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Nope I think the two important bits of what she did say to focus on are: So some of us might want to be looking at whether we can get radical rest in. The sad truth is that whilst the NIH at least did provide the raw data I'm not sure the same standards apply here - which given the...

Yeah, someone might want to point her to the thread on EFfRT, or maybe that's why

It is worse. Because the norm with these sorts of things is that you are coming up with 10 measures, and everyone who needs to be around a table then scrutinises these as measures and their weightings and methods - I've been part of how these things are done for other things. There is a reason...

To be fair, I'm not sure she gets the statistical tests she is citing - so I wouldn't assume that tone on that part is due to her assuming we know less than she does but that she perhaps is being passed on the info etc because there is a stats expert in her team/it's not her specific role.

Really? Doesn't sound the type of healthcare anyone would want for any other illness? She's hardly forwarded the argument she has in mind when she says this well - how can these be used to help someone's health? And no, really no proper scientific medicine would be using any of these types...

I'm confused on what they are claiming to achieve. And also get a sense there slyly might be under it an attempt to re-jig the definition of what ME/CFS is according to CDC and new Nice guidelines ie what we should be moving towards Really what this needed if done properly first and foremost...

If I have that correct then I don't know how to square it (or discuss it on here given the sparse info) with the ambiguous terminology and employment of the term 'mental health' for things like FIDI, Munchausen's, for declaring someone 'functional' vs 'sectioning' (and then they can treat them...

I can't remember which article or interview etc it was from but I remember Sarah makiing the point that one thing she was particularly referring to when she talked of Palliative care was that Maeve didn't have anyone to talk to about her impending death - that apparently having someone who...

Given how much I’ve been able to overdo it in the past and the damage it has done I think it’s something to do with the recovery from exertions ‘process’ rather than signals of what to do or not to do being the main component of this It’s a bit of getting in the weeds of the ‘but your legs...

Indeed I think we need to be aware there is potential for a lot of harm from the psychiatric - we just are even less likely to hear it due to such labels meaning if they die the waters are apparently muddied by the psychiatric label - this is the bit that made Maeves situation unusual in being...

Foreseeability of the impact in real life of providing just enough to allow the terrible treatment‘because everyone claimed to be confused by the debate’ when there is no debate once you’ve got that update on all those papers being built on sand foundations of a paper that was properly debunked...

Agree. most people are not interested in statistics and switch off when you start having to talk about these things like ‘technically broke a rule’ as even those who sort of can grasp some sort of maths or science really have to get this area to talk on those methods terms and get the impact...

Looking at the Hansard notes from 2002/3 I’ve seen they bite the cost of me/cfs to be huge but the cost due to consultations for proper diagnosis and care by GPs /medical to have been £900 per head. CBT MUS nonsense I think I’ve seen quotes upwards of £1700 including in old Nice type cost...

Just posted on Facebook www.facebook.com/story.php?story_fbid=953500123487285&id=100064819177796 about asking people to ask NIH to support their me/cfs research map to advance research

https://www.pulsetoday.co.uk/news/politics/labour-to-bring-back-former-health-secretary-alan-milburn-in-nhs-reform-role/ Starting to doubt he’d be offering anything other than a repeat performance?

https://www.thecanary.co/uk/analysis/2024/10/06/dwp-nhs-co-working-job-advisors-hospitals/ Another mention when you get half way down to the ‘Work Well’ job programme (pretty sure that was deliberately named in order to create confusion and stop us mentioning and being heard on the WorkWell...

Yep I think this one needs looking into carefully https://en.wikipedia.org/wiki/Improving_Access_to_Psychological_Therapies I also have a memory of a tv programme that looked back on new labour where he is an architect of strong views on certain things

Still just reading through this and not opened the reports and plans and research it refers to. It’s from 2002/3 https://hansard.parliament.uk/Commons/2002-01-22/debates/a75516dc-531d-4229-8959-33b20f9081ae/CfsMe So no idea yet if this is where it went from a good medical officers report to a...

Maybe having done that for long enough the magnitude of what you’d have to realise you’d done makes for such huge cognitive dissonance that person absolutely must be kept labelled because you aren’t prepared to go through the (nowhere near as much effort or pain as that relative will experience...

Am I remembering wrongly in thinking millburn was very pro CBT and iapt etc back in the day? Of course I’m very open to someone having read the results and changed their mind on things over such a time period and if so that insight being more useful than a naive kind to persuade with the same...