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NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

lilpink

lilpink

Senior Member
Messages
988
Location
UK
Valentijn said:
This contains a lot of excellent comments in support of a NICE update, and not only from ME groups. Most of them are very detailed, and cite support for their statements.

The comments of those opposed to an update are quite minimal and often completely blank. But those organizations may offer a good list of those who would most benefit from educational material and accurate scientific information:
British Infection Association:


Royal Liverpool University Hospital, CFS/ME services:


Royal College of Paediatrics and Child Health:


Association of British Neurologists:


Royal College of Psychiatrists:


University of Manchester - FINE Trial:


Royal College of Physicians:


Regional Public Health Agency for Northern Ireland:


Feedback on removal from the static list is a lot more jumbled. Some don't seem to understand what it entails, and some want it removed from the list so new psychobabble can be incorporated in the near future.
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I'm just laughing! It's so good to see this nonsense in the rear-view mirror. We are so used to seeing it as the signposts to how we as people with this disease are perceived and thus how we will (not) be treated that a change in that status quo brings on bouts of uncontrolled mirth . This hubris in the light of today's announcement will have me chuckling all day. They so thought they had it all sewn up did they? Huge thanks must go to all the stakeholders who made such credible witnesses to what is really happening in the world of this disease and which could only be ignored if one chose to strap on blinkers and adhere to Wessely's dictum of 'nothing to see here, move along now'. My guess would be that however much the bods at NICE might well have wanted to stroke the egos of their best mukkers, the weight of evidence made it untenable, and short of being seen for the biased and intransigent organisation we have experienced, whilst at the same time bringing disgrace on themselves as individual decision makers, they had only one route they could feasibly follow. To extend my driving allusion, and in concert with the observation that the MRC thankfully turned down EC's MEGA baby, it seems as though 'we' (as in 'those of us who believe in the real-deal-disease and what it really is and what it really needs') are in the driving seat now and have overtaken that old Bedford van with its tail-light knocked out and its bumper cobbled on with duct tape, spluttering smoke from its rusty bonnet and limping onto the hard shoulder. Never mind...there's always a platitude around the next corner. Maybe for them it's 'SMILE it might never happen'?

Pig-flying day!
 
A

arewenearlythereyet

Senior Member
Messages
1,478
This is excellent news. So grateful to everyone who's put their heart & soul into bringing this about.

Special mention to @Keith Geraghty for his evidence. :thumbsup:

Off to tell my 30 or so "stakeholders" the good news !

I know this is just the start but I agree with @Valentijn if they dismiss the Oxford criteria it will hamstring the BPS crew from ever publishing such large quantities of garbage.
 
S

Sean

Senior Member
Messages
7,378
A.B. said:
Hopefully the SMILE trial today will be a public relations disaster.
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The timing is very sweet. I have lovely images in my head of a mad last-minute panic over at the SMC as they try to figure out how to spin this, and slowly come to realise that they can't.

arewenearlythereyet said:
I know this is just the start but I agree with @Valentijn if they dismiss the Oxford criteria it will hamstring the BPS crew from ever publishing such large quantities of garbage.
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This alone is a huge step forward, and it looks like there are a few other goodies in it too.

Mark today in your calendar, folks, might just be the day that the critical political wheel finally turned in the UK medical establishment.

Only took them a mere 47 years (if you start the clock at McEvedy & Beard in 1970). :meh:
 
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