Stonebird

Government propaganda against the disabled

2012-02-07T00:15:00.000-08:00

The Nazis depicted the disabled as “drains” on the state. We are witnessing exactly the same thing in this country, only this time the The Sun and Daily Express-reading ignoramuses and pathologically tribalist bumpkins of Britain are carrying out violence and abuse on behalf of the state; the very same state that will induce their young to fight a future war with Iran. A war from which many will return physically disabled.
http://buddyhell.wordpress.com/

If we all know, are told and believe, that all disabled people are motherfucking scroungers then who on earth will complain?
http://nickyclark.blogspot.com/2011/12/propagate-this.html

Last April, employment minister Chris Grayling said the “vast majority” of new claimants for sickness benefits were in fact able to go back to work, after official figures showed three-quarters of applicants for employment and support allowance (ESA) failed to qualify for assistance.
http://www.independent.co.uk/news/uk/politics/scroungers-rhetoric-over-benefits-fuels-abuse-say-charities-6579630.html

Depends what you mean by ‘disabled’. The definition of disability was stretched to breaking point under Labour, which is how we ended up with more than two-and-a-half million people claiming incapacity benefit.
Even naughty schoolboys diagnosed with the make-believe disease ‘Attention Deficit Hyperactivity Disorder’ (ADHD) are classified as disabled.

Read more: http://www.dailymail.co.uk/debate/article-2047593/Motability-schemes-starting-resemble-worst-excesses-Arthur-Daley-.html#ixzz1lgGG2kWB

“Disabled Benefit Recipient”. What word just popped into your head? Scrounger? Faker? Fraud? I walk with crutches, I’ve been called all of these, and worse, by complete strangers in the street. I’ve even been physically assaulted simply for walking while disabled. And this was going on even when I was still in full time employment and claiming no disability benefits whatsoever. Nor is any of this unusual, it is in fact the near ubiquitous experience of disabled people in contemporary Britain after years of deliberate and calculated demonization of disabled people by the media. And in the past 18 months it has become far, far worse, the attacks from the tabloidscoming in near daily. We have our own names for them now, the Hate Mail, the Vexpress, the Scum, because we know that all we can expect from them, and their puppetmasters at the Department of Work and Pensions, is their hatred and the carefully selected stories calculated to convince you that we are all fakers living a life of luxury because we’re too lazy to work.

http://blog.38degrees.org.uk/2011/12/01/on-being-demonized-a-disabled-38-degrees-members-perspective/

So at a time of the worst recession for a generation, the BBC make another programme about benefit cheats?

With Sickness benefit fraud at just 0.5%, the BBC make another programme about benefit cheats?

With Disability benefit fraud at just 0.3% the BBC make another programme about benefit cheats?

With government overpayments actually costing the country more than sickness/disability benefit fraud, the BBC make another programme about benefit cheats?
At a time of rising disability hate crime, stigmatisation and abuse, the BBC make another programme about benefit cheats?

At a time of the biggest erosion of welfare provision in our lifetimes, the BBC make another programme about benefit cheats?

At a time of corruption of MPs, corruption of our media, corruption of our police force, the BBC make another programme about benefit cheats?

http://liberalconspiracy.org/2011/11/03/were-close-to-recession-and-yet-the-bbc-picks-on-benefits-claimants/

..demonise anyone in receipt of public money. If unemployed or disabled people are just a faceless mass of scroungers, for example, who cares if their benefits are cut? The press certainly helps: this week's Sunday Times featured the headline "End the something for nothing culture", above a picture of the Gallagher family from the comedy-drama Shameless. According to the tagline, the entirely fictional Gallaghers "typify the 'money for nothing' culture". Other grotesque caricatures from TV – such as Vicky Pollard and Wayne and Waynette Slob – are also being wheeled out by journalists as supposedly accurate portrayals. Sitcoms and sketch shows are being used as political devices to hack slices off the welfare state. But it is being fuelled by government rhetoric on benefits. "If we want them to tap dance, then they will tap dance," a Whitehall official is quoted in the Sunday Times piece as saying of benefit recipients. It's a callous attempt to strip unemployed people of their humanity, but it works.

http://www.whatdotheyknow.com/request/david_cameron_pm_or_merely_party

From 1933 to 1945, Nazi Germany carried out a campaign to "cleanse" German society of individuals viewed as biological threats to the nation's "health." Enlisting the help of physicians and medically trained geneticists, psychiatrists, and anthropologists, the Nazis developed racial health policies that began with the mass sterilization of "genetically diseased" persons and ended with the near annihilation of European Jewry.

http://www.ushmm.org/museum/exhibit/online/deadlymedicine/

Hate Crime in the UK

2012-02-06T04:13:00.000-08:00

The spate of offensive articles recently , attacking people with ME, needs to be seen against the backdrop of an alarming rise of Hate Crime against people with a disability in the UK :

From Stonewall :

Definition of hate crime

The Association of Chief Police Officers distinguishes between a hate incident and a hate crime. A hate incident is:

“Any incident, which may or may not constitute a criminal offence, which is perceived by the victim or any other person, as being motivated by prejudice or hate.”

Whilst a hate crime is defined specifically as:

“Any hate incident, which constitutes a criminal offence, perceived by the victim or any other person, as being motivated by prejudice or hate.”

ww.stonewall.org.uk/at_home/hate_crime_domestic_violence_and_criminal_law/2638.asp

From Scope :

20% of repeat victims of anti-social behaviour are disabled people

Only 638 people were prosecuted under disability hate crime legislation in 2009/10, compared to 12,131 people for racial and religiously aggravated crimes. This amounts to 4.6% of the total number of prosecutions, based on the CPS annual report.
There were 1,569 recorded disability hate crimes across England, Wales and Northern Ireland during 2010, an increase from 1,294 incidents occurring in 2009, according to recent figures published by the Association of Chief Police Officers.
3 of the 44 police forces in England and Wales reported 2 or fewer disability hate crimes in 2010. One reported none.

Deaf and disabled people in the UK are regularly mocked, taunted, robbed, assaulted and harassed. Their homes are attacked; their cars damaged and the places where they live, work and socialise are also targeted. In some cases, anti-social behaviour escalates into more sinister and serious crimes ending in kidnap, rape, torture and murder.

The motivation behind these crimes is not always clear but many bear the hallmarks of hate crimes. Disabled people frequently report that their disability was a factor in the crimes committed against them. Despite this, the overwhelming majority of these incidents are not investigated, prosecuted or sentenced as disability hate crimes.

Disability hate crime remains largely invisible. Its existence is frequently denied, disabled people who report it are routinely ignored, and its perpetrators often go unpunished.

http://www.scope.org.uk/campaigns/disability-discrimination/disability-hate-crime

From the Crown Prosecution Service :

The CPS wants disabled victims and witnesses and their families and communities, as well as the general public, to be confident that the CPS understands the serious nature of this type of crime. Feeling and being unsafe or unwelcome – from shunning or rejection to violence, harassment and negative stereotyping – has a significant negative impact on disabled people's sense of security and wellbeing. It also impacts significantly on their ability to participate both socially and economically in their communities.

· The Disability Rights Commission's Attitudes and Awareness Survey (2003) revealed that 22 per cent of disabled respondents had experienced harassment in public because of their impairment. Incidents of harassment were more acute among 15-34 year olds with 33 per cent of this group of disabled people experiencing harassment (DRC, 2003).

· Eight per cent of disabled people in London suffered a violent attack during 2001-02 compared with four per cent of non-disabled people. Research by Greater London Action on Disability (GLAD) found that, "The attacks have a major impact on disabled people. Around a third have had to avoid specific places and change their usual routine. One in four has moved home as a result of the attack. Many disabled people are not confident that the police can help to stop the incidents" (GLAD 2002).

· Research by Mencap demonstrated that 90 per cent of people with a learning disability had experienced bullying and harassment. Sixty-six per cent of people with a learning disability have been bullied regularly with 32 per cent stating that bullying was taking place on a daily or weekly basis (Living in Fear, 2000).

Safety and security, and the right to live free from fear and harassment, are fundamental human rights and the CPS recognises the wider community impact of disability hate crime where it strikes at all disabled people by undermining their sense of safety and security in the community. For this reason we regard disability hate crime as particularly serious. Such crimes are based on ignorance, prejudice, discrimination and hate and they have no place in an open and democratic society.

Further information relating to disability hate crime is available on this website in the Publications/Prosecution Policy and Guidance/Disability Hate Crime section.

http://www.cps.gov.uk/your_cps/crime/hate_crime.html#a03

From the Guardian :

The government's focus on alleged fraud and overclaiming to justify cuts in disability benefits has caused an increase in resentment and abuse directed at disabled people, as they find themselves being labelled as scroungers, six of the country's biggest disability groups have warned.

Some of the charities say they are now regularly contacted by people who have been taunted on the street about supposedly faking their disability and are concerned the climate of suspicion could spill over into violence or other hate crimes.

While the charities speaking out – Scope, Mencap, Leonard Cheshire Disability, the National Autistic Society, Royal National Institute for the Blind (RNIB), and Disability Alliance – say inflammatory media coverage has played a role in this, they primarily blame ministers and civil servants for repeatedly highlighting the supposed mass abuse of the disability benefits system, much of which is unfounded.

At the same time, they say, the focus on "fairness for taxpayers" has fostered the notion that disabled people are a separate group who don't contribute.

http://www.guardian.co.uk/society/2012/feb/05/benefit-cuts-fuelling-abuse-disabled-people?newsfeed=true

From the Welsh Government :

Positive action to deal with hate crime in Wales has been outlined by the Welsh Government Minister in charge of equalities.

Jane Hutt has announced that a framework for action will be created to tackle all forms of hate crime including disability-related harassment, as well as harassment based on race, religion,sexual orientation and against transgender people. It will be underpinned by strong consultation and clear evidence.

The approach will be supported by realistic and deliverable plans which will be deeply rooted in the Welsh Government working closely with their partners.

Minister Jane Hutt said:

“Incidents of hate crime are shocking and unacceptable. I am committed to the Welsh Government taking a strong lead in this area.

“We all have a duty to protect those who are most vulnerable to harassment in society and to ensure that disabled people and those with long term health conditions are able to live a life without fear.

“I think that there is an excellent opportunity under the new Welsh specific equality duties to work closely with public sector organisations to tackle and respond to these particular issues.

“I want to ensure that we live in a society where hate crime is not tolerated, so that people in Wales feel free to live within safe and vibrant communities.”

A commitment to tackling hate crime is made in the Welsh Government’s Programme for Government, and these plans have been previewed in a response to the Communities, Equality and Local Government Committee’s inquiry into disability harassment in Wales.

Ms Hutt has also emphasised that she is committed to building on recent research into hate crime, and will commission work to examine the perpetrators of hate crime and their motives in the very near future.

http://www.egovmonitor.com/node/46296

From the Independent :

Disability hate crimes rose by more than a fifth last year, figures showed today.

Police recorded 1,569 incidents where the victim thought the alleged crime was motivated by their disability in England, Wales and Northern Ireland, compared with just 1,294 in 2009.

http://www.independent.co.uk/news/uk/crime/disability-hate-crimes-up-a-fifth-2351317.html

From the BBC :

Many disabled people are victims of hate crimes on a routine basis, according to a report.

It says some 100,000 disabled people in Wales were victims in 2009/10, and the four police forces all saw rises in reported disability hate crimes in 2010/11.

The findings come from the Equality and Human Rights commission which carried out a disability harassment inquiry.

