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Slightly confused given their links to ME Association why they are reinventing that wheel when MEA have done a lot of work on collecting people’s stories.

Yes @Ravn good point as a gradual onset PWME I had a spell of a few years where I caught every cold going I used to have to carry cough sweets round with me as I always had sore throat and cough and would have to use the losanges so I could manage to speak to colleagues. Seems quite possible...

@rvallee it appears to have been on BBC world however not the main BBC news content aimed at UK audience

The fact they were forced to start the NIH studies has saved them from looking really stupid in the face of people like Paul Garner talking about the read across. Just think what position they could have been in if they’d started five or ten years or 20 years earlier..............

Heads I win tails you loose - again

@dave30th

‘Nice’ patients v ‘nasty’ patients Good grief

Sticking my nose in From this side of the Atlantic isn’t there an ME group in Massachusetts that’s pretty good on the advocacy side? Maybe they would get involved

It must be a bit difficult for anyone with long Covid on social media - not groups open posts - when people with ME engage with them then a bunch of people with ME all want to have their Twopennorth and 57 different angles. On the other hand people need to realise they are pronouncing to the...

Interesting development. The remit of oversight organisations like ombudsmen commissioners etc isn’t necessarily set in stone. No reason why in future the role of this new commissioner couldn’t be expanded.

Ugh

thanks for updates @Andy my Brain not in gear at the moment so I’ve cancelled my booking so appreciate the opportunity to catch up later. The question I wanted to ask is about recruitment. Some areas don’t have local ME charities or Facebook support groups. I would be happy to try to...

Hopefully Carol Monaghan and ForwardME charities have picked up on this and are contacting him. @Action for M.E. @Russell Fleming @EspeMor

14k plus in a week is pretty damn good

It depends on the group leaders. The pace lite message is subtle. I only fully understand some time afterwards that despite being aware of issues with GET I thought I was avoiding any pressure nevertheless I had increased activity rather than adopting exercise. Two aspects. One I had done...

Fair point

Unless it is someone who is prepared to be an agent of change doing a bit of challenging the status quo from the inside.

So it is indeed completely useless - at least a bag of tripe has a potential use

Ok not as helpful as when a comment is added and you can retweet that but good her followers may have seen.

That’s the AFME tweet not Miranda Hart’s