I'm just catching up on news in the ME world. The NICE guidelines for ME/CFS - or CFS/ME as they call it - they are gangsters! - are the subject of Judicial Review on 11/12 February at the High Court in London. The skulduggery behind the way these guidelines were drawn up is breathtaking.
9 comments:
“the modification of behaviour to positively reinforce healthy behaviours”
Sounds like a Victorian physician warming up the electrodes for another 'session'.
Hey Ill Man, I think the Wessley-ites - those UK psychiatrists who don't believe we are neurologically ill - would quite happily get the electrodes out...
What a grubby business. Nothing more one can say.
Whichever way you (as a PWME)approach the whole thing, you're caught. My insurance comapny are inisisting I follow GET and CBT (again !) or they may stop paying my premiums and no doubt the DWP will soon be insisting I do same or my IB will stop too
Hey Cusp, I read somewhere the guidelines will be legally enforceable in 2009, so hopefully this hearing will put a giant spanner in the works. I can't honestly see how NICE can get away with it. Luckily (for those of us up here), the guidelines are for England and Wales only, Scotland is not included, and we seem to be getting our own, I can only hope they are more informed and just…
I don't tend to surf ME sites very often but before Christmas I came across a couple of sites and was astonished at the vitriol still being expressed towards PWME by not only ignorant medics, but also people with depression (being hugely hostile to us because they claim we are not admitting to being mentally ill), and also those with other longterm physical illness who don't accept the disability of ME. Their outrage was frightening.
This is an interesting paper which I have glanced at, it is a round up of 'quotable quotes'.
We just have to keep fighting, any and every way we can.
Thanks for these links, NMJ. I would like to find a way of getting there for some of it, if I can.
Hey Signs, I would love to go but London is a hike for me.
It's outrageous, is all I can say.
Thanks for those links. The 'Quotable quotes' one is particularly interesting. What comes over again and again from PWME is the feeling of isolation, being misunderstood and a sort of impotency. There are days when I'm sure all of us feel like weeping in sheer frustration
Yes, Cusp, we do weep with frustration and rage and impotence, but we gain strength from knowing we are right and they are wrong and we keep fighting the bastards! The Judicial Review has to yield something, surely?
Yes, honey, it is outrageous, but nothing new really, sadly...
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