgic Encephalomyelitis.
No Mas

Have I wasted my time fighting for “ME” ?
The searing pain soars higher still

Remember the most ill
How NICE failed people with ME

How NICE failed people with ME

Severe ME, Patient Surveys
The disease that used to be known as ME

The disease that used to be known as ME
They use our name but they do not treat our disease. ME/CFS is not Myalgic Encephalomyelitis

They use our name but they do not treat our disease
I care 24/7 for that I receive £3250 a pear carer Allowance.

End Carer Poverty !!
Do CBT and GET. Get worse. Be counted as Recovered.

Official UK Policy towards ME ?

Severe ME : contemplate paralysis if you can
Hey psychiatry leave the kids alone. CBT and GET is harmful in ME. End the MAGENTA TRial

End the MAGENTA Trial !
Today we say no more !

ME Consciousness in 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

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
No More !

Stonebird : Severe ME Day 2016

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
Facebook logo

To the ME Community on Facebook : an enormous thank you !!!
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
What would Thomas Wakely say ?
a person falling over
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
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
Please Mr Corbyn Please Mr Corbyn
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
Elizabeth D'Angelo : an incredibly talented artist.
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 
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 Day 2015Severe ME Day 2015
ME : do not try to impose your values  views, or your prioritiesSevere ME Day 2015
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
Rocket Fuel for CarersSevere ME : Notes for Carers, Preview Video.
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
My arms and chest have melted into one large ball of throbbing agonyAmanda Jane Hendrie :
This is real ME.
It is devastating
knowing you are
left on the edge
of survival and
society because
of a group of
powerful people
vested interests,
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
Severe ME is about Needing Care, Hands unable to work, feet unable to work, severe headache and headpain Severe ME is NOT about Fatigue !
Severe ME is about Pain, Paralysis, Light Sensitivity, Noise Sensitivity Severe ME is NOT about Fatigue !
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.
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

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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.