The inquiry made four recommendations aimed at reducing harassment.

"People told us they routinely experience different forms of harassment such as name calling, physical violence, bullying and cyber-bullying, sexual harassment, domestic violence and financial exploitation," the report said.

'Inevitable'

"Some disabled people say they just accept it as inevitable and live with it. Others try to rearrange their lives to avoid abusive situations.

http://www.bbc.co.uk/news/uk-wales-14884754

Can anyone legitimately claim they do not “believe” in ME ?

2012-01-26T06:08:00.000-08:00

ME is assumed to affect about a quarter of a million people in the UK. Some are mildly affected, some moderately affected and about 25 per cent are believed to be so seriously affected that they are housebound or even bedbound.

Affecting more people than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis, ME can leave a person as functionally impaired as someone suffering from diabetes, heart failure and kidney disease, and as severely disabled as someone with heart failure, late-stage AIDS, Multiple Sclerosis , or a person undergoing chemotherapy.

Myalgic Encephalomyelitis (ME), has been classified by the World Health Organization (WHO) as a neurological disorder since 1969. Currently it is listed in the International Classification of Diseases (ICD), chapter 6, under Disorders of Brain at ICD-10 G 93.3. In the 1992 revision of the ICD, the WHO approved the term “Chronic Fatigue Syndrome” (CFS) as a term by which ME may be known. The term CFS is coded only to ME at ICD-10 G93.3, hence the composite term “ME/CFS” is often used to denote the disorder. A synonymous term also sanctioned by the WHO is “postviral fatigue syndrome”.

Some people mistakenly think they have ME when in fact they have something else. Many others may have a wrong diagnosis, or none at all. The Centers for Disease Control and Prevention (CDC) believes that of the estimated one million to four million Americans who have ME, less than 20% have actually been diagnosed.

ME was recognized as a specific disease entity by The Royal Society of Medicine in 1978 and was recognized as an organic disease by the UK Department of Health in November 1987.

On the 25th November 2008, the Northern Ireland Minister for Health, Social Services and Public Safety, admitted that ME is "a very real and debilitating neurological condition".

On 23rd February 2010, in an Adjournment debate on ME, Gillian Merron, Minister of State (Public Health), Department of Health, stated:"I want first to put on the record that we accept the World Health Organization's classification of ME as a neurological condition of unknown cause."

On 28th May 2010, Kay Ellis confirmed on behalf of the UK Chief Medical Officer: " The Department's view is that it is important to recognize that CFS/ME is a genuine and disabling neurological illness and health professionals must recognize it as such".

On 19th June 2008, Stephen Atkinson on behalf of the Department of Health confirmed:"I would like to assure you that the Department recognizes CFS/ME as a neurological disease".

On 11th October 2010, in a debate on ME in the House of Lords, the Countess of Mar asked the Parliamentary Under Secretary of State for Health, (Earl Howe) whether the coalition accepts that CFS/ME is a neurological condition and he replied that the " Government accepts that it is a neurological condition".

On Feb 2nd 2011 Paul Burstow, Minister of State, Department of Health, in response to Ian Swales MP, confirmed that there is :"strong international consensus that CFS/ME is a chronic and disabling neurological illness. I want to stress that it is a neurological illness; it is not a mental health problem " .

On Nov 21 2011, the Minister for Welfare Reform, Lord Freud, stated that “ the term chronic fatigue syndrome (CFS) is used to describe an illness that is characterised by physical and mental fatigue and fatigability”; however, this is referring to the symptoms associated with the condition and is not a reference to its aetiology or classification.”

Even so, doctors and other professionals, even after all this time, still seem free to be able to choose whether or not they “believe “ in ME, whether or they treat ME as the neurological disease it is , or as a mental health disorder. As the Countess of Mar outlined on 11th October 2011 : “In desperation, frustration, or perhaps, egged on by periodic dramatic pronouncements from a small group of psychiatrists and eagerly taken up by the media supporting allegations of the spurious nature of this illness, medical practitioners and social workers too frequently resort to incarcerating adults in psychiatric hospitals under Section 3 of the Mental Health Act or, in the case of children, imposing child protection proceedings under the Children Act after accusing their parents of fabricated illness ideation."

In what other illness would this abuse be tolerated ?

www.stonebird.co.uk
The Lived Experience of Severe ME

Voices From the Shadows - DVD now out !

2012-01-24T11:27:00.000-08:00

Voices from the shadows:

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.

Everyone in the film has made themselves vulnerable for the truth of ME ; they want the truth to be known.

ME is not fatigue, ME is not a mental health disorder; Voices from the Shadows shows this powerfully and honestly.

This film was made to challenge the psychiatric misrepresentation, it needs to be shown to people who do not understand or who are not aware of what it is like to have Very Severe ME.

It is devastating to be so physically ill and yet to be treated so poorly, so badly ,so ignorantly, so dismissively by the medical profession , who predominantly follow an inappropriate psychosocial model of care .

Voices from the Shadows needs to be shown to friends, family, doctors, social workers, politicians , advocates, people in power: to anyone who does not understand the grim physical reality of living with Severe ME.

There must be a paradigm shift in society and the medical world. There needs to be a universal biomedical response.

ME and psychiatry must go their separate ways. Let us make this film pivotal in making that change happen,

If you can buy a copy then do. The more people who see this film the better.

If you want to show the film publicly, you can buy a special screening rights copy.

The only way this film is going to be seen is if we all make it happen.

All of us have to do something to make the dreadful situation we are in change for the better.

The best way to counteract misinformation and misinterpretation is with the truth :Voices from the Shadows needs to be seen , so that the truth of ME can be made visible in all its devastation.

Let us make this happen.

We would like to say a special thanks to Natalie Boulton and Joss Biggs who have sacrificed so much to make Voices From the Shadows a reality. Without their commitment this film would not exist.

Let us all make sure that this film is worth the supreme effort that went into its creation.

Let this film be our voice.

(Order here : http://voicesfromtheshadowsfilm.co.uk/shop-dvds/)

(Please post widely)

Every Place Possible

2012-01-23T11:32:00.000-08:00

Stomach swollen
Body burning
Breathing ragged
Throat increasingly numb
Irritatingly weak
Hands too disabled to use
All coordination a struggle
Pain pinioning me to the chair
No position comfortable.
Tormented with sensations.
Hurting in every place possible.
Paralysis looming in every moment
Head peculiarly dizzy
Noise hurting unimaginably
Every sound an aggravation
Light piercing throbbing swollen eyeballs
Perfume making me putrifyingly nauseous
Everything dysfunctional.
This is my whole life.
Why?

Trust is all we have left

2012-01-21T10:21:00.000-08:00

"Hold me, I am burning with pain."

I hold her, I cannot feel her, she is so lost in the agony; completely, down to every single millimetre, in her deepest depths , ill.

We hold each other, alone. Three things I have learned :

1.To the extent that you are not prepared to compromise, to that extent you suffer acute isolation and rejection.

2.You cannot afford to trust anyone who says they know what they are doing.

3.No one knows what they are doing, when it comes to Severe ME.

At best you hope that they will be humble enough to admit it, that they enter into it with you and help you work something out possibly, in diminutive steps.

One thing I know : There is no hope currently for people with Severe ME.

This I will never do though:

Give up.

My anger is too deep , my faith too ragged , too battle-hardened , my love much too strong for that; like a banner , the Breakthrough Prayer is unfurled tonight and every Saturday night , sweeping ME into the sea : http://www.stonebird.co.uk/breakthroughprayer.html

Things are very bad, trust is all we have left now.

Severe ME in the Guardian

2012-01-17T05:41:00.001-08:00

Stonebird is delighted to announce that a film featuring Severe ME has been published in today's Guardian :

http://www.guardian.co.uk/society/2012/jan/17/dla-video-stories-disability-benefits

No to PIP !!

2012-01-16T09:57:00.000-08:00

"Take nothing on its looks; take everything on evidence. There's no better rule."

- Charles Dickens, Great Expectations

My wife is a severely ill and disabled person who relies upon DLA. Given the momentous vote in the House Of Lords tomorrow she is very concerned about the article by Paul Goodman in the Guardian today :

http://www.guardian.co.uk/commentisfree/2012/jan/15/duck-reform-disabled-benefits-disability?INTCMP=SRCH

...implying that PIP will be beneficial to people. This is simply not the case.

Guardian readers have been given the impression that PIP is a great and right change. In fact it will be a major devastating blow to disability rights if it goes ahead.

The idea that people need a team of people getting them back to work and off dependency on DLA is a misrepresentation of genuine need. People who are disabled will always need extra provision because that is the nature of disability. People need assistance in a variety of ways. This costs extra money; this is what DLA is for, care and mobility.

To hound people regularly , who need assistance, pretending that with enough input they will stop needing additional funds is a misrepresentation of the truth. For very ill and severely disabled people the continual harassment to prove their need works against them.

The distress is often beyond the capability of the very ill to comply with . The people who "assist" , let us be clear. are there because the Government buys into the American right's philosophy that the poor are to blame for not making the most of the "opportunities' offered to them.

It is not sufficiently recognized that the move to destroy DLA , is based upon denying the physical needs of chronic sickness and disability ; the focus of PIP is upon "ability" - which is something else altogether , one that does not take into account the context of disability and chronic ill health. It by-passes need .

Disabled people need protecting from misrepresentation and misinterpretation of truth.

If PIP goes through then thousands of people are bound to lose their vital financial support; there are fewer categories in PIP. Lives of disabled people will be devastated, some have hinted they will kill themselves. How can this be beneficial? How can the House of Lords or society approve of this?

The vulnerable, ill and disabled do not need to be constantly harassed,do not need to have their disability denied, do not need to be bumped off benefits :

If PIP goes through tomorrow :

Disability benefit claimants are set to lose £9 billion in benefits over the course of the next parliament.
A wider range of aids and adaptations will be taken into account in the assessment process, meaning that people who can get about in wheelchairs may be ineligible.
There will no longer be automatic entitlements for people with specific health conditions.
All claimants will be assessed by a healthcare professional approved by the Department for Work and Pensions
The number of claimants will be reduced by 20% - that is 380,000 disabled people.
Recipients will be required to discuss their circumstances with a professional who offers advice and "helps them access specialist support".

The Personal Independence Payment (PIP) is a case of cuts dressed as positive reform. Disability rights groups and charities have uniformly condemned the proposals, warning of dire consequences. Disabled people will suffer through needless reassessments upon the introduction of PIP, and re-testing every few years even when a condition cannot be treated.

While there may be ways to improve DLA, they do not involve replacing it with a new benefit, and neither do they involve removing anyone from the claimant caseload :

As one senior Government source put it to me: “It is quite

possible that there will be cases of suicide.”

The Daily Telegraph http://www.telegraph.co.uk/comment/columnists/matthewd_ancona/8196564/The-Coalitions-shock-therapy-demands-exemplary-bedside-manners.html

What, then, can you do ?

2012-01-14T10:37:00.000-08:00

I am weeping here in this place , for it is a place of negation and neglect, a place of horror and denial. I am so profoundly ill that I am hidden away from everyone, because people simply make me even more ill. Interacting in an ordinary way is beyond my physical capability. I am literally damaged by being with people because of a whole raft of physical dysfunctions which are currently overlooked or denied predominantly by the medical profession. There are few who know or will speak the Truth of this devastating neurological disease mistreated as a fatigue syndrome.

