There is so much pretending with this illness. Not pretending that we are ill, but pretending that we are not ill.
Pretending you feel okay when you don't.
Try telling that to NICE. For those who don't know, NICE stands for the National Institute for Clinical Excellence. Its guidelines for the diagnosis and management of ME - published in August 2007 - have received more complaints than any other.
As I blogged a few weeks ago, these guidelines will be reviewed at the High Court in London on 12/13 Feb.
In drawing up the guidelines, NICE unconscionably dismissed the 4000 papers written on the biomedical/multi-systemic nature of the illness, preferring to listen to their own 'experts', including a reflexologist/hypnotherapist, a dietician, and a physiotherapist who also practices Human Givens therapy (Jesus wept) .
They make me so angry, these dangerous people. Who the hell do they think they are?
Pretending you feel okay when you don't.
Try telling that to NICE. For those who don't know, NICE stands for the National Institute for Clinical Excellence. Its guidelines for the diagnosis and management of ME - published in August 2007 - have received more complaints than any other.
As I blogged a few weeks ago, these guidelines will be reviewed at the High Court in London on 12/13 Feb.
In drawing up the guidelines, NICE unconscionably dismissed the 4000 papers written on the biomedical/multi-systemic nature of the illness, preferring to listen to their own 'experts', including a reflexologist/hypnotherapist, a dietician, and a physiotherapist who also practices Human Givens therapy (Jesus wept) .
They make me so angry, these dangerous people. Who the hell do they think they are?
4 comments:
There is so much pretending...
The mediaeval nonsense that is the NICE guidelines is beyond my ken. It's good you're blogging about it, I try very hard not to think about it all, am just hoping against hope that the guidelines get trounced in court.
I get so mad about it. Maybe a spell in Guanatanamo for them before it closes, and when they are tortured, our government will cover up its complicity - sorry, I am angry about both things. Yes, honey, thank goodness for the Judicial Review, I can imagine how ultra frightening it feels for those severely affected by ME that we are threatened by this trash. We will all relapse into severity if they get their way.
I know a few people who are intending to go along on the day, some not all that well but they feel that they must make their protest known by just getting there and supporting the campaign.
Most PWME make huge efforts to try to be the person they really want to be, pushing themselves to do whatever when their bodies are telling them to rest. Of course we all WANT to be well. We would be living fulfilling and active lives, if only we could.
In all the years I have had this illness, I would have thought that the many years of campaigning for ME awareness would have had a positive impact. Not so. I used to believe in progress - in all areas of life - and that change should be for the better, that if enough people were campaigning, things would improve. I find that it is so hard to hold dear my principles and values because I wonder if it counts for anything.
The sad thing is, my gut feeling seems to be telling me that despite the best efforts of everyone in this judicial review, there will be no overall change in the NICE guidelines. My naive, idealistic self hopes that my gut feel is wrong.
I'm not sure, Dig, i have fairly high hopes for the JR. But then again the powers that be are so sleekit, who knows how they might try & exonerate themselves.
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