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Trish Greenhalgh if you’re reading this your response does you no credit.

Much too short notice for PWME to be able to prepare what points to make and fit it in around other activity. that type of thing would take a lot of concentration & energy

Tinkerbell research

Boom implies that pwME have days when they feel a lot better than current normal, good, even recovered to pre illness levels of capacity. And so do a load of stuff or something big. the reality is Push, if you’re mild, moderate as in my experience (I wouldn’t want to claim anything in my...

Hi Helly good to hear from you x

Poorly worded title I read it as GPs who have Long Covid

Yes @Trish spot on

I didn’t spot any reference to this in the care & support plan template although I only skimmed it so could have missed it

It seems like something of a Frankenstein document put together from bits of other things. I’m a great one for not reinventing wheels but this one seems clunky at best.

Me too not ideal but better than I was expecting

Well that’s a relief no tangents or weird questions from the presenters.

Thanks @tuppence thats very helpful

Yes @Binkie4 not just what the coroner’s final report says,after 27 September they would presumably want to see what action and with what degree of urgency by the NHS. I thought it was important that Sean had immediately picked Andrew Gwynne up on the description in his statement of Maeve’s...

It has been good - my friends have been reading it and we had a chat about it yesterday.

As a journalist I would imagine Sean is aware of them

I don’t see how such a policy could exist in the NHS it is such a large organisation it would be leaked, whistleblown.

Thanks Andy I forgot we now have some proper data

Assumption that Long Covid lasts on average 5 years based on what?? It’s only been around 5 years. Has anyone actually done any work in illness duration in ME/CFS??

Yes this is a positive development hopefully expanded on in September

Yes over medicalising use of tube feeding would be considering it for someone like my parent who had severe dementia and lost capacity irreversibly.