My body is so weak my muscles will not hold me up. They collapse. They scream at me. They torment me with pain stabbing crawling expanding and contracting shaking and paralysing me, being upright is a major feat in itself , staying upright is beyond me. Lying down is worse. There is no physical peace here or rest for my tortured body.

I weep at the terrible injustices done to people like me, who are so fundamentally physically ill but misrepresented , misinterpreted, denied fundamental equal rights to medical respect and adequate appropriate health treatment. We are left alone with out the help we need to understand what is going on in our bodies, without the support we need, without the suitable aids and equipment, without the truth of our disease being adequately represented.

It is literally dangerous to have this illness , because so few, if any, people you will see in the health service or social services understand it . They can choose to interpret it in any way they want to , from a mental health condition to a fatigue syndrome to the true neurological disease that it us. Its name is misused. People who do not have ME are labelled as having it. People who have ME are wrongly labelled as having CFS or CF. There is a whole confusion deliberately manipulated by intentional psychiatric interference and influence into a genuine physical disease in which they should have no part.

When you discover the truth of what charades as ME diagnosis and treatment in the UK , you would weep too. It reads like a conspiracy theory because it actually is one, manipulated by vested interests and ideologies, not based on patients reality or the physical evidence available .

What then can you do?

Most people compromise away the truth. To me this is unacceptable. I cannot compromise away the truth of my tormented reality. I have to speak up and fight my corner. We have to speak up together and fight our corner. Anyone can uncover the truth if they look for it. It will be revealed if you open your eyes. It will be heard if you open your ears . It will be spoken if you open up your mouth.

This then is what I hope for. That we will all rise up with the Truth, not accept the current negation and the compromises that in effect destroys us and wastes lives. Hope burns deep in me for there is little choice left. Hope or despair. Life or death. I chose life. I chose hope. I chose Truth. Who will join me?

Tombstone Land

2012-01-13T01:58:00.000-08:00

My head now wanders through the usual sea of fog once more
I had no sleep last night.
There is no easy place to be , right here , in my mind.
It is either way too busy
Overstimulation piling up in log jams in my head
Or blank and eerily
Where life should be visible
Yet has sadly wandered off.
Tiredness
Now creeping over a grey tombstone land
Where buried thought lies hidden
Tugs at my flapping eyelids.
Slows my breathing
Leads my muscles down the well worn track to paralysis city
Where all is imagined
And nothing is possible.
Later perhaps in depth of night I will go to the crazy cinema
I regularly have first row seats
reserved for only the worst nightmares
Amazing how the mind twists and turns every single experience
Each throb and burn, each nerve and muscle scream
All are locked in by paralysis to a cleverly woven plot
In which I, always the victim of evil creatures
Or being burned and maimed
Or drowned endlessly screaming
Mirror the dreadful nightmare that my body returns to
Night after night
As each cell loses its control and dissolves finally into jelly like immobility
And stiffening pain filled joints crush my images
Into darker and more twisted stories
Trying to raise attention and
Alert my struggling brain to the tormented state my body has entered into
Seemingly in its own complicity with fear and despair.
Sleep then is not refreshing,
Not ordinary
Not regular
Not comforting
Not relaxing
Not even comfortable.
And certainly not controllable even,
As I cannot take control of anything it seems.
There is no haven
From this torment.

Meanwhile
The fog
Like iced water
Has penetrated everywhere
Then frozen me from the inside.
I cannot think here.
There are no thoughts to build upon
No view in site
Caught in a whirl of paralysing fog.
Surely I can describe this horror
Almost invisible from the outside.
I feel as if I am being sucked into deeper and darker pockets
of nothingness
It eddies about me
Causing nausea and giddiness.
I feel off balance
My left side has floated away
Numb emptiness replacing its solidity.
I cannot hold a conversation
Everything is tormenting me.
I cannot even see clearly
The fog is that thick
Grey wisps stream before my pain filled eyes
I cannot make sense of the world before me
Someone is shouting
Ranting and raving
Swearing uncontrollably loudly
About what?
Nothing of significance.
I listen horrified.
That someone
sadly
Is me.

Huge ESA victory – now you have till Tuesday to save DLA

2012-01-12T12:54:00.000-08:00

(From Benefits & Work)

Stop Press: Spartacus Report lead author Sue Marsh will be on Newsnight tonight (Thursday) head-to-head with employment minister Chris Grayling. Good luck Sue.

It’s not often we get to celebrate here at Benefits and Work. So there has been enormous delight at the government suffering three – or possibly two - unexpected defeats in succession in the House of Lords over welfare reform

But if you want real joy, then please take part in the fight to save DLA. It really is possible - but only if you act before Tuesday’s vote. Please help to nail the latest government lie that you’re actually in favour of axing DLA.

Also in this newsletter, the shameful revelation that DWP decision makers can now have your appeal struck out before providing any evidence at all. They just need to tell the tribunal clerk that you said on the telephone that you no longer wished to continue and that’s it.

YOU CAN SAVE DLA BY TUESDAY
Last night, in victories that shocked even the most optimistic campaigners, the government was defeated in the Lords on three votes in succession. (Open access)

The welfare reform bill was amended so that ESA in youth will not be axed, many cancer patients will continue to be exempt from the work capability assessment and contribution-based ESA for claimants in the work-related activity group will be paid for two years instead of just one.

Of course this isn’t the end of the matter and the government will now try to overturn their defeats. But they are looking in real trouble and compromises will have to be made.

Although, by what many people will regard as an underhand trick after most peers had gone home last night, Lord Freud succeeded in sabotaging the reinstatement of ESA in youth(external link), by limiting it to current claimants only.

Outrage amongst Labour and crossbench peers at the ‘unprecedented’ contempt for the will of the house scared him off using the same trick on the other two amendments, however. His shabby trick also looks likely to have now made crossbench peers really, really cross with him. Something he may regret next week.

The vote this coming Tuesday will be on axing DLA and replacing it with personal independence payment (PIP).

We’ve already told you about the excellent Spartacus Report (open access) which was launched on Monday and which offers convincing evidence – the government have yet to deny it – that they misled parliament over the huge level of opposition from disability organisations to their plans for DLA.

The report has caused an enormous stir on the internet (open access), generating literally millions of tweets and thousands of downloads from its first day and is now breaking through into other media, although some of its authors have paid a high toll in terms of their health.

It has gained high profile support from writers, politicians and celebrities and is unquestionably playing a part in changing the views of peers. It even, astonishingly, receivedstrong endorsement from the Daily Mail online, (external site) not once but twice (external site).

However the government now seem to be claiming that although disability organisations aren’t in favour of PIP, the majority of individuals who responded to the consultation were (open access).

Benefits and Work readers have already responded magnificently to our request on Monday to help launch the Spartacus Report. We’re now asking for your help to nip this latest government lie in the bud.

THREE THINGS YOU CAN DO TO CHANGE THE FUTURE RIGHT NOW
We’re asking Benefits and Work readers to do three things.

1 Sign Pat’s petition.
Pat’s petition asks for the same thing that the Spartacus Report wants – a pause and a proper consultation before further ‘welfare reform’ takes place. A huge surge in signatures before next week’s debate is the simplest way to expose the monstrous lie that disabled people support these reforms.

We know some people fear it might be risky to give a name and address on a government website, as you have to in order to sign this epetition. But more than 14,000 people have already taken that ‘risk’. And if ever there was a day for taking a chance to save your benefits, surely this is it.

You can add your name to the petition here and nail the government lie (external site).

2 Email a crossbench peer
The crossbench peers are the ones who have inflicted such damage on the welfare reform bill. You may want to tell them that if they voted to protect ESA claimants you are very grateful. But add that, whatever they voted before, you would be grateful if they would vote to delay the PIP legislation, because your views have not been properly listened to.

Ask them to read the Spartacus Report if they haven’t already. They can download a copy from this link (external site) – though they’ve already been posted a hard copy.

If you responded to the original DLA consultation in December 2010 tell them that too.

And if you have read about PIP and can explain concrete ways in which you personally would be disadvantaged, please explain that too.

There’s a list of crossbench peers here with links to their email addresses (external site).

Given that a large number of Lib Dem peers chose to abstain rather than support the coalition, and five actually rebelled, you might want to email a few of them too.

3 Get others to join the fight
Use email, twitter, facebook, your telephone and maybe even speak to people face-to-face and encourage them to make their views known before Tuesday’s debate in the lords on getting rid of DLA.

It isn’t a waste of time. As last night’s votes showed, no matter how hard the government and the media try to silence and vilify disabled people, dedicated campaigning can make an astonishing difference.

You can keep updated on the campaign at Diary of a Benefit Scrounger (external site)

and follow events on Twitter using the hashtag #spartacusreport

MORE DIRTY TRICKS
It’s not just peers who stand accused of dirty tricks in relation to benefits. The DWP and tribunals service have been cooking up one between them, it seems.

Your ESA and DLA appeals can now be withdrawn simply by a decision maker telling a tribunal clerk, without providing any evidence whatsoever, that you told them on the telephone you no longer wish to carry on. It will then be your responsibility to try to get your appeal reinstated within a tight time-limit. The shock change to the principle that appeals can only be withdrawn by the claimant themselves, and only in writing, was introduced last month in a bid to reduce the growing backlog of appeals.

The new rules apply provided that the decision maker has not yet prepared the bundle of papers and sent them to the tribunals service. You can read more about the changes here. (Members only. How to subscribe)

Our guides to ESA and to DLA appeals have now been updated to forewarn members and suggest strategies to ensure you are less likely to be affected.

If you’re making a claim for DLA or ESA or appealing a decision, don’t leave it to luck –subscribe to Benefits and Work and make sure you’re prepared for every trap set along the way.

Do not make a massive mistake

2012-01-11T01:05:00.000-08:00

Make no mistake. If anyone argues that we maintain the "ME / CFS" label label :

They are allowing ME to be watered down by a sea of fatigue conditions.
They are allowing ME to be invisible in health care.
They are allowing ME to be completely taken over by psychosocial methods and practitioners who will not see or know or understand the truth of their physical disease .
They are allowing ME not to be seen .
They are allowing ME to be denied,
They are allowing ME not to be understood.
They are allowing people with ME to be made more ill.
They are allowing people with ME to be misrepresented.
They are allowing people with ME not to get an adequate or right service.

They will not get the treatments they need.

Far better to fight as hard as we can , for the new ICC guidelines to be universally adopted and patients reassessed to separate out those with fatigue conditions and those with ME; then all will get a better service.

ME has a viral trigger. CFS is a syndrome ; a syndrome is only a bunch of symptoms thrown together. CFS is hopelessly undefined and vague; adding "CFS" to ME is profoundly self-defeating.

CFS is absolutely not the same as ME.

People with ME are harmed by fatigue interventions that deny the uniqueness of ME.

People with ME have neurological symptoms. People with CFS do not. To add them together under the sane label is extraordinarily dangerous for the ME patient.

CFS and ME need clarifying as different. People with ME need to be seen as a distinct group of patients with a specific illness not a vague condition .

Fatigue must not be the primary consideration . Post exertional fatigue and neurological symptoms must be the focus.

People with other fatigue conditions deserve a service, but they do not deserve the funding for research and services that belongs to ME. They must be separated so that ME patients will stop being neglected, offered wrong treatment or neglected , negated and left to fend for themselves, as is the current case here in the UK.

Thirty years of oppression and psychiatric domination constitute the status quo; do not make the mistake of arguing that it continues.

