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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.........

Has the product got some form of sweetener in it tho?

My understanding was that it isn’t used much for depression nowadays as it isn’t effective compared to newer medication.

why bother with any sort of research - just let Drs try stuff out and use anything the patients say works.................Cochrane you just did yourselves out of a job :banghead:

people criticise politicians for selective or incorrect quoting of statistics. EC isn’t a scientist she’s a politician.