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Not being 'passive' also helps you not get fobbed off and end up with a late stage diagnosis or any of the other medical factors that can make all the difference too I can well imagine. This just sounds like tosh sold to distract in the misogynistic/narcissistic 'false hope' presumption some...

That's concerning.

Interesting to get that confirmed. And agreed on the focus re: biggest issue area of last few years being NIHR vs MRC. Yes, I've done a very cursory scout and the only MRC ones seems to be Chalder moving into functional neurological disorder type areas (often with Anthony David it seems) e.g...

side note as I look up to see where the grants for certain researchers have been from. There is currently: Esther Crawley: Sanofi: Exploring the prevalence of Pompe’s disease in patients diagnosed with CFS/ME: £550,000 Listed here: https://www.bristol.ac.uk/academic-child-health/grants/...

I'd say feel free to add - the best inspiration often comes from comparing how things work in different systems for different conditions, and someone asking the 'obvious questions' that when you get used to something operating a certain way you don't see anymore e.g. 'why do they do that' might...

Box ticking then. The thing is that 'any money' for 'no effectiveness' is just 'a waste'. I know it is CCGs that they've been going through one-by-one to sell IAPT into different parts of the country and 'build it up'. I've heard people say that for GPs it at least gives them a short-term...

Side note: why would one keep IAPT alive? As a genuine question - and this will cover probably the different areas it now does inc mental health only and then increasing long-term condition (if they do anything much different given the note of it not having 'physical' or anything in there) -...

For a start the money going to money for old rope in other areas, normally into the same hands (AKA 'the gravy train'), needs to be reassigned.

Yep and 'peer-reviewed' seems to be their latest buzzword, but given the current state of it means very little (with regards quality) in certain subject areas currently - as well of course as said criticism from a review never being in their articles anyway. The fact that PACE was debunked and...

Agreed. Just because an assistant helped and certain individuals were encouraging for it to be written doesn't confirm that all the individuals got the opportunity to read the book pre-publication. It sounds like they approved this, but we do not know the process as to whether they've been 'done...

An obvious concern is that they are 'all roads lead to' either because they are closed-minded on treatment options and/or have very few that they just adapt the narrative to fit the condition to it being useful for, rather than the other way around of observation--> ideas of what would help. I...

OK I'm only a tiny way through this and there is a lot to get up to speed with in here. So the test (Conditioned Pain Modulation Test - CPM) they used to identify responders vs non-responders was to have thermode on the left forearm (all are right handed) which heats up to 52 degrees and back...

I have a concern that who is located in clinics directly influences this also. If you have a load of people offering CBT on the sly and just therapists then you don't have the on-the-ground training up and insight for clinicians and scientists to actually meet those with ME. And of course if...

To me this is a very complex idea/question/concept that also probably could do with its own discussion at this stage. Really focusing on where we are now and trying to unbundle the 'maths' of it to see if that really is true/the case or we've just been conditioned by their own PR etc. I'd like...

And, speaking mainly only from recent few years noticing it particularly, even with MPs' interest there is always a 'big general news' that most see as 'vital' and 'more important', as if we are supposed to understand (rather than them realising nothing will ever be done if that is how they...

Yes and Javid telling the story we saw the 2min clip of I wondered was whether him realising that there needed to be 'more' around just 'we launch the report'. It's difficult to know because I didn't see the rest and we'd all be sensitive to privacy needs of someone etc

Agree, the whole thing has intrigued me for a while about the BBC. I think in the more general too it is a worthy discussion to have (with this as an example within that) - but probably as a new thread and maybe a members only one as well/at first if only because it gives muggy brains the...

I agree on the BBC and have found their seemingly implicit attitude obvious. I have just done a check though and it seems that basically none of the big papers other than the times covered this. A few more covered the bit on 13th May when he promised radical action. I half feel silly for...

What she says contradicts at every turn. In the video interview above (I think it was) she talks about the wonderful thing being that science still operates based on journals as a source of news bla bla, [whereas sports etc get news from twitter - NB I might be merging inadvertently a few...

It seems the equivalent to if a Starbucks were to do research claiming that the names on its cups put into a database mean something (as a made up example "10% of our customers are called tall guy or Karen") about the customers rather than the staff.