Mayor Boris Johnson victim of DLA con trick

2012-01-09T02:29:00.001-08:00

Mayor Boris Johnson victim of DLA con trick

(from Benefits and Work)

London Mayor Boris Johnson is just one of thousands of individuals and organisations whose overwhelming opposition to axing disability living allowance has been grossly misrepresented by the government in an effort to force through the highly controversial change.

This is the claim made by an ad hoc group of disabled campaigners in a highly detailed report ‘Responsible reform’ released today. If true it could lead to legal challenges to the welfare reform bill and to questions as to whether conservative ministers deliberately misled parliament. The authors of the report are calling for a pause of at least six months before legislation introducing PIP is voted on, in order to allow the views of disabled people to be properly taken into account. They are also calling for help from Benefits and Work readers.

In December 2010 the government began a consultation on reforming DLA by replacing it with PIP. Over 5,000 individuals and more than 500 organisations took part in the consultation.

In April 2011 Iain Duncan Smith, secretary of state for work and pensions, published ‘Government’s response to the consultation on Disability Living Allowance reform’ with an introduction written by Maria Miller, minister for disabled people. The document claimed to outline the responses to the consultation and the coalition’s reaction to them.

However, disabled campaigners who obtained copies of all the organisational responses using the Freedom of Information Act claim that the government document deliberately covered up the overwhelming opposition to most elements of the proposed reforms.

For example, the ‘Responsible reform’ claims that:

“98 per cent of respondents objected to the qualifying period for benefits being raised from 3 months to 6 months.”

However, the government document merely states that:

“Some organisations were in favour of our proposal to extend the Qualifying Period from three months to six months, before benefit would be paid . . . However, many organisations and some individuals were not in favour of this”

If it is true that there were 2% of organisations in favour versus 98% against then the use of the terms ‘some’ versus ‘many’ appears to be a very deliberate attempt to hide the virtually unanimous animosity to this proposal. A fairer picture would have been given by phrases such as ‘very few’ organisations were in favour whilst ‘an absolutely overwhelming majority’ were against.

Boris Johnson was very definitely against this proposal, arguing that:

“The Mayor would call for the Government to retain the three-month qualifying period as the increase to six months will mean that people with fluctuating conditions have increased difficulty meeting the qualifying period. People with fluctuating conditions face the same barriers that all disabled face in relation to higher costs of living and DLA is essential to maintain a decent quality of life.”

In relation to reducing the rates of care from three to two, ‘Responsible reform’ claims that 92% of organisations opposed the idea. However, the government document claims that:

‘The majority of organisations welcomed the move to new, broader definitions of the daily living and mobility components . . . Some organisations commented that, by raising the threshold at which an individual would qualify for benefit, those with some, but not significant, support needs would be disproportionately affected . . .’

Again, Boris Johnson was unequivocally against the idea, pointing out that:

“The Mayor does not support this change, as those on the lower rate care component may have additional costs as a result of their impairment but may lose their access to this benefit as part of the proposed removal under the reforms.”

Disabled campaigners claim that, again and again, throughout their consultation response, the government misrepresents the strength of opposition to their plans and seeks to mislead MPs and peers.

They also claim that the report uses misleading statistics to make it appear as if the number of people receiving DLA is rising uncontrollably.

Benefits and Work is sending out this single issue newsletter to coincide with the release of the report because its authors have made a special plea to our readers:

“Time is running out to save DLA. We urgently need Benefits and Work readers to contact their MP and ask them to read this report. Ask them to give you a response, reminding them that they have a duty to you as a constituent to respond.

“When you do get a response, the team that created the report would very much like to read it. You can post your response at: spartacusreport@gmail.com

“Many thanks, and we sincerely hope that the report demonstrates not only the devastation that reducing and altering DLA would bring to many people, but that the reasons given for implementing PIP are unsound.”

LINKS
You can read this article online and comment on it here.

You can download a copy of the ‘Responsible reform’ report from this link OR download the report from the Benefits and Work website.

The report is available in a number of formats, including an easy read format, please use the contact email: spartacusreport@gmail.com if you would like to know more about alternative formats.'

You can read a copy of the full press release sent out by the campaigners here.
You can get updates on the campaign from the Diary of a Benefits Scrounger.
You can read Boris Johnson’s submission to the DLA reform consultation here.

A copy of the ‘Government’s response to the consultation on Disability Living Allowance reform’ can be downloaded from this link.
Campaigners are using the hashtag #spartacusreport and asking supporters to tweet “I support the #spartacusreport”

Tymes Trust - excellent work

2012-01-07T05:58:00.000-08:00

Please see http://bit.ly/tt-wrong

Please see : bit.ly/tt-phys

Pushed to extremes

2012-01-06T10:42:00.000-08:00

Pushed to extremes

Greg & Linda Crowhurst 6^th January 2011

(Permission to repost)

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."

Any genuine ME sufferer - or carer - would surely be called an "extremist" nowadays; the disease has been so drowned in a sea of fatigue misrepresentation that they have to speak up loudly to get anywhere :

It is EXTREMELY exhausting and demanding wading through all the false information and generalised non- information that is presented as fact about ME.
I have to work EXTREMELY hard to raise awareness and attention to the truth.
I have to keep fighting EXTREMELY hard to get the right biomedical service for my wife .
I have to see the truth of my wife's EXTREMELY severe Myalgic encephalomyelitis and keep representing that truth till people hear and see the EXTREME abuse that has been happening to patients and people with severe ME for decades now and the EXTREME negation that has happened at the hands of the psychiatric lobby , of the true physical reality of Severe ME, misrepresented as if it is as a fatigue syndrome ; which is utterly inaccurate.

That makes me an ME extremist then - and proud of it.

People with ME :

have to endure condescension and dismissal by neurologists , doctors, nurses , social workers, not interested in their neurological symptoms.
have to endure inappropriate therapeutic techniques being offered ,for their serious physical disease, as "treatments".
have to endure the promotion of a biopsychosocial approach to their disease, when it is not a mental health illness.
have to endure a complete lack of biomedical ME clinics and a dearth of biomedical ME clinicians .
have to endure no government backing for accurately identified, clearly and adequately defined ,physically focussed, ME research.
have to endure lobbyists and psychiatrists who have vested interests in insurance companies, being allowed to be advisors to the DWP regarding guidance in their illness.
have to endure psychiatrists being allowed to inaccurately define their disease with too few symptoms and promote a vague symptom of fatigue that is not the primary dysfunction in ME.
have to endure the psychiatric lobby getting away with changing the name of their disease from" ME" to "CFS" ,to deliberately ensure a wrong focus.
have to endure inappropriate therapeutic techniques being promoted by governments, when they are not wanted by people with ME as they make them more ill and disabled .
have to endure the vast array of unending ME symptoms and the fact that there are no drugs or appropriate biomedical treatments to alleviate them , because the Government has wasted millions of pounds upon pointless psychiatric research .
have to endure the isolation caused by people , both medical, official and in society , including friends and families , who do not understand that ME is a serious and severely disabling physical illness .
have to endure living in fear that they will not be awarded or keep their benefits .
have to endure knowing that they need a proper diagnosis and medical assessment but if their GP or clinician or benefit agency doctor is psychiatrically oriented , they are simply not likely to get the right help and acknowledgment that they need .

People with ME have been pushed to the extreme edge by neglect, isolation, deliberate ignorance and misrepresentation. When you are pushed to that extreme you have to react by speaking out.

I am an ME extremist, then, in the true sense that I demand ME to be treated as the unique disease it is and I speak out for people with this devastating World Health Organisation neurological disease that damages lives and is still almost totally neglected by medicine .

An ME extremist , then, is someone who wants to have the boundaries of the neurological disease respected, who wants a biomedical service for this biomedical illness and does not want it represented as something it is not , anymore. You have to be extreme, you have to work extremely hard , to uncover the truth and get justice.

It is extremely difficult to find a biomedical practitioner.

It is extremely difficult to find someone who does not use the term "fatigue".

It has to stop.

My wife is sick of having a disease that is dangerous to have , because no one understands it and everyone buys into the manipulated lies , churned out relentlessly by the psychosocial lobby that this is a mental health fatigue disorder. It is not .People who have a mental health fatigue disorder need to be separated from genuine neurologically ill ME patients so that everyone can get the service they need. Their needs are different.Why can't the medical profession recognise this , so that we can all safely move on?

So for 2012 let your motto be : No more neglect. No more compromise. No more CFS for ME.

· Say No to psychiatric abuse and misinterpretation

· Say No to ME and CFS being equated as the same thing

· Say No to the Oxford Definition and Fukuda definition being used to identify fatigue patients as having ME . They are not suitable to identify ME.

· Say No to the mislabeling of ME as Opathy, CF, CFS/ME or even ME/CFS.

· Say No to the psychosocial pathway for ME

· Say No to generalised fatigue being described as the primary symptom for ME

· Say No to misrepresentation

· Say No to misinterpretation

· Say No to the wrong education of practitioners

· Say No to ignorance

· Say No to psychiatric domination of a biomedical, neurological, physical disease.

· Say No to the denial of the symptoms that people with ME have.

· Say No to not listening to your client

· Say No to preset agendas of what to do.

· Say No to psychosocial misdirection

· Say No to the twisting of the truth about ME

· Say No to media bias

· Say No to the psychiatric myth

· Say No to the popular cultural myths about ME

· Say No to compromised ME organisations

· Say No to compromised media

· Say No to the power of vested interests to manipulate.

· Say No to the NICE Guideline

· Say No to the NHS Chronic fatigue syndrome and myalgic encephalopathy (CFS/ME) management care pathway

· Say No to the pretense of working for and with people with ME whilst actually offering a fatigue service.

· Say No the burying of truth

· Say No to being off the radar

· Say No to hypocrisy

· Say No to not looking for what is physically wrong with people

· Say No to denial

· Say No to compromising the truth of ME to get funding, power, or for personal ego or political manipulation.

· Say No to complicity

· Say No to not speaking up

· Say No to mistreatment of ME

· Say No to biomedical neglect

· Say No to the lie that are you are going to get better with no proper physical biomedical treatment or input.

· Say No to the blurring of boundaries between ME and other illnesses.

· Say No to the bias in medical journals toward fatigue.

· Say No to the psychiatric bias in the nursing profession.

· Say No to the biased peer review systems.

· Say No to the biased Influence of psychiatry in government organisations such as the MRC.

· Say No to the continual twisting of the truth by allowing the wrong people to represent the illness.

· Say No to the inaccuracy with which ME is portrayed.

· Say No to the endangerment of health that is happening

· Say No to people getting away with saying they believe ME is psychiatric.

· Say No to the misuse of the word ME for people who do not have it.

Demand that :

ME be removed from a sea of fatigue conditions and psychiatric mental health issues

Proper diagnosis and treatment is provided for everyone in the correct category

ME be given the respect of the unique neurological disease it is.

Practitioners stop treating ME the same as any Fatigue illness, it is not a fatigue illness, it is a serious, potentially life-threatening neurological disease.

The misdiagnosis, mistreatment, generalisations, the fundamental denial of the unique difference that ME is a neurological multi system disease, stops.

Fatigue practitioners are not given any money for ME research.

ME is only researched using the correct ICC criteria.

ME clinics for ME patients only. Fatigue clinics for fatigue patients only.

Fight for justice. Speak the Truth.

