Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

[anni66]

Tymes trust have Dr Speight as their consultant, so we may be able to gain support via Tymes Trust

 

[JohntheJack]

I can't find this information at first glance but maybe I just missed it because I'm a bit foggy:
How many hours/sessions of treatment does the £620 buy?
How much is that compared to 'regular' therapy?

The trial protocol is available here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3879423/

It details the interventions, including this:
The course is three sessions on three consecutive days. Each session is three hours and forty-five minutes long. Group sessions will include three to five young people between 12 and 18 years of age who live within the region covered by the CFS/ME service. During the group, children and young people will receive a theory session and a practical session. The course is free to those participating in the trial.

Apologies for blowing my own trumpet, but I have written previously on the trial. If you're interested:
https://johnthejack.com/2017/07/02/the-smile-trial-part-1/

 

[HowToEscape?]

The trial protocol is available here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3879423/

It details the interventions, including this:
The course is three sessions on three consecutive days. Each session is three hours and forty-five minutes long. ....
https://johnthejack.com/2017/07/02/the-smile-trial-part-1/

If they really have ME, I believe they can't sit up and maintain attention for hours at a stretch, much less try to do so at specific predetermined times.

My 2 cents: Either they're being forced into a level of activity beyond their safe capacity and will be holding themselves up with their eyes closing by the end of each session, they have some odd very mild form of ME, or they have something else and are being used as a means to confuse and distort perceptions of this disease.

 

[JohntheJack]

If they really have ME, I believe they can't sit up and maintain attention for hours at a stretch, much less try to do so at specific predetermined times.

My 2 cents: Either they're being forced into a level of activity beyond their safe capacity and will be holding themselves up with their eyes closing by the end of each session, they have some odd very mild form of ME, or they have something else and are being used as a means to confuse and distort perceptions of this disease.

Yeah, I mention this on the blog. Crawley gets very upset when the word is used, but to anyone who genuinely has ME, the LP is a form of torture.

 

[Esther12]

It would be pretty funny if Esther Crawley was going to announce that she has found evidence that the treatment she provides is less effective than quackery.

EDIT:

It looks like it's 'standardised medical care' vs 'standardised medical care + Lightning Process': http://www.bristol.ac.uk/media-library/sites/ccah/migrated/documents/protocol1.pdf

It thought it was LP vs rehabilitation.

How can they have had people doing CBT/GET and LP at the same time? It will be interesting to see the details on that, and how many in the LP group also did CBT/GET.

 

[JohntheJack]

It would be pretty funny if Esther Crawley was going to announce that she has found evidence that the treatment she provides is less effective than quackery.

If I'm understanding you correctly, then this is something that has occurred to me. This study has implications for PACE and CBT-GET.

We criticize both trials (PACE and SMILE) for using too-broad criteria, patient self-selection, subjective outcomes in unblinded trial. So do all PACE defenders accept validity of SMILE? And admit posssibility that this LP quackery may actually be an effective therapy with scientific credibility? But if SMILE has found an effect for the LP (which I suspect it may have done) then what happens if CBT-GET is no more effective (or indeed less) than the LP? Where do the CBT-GET crowd go then?

 

[Esther12]

If I'm understanding you correctly, then this is something that has occurred to me. This study has implications for PACE and CBT-GET.

We criticize both trials (PACE and SMILE) for using too-broad criteria, patient self-selection, subjective outcomes in unblinded trial. So do all PACE defenders accept validity of SMILE? And admit posssibility that this LP quackery may actually be an effective therapy with scientific credibility? But if SMILE has found an effect for the LP (which I suspect it may have done) then what happens if CBT-GET is no more effective (or indeed less) than the LP? Where do the CBT-GET crowd go then?

Yes - their control group seemed to be 'Crawley's rehabilitation', so claiming that LP was better than that would necessarily be an embarassment for Crawley.

I suspect the trial is going to be such a mess that really nothing much can be discerned from it... but again, it would be very embarrassing to admit that. So it looks like Crawley might have to pay Phil Parker to be trained in LP!

EDIT:

It looks like it's 'standardised medical care' vs 'standardised medical care + Lightning Process': http://www.bristol.ac.uk/media-library/sites/ccah/migrated/documents/protocol1.pdf

It thought it was LP vs rehabilitation.

How can they have had people doing CBT/GET and LP at the same time? It will be interesting to see the details on that, and how many in the LP group also did CBT/GET.

 

[A.B.]

If I'm understanding you correctly, then this is something that has occurred to me. This study has implications for PACE and CBT-GET.

We criticize both trials (PACE and SMILE) for using too-broad criteria, patient self-selection, subjective outcomes in unblinded trial. So do all PACE defenders accept validity of SMILE? And admit posssibility that this LP quackery may actually be an effective therapy with scientific credibility? But if SMILE has found an effect for the LP (which I suspect it may have done) then what happens if CBT-GET is no more effective (or indeed less) than the LP? Where do the CBT-GET crowd go then?

They may try to have their cake and eat it too. LP is declared a success but CBT/GET are still best. CBT/GET could only work at a large scale because it was well disguised quackery. LP is cultish and obviously manipulative and epxloitative. I doubt they will say LP is better than CBT/GET.

Then again with these people you never know. They really seem to believe in this mind over matter nonsense. Maybe Crawley is making grand plans to displace CBT/GET with LP and profit from this together with Parker.

Does anyone believe that LP will be declared a failure? Based on what? Probably not failure to produce positive results on questionnaires

 

[Forbin]

I'm just wondering how the established psychiatric community in the UK feels about LP. To what degree do they embrace or shun it? My impression is that it's "outside the tent" and that they've been happy to ignore it up till now. If this study makes claims of success, particularly if they are greater than those for CBT, I suspect it's going to force them to confront an issue they would have preferred to continue to ignore. I'm not so sure that they're going to be all that happy with person who put them in that position.

