ExFACTR Study: Exploring the Feasibility of ACT for Children and young people with CFS/ME ... in prep. for an RCT. Crawley et al. Recruiting Jan 2021

I missed this thread. I have just seen this study come up elsewhere. Does anyone thing this name is actually quite offensive and not really suitable?

 

That has never stopped them in the past.

 

That's true, but this name is actually quite sadistic.

 

Link to protocol.
https://osf.io/6gzuh/

 

http://www.bristol.ac.uk/academic-child-health/research/research/cfsme/exact-study/

In this link it says:

“This has informed the subsequent study......”

 

"There is a movement towards the more psychological use of recovery as being what we would term adjusting ."

Spot on - there is a world of difference between feeling better about a situation (and adapting the best one can given the circumstances) and being better / recovered to at or near pre-illness levels of functioning (what patients want). The later is what clinical trails assessing 'treatments' need to demonstrate. Otherwise it's impossible to determine what is genuine change from placebo effects. This fudge (feeling better being substituted for being better) gets everywhere and it's disturbing.

 

I would also query the mention only of the 2007 Guidelines.

Surely, ethically, the study should advise participants (especially under 18)/parents/guardians that new Guidelines on ME/CFS are expected in less than 2 months time (April 2021)?

https://twitter.com/user/status/1361263620659765249

 

ACT, I thought that was used for people with personality disorders to help them get their act together.

They just keep rebranding the same old tried & failed approach of trying to trick/cajole/coerce ME pts into doing more activity.

 

They cite the dutch study, which had a post-hoc recovery threshold that was very, very low. To insist that they are fully recovered is ridiculous.

 

Unfortunately, perhaps yes.

 

It frankly seems to be the "innovation" here: give it a cool name. We know these people are obsessed with labels, it's only natural. They can only ever change the packaging anyway, there isn't much left to tweak when all you do is the same things in loops.

 

Does Ex-Factor mean something in the UK that's offensive? The study is stupid but I'm not sure what's offensive about the title? Is this like "muppets," which in the US only refers to the actual doll-muppets and is not an insult?

 

Got it. thanks.

 

X factor also means something special, what people who have "it" bring. Very vague, whatever it means, but basically it's special, the secret ingredient that turns something normal into something extraordinary but that can't be described. Hence the name of the show.

Pretty sure it's that sense they mean here.

 

I think you're saying the same thing. X-Factor means the same vague thing in the US but you rarely hear it. Maybe they say it in advertising? But the show has obviously made the phrase and meme more popular in UK--so really it's the meme as popularized thru the TV competition of who has the best or biggest X factor.

Add: But given that, what is the X-Factor? Is it that ACT is the X-factor that's going to get them well? I don't really get it.

 

I'm absolutely certain you're correct re the context you're suggesting. Given Crawley (someone I've seen a couple of times in public meetings) it's the sort of vapid, shallow thing you'd expect.

The "couple of times" I refer to I was with two campaigners re the topic were all here for and we couldn't believe how lightweight she was. That might offend some but, frankly, that is what we thought I'm afraid.

 

Can anyone point me to where I can see where the funding for this is coming from ?-it's fairly urgent. Thanks

 

I beieve the Leveret in question comes with 1 t not 2!