If I could just hold her without pain

2012-01-04T02:47:00.000-08:00

The Bullshit

2012-01-02T22:50:00.000-08:00

Back screaming agony
Muscles expanding and contracting
Rippling in my diaphragm
Causing irritation and distress
Throbbing angry stressed pain that consumes
And batters continually
Increasing while I sleep
Torturing me with its persistence
Will not go away
Will not calm down
Will not rest
Will not find a tolerable level
Digs at me
Kicks me
Screams in my middle
Stopping me from easy movement
Stopping me from sitting up
Stopping me from functioning
Where did it come from?
When will it leave?
Why does it hurt me so continually?
So very tired of all the bullshit
And denial of my very real
Physical illness
And complete physical dysfunction.

Let go of the CFS label in 2012

2012-01-01T02:02:00.000-08:00

The tide's on the turn ; as I stagger battered , as never before, but not done fighting, into 2012, I can think of no greater achievement this year than to let-go of the "CFS" label that has does so much harm to people with ME.

Does she want to be well ?

2011-12-27T08:10:00.000-08:00

Someone asked
Do I want to be well
After so many many years
Of being ill ?
Why
But tell me this,
do you think
This is the right question
To ask?
It shows nothing of understanding
Or empathy
With my reality.
Is it not then perhaps
cruel
To ask this of me
When there is no path
There is no possibility
Of achieving this aim ?
Similarly
I might as well ask
Do you want to go Centre of the Earth?
You would of course say
It is not possible.
You would say
What a bizarre question to ask me.
I cannot do this thing you ask of me.
There is no pathway to follow.
There is no vehicle within which to travel.
I would come to physical harm in trying.
Perhaps you might want to go there as an idea,
But in reality
It is out of the question.
Perhaps you would like nothing more than to go there.
But is it possible?
Absolutely not.
So why ask the same of me?
Is it possible to be well?
Is there a path?
Do I want one?
Is there a vehicle to get there?
Of course not.
Do I want to come to harm in trying?
Certainly not,
Nor should I have that expectation placed upon me.
Yet here there is a catch 22 for me.
If I say no
You will say
I have given up.
I will somehow be blamed.
If I say yes
You will say
Then you must try harder.
If only it were that simple.
Perhaps instead you can stop suspending all realism
When it comes to my life and my illness.
Perhaps for once you can see
That it does not matter
What I do
What I want
How I try to comply with your will
I still will not be well
Because I am genuinely physically ill
With an incurable neurological disease
And simply wanting, hoping, desiring, demanding to be well
Sadly
Unamazingly
Will not make it so.

Boxing Day

2011-12-26T23:01:00.000-08:00

Boxing Day was the tail end of an obscure Christmas, the fag end of a year of abuse.

My wife in too much agony to be touched, even slightly, without violently flinching, unable to feel her body below her waist, slumped, paralysed , in the sudden red glow of fireworks from next door, a party to which we were not invited.

Boxing Day was the pain in my guts, the longing to go running on a beach with her, knowing she is more ill than I have ever known. Christmas Day was the ME kicking her hard in her back and head.

There is no let up to the disease's merciless attack, its progressive worsening, its savage ravaging of my wife.

Boxing Day was me feeling very small indeed, an impotent spectator at the ME feast. So angry.

Long Boxing Day of pain.

A Christmas wish

2011-12-21T00:58:00.000-08:00

ME Spring

2011-12-17T09:56:00.000-08:00

The cold eats into me
Chilling my bones
And sending nerve pain screaming
round my battered body
Winter is here
Yet spring will come
Sun will shine again
Things will change
New growth will come
But not I fear in ME world
The injustice rages through my body
Cuts deeper than the icy chill of winter
Rattles round my bones
Demanding attention
Pierces even the depth of my empty brain fogged mind
Shouting out its wrongness
Demanding attention
Gnawing at the centre of my being.
How can we continue to bear such wrong in the world ?
Wrongness that destroys truth
That evades healing
That persecutes the vulnerable
That punishes the most ill.
Surely we cannot be frozen out of society for ever
By misrepresentation
Misinterpretation
Neglect
And banishment ?
Where is Justice ?
Where is Truth?
Where is honesty?
Where is integrity?
The weight of the lie must surely break
the bough of untruth eventually?
How long do we have to stay in the psychiatric winter of misdiagnosis ?
How long will be frozen out of proper health care and treatment?
How long must we suffer this injustice?
When will the ME Spring finally come?
Not soon enough I fear.

Moments

2011-12-14T06:02:00.000-08:00

The moments tick by

So slowly

Yet time is still running out

Days slowly drip by

And in the centre

I sit

Or lie

Unable to function

Unable to express

The many gifts and talents

That God has given me

They are eroded away

By deadly silence

And complete functional inability

Till I become

Someone who once was

Someone who once did

Someone who once lived

Someone I no longer recognise

For I am tossed this way and that

By every passing noise

And discarded on a heap of empty moments

That should have been

Multi-coloured and full of sound

And beauty.

13.12.11

A letter to Lord Simon Wolfson, Chief Executive of NEXT

2011-12-12T09:57:00.000-08:00

Stonebird is immensely proud to publish this excellent letter by Joss to Lord Wolfson, after his recent appearance on BBC's Question Time.

Where's The Benefit describe what happened on the programme : (http://wheresthebenefit.blogspot.com/2011/12/crimestoppers.html)

"This week on Question Time judge Constance Briscoe claimed there were vast swathes of fakers out there, but when asked how many she, unsurprisingly, didn't know.Next boss Lord Wolfson then claimed that JSA (Job Seekers Allowance) wasn't the benefit with the fraud problem, but disability benefits.....No-one corrected him."

Here , then, is Joss's letter to Lord Wolfson :

Dear Lord Simon Wolfson,

On Question Time (8^th December 2011) you said that "the system that is played more than any other, incidentally, is the disability benefits". This is untrue.

In July of this year the government published Fraud and Error in the Benefits System: Preliminary 2010/2011 Estimates: http://research.dwp.gov.uk/asd/asd2/fem/fem_oct09_sep10.pdf

This document shows that the amount of disability benefit reportedly lost due to fraud remains low, indicating the majority of claimants are genuine.

It states that Incapacity Benefit, by percentage, is one of the least overpaid benefits and that more is lost on Incapacity Benefit due to official error than to fraud.

The figure for those fraudulently claiming Incapacity benefit is 0.3%. The figure for official error is 1.2%.

The Document states that £130m was lost to ‘Fraud and Error’ in the relevant period and that £70 Million of that was due to ‘Official Error’.

I would also point out that they have managed to add the three figures for ‘Fraud’ £20m, ‘Customer Error’ £50m and ‘Official Error’ £70m and arrive at a total figure of £130m which is clearly £10 million pounds out – who knows which way it is askew! Perhaps if I ever get well enough to return to work I could be employed checking government documents for basic errors – I would jump at the chance.

It goes on to say that the rate of Disability Living Allowance Fraud is 0.5% and that for Official Error is 0.8% - again more error than fraudulent claiming and again a low figure for fraud compared with other benefits.

I have, unfortunately, been on Incapacity Benefit for 14 years due to an illness that prevents me from being able to sustain any kind of activity in a way that makes work possible and I am constantly dismayed by the way that sick and disabled people are reported on in the media.

It is all very well politicians and journalists remembering to, once in a while, mention that most are genuine claimants – those who David Cameron claimed he would make sure would be looked after and who, are now, having to appeal against bad decision making by ATOS who are not sanctioned when they get it wrong but are paid for ‘through rates’ of claimants and, thus, disincentivised to spend enough time inputting the data accurately in the first place. The truth; that, according to the government’s own statistics, most of those claiming disability benefits are genuine, is not the overall message that gets through and I admit that hearing or reading everyday that I am a piece of ‘workshy scum’ is starting to take its toll on my mental health when I am already physically unwell and have been everyday for 15 years.

You may wish to claim that you don’t mean genuinely ill people like myself but in the public imagination your words tar everyone with the same brush – is that a deliberate strategy?

Nobody would argue that the amounts involved are insignificant but to say, as you did, that "the system that is played more than any other, incidentally, is the disability benefits" was, at best, an error born of ignorance and at worst a deliberate untruth that might incite further hatred against sick and disabled people.

So thank you for adding to the burden of all of us who have been unlucky enough to become ill or disabled and are, consequently, unable to work, by repeating the lie on national television. Perhaps you should check the figures first. I suspect that the rate of fraud in your own organisation is much higher. Do you have the figure?

I look forward to hearing from you.

Advent Reflections

2011-12-01T11:23:00.000-08:00

A Journey through Advent

Every day of December, until Christmas , Stonebird will be posting an Advent Reflection on the reality of living with Very Severe ME.

The reflections can be found here :

http://www.stonebird.co.uk/advent.html

Rules for entering into the life of a person with Severe ME

2011-11-16T01:40:00.000-08:00

Anyone with very severe ME is extremely physically frail and has profound physical multisystem dysfunction. They can so easily be made more ill by the slightest thing.

Anyone getting involved with someone with Severe ME needs to take extreme care and have incredible awareness of the impact of any contact they have, especially if that contact is in a medical or caring capacity.

There are some key rules to entering into someone’s life.

· Be genuine.

· Be respectful.

· Be equal.

· Listen carefully.

· Understand as much as possible of the nature of that person’s illness and disability , how it affects them and how you affect them.

· Avoid arguing with them. Argument is exhausting and damaging for the person's health and well being.

· Accept you do not know best, but need to learn about that person’s reality.

· Realise how vulnerable they are to other people’s energy and attitudes and assumptions.

· Be very careful what language you use: language is particularly pertinent in the life of a person with Severe ME who has had so much incorrect information spread about them , particularly medically ,socially and politically.

· Be wary of misinterpreting their experience.

· Make sure that you are being genuinely person centred. Ensure you are congruent in this. It is very easy to say you are , yet still try to impose your will, your view, your expectation upon them, subtly or otherwise.

Never impose your will: you need to understand that the person with very Severe ME cannot comply with your will, they cannot even comply with their own. Their bodies simply are beyond that level of control.

You have to fundamentally accept your need to fit in with their extremely limited abilities, not expect them to fit in with you.
You must be willing to be infinitely flexible accepting and understanding.
You need to develop genuine empathy.
Check yourself and ask yourself whether you are aware of what this person is experiencing physically, mentally, emotionally and cognitively. You need to be relating to them within the context of this awareness or you may easily misinterpret their words or actions or responses or harm them unintentionally causing distress and deterioration.

Anyone coming into the person’s life needs to ensure they will not make false judgements or interpret the person's experience in a generalised way, based perhaps on unaware literature or misinformation or simply wrong opinion or lack of knowledge.

· Remember that what you can see is not the whole picture : the person is not experiencing the environment nor your interaction in the same way that you are though you can easily forget this.

· You need to understand the complexity of symptoms and how they impact the person. Believe them and accept this , then relate your interactions within the context of this knowledge.

· Do not patronise the person. It is easily done and not easily undone.

· In order to do no harm you must be able to empathise and reflect on the person’s reality. If you do not then you cannot advocate safely for them.

· Never assume that another person actually knows what very Severe ME is. Always check out their understanding if they are going to have power or involvement in the person's life. Great harm can be done by wrong assumptions especially thinking that if someone has a kind face or an easy personality that they will be coming from the right value and attitude and have the proper biomedical knowledge about ME.

· Be very wary of anyone using the wrong language about the person such as using the term CFS or CFS /ME , quoting NICE guidance, talking about chronic fatigue or improvement expectations.

Be very careful not to give the person’ s power away for them , by bringing in people who sound like they know what they are talking about. Make sure you know :

· what definition of ME they use

· what criteria they follow

· what practices they engage in

· what protocols they might suggest.

