The politics of Severe ME


Where are the strong voices speaking up clearly for biomedical tests and treatments for ME ?

Where are the strong voices standing up for the separation of ME and CFS ?

Anyone who really has ME knows they are being abused by the system . They know that none of the Charities are effectively speaking up and bringing about radical change .

There are not enough people saying the right things, doing the right things, challenging the institutions effectively enough holding seats of power to make a real difference.

How many more decades do we have to be abused and compromised away ?

It is uncomfortable to ask yourself :

  • Are you compromising ?
  • Are you challenging ?
  • Are you acting ?

....and if you are not, who have you given your power to to speak up on your behalf ?

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.

<"Labour, the Coalition and the Biopsychosocial Model
<"aphotHas Action for ME crosed a line too far ?
<"aFatigue : a slap in the face and an insult
<"a Why does the ME Community have to endure CG53 ?
<"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.
<"aStop the ME Cover Up : gallery of images.
<"a25% Group & Stonebird Aug 8th Press Release
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 who has the integrity to speak upFive Myths that every ME Campaigner needs to be aware of
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 the government is doing nothing to help Failed by the Government
a poster saying how CFS is a mechanism for neglecting the most severely ill. CFS : a mechanism for wholescale neglect.
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 sign saying Stonebird
Stonebird, Letter to Danish Ministry of Health re: Karina Hansen
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 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
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.
a screenshot of the BJN Magazine website “Unpaid , but as professional as they come.” British Journal of Nursing, by Greg Crowhurst.
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
a screenshot of the poster webpage ME Awareness Week Posters to download
a purple poster saying : be aware PIP is coming 25% Group & Stonebird : DWP Personal Independence Payment (PIP) Consultation Response
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 !!
a poster saying no to cfs Pushed to extremes
The caution order issued to the clinical scientist , found guilty of professional misconduct over the Sarah Myhill case, has been predictably greeted by accusations that he is a victim of "ME extremists."
a pen and ink drawing of lots of interconnected circles, with the legend, Build Your Matrix of Truth 17 years ago, my wife spoke the truth that she is ill.
Stonebird : Build a Matrix of Truth
a logo saying defend the NHS that we love Our letter to our MP urging him not to back the NHS Reform Bill
PLEASE do all you can to defend our much loved NHS !
a photo of blue sky, white cloudsMyalgic Encephalomyelitis:
International Consensus Criteria.
The significance of this game-changer cannot be overemphasized; please click here to read our response.
a photo of Emily holding Bella, her dog, a white westieAn Appeal from Emily
Severe ME is utterly devastating. It is time for proper research and proper care. That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she hopes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.
a banner saying DSM V25% Group and Stonebird DSMV Submission
The inappropriate involvement of psychiatry, particularly the Wessely School, in ME in the UK, promoting a psychosocial agenda and even denying the definition and existence of ME as a neurological disease, would make it wrong for the DSM to validate CSSD and SSSD.
a picture of Linda very illBodies of Evidence :Injustices and Opportunities in Central Sensitivity Syndromes by Clara Valverde and Equipo Aquoan
Stonebird is privileged to publish this truly ground-breaking article on Central Sensitivity Syndromes (CSS) , by Clara Valverde and Equipo Aquoan, which powerfully highlights the social injustices and inequalities that affect people with conditions such as Fibromyalgia , ME and Multiple Chemical Sensitivity . Brilliant.
a box saying Rapid ResponseResponse to the BMJ article : "Medical Research : Dangers of research into chronic fatigue syndrome Nigel Hawkes"
Because a few people are behaving inappropriately, it does not mean that the real physical needs of people with neurological ME are not a genuine issue.
A screenshot of the Carer TimesCarer Times June 24
Why Symptom Control is not enough
a screenshot of The Carer TimesThe Carer Times June 6 2011
One of the greatest barriers that people with ME face are the lack of Randomised Control Trials (RCT's) to back up whatever treatment a Consultant might recommend.
a screenshot of The Carer Times.The Carer Times June 2011
What people with ME need and have always wanted , is a biomedical service based upon clear , fundamental values that validate the physical disease and multisystem dysfunction. They have never wanted a therapy-led, psychosocial service.
a photo of a hand held up in a stop gesture Strong Voices
Photo : Stop Hand Gesture by Nutdanai Apikhomboonwaroot
Where are the strong voices speaking up clearly for biomedical tests and treatments for ME ?
Linda, very ill One Pixel
Is it just us, or does the experience of living with and caring for someone with very Severe ME mean that along the way, we are talking decades here, most people : I mean, friends, church, neighbours, charities, fellow activists, literally, stop speaking or give-up trying to reach out to you?
sign saying Saying No can be Positive Saying No ! can be positive.
The Grace Charity have just updated their excellent document . It supports M.E. sufferers who choose to not attend the current NHS Chronic Fatigue Syndrome/Myalgic Encephalomyelitis clinics, set up across the country.
a photo of a camera shadow on a tiled floor Rear window By Eva Caballé
Stonebird is proud to publish Eva's incredibly powerful new article about toxins and multiple chemical sensitivity
a box saying NICE How Outrageous !!!
Kevin Short outlines how NICE have decided not to change their Clinical Guideline on ME. This injustice must be vigorously challenged !!
a photo of Big Ben Stonebird
UK Government : ME is not "CFS/ME" !!
picture : www.copyright-free-pictures.org.uk
a box saying Pace Trial Stonebird
Pace Trial : the facts at a glance .
a box saying DLA Reform Consultation The 25% Severe ME Group and Stonebird
Neither Reasonable Nor Fair :
Response to Consultation on replacing Disability Living Allowance (DLA) with a Personal Independence Payment (PIP), on behalf of people with Severe ME.
a box saying DLA Reform Consultation The 25% Severe ME Group and Stonebird
DLA Reforms : Severe ME Form Letter.
a box saying DLA Reform Consultation Stonebird
DLA Reforms : What the disability community can learn from the experience of people with ME
a box saying DLA Reform Consultation Stonebird
DLA Reforms at a Glance
Broken of bbritain logo Stonebird : Briefing Document
DLA Reforms
a screenshot of the documentNow is the time
NHS Consultation : a must-read Severe ME Response

