'There is no doubt fiction makes a better job of the truth.' Doris Lessing
Thank you for the link, nmj. The fetish for "evidence-based" interventions by NICE becomes a synonym for dogma and bizarrely excludes evidence from a whole range of sources: not least people's individual experiences, which are judged to be worthless.Lets be honest, CFS/ME is all just fancy talk for malingering and a bit of CBT (the new medicinal compound for psychological ales) will have you up and about right as rain. Chin up now.
Ah, Bobo, it all comes down to the criteria, the UK inexplicably uses the Oxford Criteria (invented in 1991 by psychiatrists, anyone with unexplained fatigue would fit their profile of ME), the rest of the world uses the now famous Canadian Clinical Guidelines which rationally emphasise the importance of post-exercise exhaustion in genuine ME patients - so you can see how damaging & enraging it is that the psycho-socials want to put us on treadmills & hurl CBT at us.
I agree, nmj, it was dishwater, wasn't it? And yet Prof Pinching, who I saw when he was still at Barts, was one of the few people I ever saw who I felt really made an effort to address my condition and showed proper respect for it and me. At that time he acknowledged how little support and understanding there was.
Hey Signs, it is scary that someone who should know better seems so blinkered or brainwashed. They all seem brainwashed to me. Really.
I just looked at the link and am confused about Prof Pinching. He's clearly advocating a generalised "management" approach to ME, but I know for a fact that he also prescribes Imunovir, an immune-modulating drug to some of his patients, and he's said on record that he believes ME to be one of the most devastating chronic (physical) illnesses around. He's also done bits of research which show immunological abnormalities in ME patients. But if I'd read this article without knowing this I'd think he was a member of the psycho-social brigade too. How odd. Bobo is right - CBT is just terribly fashionable at the moment. It's seen as a kind of quick-fix for all sorts of things (though no other physical illnesses as far as we know, sigh...), even though (for mental health conditions) there are other psychological therapies which work just as well. I know this from someone who has worked for the MRC. But I can't say more or they'll have to shoot me.
Hey Amy, I am also confused as Prof Pinching is an immunologist and, yet as you say, he seems to be advocating the namby pamby chin up, think positive thoughts stuff that enrages us. So, for people who have little or no knowledge of ME, they open the Observer and see a consultant immunologist espouse this Wessleyite nonsense. That is why I got so mad today. I also had Imunovir, in mid-8os but it didn't help. I recently heard of a woman (in a wheelchair) who had been diagnosed and had supportive consultant (I think Infectious Diseases) & when she went to see him a year later he said he'd changed his mind & had gone all psycho-social. It's f**ing disgraceful.
You're right, nmj, it is disgraceful, and I share your annoyance at the way this piece could reinforce stupid ideas. I tried Imunovir too, not long ago. I wish the placebo effect was a bit more bloody effective. Ho hum.
I would much appreciate it if someone could produce the "digested read" of everything that has been discussed and researched about M.E. in the last couple of years or so. Because it does my head in to read it all and keep on keeping up. But I want to.
I agree, Signs, I rely on my friend (in real life)at Seats for Landing to keep me up to date. I dip into MEA & MERESEARCH (on sidebar) now & then, usually if I'm in a bad phase, but when I'm doing better, I want to forget about it all, not that really you ever can, of course.
What makes me cross about those snippet-y articles, like the one in The Observer, is that in a few words the whole damned thing is reduced a some 'helpful hints & tips'. ( As if having M.E. is akin to a problem such as surplus of limescale build up in your washer or an inability to produce a well-risen sponge cake).Such brief pieces always seem to drag out people like Pinching or some other bod who leave the general public with the idea that we're either malingerers or have a mental health issue. If either were the case, I'd be happy to admit to it if I thought I could have some kind of recovery, but after 30+ years of struggle I'm a bit p****ed off with the whole thing.I refer to David Axelrod's site and also to Hummingbird's guide when I need some info. but, like you say nmj, most of the time it's all so confusing and such a mire of infighting and conjecture that I try to avoid it and just get on with some sort of life.(Sorry -- feeling crabby today)
I know, it makes you weary.
We each find our own ways of coping, and I believe that we should all feel proud of our coping skills and our endurance and tenacity. The problem with these CBT-based programmes is the ridiculous assumption that we cannot do whatever activity because of some irrational fear of symptoms that only exist because we perceive them to exist. Like you guys, I like to get on with my life to the best of my ability, and I have to admit I would rather ignore all the 'debate' and 'controversy' in favour of salvaging what I can from my limited opportunities.
Me too, Dig, but it is scary that the CBT brigade could be forcing PWME into their programs of therapy & graded exercise, that truly frightens me...I wish they'd just leave us the hell alone.
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