Make sure you do not inadvertently let seemingly nice people wrongly assess the person, make dangerous recommendations for the person’s health, and end up with inadequate or dangerous treatment plans.

Remember always how anything can make a person with very Severe ME worse and truly aim to do no harm especially through ignorance or relaxing your guard.

Trust no one initially; trust must be us earned and clearly deserved.

The current state of Severe ME services

2011-11-13T13:00:00.000-08:00

Communication , an extract from our forthcoming book : How to Care for Someone with Severe ME

2011-11-04T01:54:00.001-07:00

Communication and Severe ME

Communication is likely be difficult, if not impossible for the person with Severe ME , depending upon the range, complexity and severity of their symptoms. Cognitive issues, in conjunction with noise sensitivity, complicate communication even further .

It might help to break the way you think about communication down to incoming and outgoing communication; the difficulty is how to communicate in the best possible way, at the right possible time : some times might be easier than others .

To begin , you need to know what symptoms might be affecting communication :

Energy levels?
Ability to speak ?
Noise sensitivity ?
Functional ability ?
Visual disturbance ?
Photosensitivity ?
Pain levels ?
Headache ?

Questions you might ask yourself are :

Is it okay to speak to this person at all, or do I have to use some other form of communication - writing a message, visual hand signals ?
Have they left me a message to tell me what needs doing so that they do not have to speak to me ?
Will the person be able to make sense of what I am saying ?
Do I have to slow my speech down ?
Do I have to simplify my language ?
Do I have to avoid wordiness or description ?
Can the person cope with being asked a direct question ?
How am I going to get the information I need ?
Is it okay to touch the person when communicating or are they in too much pain and too hypersensitive ?
How close can the person bear me to be if I have to whisper; how near by can I be without disturbing them ?

When receiving communication from the person , these are some things you might need to consider:

Do I understand what the person is trying to say ?
Are there particular speech difficulties I need to be aware of such as mixing up words, slurring words, low volume of voice , whispering so quietly you cannot hear the person clearly ?
Is cognitive dysfunction a problem for the person ?
Will cognitive dysfunction make it difficult for the person to articulate what they want to say to me ?
Can they speak at all ?
Is accessing memory difficult for the person ?
How bad is their brain fog ?
Are some times of day easier for the person to communicate ?
Are some times of day impossible for direct speech ?
Do I need to listen more attentively than I normally would ?
Will the person have enough energy or memory to repeat a sentence if I have not heard correctly or not been paying enough attention ?
Will I make the person more ill interacting with them ?

Issues relating to Communication

For the person who has Severe ME , the issues relating to communication are intricate and complex . Two-way communication may be much harder than one - way communication. Depending on which parts of the brain are affected it may be easier to do certain forms of communication than others.

Anything requiring the need to deal with incoming information and then outwards communication may be too complex for a person with Severe ME, such as answering a phone , typing an email , holding a pen or forming letters on a page. It may be even harder if the person is asked for abstract information or exposed to voice tones and loudness they cannot tolerate.

There can be multiple difficult communication issues impacting , with varying degrees of intensity, upon the lives of people with Severe ME.

The carer might need to take messages for the person or speak on their behalf. This may be more difficult at certain times such as when/if paralyzed, close to waking up , if the person is very sleepy. These are only examples. Each person varies.

The carer may need to write things down for the person, write a letter. You may be required to answer the door or speak for the person even at times. Only do such things with permission and try to be as clear as possible with the person what you have done for them.

Always respect their communication difficulties and work with the person .

The physical world, no matter how physically near a person with ME may appear to it , may still be totally out of reach to them; this may not always be obvious to the carer especially if they see a person able to manage something in one particular moment - not realising that the possibility of doing it again may be months away .

Do not assume anything :

Just because the person's eyes are closed, do not assume they are asleep. They may not be able to open them.

Just because the person is not moving, do not assume they are resting. They may not be able to move.

Just because the person is lying down , do not assume that equates with resting. They may be in great physical distress.

Just because a person sleeps ,do not assume they will feel rested or better afterwards.

Just because a person has got dressed , do not assume that this means they are feeling well or more able; they do not equate.

Just because the person can speak to you, do not assume they can listen to or reply.

Just because a person can speak, do not assume they can answer questions or describe or communicate their needs; they may be severely cognitively affected.

Just because a person can manage something, with great difficulty, in one moment, do not assume they will be able to do it again in another or repeat the activity or action. They will have post exertional malaise/ fatigue /auto-immune dysfunction.

Just because the person can tolerate your energy or your voice , do not assume that means they can tolerate anyone's energy or anyones voice. Everyone has a different impact.

Just because the person is in the same rom as you, do not assume that they experience the environment in the same way as you do. The environment will be hostile to varying degrees because of the nature of their hypersensitivity.

Just because you know someone else with ME, do not assume this person with Severe ME will be the same.

Just because you have read about about ME , do not assume that you will automatically get it right with a person with severe ME; everyone has their own complex set of symptoms impacting uniquely on their lives.

Just because you want to help the person, do not assume that this moment will be the right moment to achieve this.

Remember this : it is highly unlikely that you can imagine just how much the person with Severe ME is suffering .

Always listen and accept what you are told .

It is important to try and understand the many potential blocks to communication , this does not necessarily mean you will be totally successful.

(Greg Crowhurst (2011) from the forthcoming book : How to Care for Someone with Severe ME)

Partnership , an extract from our forthcoming book : How to care for Someone with Severe ME

2011-11-03T00:29:00.000-07:00

Partnership

You need to try and work as best you can with the person. This means learning to understand what they need, when they need it and how they need it : it may not always be obvious.

When helping someone with severe ME you need to be :

prepared
calm
centered
focused on what you are doing and the person’s reaction
open to change, to stop, be more gentle, willing to try something else, or to wait for a better moment.

Because of the nature of the illness and their experience of the world , people with Severe ME inevitably become more and more withdrawn from normal life; ordinary things and ordinary people hurt, torment them, mentally, physically, emotionally; whether intentionally or unintentionally.

The person with ME has a daily mountain to climb, as they try to understand the damaging impact, upon them, of the environment and the people in it . It is very easy to end up not liking anyone , not being able to tolerate anyone because of the impact they have upon you. It takes wisdom and awareness to understand what is caused by the illness and what is caused by other people's ignorance and sometimes deliberate selfishness.

Many people give up staying in touch with the person with Severe ME and ignore their reality because it is too painful for them to think about or too inconvenient to accommodate. People struggle with inadequate levels of physical care and support because engaging with others is just too physically difficult; the carer may be the only person who interacts with the person .

To minimise the hurt, it is good to try and work out , if at all possible, the underlying motivation behind the apparent carelessness of other people.

There is colossal neglect , such a lack of understanding of the complexities of engaging with and aiding people with Severe ME .To help is not simple, but that does not mean it should not be provided. Helping someone with Severe ME requires endless understanding , reaching out and awareness; many people simply do bother. In their ignorance, they choose to misinterpret the person with ME, to mislabel them as being difficult, as having a mental health issue, or just not being caring enough.

Sadly it is often left to individuals to survive as best they can and to fight for everything they need. If they have a carer in their life that person may well become engaged in the exhausting battle for proper financial and physical services and healthcare. They may even have to advocate on behalf of the person.

In these circumstances the carer needs to be exceptionally well informed, aware and focused upon the needs of the person. The needs of people with Severe ME do not easily fit into normal assessment systems or rigid systems and structures . It is not always comfortable as a carer to keep pushing for the rights and needs of the person you care for.

It may require you to be bolder than you feel in speaking out.

It is always important to remember that you are in partnership with the person , that you stand with them , for them and that together you can make a monumental difference to that person's quality of life , health and their experience of the world. Despite any negative messages that you are powerless and without value, you can empower and value .

To work together to build up trust and respect and a partnership that works for you both, you need to be person-centred in all your interactions and aware of the impact of the person's symptoms , so that you will better understand their reaction to you.

(Greg Crowhurst : From our forthcoming book : How to Care for Someone with Severe ME)

The MOMENT approach, an extract from our forthcoming book : How to care for Someone with Severe ME

2011-11-01T10:54:00.000-07:00

ALL THAT WE HAVE been advocating finds expression in our :

MOMENT approach :

MAXIMISING OPPORTUNITY to MEET NEED TENDERLY.

This is your primary aim, because the person with severe ME is :

extremely hypersensitive
easily exhausted
constantly experiencing their symptoms
not experiencing the world and the immediate environment in the same way that you are.

With ME the experience of the person is not obvious and needs to be learned and understood as much as possible. Underlying the moment approach is the desire to understand and an intention to empathize with the person who has Severe ME.

To maximize any opportunity to help the person in a gentle and tender manner, you need to be flexible, compassionate, sensitive , personally aware and attentive. In Severe ME, is never really possible to know from moment to moment, whether any thought, action or interaction is possible.

Experience has taught us that it is not possible to imposes external expectations and demands ; the illness does not allow the person to comply with routine, rigidity, imposition or particular time frames. To apply external pressure or to expect a person with Severe ME to fit into any routine or expectation is unrealistic.

There is a massive delay between will, hope and functional ability, in Severe ME will power alone cannot change the person's physical reality or disease, no matter how much the person may want to do a particular thing .To maximize the opportunity to interact with, physically help and support the person with Severe ME or to help increase their quality of life, you need to take a moment-by-moment approach and be flexible.You cannot force the person and they simply cannot force themselves .

Often it may seem as if there is an empty space around the person, in which nothing is possible ; perhaps if you are paying enough attention and are willing , able , gentle and patient enough, there may be a moment in which you can achieve something together. It is essential to remember that with ME there will always be a post exertional impact that needs always to be considered and taken into account.

The moment-by-moment approach will often refer to what might be considered insignificant or tiny achievements , such as being able to cope with moving the bedclothes, take a sip of water, open your eyes and look at something, being able to tolerate the help needed to get to the toilet; these can be big events in the life of the Severe ME sufferer, even though the well person might take them for granted.

The change in ability to cope may be very subtle, it may take days, weeks, months to achieve even the simplest thing like washing your hair, writing a letter.

You need to grasp this idea that a moment in time can make all the difference to the person with Severe ME; that even when something is totally impossible in one moment, it may be achievable in the next. The role and the relationship of the carer are key in changing the impact of the disease upon the person's life. The caregiver becomes a link between the outside world and ME world. It is so important that the relationship that the caregiver has with the person with Severe ME is hopeful, uplifting valuing and validating .

The caregiver potentially makes the difference between a totally hostile environment and a positive hopeful moment.

The MOMENT approach requires personal maturity and great commitment. You wait upon the person to indicate their ability to accept help and you watch out, with awareness and knowledge to make sure that when that moment comes, you are ready and available. The MOMENT approach is rooted in a value system that believes in the integrity and equality of person-hood of the sick person and a deep belief in the human spirit to triumph over adversity.

One of the dangers of living with and helping someone with Severe ME is despair. A personal value base, motivated by love and the valuing of life, underpins the moment approach.. Without an intrinsic belief in the value of life, despair can overwhelm and negate many opportunities and moments for interaction.

Fundamentally, the MOMENT approach is a life- bringing approach, deeply respecting the person with Severe ME, who has most likely been disrespected and disregarded medically, socially and politically.

The caregiver's role is incredibly valuable and you should never underestimate its importance in the person's life. Embracing the moment approach should help you to have the best chance of enabling the person and enriching the relationship between you both. If you keep missing the moment, it is going to do more harm than good and not be satisfactory for either of you.

