Remember, It could be You!

Today has been, let’s call it, interesting.

I have my ESA form to fill in. Most people are blissfully unaware what this involves.

What it involves is thinking about every crappy symptom you have and how it affects your every waking moment and your inability to do the things you would like to be doing, and then writing it all down in immense detail to be scrutinised by a faceless bureaucrat  who then decides your fate.

If they believe what you say you have a roof over your head and can eat for a little while longer – if not you are homeless and starving. And remember you are still very ill while being homeless. 

You can’t even claim JSA if you are really ill because if you need to be well enough to attend the Job Centre and apply for jobs. And well enough to take one if offered. And of course if you could do that you wouldn’t already be submitting yourself to the hell of Disability Assessment in the first place. You would have to very masochistic to want to do that if you are capable of work and should probably seek urgent psychological help.

‘So’ the healthy ones are inclined to state ‘people in other countries don’t get state aid’ – ‘well’, I reply‘, ‘they either have a family who helps them or they die’. And why the race to the bottom all the time?  – bear in mind every time you say such a thing that it could be you!’

‘So’, they declare ‘surely if you really are that ill there will be much medical evidence that proves it’ – well, I respond, ‘that depends on what your problems is and aren’t you naive about the current status of medical science – lucky you! You haven’t had to discover that it isn’t as perfect or sophisticated as you like to believe. And remember – it could be you!’

Today, I have cried and screamed and been in despair and deep dread about what will happen to me if I can’t work out the right way to fill out the form – the magical way that puts me straight in the Support Group without having to effectively enter a legal battle with me on one side and the State on the other.  I am simply not well enough to engage with that and I will, thus, be homeless and still ill.

Today was also the day that journalist Sonia Poulton https://twitter.com/SoniaPoulton  wrote a letter to Ed Miliband about the way the government are treating the sick and disabled and asked him to man-up. Come on Ed – take a fucking stand. You can sign the letter is here: http://ramblingsofafibrofoggedmind.wordpress.com/2012/08/01/open-letter-to-ed-miliband-please-add-name-and-postcode-if-you-agree-with-contents/#comment-523

 

The Google site it was originally on crashed within hours and there is currently speculation that it has been hacked and taken down – hopefully there will be non-speculative news on that later.

It is something that every person in Britain, who has ever been ill, knows somebody who is ill or thinks that they could get ill at some point in their life should be signing. Remember – it could be you. Actually – at some point it almost certainly will be you.

Employment Minister, Chris Grayling, tried to have a Ministry of Justice video explaining how to deal with ESA appeals taken down – it kept moving around and disappearing over several days – of course everyone had made a copy – that is the power of the internet Chris! Finally even the Daily Mail picked up on it: http://www.dailymail.co.uk/news/article-2181978/Chris-Grayling-accused-trying-censor-disability-benefits-self-help-video.html

Yes it could be you who becomes chronically unwell or disabled and needs to be assessed for benefits. If you are one of the lucky ones who doesn’t know what this means I suggest you take one hour out of your lucky non- ill, non-disabled life and watch Panorama ‘Disabled or Faking it’ : http://www.bbc.co.uk/programmes/b01lldrc and Dispatches ‘Britain on the Sick’ ; http://www.channel4.com/programmes/dispatches/4od  both of which, I believe, are available for the next year.

And finally some late breaking news specifically for those lucky people with a diagnosis of ME or Chronic Fatigue Syndrome (CFS), or ME/CFS or CFS/ME or CFIDS or whatever they decide it, or the many illnesses rag-bagged within it, should be called next.

Last year the results of the ONLY medical trail ever funded by the Department of Work and Pensions (DWP) claimed that Graded Exercise Therapy (GET) combined with Cognitive Behavioural Therapy (CBT) were effective for CFS/ME (actually, Prof. Peter White later claimed they weren’t studying ME- but as CFS is a synonym for it and indexed to it in the World Health Organisation International Classification of Diseases that must, logically, mean he wasn’t studying CFS either – so what was he studying at a cost of 5 million pounds, almost the entire research budget for the disease(s)).

Just after 10pm the ME Association told it’s Facebook followers there was going to be ‘NEWS’ – I was forewarned it was bad – most weren’t – they were ultra hopeful as almost everyone with ME is every time there is ‘NEWS’. They were badly let down. The news was that the absurdist government hench-people that run the PACE Trail have now done a cost-benefit analysis and declared it to be the most ‘cost-effective’ treatment for CFS. This is hilarious/horrifying to anyone who has read the original findings and understood the nefarious fudging of statistics involved.

For example – the people declared better were still unwell enough to be readmitted to the trail at the end of it. In the original research protocols we were to be told about ‘return to work’ and ‘actometer’ improvements. They were left out of the results because the results were so poor that nobody with a brain would think this is a ‘treatment’ for CFS let alone ME or ME/CFS etc.... The mind truly boggles.

More information here: http://evaluatingpace.phoenixrising.me/homepageanim.html

When the results were published the press had its usual idiots parade of dumb headlines like ‘ME – just go out and exercise’ – all handled beautifully by the ever spinning institution that is the Science Media Centre which is partly funded by the institutions involved the study and aligned to it. Lets hope we don’t get the same idiocy this time round.

Several CFS clinics run the PACE protocol and help to feed more fudged data in to the ongoing results. I, unfortunately, have been attending one and have seen the slight of hand with my own eyes. That is a whole other story.

So, yes, today has been interesting, and misery-inducing and anger-making and tomorrow I have to get up and deal with continuing to try to fill out my ESA form.

May everyone get what they deserve,

Gregor Samsa