Ramsays Disease
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NICE CG53

NICE guideline will be reviewed despite advice fro technical expert group that no review was necessary at this time.

nice.org.uk/guidance/cg53/r...

Advocacy pressure must continue if the mistakes of the past decade are not to be repeated in this new review.

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"Modified scope" well call me a suspicious old devil but what might NICE actually intend from this tinkering / modification.

I am in amongst the appendices seeking any hint of clarification and may take awhile methinks.

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Please post if you find anything. I'm feeling too rough and too full of mixed emotions at the minute to trawl through it.

Thanks,

Hugs, Margaret. xxx

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Distracted by SMILE trial media circus promoting quack treatment for children really cannot fathom this in any other fashion than pushback by psychobabblers after NICE rejected suggestion of maintaining status quo regarding psychotherapy recommendations.

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Yes exactly that CheshireKatz ! They orchestrate this with the SMC every time something good or positive or professional is reported about ME don't they. Makes me so cross.

Fully understand about being distracted by it. That is part of what is making me feel so rough at the minute. The emotional rollercoaster of mixed emotions. The delight and joy at the NICE decision to review, the sadness for those who have been lost along the wayside waiting for it to happen, the hope that something good will come out of it, the fear it won't, the anger and frustration at the SMILE debacle and the (IMO) deliberate decision to report it now and all that over just 2 days.

My head's spinning and my heart is breaking. Can't cope with it on top of everything else.

So yes I fully understand. Don't push yourself if it's going to make you even more ill.

Take care, hugs, Margaret.xxx

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This from David Tuller virology.ws/2017/09/25/tria... and article in The Times meassociation.org.uk/2017/0... have the psycho babblers on the back foot.

World still travelling faster than one would care for during my forays into what does it all mean though taking some comfort from what on the face of it is good news.

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Proposing inclusion of severe cases into the guidelines will require radical changes in the diagnostic criteria and treatment options which should involve dropping anything remotely resembling Oxford criteria or research which uses this for cohort recruitment.

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Enjoying the good news.

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Write up on the surprising news that the community will not be stitched up in the time honoured fashion meassociation.org.uk/2017/0...

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NICE story

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Love it slowmotion they did harm some peasants with psi cotton sales.

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Maybe a happy ending for us patients yet.

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