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We need to look ahead and start getting MPs educated now ie as soon as the new Parliament is sitting so that they are prepared and can press for changes to NHS provision post new guidelines and in the meantime question NICE and the MRC about progress.

Stephen Pound on the Labour side also stepping down. There will be a fresh effort needed in quite a few constituencies to lobby the new MPs to try to get them educated about ME.

Been announced on the BBC Nicky Morgan is standing down as an MP which will be a bit of a loss on the ME cross party efforts. Not a comment on her politics just it was helpful having someone fairly senior in that party speaking up.

If nobody links to it and there’s no traffic it shouldn’t surface high on search we can all help de highlight it by removing links from any posts and suggest people don’t go to it.

There’s much to learn from successful advocacy I’m sure the Canadians will be happy to pass on their knowledge. ETA and hopefully mixing with a different class of researcher will also be a learning experience

Oh great :banghead::banghead::banghead::banghead:

Is the petition open for people in the US or world wide?

https://www.meassociation.org.uk/2019/10/we-respond-to-nice-suspected-neurological-disorders-quality-standard-25-october-2019/ Response by ME Association to NICE consultation on quality standards of this guidance. I have only skimmed but I think they’ve made some good points about the dubious...

Yes- apologies all but kinesiophobia my arse - might as well go the whole hog and say catastrophising, fear avoidance and all the other BS terms Chalder & co use. Just imagine them reading this paper -literally the only thing they would register is that mention of kinesiophobia.

He says they should be doing traditional psychodynamic therapy which I didn’t know anything about so I googled and it appears to be Freudian stuff about maladaptive behaviour stemming from childhood. Not sure how that’s an improvement on CBT..........

This might be useful http://batemanhornecenter.org/assess-orthostatic-intolerance/

Presumably this is why Ellen Goudsmit doesn’t like people using BPS as a negative term when we really just mean the CFS cabal.

Workwell still use some exercise with some patients don’t they? but a different approach not GET aerobic exercise

Good this is being highlighted at this stage hopefully it will have a useful effect.

Good news. Wish it was more. But 3 worthwhile investments.

Seems like someone should be holding HRA/Bristol to account for their shoddy approach to investigating this. In a normal world the Select Committee on science could do this - call them in for a hearing. Unfortunately in the current political situation we are highly unlikely to see that happening.

Fudge and humbug

These companies that run conferences seem to use this model to operate in IT, public sector training and management initiatives etc. It’s not a scientific conference is it more of a marketing opportunity for companies to have stands and the presentations are the hook to draw people in...

Not surprised side effects are an issue especially at the higher doses for depression I was only on 10mg and sedation effect and weight gain - eugh

So in my opinion having something sweet to distract you is likely to be what has the effect. I grew up in the 60s and apparently as a baby had a bit of a taste for gripe water - which in those days had a fair amount of alcohol in it.........