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Yes! I'm glad that she has pulled up the usage of the following charts. ANd how they seemed to be presented as if they showed the data, when they are instead statistical legerments. It shouldn't take people more than a few seconds to eg look at the end point and see that it doesn't map to the...

I find in this situation using the term with these people of ‘you are out of date and working based on old and harmful guidelines and definitions’ is key then pointing them to look at the ME/CFS guideline, because it is official evidence of this. And maybe saying something along the lines of...

Does it in some way avoid the ‘correlation issue’ of what is causing what given disability existed before the task —> correlation with completion can’t be ‘ in reverse’ and I’m not sure it makes logical sense to think someone would complete a smaller % because they chose the hard task less...

Is it worth getting in touch with the presenters too just offering more info and being gently enlightening. As a Paralympian or someone who has had to contend with serious illness there is a chance they are interested and it’s their face on the show etc tbf it’s an interesting twist if they had...

Yes. I read it as maybe they had a template and someone got tasked with listing non/non-visible disabilities and because of the olde (even heard Whitty saying it at some point I’m sure) phrase ‘there’s no condition that isn’t helped by exercise’ or something similar and that loads of conditions...

If you wanted to push it and get really proactive then it could be used by better GPs to signpost help and when to think of it. The things I'm thinking of are more along the lines of: Sometimes it is simple issues like a car park or office moving and that additional walking adding up - which a...

Yep. And also if they took the opportunity to have this bit in then it might mean those who have difficult people at home at least have something written down to take. Plus it might force the GP/nurse/reviewer to understand what PEM actually is for that person, and how bad for them it needs to...

I think it needs a few different angles, and suspect the less documentary ones are the breakthrough points. We are slightly different to the post office on the basis that getting ME/CFS understood through a bit of drip-feeding of better characters through shows that aren't centred on it would be...

:) I love it then!:) apologies for being slow there

Nope, my asthma yearly review specifically includes a plan, and written so you take it away, for when you have an asthma attack. And the different possibilities. e.g. all the way up to when to call 999. There is also part which notes how is the medication /condition ie is it getting worse and...

Not necessarily PROM specifically - as those just measure delivery of something but something simple and more appropriate annually that could indeed pick up on trends eg show up if after these courses people were more disabled 3yrs on.. I think there would indeed need to be a disability scale...

I am finding the idea of discussing the pros and cons /potential catches (my biggest concern is understanding the power base behind GP stuff ) really worthwhile. Am getting tired but that doesn’t mean there isn’t more than I write now to add to this thread of thinking as it comes to me! I like...

If those are trained well, and not from some guideline eg put together by Clare Gerada, then it gets around clinics being able to claim they can't do long-term impact because they don't do long-term care (ridiculous). I think only doing short-term measures and claiming it must be that way...

If those are trained well, and not from some guideline eg put together by Clare Gerada, then it gets around clinics being able to claim they can't do long-term impact because they don't do long-term care (ridiculous). I think only doing short-term measures and claiming it must be that way...

Definitely. It should be the only monitoring that counts. Particularly until we ever get past the phase where treatments and measures that can use coercion or encouragement to produce 'short term bumps that cause long-term iller health' are the norm. No measure that is less than 3yrs should be...

well they can spot vulnerable all right. And being in their hands to pass and even be able to get on with the rest of your career even if you didn't want a piece of this if you realise... would be one of those things. I think medicine needs to stop being allowed to talk about personalities and...

I just wish that these inventors of it were required to live as subjects of their own dystopian world they've created for these others [that I assume they either have unexplanable intense dislike for, or just callously disregard the impact on whilst they focus on their own other beliefs and...

well that is flying high on buzzword bingo! 'in order to educate a new generation of interdisciplinary creative early stage researchers...' and so on, if it was SEO on the search engines that it would get flagged by today's algorithms for being 'too stuffed' with search terms vs actual content...

Interesting that scanning the same document I found the following: I wonder how, given the suggestion is that the MEA PROMS will include service feedback, this will 'marry' with that? Sounds a lot more what service assessment normally is based on if you actually are focused on reactive and...

"appointed as a Consultant Paediatrics/Psychiatrist"