Saturday, 17 November 2007

NICE (not)

I am weary today. Vitun weary.

Maybe NICE will have to rewrite their guidelines.

(I have been contributing to the CiF thread on this highly emotive subject.)

That would be something to celebrate.

I have two beautiful pale blue handmade champagne flutes - I got them for my 4oth - I don't think I've ever used them, they are on the book shelf in the kitchen, high up so I don't break them.

I break glasses far too easily.

Smash them against the taps.

Accidentally, of course.

Today, I feel like smashing something on purpose, to vent my anger at the ignorance that just goes on and on and on.

But NICE are not getting away with it.

They can't get away with it.

They won't get away with it.


Merkin said...

'But NICE are not getting away with it.
They can't get away with it.
They won't get away with it.'
Well, the sad fact is they are trying to get away with it and we know from past experience that once the Gov is of a mind they will try and push it through one way or another.
Our hope is that we can delay it in some way or another.
Still, it was nice to see the level of support in the CiF column from people with experience of the condition.
It is quite common for government sponsored 'opinion shapers' to spread disinformation on these threads and I have no doubt that a couple of the 'well known names' are producing hand made anecdotes to suit - so don't be too angry coz we can see through it, having seen the same people doing the same thing on other topics.
Maybe you can break out the champagne if the football goes ok?

NMJ said...

Merk, I want Italy to win,I have my reasons, now I'll go and hide.

NMJ said...

Yes, there is a lot of intelligent commentary on the thread, we will get there in the end. I really believe this - I have to!

darren said...

I know it's terribly wrong of me, but when I read things like the NICE article, I secretly wish ME on the 'deniers'. My karma takes a beating for it I'm sure, but how else are these people ever going to know?

NMJ said...

Darren, It might be the only way of persuading the non-believers - if they could have the symptoms for a few days or weeks they'd soon be changing their tunes. Is this kind of anti-ME rhetoric still happening in Canada, where at least you have your very civilised guidelines?

I was in tears earlier reading the CiF thread, a few of the opinions are so contemptuous of PWME, but in the end you are just wasting energy. I don't know what tools we have left to educate the non-believers, I really don't.

Speaking of Canada, I'm listening to Rufus Wainwright live on FIP.

I'm completely in love with a gay man.

darren said...

The anti-ME rhetoric is not so institutionalized here, I suppose. Yes, we have our guidelines. This is beginning (just) to make it easier with with insurance companies, governments etc. Still, many doctors still prescribe exercise, are doubtful of their patients' true suffering. And the general public still doesn't have a clue. So I don't tell anyone, which I suppose is evidence of some kind of prejudice.

The world is full of ironies. I'm listening to KT Tunstall.

NMJ said...

. . . not really a KT fan myself, though there is one song I quite like. Rufus is just divine. I want him back, so sad the concert is finished. Tried to listen to archives but maybe too soon, & maybe not even poss, I'm too tired to grapple with French at this point in evening.

trousers said...

I just went and had a look at the thread in question. I didn't read in detail though I may come back to it at a suitable juncture.

I'm pretty low on knowledge as regards ME, I have to admit, but careful not to judge on what little I know: so in that respect your words were a useful and informative guide amongst some of the other comments which were posted up there.

I wish you continuing strength and patience in the face of all this.

NMJ said...

Thanks, Trews.