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Showing posts from August, 2015

Three reasons why Labour's hands are red with the blood of the disabled and the sick.

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Will Jeremy Corbyn apologise for the pogrom it unleashed while in power,  culminating in yesterday's announcement that nearly 90 people a month are dying after being declared fit for work ? Corbyn has called for Iain Duncan Smith's resignation. Yet the Orwellian chain of events that led to yesterday's tragic announcement was devised and set in place by Labour. Here are three reasons why Labour's hands are stained red: 1. It was Labour that introduced the Work Capability Assessment Before the Coalition and the current Conservative government came to power seriously ill and disabled people , found fit for work under Labour were denied Employment Support Allowance (ESA) and then subsequently written off, just left to cope with greatly reduced benefits on Job Seekers Allowance and little support. (Source : Not Working . CAB Evidence on the WCA.) That is because they had all been subjected to the notorious Work Capability Assessment (WCA) which too

ME : The Boss Battle

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I am not a player, but I believe the last stage of a computer game is often referred to as the "Boss" battle; we are talking  the  ultimate encounter. Is that where we are in ME ? Oh yes, there is talk in the air ! According to the MEAction Network,for example, a new network,  writing in the latest edition of The ME Global Chronicle : " We're in a moment of highest attention and media coverage of ME/CFS since XMRV ".(Brea 2015) Hang on ! What exactly does " ME/CFS " mean ? In my book it means " ME/not-ME "...... It means, we are all over the place ! It means : "you win, because we haven't a clue who or what we are fighting for !" I loved "24". How would  Jack Bauer, the hero,  fare if he had no idea who he was working for or for what ? "Oh I'm with the  CTU/not-the CTU" !! (Counter Terrorism Unit). How will the likes of us make any progress all the time our  agenda is just as confused a

This is Severe ME, by Merryn Crofts​

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Thank you so much to Merryn for permission to post her immensely powerful description of what it like to have Severe ME . Please, as Merryn says :  "SPREAD AWARENESS AND REMEMBER ALL OF US AND ALL OF THOSE WHO HAVE LOST THEIR LIVES."  "Having severe ME, is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day.  It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors, and feeling worse about saying no everytime someone asks again. Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost

The suffering, long beyond words.

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How can I convey the suffering Which has long been beyond words As each year takes it toll Moment by agonising moment Living in a totally invisible pain filled reality That no one sees Few recognise And fewer grasp the meaning? How far the world feels from me Even when I lie, With 6 inches of brick Between me and the outside street Where people pass by and chatter And walk Exchange gossip, Stoke dogs Wear perfume And bright frivolous clothes Enjoy the sun Walk on their way Drive in their cars Or rev their engines much too loud Interact and feel happy Completely unaware at bestN or ignoring the fact at worst That, I, lie, alone, in the dark In pain, unable to move Or speak Or bear their voices Tormented by their every word Their loud insensitive laughter Their two- way conversations Their tones of voice The children who pass by screeching in fun The tractors thundering past And the jets invading my space Creating

This is Severe Myalgic Encephalomyelitis Understanding and Remembrance Day.

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This  is a day to really focus on the reality of the most severely affected who are in constant agony, tormented by complex hypersensitivities, completely isolated from the normal things of the world. It is a day to remember, with love and respect, the horrendous suffering and loss of life of so many dear friends and fellow sufferers. It is to hold all in love and kindness and be inspired to make change happen. How long do we have to endure such torment, without hope of proper recognition, understanding, clinical support and kindness? How long will we be misinterpreted, misrepresented, mistreated or given no treatment for our serious severe symptoms? How many more people have to suffer ignorance and death?

Severe ME Day 2015

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The 25% Group have announced that the theme for Severe ME Day, Aug 8  2015 is :  " raising awareness of the home care needs of people with severe M.E ." http://www.25megroup.org/campaigning_Severe_ME_Day.html "This decision has been take in view of the truly dreadful service responses that members increasingly report encountering from social services, when it comes to assessing their home care needs and the type of service required. "

ME : Your Worse Nightmare

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I want you to think of the worst illness you have ever had Remember how dreadfully ill you felt How everything you normally did suddenly became totally unmanageable Perhaps your head hurt so bad that you had to lay in bed all day to cope Perhaps you felt or were utterly sick and food made you feel even worse Perhaps you were dizzy ,off balance  and disorientated so that you had to sit or lie down or fall over Perhaps you had an operation and felt  weak, groggy and sore. You must have felt out of synch with the world and unable to participate in it  like you  normally would Now I want you to add pain Pain that spreads all over your body Not just one sort of pain but pain that throbs , pain that burns, pain that itches and screams at you pain that crawls up your skin and invades every millimetre of your body: Your nose, your eyebrows, your eyeballs,your ears, your scalp, your neck, your front, your back,your toes, even the soles of your feet Everything