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It feels like Gladwell has a vision 'for the next generation of ME/CFS rebrand' and I'm finding it scary that he is being worked with by both MEA and Afme given I suspect he has been pushing for just a few tweaks and a rebrand 'because it still works, we just measure it wrong' since 2013 when I...

These super-long things just show the lack of knowledge and genuinely anything new to offer - it's just either 'don't really know what they are measuring or doing' or trying to hide it in the same way you hear of lawyers using the tactic of burying the other side in paper so they don't find the...

I’d be interested in this too along with whether Cochrane / larun has been referenced anywhere ?

OK I'm picking up on their working with Pete Gladwell What have I missed - why are both charities now working with him? Is he radically changed or different to what I'm assuming?

I'm divided. I 100% agree with what you are saying, and I don't think it does much for longevity of any issues if they haven't anticipated that working out how to spend something well might end up being the harder task than getting the money I know there is a chicken and egg situation going on...

Is it at all similar to what you get temporarily when you have a general anaesthetic ? And are warned not to go too overboard (even though you are often starving as you had to fast before op) eating too much for the next x hours?

I very much agree that it is more about the grift claiming 'cheap at any cost' with conflated and dodgy made-up figures behind said business cases. That also happen to have made up extrapolations that are not appropriate that try and put the blame at the door of the very people who couldn't...

just to check is there a risk of you getting landed with the legal fees for the other side in the worst case scenario, even if your own legal is on no-win no-fee (for you)?

Now it is after 10am you can just go to catch up which you can fast-forward on I think Sarah was stellar, and I don't know how she managed it after everything but she came across brilliantly. There was just about enough time to get some important facts/overall picture across which I think had...

I can't help as I'm reading through this, and at the same time enough of these papers that often end up being switch and bait claiming to be about tackling frequent attenders, but end up being a vehicle instead for 'pathwaying out anyone with MUS' (start off claiming to look at frequent...

That BDA doc that was written by dieticians (but I have issues as 2 are from the Leeds hospital and the other is Sue Luscombe, both not apparently being aware that their experience is 'niche' to their context of having psych-related positions and not to be generalised) is discussed further here...

It seems so plain that it is anything to avoid saying the primary management strategy at the moment is Energy conservation and that if you don't get that right then it causes the symptoms and deterioration. and so... CBT for generic sleep stuff, generic ideas of pain, generic ideas of...

Interesting insight I can't help but think so this is what happens when you have lax methodological regulations for therapy-based treatments being trialled, and then mix them with drugs (which would normally be measured with objective measures and have yellow-card reporting).... basically it...

A centre of clinical expertise, or a number of clinics that are properly clinician-led and scientific-development (including just mapping our prognoses so we have that data correct) have the freedom eg that was given at the start of covid to try some straightforward approaches and clinically...

I think this is a really important reference to log somewhere. It might have been the legal advice input, but the consistencies across testimonies were a bit sinister really: 'unknown cause with physiological and some mind-body bla', 'no specialism' (but also weren't open to it when it came)...

When I think about the amount of money being spent on people like this that has snowballed over the years. I mean even if they just switched these people from the unevidenced side to from the better side of psychology (ie trained cognitive psychologists who can see the impact of exhausting...

Financial Outcome Measure I've found a scary number of papers along these lines from research that seemed to have been funded as 'initiatives' or become initiatives, where lots of the MUS (I think now people think of functional as the new 'MUS') non-evidenced tropes are used and talked about as...

I'm wondering if there is another factor at play here. And indeed it wasn't about the ME, but it did need to take account for the limitations/adjustments that meant need to be understood. But I think the generic 'functional' and the unwillingness I still see of the NHS to want to bucket anyone...

I think it would be useful to have a page to dissect this particular one. Particularly the fact that the part of the article in the darker shaded area is trying to describe 'what is the problem with NHS treatment of ME'. I' very worried indeed someone has thought the solution to push for is 'a...

Like the ‘public good’ but without someone checking the evidence isn’t a dodgy cherrypicking out of 2 patients from a database of all patients