(Greg Crowhurst : From our forthcoming book : How to Care for Someone with Severe ME)

Coming soon

2011-10-29T04:48:00.000-07:00

broken lips

2011-10-28T00:14:00.000-07:00

Do you :

Know what it is like

To be an irritation to

The one you love ?

Where even the noise,

Of your thinking

Is too much for her ?

To apologise for

naturally kissing

her abused head;

for she could not tolerate

the caress of your

whispering lips ?

To be an idiot for picking up a plate

Too ear-splitting !!!!

To eat on your own

To feel the nightmare

in your guts

when you look into her

her brown eyes,

long since dulled by

soreness

and verging on despair ?

Through what you believed

long ago,

would be busy days,

not ones you would spend

not knowing what to say

or do;

sitting

still as a mouse

in the company of torture.

To find the backbone,

to make the phone call

to go to the meeting

this afternoon,

as tired as all the years

you have spent scrapping

To make the breakthrough

To get the advice

To be informed

To apply the method

Making her worse,

Much worse than fear

itself could have

had any

information on.

Galloping, hideous

Worsening

Cracking of

Your sanity

And you coping -

only by finding somewhere

to put on your headphones

and finally

break the silence

Except she can hear;

You huddled in the corner

delinquent.

Oh yes,

..then you know Severe ME

Greg Crowhurst Oct 28 2011

Film Review: Voices From The Shadows

2011-10-26T05:30:00.000-07:00

Film Review: Voices From The Shadows

by Simon Overton (editor of “Missed Diagnoses” & Author of “Charcot’s Bad Idea”)

“If I’m on an ME death list I just don’t want to know!”- Consultant Neurologist,
Edinburgh (following comments by an IOP psychiatrist that he was being forced to x-
ray his mail and take other security precautions after alleged threats from patients).

Medicine and Psychiatry in Britain are under siege. Doors are being kicked down
by ski-masked thugs whose one objective is to abduct the children of medical
professionals. This is not for money or extortion but for compliance by hardworking
doctors with what these ME activists regard as the most effective treatment for
their condition. Across the country psychiatrists have been forced to take extreme
measures, mail is x-rayed, visitors searched and children are escorted too and from
school in case they are snatched. The situation is grim with many families unable
to see their children, once taken, for months if not years, held as they are in locked
rooms, often in ramshackle buildings with little care or compassion.

If the previous paragraph were to appear in the Guardian or other newspapers it would
be a national outrage, the Government would expect the police to make arrests. The
group would be infiltrated by special branch, intelligence would be gathered, the
crime would end and the criminals brought to justice. There would be heavy prison
sentences.

The Film Voices from the Shadows, a shocking and deeply disturbing documentary
produced and directed by Natalie Boulton and Josh Biggs, makes clear that it is
patients themselves who have suffered abuse at the hands of some elements of the
medical profession. It is parents whose children are profoundly ill who have had
their doors kicked down by police and social services whilst psychiatrists sign
section orders and remove their children to locked rooms in locked wards. Yet
what is remarkable is the restraint the film shows. We see the suffering, we hear the
families and children describe their experience. The contributions from world experts
including Dr. Nigel Speight, a consultant paediatrician and Prof. Leonard Jason add
a profound clarity to the narrative. Jason says candidly “This is as important as any
other major illness, whether it is cancer, heart disease or AIDS.”

Biggs camerawork is sensitive rather than dramatic, this is not sensationalism, the
tone and mood are one of careful reflection on patients neglected and disenfranchised
from proper medical care and attention. It is a call for more clinical research, more
understanding, to support charities such as MEResearch UK and the 25% group.

As Jason puts it :

Voices from the Shadows is the most important and significant film on
pediatric ME that has ever been produced – Prof. Leonard Jason

http://voicesfromtheshadowsfilm.co.uk/

Speak Your Truth Presentation

2011-10-12T02:26:00.000-07:00

Speak Your Truth

There is a huge amount of misinformation surrounding Myalgic Encephalomyelitis; I emphasized , in my presentation at the AONM / Midlands Fibromyalgia Group Irish International Conference on Oct 9th, how important it is to stand up for the truth of ME, as a devastating, neurological disease .

For the last seventeen years I have cared fill time for my wife, who has Very Severe ME. I have learned a lot about how to cope, how to care for someone that ill and how to fight.

It is very difficult, there are not many doctors or consultants with the experience and knowledge to know how to treat people with ME. The fact is, if you are to achieve anything for the person you will have to fight every step of the way.

We have shown how it is possible to get an biomedical service , that the person with Severe ME does not have to left , with nothing being done for them, for decades on end, as is so often the case.

It takes enormous courage , as a carer, not to compromise, to keep on struggling despite the odds, to put oneself on the line, time and time again; to never give up, to find a way through the never-ending, grinding pain and suffering, to make the necessary connections, to advocate , to push , to deal with the inevitable inertia and snails pace rate of change - and your own anger.

For sure you will be pushed to the edge , as I showed through the paintings I shared, but with my wife so completely ill, giving up has never been an option for me.

Hearing the person’s truth - which brings its own issues and then standing up for it, is the only way ultimately, I believe , that you can help the person with Severe ME and yourself.

In my presentation I tried to share a little of what I have learned : how to be in the moment with the person, how to focus , how to be gentle , how to keep going and growing .

Art, music, writing, these things keep me alive, and give me enormous hope .

I am greatly encouraged these days by the pioneering work of the AONM ; they have seemingly burst out of nowhere , with a fresh new energy, a dynamic , ultra-committed approach to working alongside patients and carers ; an uncompromising determination to find a way forward, especially for the most severely ill.

In all these years, I have never known anything like it. I feel we are riding a wave of change, at last.

One day soon and it won’t be long, now I feel, we will , all of us, surely make that long-awaited and desperately needed biomedical breakthrough.

Tenth Anniversary of The Breakthrough Prayer

2011-10-08T05:28:00.000-07:00

October 8th 2011: The tenth anniversary of The Breakthrough Prayer

We celebrate with a poem from Theresa :

The child within you
Sweep your house clean, each moment,
Especially when night falls…
For will your house be there tomorrow?
We know not the time or hour…

Anger held tight; furious fists
Drive finger roots and nails 
Through the body, mind
And spirit map, binding it in.

Surrender to God’s Holy Spirit,
Embrace the ocean and without fear
And arms outstretched be carried through
The water to the salty depths

And give it ALL to HIM.

Who waits, within, without, longing
Through your grief, hidden,
Calloused by time, down the long
Lonely years of repression

To set the CHILD in you FREE

On bedroom carpet make your desert,
Where stars touching heaven, spill out
In startling clarity into the ubiquitous hush
Of His Presence…

Where each breath and tear and smile is heard

‘Ask and it will be given you
Seek and you will find
Knock and the door will be opened’
A guarantee from Him
Who was and is and is to come

Amen

We pray for the success of the world wide premiere of Voices From the Shadows today at The Mill Valley Film Festival.

We pray that it will make a breakthrough happen, that people will be shocked to see the neglect of people with ME and the reality of Severe ME, that it will change hearts and minds and bring much needed light to the truth of this devastating physical disease.

May Voices From the Shadows bring about a fundamental shift in attitude and integrity towards treating this disease with both the seriousness and funding needed to find a cure and to separate psychiatric fatigue from the neurological , multisystem dysfunction of myalgic encephalomyelitis.

We pray especially for the people involved in the making of the film and give thanks for their bravery in making themselves vulnerable in this way for the good of many.

We give thanks also for all the personal and medical breakthroughs that have been held in the power of the Breakthrough Prayer throughout the last decade ! Alleluia !

World Wide Premier today : Voices From The Shadows

2011-10-08T00:26:00.000-07:00

World wide premiere of Voices From The Shadows, The Mill Valley, Film Festival, USA, Saturday 8th October2011

The reason we participated in the film is because we want the secret suffering of people with Severe ME to be seen and respected properly, rather than the common media image of ME which is portrayed only as Chronic Fatigue, as being "tired all the time" with perhaps a sore throat, or depressed.

The representation of ME has a form of depression by the media has done so much damage, in ordinary people's understanding and image of people with ME.

Depression is the last thing you have in Severe ME ; in order to cope, to survive, you have to maintain your internal integrity and sense of who you are in the face of an horrendous onslaught of disabling and debilitating neurological symptoms,which tend to be omitted from the popular image of ME, but ultimately is what the disease is all about.

If you have not got neurological symptoms , you do not have ME ; that reality is neglected to such an extent that biomedical tests and treatments are completely ignored, even refused to ME patients and they are treated as malingerers and nutcases, people who just aren't trying hard enough, who somehow are at fault for just being ill.

If somebody says they have Cancer, they will receive compassion, concern and support from the medical profession, Social Services, society; if they manage to walk about, to engage in social activities, they are somehow seen as heroic , whereas the person who has Severe ME, who struggles to engage with ordinary life, every moment of every day, but may be able to occasionally interact , is more likely to be misinterpreted as being not really ill and not needing the help and understanding which is critical for them to survive.

Let us hope this film brings about a radical shift in people's awareness of serious neurological nature of this neurological disease and the need for biomedical integrity.

Let us hope that the truth will be finally heard that ME is not a psychiatric illness and should not be treated as such.

We believe it is not possible for anyone, with any spark of humanity, to watch Voices From the Shadows and not emerge profoundly shocked , outraged at what the psychiatric lobby have done ; it is gut-wrenching.

(Link to the premiere : http://mvff2011.inticketing.com/films/166223)

Naked ME

2011-10-02T01:06:00.001-07:00

Stonebird Autumn Art Exhibition 2011

2011-09-23T07:12:00.001-07:00

Stonebird announces the launch of its online 2011 Autumn Art Exhibition , featuring works by the author of " Missing: A life broken by Multiple Chemical Sensitivity" Eva Caballé and Greg and Linda Crowhurst, in order to raise awareness of the atrocious hidden suffering of Severe ME and Multiple Chemical Sensitivity :

http://www.stonebird.co.uk/autumnexhibition.html

The work will be on display at the ME and Fibromyalgia International Conference in Ireland on Oct 9th , hosted by the Academy of Nutritional Medicine (AONM) and the Midlands Fibromyalgia Group; please see :

http://www.stonebird.co.uk/irishmeconference.html

for more details.

Hop & Moon Suite

2011-09-17T04:45:00.000-07:00

How do you help someone with Severe ME ?

2011-09-13T07:14:00.000-07:00

Stonebird :

How do you help someone with Severe ME ?

Linda and Greg Crowhurst 13^th Sept 2011

First and foremost you have to remember that the person with Severe ME does not react to the environment in the same way that you, a person without ME, does.

The environment is hostile and assaulting, normal things that you would not even notice or would enjoy are too much, for the person with Severe ME :

Noise hurts.

Light hurts.

Movement hurts.

Food hurts.

Music hurts.

Chemicals hurt.

Cleaning products hurt.

Perfumes hurt.

Contact hurts.

Questions hurt.

Information hurts.

Movement hurts.

Relaxation hurts.

Rest hurts.

Exercise hurts.

Computer screens hurt.

TV hurts.

Talking hurts.

Radio hurts.

Interaction hurts.

Demands hurt.

External expectation hurts.

Clothes hurt.

Touch hurts.

Trying to help, hurts.

Everything you do can hurt and make that person hurt, can make the person more ill, can deteriorate their physical health.

However dreadful their life is, you have to remember you can make it worse without intention.

The best thing a person with Severe ME can hope for is that you :

Accept that the person is extremely physically ill.

