Stonebird

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...

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, po...

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?

"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.ston...

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

"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 n...

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 f...