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Showing posts from January, 2012

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

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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. …

Voices From the Shadows - DVD now out !

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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 understan…

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?

Trust is all we have left

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"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/breakthr…

Severe ME in the Guardian

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 !!

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"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 m…

What, then, can you do ?

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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 phys…

Tombstone Land

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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 ce…

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

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(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 m…

Do not make a massive mistake

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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…

Mayor Boris Johnson victim of DLA con trick

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 ind…

Tymes Trust - excellent work

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Please see http://bit.ly/tt-wrong


Please see : bit.ly/tt-phys

Pushed to extremes

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Pushed to extremesGreg & Linda Crowhurst 6th 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 …