Helpless

Today has been very very difficult with both of us ill, one with the flu, the other with severe ME, plus knowing that it is only time before we both have flu. An awful thought. On days like this we are reminded vividly of our almost total isolation from everyone.

We are reminded of how few people seem to care, one way or another, especially locally. We are very aware of neighbours , who go to church, chose not to want to know or get involved.  It makes us more aware of the total vulnerability of our situation.

A strong reaction to days like this is a tearing sense of our own helplessness and poverty. On such days it feels as if  things cannot get any worse, except  actually they can, for today at least the continuing building work torment was not quite as extreme as other recent days.

Our reaction on days like this could be to fall into despair ,but we do not go there , because days like this also remind us of the love we have for each other. That is what is important. That is what is real. That is what lifts us and nurtures us and takes us forward beyond despair.

How to care for Someone with Severe ME

I have been busy on a labour of love for months on end - and now :

I just want to announce that my new book : "How to Care for Someone with Severe ME", will be out within days. It has been receiving good feedback.

Here is how Martin Walker, author of "Skewed" describes it :

"In the best tradition of the handbook, this book is both focused and eclectic, covering the very centre of the issue while straying afield to shut the doors on the periphery. It aims not just to articulate the terrible predicament of Linda, but to expose in Greg’s terms the ‘tissue of lies’ spread by psychiatrists and to suggest ways that a network can become a political body able to organise a new right to life for ME sufferers.

Greg Crowhurst’s prose is imbued with justified anger, for not only has Linda’s life and dreams been ruined by ME and a recalcitrant and mercenary medical profession, but his life and his dreams have also has been destroyed. The medical profession has a great deal to answer for as it reaches its corporate destination where every recognised illness has its diagnosis and its chemical or high tech cure.

If you want to know about the reality of ME, in all its aspects, if you want to understand the environment in which ME grows and its sufferers are persecuted, read this Handbook. Greg Crowhurst’s book is of immense value, it’s a holistic book, a total book which looks at ME from the focused pinpoint of the sufferer while rising above the immediate physical problem to reconnoitre the surrounding landscape. 

In following the book’s arguments no sufferer will be cured, no carer relieved of the medical or moral duty to care, but at least those sufferers who can campaign, those carers who do still hope and stand at their posts, will be able to engage with those who stand in their path and hopefully will not be victims of the roadside bombs and false obstructions engineered by the terrorists of obfuscation hiding in the medical and psychiatric professions."

The book will be made available for people with ME and carers to download for free from Stonebird. There will also be a printed copy, which would be useful to give to GPs and professionals : price £11.99.

Government propaganda against the disabled

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

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 ?

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 !

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

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?