Tuesday, 8 September 2009

More on NICE skulduggery

I woke up during the night feeling pretty ill. This is not uncommon, you can feel 'okayish', then suddenly feel like hell. I had walked almost a mile yesterday, with breaks, maybe that is why. Over the years I've noticed that I often get worse in autumn, I hope this is not a relapse.

Today, I will not go out. These weak legs can just fuck off.

And this from ME Association, further highlighting of the scallywags who made the NICE guideline on ME/CFS.


Cusp said...

Whole business is a disgrace. Dr Mitchell and his wife were the two Specialists at my local M.E. Clinic. I saw his wife and it was a breath of fresh air to meet a mecial professional who obviously believed everything I said.

Sadly they both retired two months after my appointment and we've been left with no proper service at all in Suffolk/Norfolk. They are now about to set up a new service which is supposed to be based upon patients' needs, advice and opinion -- it's no such thing and there has been further scullduggery around that too.

Hope you are feeling better soon

nmj said...

Hey Cusp, It is hard not to feel renewed rage when we see more evidence of the total balls up of the guideline NICE have given us.

Cusp said...

Have a look at this:

People in this region are furious about NICE and the charade that has been going on with apparent patient consultation which has then been largely ignored so that the NICE guidelines can be set in place. For the last 3 years all we've had is a virtualy non-funded OT service which may phone you for a ten minute call every 6 months... good as useless.

I'm at my wits end with it all really. At one point I thought this lack of support was down to living in such a rural area but with medical professionals in thrall to NICE and the Weasle, I don't think it matters where you live.

Mim said...

I hope the weakness is a false alarm and does not mean a relapse. The hell with it, as my mother used to say.

nmj said...

Hey Cusp, There has been no specialist ME service in Edinburgh that I am aware of, I have not had any specialist 'support' since Glasgow in 80s when I was first diagnosed and taking part in neurology clinical trials. I think until they actually get their feeble minds to grips with what the illness *is* there can be no decent support. And of course I can't see them finding money, though they seem able to ringfence bucketloads for their bullshit psychosocial stuff.

Yes, the hell with it, Mim. All of it!

Amy said...

Hey. Sorry that you're feeling rotten. This NICE stuff is all very depressing. I think one of the problems is that the bullshit psychosocial approach is relatively cheap to implement - or at least it's seen as cheap if they think a few sessions of CBT will fix the problem.
If only there was some way of setting the David Bowie spider loose on that guideline development group...

nmj said...

Amy, This is perfect, send the Bowie spiders after the NICE scallywags... feel a little bit better today, the eye saga is dragging on, I am, as of today, on 3 different eyedrops, I think the adrenaline is keeping me going.