Or maybe I've completely misread the situation.



Apropos of nothing, here is a link to an old "Bob Newhart Show" episode in which a friend of Bob's submits to another psychologist's intensive, short-course "process" with unexpected results. (It's written by Hugh Wilson, who would go on to create "WKRP in Cincinnati." http://www.dailymotion.com/video/x5r1h89

 

[Londinium]

If I were a betting man (and I am) then I think this will show a slight result under LP, thereby justifying why the trial wasn't unethical, but less than GET/CBT. Simultaneously defends against the accusation that testing a quack treatment on children is misconduct, but doesn't lead to the promotion of outright quackery* that might have people like Sense About Science getting worried.

---
*the promotion of GET is quackery given that it has been shown to fail on all objective measures, but it at least has the veneer of science unless one digs into the trial design. Whereas even on the surface, LP screams 'woo' on first contact. I can't see even the SMC standing up and promoting something that has been heavily criticised by the wider skeptic community.

 

[BurnA]

then what happens if CBT-GET is no more effective (or indeed less) than the LP? Where do the CBT-GET crowd go then?

More studies to understand which patient responds better to which therapy, of course.

 

[user9876]

If I'm understanding you correctly, then this is something that has occurred to me. This study has implications for PACE and CBT-GET.

We criticize both trials (PACE and SMILE) for using too-broad criteria, patient self-selection, subjective outcomes in unblinded trial. So do all PACE defenders accept validity of SMILE? And admit posssibility that this LP quackery may actually be an effective therapy with scientific credibility? But if SMILE has found an effect for the LP (which I suspect it may have done) then what happens if CBT-GET is no more effective (or indeed less) than the LP? Where do the CBT-GET crowd go then?

If I remember White had issues with the success of FitNet and didn't believe their claimed results.

I can't remember prices for a course of CBT but it may be more expensive than LP and I suspect it is much cheaper to train someone to do LP. Basically train them to take the money and say your better now repeat after me your better now.

 

[Orla]

If I remember White had issues with the success of FitNet and didn't believe their claimed results.

I can't remember prices for a course of CBT but it may be more expensive than LP and I suspect it is much cheaper to train someone to do LP. Basically train them to take the money and say your better now repeat after me your better now.

Yes but the CBT promoters wouldn't make money or careers out of that (unless they are going to jump ship to the private sector) so I can't imagine they will say LP is better than CBT. Also as pointed out elsewhere LP just hits one immediately as outright quackery so there would be more criticisms of LP than CBT in the wider community.

But they also cannot say LP is dangerous nonsense, I don't think, so my guess is either slightly positive result, or certainly no major harms.

 

[user9876]

Yes but the CBT promoters wouldn't make money or careers out of that (unless they are going to jump ship to the private sector) so I can't imagine they will say LP is better than CBT. Also as pointed out elsewhere LP just hits one immediately as outright quackery so there would be more criticisms of LP than CBT in the wider community.

But they also cannot say LP is dangerous nonsense, I don't think, so my guess is either slightly positive result, or certainly no major harms.

I wonder if Crawley is expecting such a high rate for Fitnet that she will promote LP. I was thinking LP will do better than get because the pressure on people to say they are better is bigger (but maybe not if someone else pays).

 

[BurnA]

But they also cannot say LP is dangerous nonsense, I don't think, so my guess is either slightly positive result, or certainly no major harms.

Probably, but knowing them they wont be able to resist putting an OTT spin on things so I'd say we might be in for a few gems.

"Why were the authors sceptical of the lightning process"

Apart from the obvious question of were they sceptical? ,
I read this two ways - either they are saying they were scptical all along and now they were right to be, or they were sceptical but guess what, despite their scepticism, it really does work folks.

 

[Orla]

I wonder if Crawley is expecting such a high rate for Fitnet that she will promote LP. I was thinking LP will do better than get because the pressure on people to say they are better is bigger (but maybe not if someone else pays).

Yes there there is a built-in bias in responses to LP, more so even than CBT I think, but I wonder if they could get around this in some way? Maybe by following up a few months or more after the LP when the excitement has calmed down and the person reaslises they are not better?

It would depend a bit as well if the children picked up any criticisms of LP during it or before filling out the questionnaire. It will be interesting to see how they collected the data.

 

[Kalliope]

A Norwegian LP-coach compares LP with a diet. If you don't follow the diet, you can't expect to lose weight. So if the participants haven't gotten better from LP, obviously they didn't follow the program well enough

 

[lilpink]

slight result under LP, thereby justifying why the trial wasn't unethical,

That would be a bit of a strawman argument on their part. A 'result' doesn't mitigate against dodgy ethics. The end doesn't justify the means.

 

[Countrygirl]

Did I dream it, or did Prof J Edwards tell us on another thread (no time to hunt) last week that this Wednesday/Thursday there was some good news coming out, but his lips were sealed.

Sooooo...................is it Esther discovers LP cures ME providing it is offered through her own brand at a mere £1000 a pop ; or Esther apologises wholeheartedly to the ME community for the years of negligence and abuse ; or.....fill in the blank................

or......................is there something else in the offing........................and we have missed it..(unlikely I know )

 

[Jo Best]

This is why MEGA is so desperately needed, isn't it? To see which children and young people are genetically predisposed to benefit from which treatment: CBT, GET, AM, LP etc.

ETA: I recall from the File on 4 BBC radio show Esther Crawley's colleague at the Bath paediatric service (whatsisname off the telly - did the original TV series Trust Me I'm a Doctor - Phil Hammond) saying words to the effect that if the children don't respond to one treatment then they try something else, so presumably LP gives them 'something else' to try in their doctor's bag of tricks.