Please click here to download Now is the time in Word format

Please Click Here for Instructions on how to take part before Monday Jan 17th

a simple poster saying Pace Trial
As Rous concludes : "A dark side to medicine exists." Indeed it does : it's called the PACE trial.
a photo of the Stonebird looking at a calendar2011 : a wish-list
By the skin of our teeth, we arrive at the end of yet another year of the torture and living hell that is Severe ME. Here is our wish list for 2011 :
a sign saying NICE Stakeholder Response to NICE
I am greatly concerned that Clinical Area 1, case definition, concludes that "no conclusive evidence was identified that would invalidate current guideline recommendations. " that Clinical Area 3, management, concludes that : "There is currently no new published evidence that would invalidate current guideline recommendations ."
a photo of a nasturtium growing through a garden seat "Rehabilitation is not synonymous with Recovery...."
Two otherwise hidden moments in a carer's life yesterday . Reading the quote above, from Barbara Wilson, University of Cambridge, in Time magazine and going "Wow", for it was liking stumbling across the meaning of the mysteries, then shortly afterwards lying with my wife on the bed; it's early afternoon and we aren't going anywhere.
a photo of the stonebird looking at a computer screen Stonebird : a Response to the Nov 1 London Demo
Of course I could not attend the demo in London;but looking at the pictures last night I had to wonder would I have crossed the street and joined in ?
a sign saying don't just ban me, cure me, over blood being poured into a blood bag November 1st Protest, Department of Health, Whitehall , London
The DOH wrote to the MEA to say that people with ME would be excluded from giving blood to "protect the donors health".Let's tell them what we think of that !

For more details please visit the : official demonstration website ,or click here to download a flyer. There is also a poster that is more suitable for people to use at home in windows and cars etc if they are unable to attend the demo. Feel free to download it here.

a photo of the stonebird looking at a computer screen Stonebird : a Response to the UK Comprehensive Spending Review
The back to work ethic that denies the reality of sickness, as a valid state and the covert message that if you are sick your are scrounging., started by Labour , is carried to unprecedented new levels of denial, by the CSR.
a photo of a woman holding her hands over her mouth

WITHOUT A MASK By Eva Caballé

And in this decaying world, the worst is to be spineless and to have no personality.

a photo a lightening strike

(Photo :Lightning Strike by Mark Coldren)

Attack over the Lightening Process

I've been attacked by, yet again, over my stand on the Lightening Process .

a photo of the flag of Chile

Waiting on a phoenix

Four - fifteen in the morning and I'm thinking; what will it take for a phoenix to reach us here ? I hold Linda, my wife's, hand as Florencio Avalos emerges from the escape capsule ; his young son bursting into tears.

a photo of a man walking towards a group of people with their back to him

Ten Rules for an ME Activist

"I have repeatedly said we should never compromise with falsehood and wickedness." Ghandi

a cartoon of a smiling suitcase

Stonebird : Briefing notes on the CDC Empirical Case Definition for CFS :

I spent a lot of time recently searching for a concise overview of the CDC Criteria and couldn’t find one – here’s what I was trying to find out :
a drawing of Death

Pseudo Science in the UK :

a photo of the stonebird looking at a computer screen, with response written on it Psychological Assault : a response to AfME's stance on the proposed Bristol Lightning Process Trial.
As it did over the NICE guidelines Action for ME has chosen again to take a lone controversial stand on ME, one not supported by the majority of UK ME Charities.
a hand holding out an empty purse Hit the Bankers, not ME !
Right across Europe it's the sick, the poor, the vulnerable, who are being made to pay for the sins of the bankers.
a photo of Linda sitting in a wheelchair EAME/25% Group Survey by Greg & Linda Crowhurst
The severely affected in Norfolk and Suffolk receive virtually no ME service whatsoever.
a photo of Big Ben, London 25% Group Submission to the Gibson Inquiry by Greg Crowhurst
This will be revealed as one of the biggest medical scandals in history.

(picture : www.copyright-free-pictures.org.uk)