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Wow, so the GP actually wrote back - I'm guessing there would have been another letter in your records if they had responded to the GP with any concern/offer of help/thanks for being informed etc? Interesting that the GP didn't mention this to you at the time, if I have read that correctly? Be...

Thank you for sharing. I'm sorry to hear of your illness and experiences. The letter is particularly insightful and can be taken a number of ways reading between lines. However on clear message comes through to me which is that they very much have an eye on the data when they are thinking...

True , but I don't know the details about how commissioning works however there needs to be truth and fact regarding the picture of what there is. I don't think that and good intentions can be an excuse, or useful for the future, in hiding what a service is offering and to whom. And the...

:) As a side note, easy to get distracted by someone wanting to frame the conversation on 'how would you tweak this huge amounts of measures of the patient' it has taken me a moment to step aside and wonder why the priorities/focus on the ME Association haven't been eg: - to come up with a...

This is the graphs from the paper I keep mentioning that shows how dangerous using perceived activity as a measure on its own is: https://www.s4me.info/threads/the-p...-reduction-in-fatigue-2013-knoop-et-al.24643/ The thrust of what was 'learned' from that paper which included Knoop as an...

Now I've cleaned up my accidental mulching another quote I was pondering with the posted intended I'm going to insert a quote from the paper I'm thinking of when I mention this: There is a big issue, in fact I'd say the real crux of ME isn't the 'PEM' it's the deterioration from consistently...

Indeed, it's OK we don't offer doctors or research because these very mild people get to the end of this course that includes saying things more positively and the same old approach dressed up with a different name as a Krypton factor to filter out those least well and filled in these PROMS...

there is quite a simple thing going on here the problem with the old guideline on CFS could be summarised that they were treating a serious medical condition with rehab without treatment first. Just as bad as if they did cancer, MS, RA, asthma or anything else with no treatment then any...

agree. there is a big issue that I'm not sure whether it would be the case for other health conditions but certainly wouldn't be the case for research in other sectors, of thinking that rather than picking someone specifically 'qualified to represent the exact situation being looked into' (eg if...

EDITED/APOLOGIES: I'd meant to post the below, and the top bit was half-formed on phone but not checked. I will do so and post that so once I've checked it through. and to add further to point one in this above comment about making sure physical function is part of it then objective measures...

I think Catherine tates grandma character could do a powerful one along these lines if she pitched it right that one could actually make a difference in holding up a mirror to a few people about how it sounds like (and is) bigotry (and isn’t science they think they know when they say ‘just go...

I think the papers that I’ve been mentioning recently show that the comment about it not being used in research are a bit disingenuous and a flase separation given the conclusion of Crawley eg al (2013)

PLease move if in wrong place I just found the following pages on 'best interests' - I'm sure people have read these sorts of things in many different places but found this one interesting as it is necessarily a different angle as it covers those with learning difficulties, but I wonder whether...

I was thinking along these lines as the reason for the issue in the UK being nothing to do with patients specifically, but didn't know the details of how the US systems works as an overall so interesting to hear. I also wondered about the difference in personal liability in the US vs UK systems...

I think it is definitely worth us switching to that thread and looking through his criticisms in detail I'm minded they went into that knowing perhaps they wanted to get rid of the 'physical function' measure years ago SO I don't know whether this was a tick-box exercise of 'any old excuse'...

I don't argue with that - but I thought when this project was first advertised that they made it sound like the reason for it and purpose of the measure was what they are now calling 'PREM' And on that basis the entire 'PROM' should pretty much only be the 'PREM' if it is about assessing the...

More like 'the hypnotism really works (for fear of heights, certainly 'on paper') but it turns out they had a balance issue (say Ménière's disease or undiagnosed Parkinson's, MS or something) so still have vertigo' but without the bit where they acknowledge you can't treat all vertigo with...

And how on earth is this PROM going to identify what any clinic is 'doing well'? I'm very familiar with benchmarking and passing on/exchange of best practice in other sectors and scenarios Often these things begin with someone standing up doing a case study about how they built a service...

From MEA press release (my bolding): "Well-developed assessment tools that represent people’s experience and produce robust, good quality information/data have several benefits for both people with ME/CFS and NHS specialist services. First, and most importantly, they are a way for people to...

I suspected it was based on 'rolling wave'. I've tried googling but there is so much on it being a type of agile planning that I've no chance My suspicion is based on a faint memory that with waves then a 'faster' wave moves through and collects other waves and gets bigger/faster and so on - so...