Know that they will not react normally to any stimulus.

Know that they may not be able to communicate their needs and wishes at any one time, or at all.

Know that their reactions are because of illness, not necessarily how they feel about you.

Understand the affect you have on them, because they are physically ill and extremely hypersensitive, in multiple ways.

Minimise the impact you have by respecting what the person with Severe ME tells you and by relating it to your own actions i.e. if they say “Don’t wear perfume”, it is because of multiple chemical sensitivity. So please do not wear perfume.

Do not minimise the importance of what they tell you or think they are being difficult. Realise how significant things are.

Even if things seem bizarre and extreme to you, do what is asked of you out of respect. You can make a person dreadfully ill otherwise.

Understand what is physically wrong in the person; in Severe ME there is complex multiple system dysfunction. You need to be clear that ME is a World Health Organization Neurological Disease, not a “fatigue” state, it is not about just being “tired” and exercise will not make it better.

Do not buy them gifts that make you feel like you are a good person, but which are irrelevant or in denial of the person’s reality i.e. do not buy toiletries and perfumes, for a person with multiple chemical sensitivity. Do not buy sweets , pastries, cakes, for the person who has food allergies; unless you know it will not harm them.

Do not give them a writing set, if they cannot hold a pen.

Be aware of any sensitivities, allergies the person may have and really try to think what the person needs or likes, that wil not harm them.

Be aware of the way noise sensitivity impacts upon a person with Severe ME and do not do things that will exacerbate it. It may be worse at different times of day. Understand when is the best time to try and make contact, if that contact involves noise i.e. telephone.

Do not turn up unannounced if they have told you not to. Be flexible in your arrangements with the person with Severe ME. Do not blame them or think they do not care, if they cannot keep and an appointment.

Communicate with them in the way they can manage; overstimulation can lead to worsening symptoms.

Do not disregard the physical limits placed upon a person with Severe ME :

· If they say they can only talk for a minute, do not go beyond that limit, no matter how frustrating that might be.

· If they say “do not ask a direct question”, find another way to find the information you want, because the cognitive dysfunction is complex and very real. A question could shut the person’s head down completely.

· If they say they can only cope with one person in the room, do not bring several people with you to visit.

· Be open and flexible.

· If they say they cannot physically do something, do not disbelieve them.

Do not assume that the medical world knows best. The current medical system is compromised by psychiatric untruth.

Any medical opinion needs to be based upon the biomedical truth that ME is a neurological disease.

Do not assume that because you want to help, that you can help.

Ask yourself what can you offer, how can you help, not hinder or make worse ? Any interaction needs to be based on respect, honour and acceptance.

You need to :

Respect the person

Honour the illness

Accept the physical reality

and combat all untruth.

You need to know that there are no straightforward paths to help a person with Severe ME, no matter how much you want there to be.

You need to know that most things will not help; many may cause additional suffering. You need to know that even if you do all you can to help the person, they may still not be able to access and take advantage of what you offer.

The gap between their life and your life is vast and wide and maybe unbreachable. Isolation may be the only way a person can cope with the torments of their illness and the assaults of the physical environment.

Help them to live their life in their way and aim not to hurt them by ignorance, neglect, rejection, denial, carelessness, condescension, unawareness or over-enthusiasm and good intentions .

Most damage is done to the person with Severe ME by others :

Not listening to them.

Not hearing them.

Not seeing them.

Not accepting them.

Not understanding them.

Not knowing them.

Not thinking .

Not respecting.

Not getting it right.

Not validating.

Not valuing.

Not empathizing

by :

ignoring them

denying them

abusing them

neglecting them

forgetting them

being careless

being arrogant

disrespecting

devaluing

persecuting

avoiding

disregarding

imposing your will

interpreting wrongly

by thinking that you know better.

If you aim to be aware, hopefully you will avoid these pitfalls.

You need to be very careful to make sure that you do not wrongly interpret the reality of the person with Severe ME and end up blaming them, either overtly or covertly, for the situation they are in.

Do not give up hope, do not abandon them, listen and wait and love them still realising that they are horrendously physically ill; there is a great physical need for healing but the answers are not necessarily there, no matter how much you want them to be.

The Matrix of Truth

2011-09-08T23:38:00.000-07:00

Stonebird : Speak Your Truth
Greg Crowhurst 9th September 2011

Under an intimate, dim, glow, last night, because she is too light-sensitive for bright lights, a world-class biomedical Consultant, two Doctors and a Perrin Practitioner , crammed themselves into our long, narrow kitchen , finding themselves a chair, if they were lucky, a stool, or just somewhere to lean, while my wife listened , through a half-closed door and layers of agony, in the adjoining, darkened living room.

The discussion was electric, alive with ideas and suggestions of possible ways forward, referrals that will be made, for a woman too severely affected to be even touched .

All that happened - is happening - because 17 years ago, my wife spoke the truth that she is ill. At first I struggled to believe her, but eventually I heard.

Then we fought , painful is not the word, against the mountain of heartbreaking prejudice, that surrounds ME, for many years to find a good GP- and he heard. So began the long lonely struggle to get to the top, to speak one-to-one, over a coffee, to those who run our local Primary Care Trust , eventually they too heard.

We make good use of the Formal Complaint process ; we never, ever give up.

Two words , make all the difference in the world :

"No more !"

Sick of being abused by the clueless, cruel psychiatrists ?

"No more !"

Sick of your local NHS not providing any biomedical ME service ?

"No more !"

Sick of the lies and nonsense that are spoken about ME ?

"No more !"

If you dare to speak out , if you dare to challenge being left ,suffering endlessly without a biomedical ME service, if you dare to complain about inappropriate and misguided treatment, if you dare not to compromise one iota over the absolute need for proper ME biomedical tests and treatments , eventually you will be heard.

Then others will hear , and they will tell others and so the word will spread and eventually good , positive, things will happen for you : we call it building The Matrix of Truth.

Last night ; that was its awesome , unstoppable power.

Letter to my MP re the Health Reform Bill

2011-09-06T10:33:00.000-07:00

MPs are debating the Health Reform Bill. If you possibly can, PLEASE contact your MP and urge them not to support it .

Here is my letter :

Dear...,

As you may remember, I care full time for my wife who has Very Severe ME; we are very worried about the possible implications of the Health Reform Bill, which , in our opinion, is focused upon choice limitation, demand reduction and profit generation, rather than patient need, especially the needs of the most frail, disabled and vulnerable, and are writing to ask you to oppose it.

The reforms ,which appear to be based upon a privatised ,US “managed care” system, will result, in our opinion, in the tragic situation where those who pay or are insured will get a better service than those who do not.

We are particularly concerned that GPs will be given the power to choose which services they provide in local areas , this means that a person with ME , if they receive a service at all, might not be able to get access to the same services as someone who lives down the road from them , purely because they live within a different commissioning group.

We are also very worried that if this Bill goes ahead, how in a few years years from now independent GPs may have been driven out of the health system and into insolvency by American-style Health Maintenance Organizations (HMOs), especially given how some of those key players might include :

• UnitedHealth, a health insurance company and health maintenance organisation (HMO) already involved in NHS commissioning, which has settled an accusation of major fraud out of court against the US Medicare scheme which funds health coverage for elderly US citizens;

• Hospital Corporation of America, which admitted its guilt in a case of Medicare fraud, leading to the then largest ever fraud settlement in US history;

• General Healthcare Group (GHG), a subsidiary of the South African corporation Netcare, which pleaded guilty to illegal organ transplants;

• Care UK, owned by private equity firm Sovereign Capital; just before the last election, the wife of one of the owners of this firm allegedly contributed £21,000 to Andrew Lansley’s private office, according to the Daily Telegraph .

(Source : Liberating the NHS: source and destination of the Lansley reform . Dr Lucy Reynoldsa, Dr John Listerb, Dr Alex Scott-Samuelc & Professor Martin McKeea 29 August 2011 pcwww.liv.ac.uk/~alexss/nhs.pdf)

My wife has already suffered for decades under the influence of the giant US Healthcare provider Unum Provident , which has seemingly gone out of its way to propagate the myth that ME is not a physical disease. The last thing we want to see happen is even more power being given to these vast multinationals.

We are very concerned how another key player , the Conservative think-tank Reform has according to the BMJ, been funded by at least three of the prospective entrants to the new English healthcare regime (GHG, and management consultants KPMG and McKinsey who are involved in NHS commissioning) .

We fail to understand why these Health Reforms are necessary at all; the existing NHS is widely considered to be one of the least costly healthcare systems, in the world, with one of the best levels of access to care.

We have little confidence in this Government and the way in which it has gone about amending the Bill in such a piecemeal fashion. We are very worried indeed about the repeal of the government's duty to provide a comprehensive system of healthcare; about allowing private companies to challenge GP consortia ; about allowing the National Commissioning Board to distribute funds with no regard to equality; about the fact that Monitor's future role in promoting competition has barely been touched.

We urge you to take note of the British Medical Association’s , call last week, for this legislation to be withdrawn or substantially changed , they highlight :

Inappropriate and misguided reliance on market forces

Unintended, knock-on impacts with longer-term consequences such as the impact on public health and medical education and training

Over complexity and bureaucracy following recent changes to the Bill

Please also take note of yesterday’s UNITE poll, which shows that 90% do not trust David Cameron on the NHS and 70% believe, as we do, that this Bill will lead to privatisation.

A vote for The Health reform Bill in its current form surely means the death of the NHS; this is too outrageous to contemplate. We urge you, with all our heart, not to support it.

The Line

2011-09-05T03:59:00.000-07:00

There seems to be a line
that most people will not cross
friends, neighbours, family, health professionals even,
government officials.
They accept I am ill
to a degree
but simply do not want to know
or understand
how ill I really am
or how they affect me
nor how they can relate to me
in an honest way,
acknowledging
the horror
of my existence
seems beyond
the personal capability
of most people.
They simply do not want
to see, hear, feel
my horror and torment
so they pretend it
does not exist
and ultimately
that I
don't exist either.

Linda Crowhurst 5th September 2011

Bloody Shout

2011-08-31T00:21:00.000-07:00

It's too horrible to show; this picture, with its bloody teeth. I wasn't going to

It's just my outrage fulminates , steams so. I am affronted by the ultimate , untouchable power that the psychiatrists, who cause so much pain and torture are brandishing so hideously at the moment. It scares the pants of me, how it is they, not us, not the sick, the poor, the oppressed, who have the ear of the "liberal" press in this country. We , in our suffering and oppression are voiceless in the mainstream; that's the punch in the face that the Observer affair delivers.

More than that, as I look around , illusions lying in shards, I am a bit doltish, I realize that hardly anyone really cares anyway. Neighbours have long since chosen to stop speaking to us, they ignore us ,they even try to block us from view, family members are long since stuck in denial, the Church community, down the road, waiting for us to approach it, has long since had nothing to do with us, meantime the government run by the psyches and financiers is careering down the road to breakdown, hemorrhaging away in buckets, the values that I have stood for all my life; witness the growing official acceptance that it is okay to kill yourself if you are disabled, or be killed.

This is the unplumbed hurt that wells up, so frequently, in my paintings .

Hugging Linda and feeling the illness destroy her flinching body , my mind is always racing : what to do ? What to do -wouldn't you, if it was your wife ? Even though I am silent , we live in an all-consuming hush, I must be bellowing out fury and frustration .

Later on I grab my paint brush -or erupt.

Then I jerk my groggy head and stagger back into the ring. Second's out.