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You are 100% correct in pointing this out. I guess it all comes back to what they are actually measuring with the way they do their RCTs in this area (and the allowing the methodology to mean teaching to the test and drop-outs and so on) vs what they claim/think/believe they are measuring...

Yep I don’t believe any of it, what I do believe is the power of those who rewrite someone’s narrative and feed it back to them. And how such brainwashing shouldn’t be happening without proof it helps not harms given it us being directed at probably the group most vulnerable to it due to power...

yes it is one of those ‘services with no use and no customers’ which is why they sell indirectly to those around patients by inciting them to push their loved ones or employees into it. parasitic is the correct term. In the actual health profession I think it’s a weird issue if not wanting to...

Yes forms like this often have tables collecting info on these characteristics for monitoring of minorities of equality and yet no standard exists for the condition itself

This is so important and I have real bee in my bonnet about the severe being properly included with design of research and patient input focusing on being doable for them and not the other way around as there are accessibility issues. Services need to be built in the more severe and experienced...

it is a fair point re demographics that you want included too: those who are more severe often get implicitly cut out by things like this as even a long-seeming deadline would require a lot of pacing and they’ve a harder to describe situation, those with more experience would also need more time...

And mention/tie it to recent changes in things like conversion courses being allowed to be offered and concerns over how content can be harmful if incorrect assumptions are behind what is being directed at etc. I do think there is a common sense/descriptive model based on logic for harm of...

I don't understand why if she is offering courses then those are not under the CMA (competition and markets authority) regarding evidencing any claims made. Then there is the ASA. The ILM is best known as an acronym for the institute for leadership and management, which is reasonably well...

I don’t see where the health or wellbeing part in what she offers is it’s disgusting and shouldn’t be being branded as a product under any of the labels she claims at all. It’s just selling bigotry and lies then pretending to cure them ‘send your disabled relative to us because the horrible...

Substitute ME/CFS in what she says with any other minority, equality issue, 'individual difference' ... along with her utter lack of any qualifications or experience (which she seems to have 'faked' or 'inferred' but never had .. which says it all really doesn't it about what kind of person does...

From what I remember Elain Wilkins (and if I remember there was another woman was there too when this first started - ah yes, that is here earlier in the thread) the background of this is more the 'classic snake oil salesman model' where she/they came into it not from a background of even...

But anyone who does psychology would have thought British psychological society for BPS - which isn’t an unrelated subject area given that it’s psychology that we need to starting turning on holding and calling out the psychosomatic’s methodology (as it used to). I don’t know whether this is...

The BPS accreditation document for undergraduate degrees is here: https://cms.bps.org.uk/sites/default/files/2022-07/Undergraduate%20Accreditation%20Handbook%202019.pdf and page 10-11 onwards focuses on the content part. Note that it goes onto to talk about research design and ability to design...

I don't know whether I can get the title or the section correct here but it is a point I've been wanting to bring up quite seriously for a while. In psychology the BPS is the British Psychological Society. And it is this that provides the accreditation for UK Psychology degrees and certainly...

That's a pretty fundamental gap that you've flagged, and it also explains a lot. Including the unhelpful confusion of what PEM is - because the work hasn't been done on finding out what we all mean by it. Indeed it probably varies not only by severity but also what you've done/has caused it, so...

Nope it is 'service management' and should be if outsourced being done by service marketers or managers who are pros in good customer-oriented service. Along with experts in the right medical specialisms/allied areas. I'm cynical enough to think bunging it under a pseudo-psych term, and the...

The important bit is that it is 'someone else's job'. Just like they term as 'mental health'/see it as 'a separate department' rather than realising that really if they accurately knew what that term was at all then they'd change how they acted to not harm people e.g. look into length of time...

It is an interesting topic. A more interesting one is to think of any industries/sectors where regulators and/or oversight does manage to do a good job, and what is particular about what makes these things work because I suspect the process and other bits is more/as important as the 'policy'...

Agree on the specific substance being more relevant. My reaction to wine for example is weird and extreme (a few sips immediately drunk) vs other alcohol but variation across all have been apparent over the decades so the what specifically is in it also seems to be important

Spot on. Those pwme who can do anything see it as a privelege and do it because we'd all like to but we can't because our health is affected by it. So what is with the old school tone? I thought these presumptions about pwme might at least be vanquished in allies post Workwell and the new...