I could kiss Dr Ian Gibson MP for the recent report on the desperate need for biomedical research into ME/CFS in the UK. He is indeed a bright angel amongst the frightening individuals (those medics, mainly psychiatrists) who continue, incomprehensibly, to proclaim themselves as experts on this illness. The most recent culprits are the angels of darkness at NICE (National Institute for Clinical Excellence), who have just drafted very dodgy proposals for the management of ME/CFS, based very much on the psychosocial model of the illness. Dr Charles Shepherd, the medical advisor to the ME Association has welcomed the Gibson report and rejected the NICE proposals as 'seriously flawed and unfit for purpose'. Sadly, the NICE guideliners seem to think something is true just because they say it to be so - they wilfully ignore patients' testimonies; they deny the results of the biomedical research that is currently going (no thanks to the MRC which blatantly favours psychosocial research into ME, all jobs for the boys, I say); and they cheerfully ignore the World Health Organisation's classification of ME as a neurological illness. They claim they want to educate us in 'recovery from viral illness' - they still refuse to accept that we have failed to recover normally from a virus because something catastrophic has happened in our bodies, something biochemical! The ME Association suggests that NICE's credibility will be severely tested if these guidelines go through in April of next year, and wonders if NICE is 'living in the real world'. (But then this is the same organisation that has stopped Aricept being prescribed on the NHS in spite of it having proven benefits for people with mild to moderate Alzheimer's disease. I can think of another name for NICE, and it's not the National Institute for Clinical Excellence. I prefer to think of them now as the National Institute of C**ts and Eejits.) When the Chief Medical Officer declared ME to be a real illness in 2002, it was a giant step forward, but if these NICE guidelines go through, we will have taken ten giant steps backwards. However, the day will come when these deluded practitioners, these fairyland dwellers who champion CBT and graded exercise for fuck's sake, will stand in the corner with dunce caps on their head. I would bet my life on it. As one ME T-shirt slogan cries: Cut the Crap, Do the Research!
Update: Feedback on the Gibson Report.
Update: Feedback on the Gibson Report.
6 comments:
Corecto-mundo NMJ !
-C
Hear hear. We have some similarly terrible guidelines here in Australia. Sadly they leave GPs under the impression that you can offer ME/CFS patients CBT, GET or nothing. I live for the day they find the cause of this illness (or group thereof), and hopefully a cure (pipe dream?). If I ever get rich my piece of philanthropy will be to support research in this field.
It is really quite farcical: what they haven't understood is that graded exercise will make people with genuine ME much worse. If you get better from aerobic exercise, you don't have ME, it's that simple. The Gibson Report attempts to highlight the very real potential dangers of graded exercise, as do all the ME charities, as do the patients. Apparently, the NICE patient questionnaires stated in small print that they didn't actually have to take patients' views into accounts (and it's clear from their proposals that they didn't). Someone commenting elsewhere has rightly described NICE proposals as being based on 'policy-based evidence', & yet NICE are touting it heavily as evidence-based policy. I do worry that the Gibson Report won't/can't actually affect the NICE guidelines. And to be honest, now that I've had a chance to absorb it, I see the Gibson inquiry is far from perfect, but it is, at least, a step in the right direction. It seems we have to be grateful for any scraps of progressive thinking we can get from the powers that be. But if the NICE proposals come into being in April 2007, we will have entered an age of darkness, they will cause profound damage to ME patient/GP relations, already pretty fragile, not to mention damage to the poor sods who agree to the treatment in desperation, those who are newly diagnosed. It's like science (the biomedical theorists) v religion, (the psychosocial theorists)... it's frightening and medieval.
Please excuse my ignorance regarding this serious topic, but reading your post had the double effect of tweaking my curiousity and making me feel a little uneasy.
I was curious to know the official medical position in other 'medically advanced' countries, so I checked my own country first, and found this:
http://www.cfids-cab.org/MESA/ccpc.html
"Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS".
Interesting reading in itself, but it had a link to this article:
http://www.cfids-cab.org/MESA/ccpc-1.html
"Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET)
Comments from the Canadian Clinical Case Definition"
in which I read the following:
...To ignore the demonstrated biological pathology of this illness, to disregard the patient's autonomy and experience and tell them to ignore their symptoms, all too often leads to blaming patients for their illness and withholding medical support and treatment.
All of this made me think: What the fuck is going on in the UK?
Anyway, I hope they get their act together, for your sake...
Kyklops, We LOVE the Canadian definition! It is scientific and truthful. Anyway, I doubt NICE'll get away with their idiocy, there has been too much of an outcry. I've been battling this since 1983, it makes you kind of weary. You're not just dealing with being ill and making the most of it, you're up against the fabrication and lunacy of an ill-informed, self-important section of medics, but they are wrong. The truth will out. It usually does.
For critical analysis of the report of the "Gibson Inquiry"
The One Click Group:
http://tinyurl.com/24wgag
There appears to be some confusion amongst the ME community, patient organisations and the media about the status of this "Inquiry" and the status of the committee which undertook to carry it out.
It is important to understand that the committee put together by the group's Chair, Dr Ian Gibson, was not a Select Committee. Nor was the "Inquiry" commissioned by government, or any government department, Parliamentary body, office or agency and neither does it have any authority or jurisdiction from the Speakers of either the House of Commons, or the House of Lords, or the Lord Chancellor or the Law Lords. Whilst all members of the "Gibson Group" were parliamentarians and the Oral Hearings were held in parliamentary committee rooms, this inquiry held no official powers.
The "Gibson Inquiry" is not a "Parliamentary Inquiry" and the report which has resulted is not a "Parliamentary Report". As a document, the report has no official status within government it is not a "government report" - it is an unofficial opinion piece and has no teeth at all.
Errors, omissions, contradictions, ambiguities and an overall lack of scientific rigour have been identified in this document which considerably undermine its credibility and its political worth. The committee is being called upon to address errors and ambiguities in this report.
Suzy Chapman
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