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

Amw66 said:
ACT will be a mechanism to help formally redefine " recovery" in paediatrics.

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

Recovery rates quoted by EC have always been high, but then most research seems to be on CF, or the recent construct of CDF ( chronically disabling fatigue) , and we have the oft quoted rates of 80 % recover naturally, but also 80% recover after " treatment" .

Cake and eat it.

I remain hugely disappointed that charities don't call this out.

You can already see this playing out in long COVID too.
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"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.
 
Adrian said:
It did make me wonder about whether they use questionable figures like this in getting ethics approval. If they are treating them I assume this represents people still on the books of the clinic and at one point Crawely was throwing out kids who she didn't believe were compliant. So it feels like a worrying claim.
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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.
 
InitialConditions said:
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?
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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?
 
X Factor is a TV show where members of the public compete to win a prize for their performances on stage in front of an audience and voting panel, and they gradually get voted off by the TV audience.

I think the use of the title for a clinical trial with vulnerable children is problematic because it associates the treatment with a competition with winners and losers and how popular they are with the judges and TV audience. That to me seems to belittle the children's suffering and has all sorts of connotations of needing to perform, and succeed and being judged.
 
Trish said:
I think the use of the title for a clinical trial with vulnerable children is problematic because it associates the treatment with a competition with winners and losers and how popular they are with the judges and TV audience. That to me seems to belittle the children's suffering and has all sorts of connotations of needing to perform, and succeed and being judged.
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Got it. thanks.
 
Trish said:
X Factor is a TV show where members of the public compete to win a prize for their performances on stage in front of an audience and voting panel, and they gradually get voted off by the TV audience.

I think the use of the title for a clinical trial with vulnerable children is problematic because it associates the treatment with a competition with winners and losers and how popular they are with the judges and TV audience. That to me seems to belittle the children's suffering and has all sorts of connotations of needing to perform, and succeed and being judged.
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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.
 
rvallee said:
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.
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That may be what they say they mean. What I think the kids are likely to think of is the TV show.
 
Trish said:
That may be what they say they mean. What I think the kids are likely to think of is the TV show.
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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.
 
Trish said:
That may be what they say they mean. What I think the kids are likely to think of is the TV show.
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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.
 
Andy said:
I couldn't find a trial registration for this via Google. Looking again at the details given, they state

so I wouldn't be surprised if this turns out to be claimed as some sort of extension of the previous study, or a service evaluation, or some other way of getting around the normal registration rules.
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Can anyone point me to where I can see where the funding for this is coming from ?-it's fairly urgent. Thanks
 
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