I am beginning to bore myself with posts on ME, but some things just cannot be ignored. Still, NICE Clinical and Public Health director Prof. Peter Littlejohns demonstrates how scarily easy it is to ignore certain truths if you are in a position of power:
"Today's decision means that the NICE guideline is the gold standard for best practice in managing CFS/ME... The judgment acknowledges the robust procedures that NICE follows in ensuring that its guidance is independent, evidence-based and fit for purpose. We're delighted that this issue is now closed and look forward to continuing to produce world-class guidance which benefits everyone who uses the NHS."
It's all so sleekit. If he thinks the case is finally closed, he is sadly mistaken.
In a press release last week, Invest in ME said: Though NICE, with their well-paid lawyers and establishment machine behind them, have won the Judicial Review brought against them by ME patients, this is a pyrrhic victory... The "gold standard for best practice in managing CFS/ME" to which Littlejohns refers is an unworthy document which will fail to treat people with ME but may well satisfy insurance companies, career psychiatrists and government departments who have exhibited disdainful indifference to the plight of people with ME... Work will, in any case, begin soon on replacing these guidelines. Patients up and down the country will refuse the biased and ineffectual therapies forced on doctors to prescribe to patients. Those charities and organisations who are really representing people with ME will not allow this particular issue to be closed.
Thank goodness for voices of sanity like Invest in ME.
Thank goodness that real scientists are practising real science and having conferences like this.
*Update. Greenwords has pointed me to this. My favourite quote is from the Association of British Neurologists: "It almost seems that a select group of psychiatrists with a polarised view of this complex condition is directing the development of the guideline from ‘behind the scene’ ”.
I barely slept last night, so angry am I at the sleekitness of NICE. Throughout 25 years of illness, I have walked as much as I can, when able, the state of my muscles has bugger all to do with deconditioning - in fact my legs look quite toned - I probably walk more than many (healthy) lardy-assed drivers who never get out of their cars - the pain/exhaustion I still have in my calves from walking a mile a week ago is because of cellular fatigue not psychological fatigue. Okay, now I am really boring myself.
** NHS Quality Improvement Scotland is the Scottish equivalent of NICE. Hopefully they can be a bit more progressive in their views.
"Today's decision means that the NICE guideline is the gold standard for best practice in managing CFS/ME... The judgment acknowledges the robust procedures that NICE follows in ensuring that its guidance is independent, evidence-based and fit for purpose. We're delighted that this issue is now closed and look forward to continuing to produce world-class guidance which benefits everyone who uses the NHS."
It's all so sleekit. If he thinks the case is finally closed, he is sadly mistaken.
In a press release last week, Invest in ME said: Though NICE, with their well-paid lawyers and establishment machine behind them, have won the Judicial Review brought against them by ME patients, this is a pyrrhic victory... The "gold standard for best practice in managing CFS/ME" to which Littlejohns refers is an unworthy document which will fail to treat people with ME but may well satisfy insurance companies, career psychiatrists and government departments who have exhibited disdainful indifference to the plight of people with ME... Work will, in any case, begin soon on replacing these guidelines. Patients up and down the country will refuse the biased and ineffectual therapies forced on doctors to prescribe to patients. Those charities and organisations who are really representing people with ME will not allow this particular issue to be closed.
Thank goodness for voices of sanity like Invest in ME.
Thank goodness that real scientists are practising real science and having conferences like this.
*Update. Greenwords has pointed me to this. My favourite quote is from the Association of British Neurologists: "It almost seems that a select group of psychiatrists with a polarised view of this complex condition is directing the development of the guideline from ‘behind the scene’ ”.
I barely slept last night, so angry am I at the sleekitness of NICE. Throughout 25 years of illness, I have walked as much as I can, when able, the state of my muscles has bugger all to do with deconditioning - in fact my legs look quite toned - I probably walk more than many (healthy) lardy-assed drivers who never get out of their cars - the pain/exhaustion I still have in my calves from walking a mile a week ago is because of cellular fatigue not psychological fatigue. Okay, now I am really boring myself.
** NHS Quality Improvement Scotland is the Scottish equivalent of NICE. Hopefully they can be a bit more progressive in their views.
12 comments:
Sleekit is a fabulous word and it certainly sounds as if it is the right one here.
Hey Lesley, It is the perfect word!
I too am enraged by the whole thing. The so-called evidence that NICE went on is appalling bad science (as many of the quotes in the piece that Greenwords linked you to highlight). As the real, decent evidence on ME mounts up, surely, surely things will have to change eventually??? Same day i heard about the judicial review result, I got a copy of the CFIDS Association of America magazine, and there were reports about new research initiatives, showing high levels of lactate in the brain, poor blood flow to the brain, evidence of complex viral activity, etc etc ( i could go on but I'm being boring now!) There were several things which could become potential biomarkers. You just wonder how many more years of your life will pass before anyone in the UK takes any notice though...
I like sleekit too.
I know, Amy, how many more years...? They are like spoiled children, covering their eyes and ears to the biomedical evidence, patients' testimonies, listening only to their own sleekitness, suiting their own agendas.
Just adding my 'here here' as you've said it all so well. I may add my gauche-ly worded 2 eurocents worth once my brain grants me a temporary reprieve from it's deconditioned perma-stupour.
Save your energy, Dig, they are not worth getting upset over. The thing is nothing has really changed, these guidelines came out 18 months ago - it's just v.disappointing that the Judicial Review failed everyone with ME. But in 2007 it also failed people who needed drugs for Alzheimers in early stages - NICE refused to prescribe in early stages, only moderate, there was an outcry, but NICE won. I think that was the first JR of NICE ever. I am not sure what else they have been taken to court for at this point.
Your comments on M.E are always informative certainly not boring. I think that because we live with this illness 24/7, working with it, fighting it, listening to it, it can be a very exhausting process. So when we need to explain it or our actions we think we're becoming boring. M.E. could so easily define us, yet it doesn't we are not our illness! I have often felt guilty about not being able to do more to raise awareness of M.E. suffers especially the very severly ill those 25% who are totally housebound. Through your blog and your book you are raising awareness at least your doing something positive with your energy!
P.S. i'm not the kate who wrote the michael gove comment that made you smile? Shame.
hey kate, thanks, i certainly hope the book has raised awareness...but i do get bored with talking about ME, i really just want to forget i have it when i can, but it's always there skulking...
I'm so glad you're blogging about this. Sleekit indeed. I've been reading lots of stuff on it all since the judgement, and in between feeling enraged, I keep coming back to the same thinking as Amy's: the science will continue to mount, the truth will out. Those nitwits will be judged harshly by history.
Thanks for keeping us updated, NMJ.
the state of my muscles has bugger all to do with deconditioning - in fact my legs look quite toned - I probably walk more than many (healthy) lardy-assed drivers who never get out of their cars
I so, so second that.
Too tired (and a touch dispirited) to add anything else.
Hey Greenwords, We can only hope. I end my book on that very note: 'They will stand shamefaced in the corner, wearing dunce hats'.
Hey Signs, I was worried I had been a little rude about 'lardy-assed drivers' and should say in the name of balance that I am a skinny-assed non-driver (not for want of trying, I have had many lessons over years, but never sat my test, I just would not be safe on the roads. I think it is much easier to drive if you get your licence before you get ME).
Well I am a driver myself (though lard not so much on ass), but for some reason I was picturing a Wayne and Waynetta couch potato.
The point I really took from what you said is that GET, apart from being actively harmful for some people, is completely not the point anyway for those of us who do walk a fair bit already (and pay the price).
Post a Comment