Rethinking the treatment of CFS — a reanalysis and evaluation of findings from a recent major trial of GET and CBT (2018) Wilshire et al.

Congratulations to all the authors for this excellent analysis, and for getting it published. Today’s release of the SMC’s “alternative facts” sheet suggests they are on the back foot and getting desperate.

Well done!
 
From the BBC article, quoting neurologist Dr. Jon Stone:
Dr. Jon Stone said:
"the question is whether it is better to offer a modestly effective treatment supported by data from many other trials, with a realistic discussion of its pros and cons, than none at all."
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This seems to be the fallback position. Keep recommending GET/CBT, because it's better than nothing.
 
Webdog said:
From the BBC article, quoting neurologist Dr. Jon Stone:
Dr. Jon Stone said:
"the question is whether it is better to offer a modestly effective treatment supported by data from many other trials, with a realistic discussion of its pros and cons, than none at all."
Click to expand...

This seems to be the fallback position. Keep recommending GET/CBT, because it's better than nothing.
Click to expand...

Really, the question is 'does anyone capable of having a realistic discussion of its pros and cons of CBT/GET with patients want to work as a CFS CBT/GET therapist?' The answer seems to be 'no'.
 
Firstly very well done to the authors for the paper and for getting media attention. The articles might help to soften the strong hold of the idea of behavioural intervention and rehabilitation as remedy for CFS

However if the news went to the smc who've already released a fixed contrary position who then release it to the media through their filter, it is problematic. Both BBC and the times use chronic fatigue in the headline, which is hugely trivialising and I suspect came from the smc presentation if there was one.

I have not read the times in full so this is on BBC, one can only imagine how Miriam tucker would have made this a fully rounded, in context story - such as IOM report, biomedical research , severity , cost to economy, concern over NHS care, bias of funding, other countries dropping cbt get etc - rather then this study now says this, but they still say that on one study. The charities were not used much as comment so nothing robust with language such as call for retraction, scandal, grossly inflated claims, risk of harm from get, unhelpful media promotion , waste of time and money, how did this hype happen , challenging the Cochrane suppprtive evidence was said.

The BBC article gave the bare facts of the reanalysing paPer which is very good to have out there. However it was quite minimally covered and it's not coincidence surely that right next to this on BBC health is a longer story on tai chi as effective mind body treatment for FM.​

Jon stone suggesting that we might need other rehabilitation therapies is astonishing.

It's less boat rocking than it could have been but I guess that's inevitable with BBC smc. If NHS England analyse the paper in depth and discuss it, it might have greatest Impact, on health professionals. Look forward to reading the times which might be less establishment .

The smc put up JS and CP as experts. I'm not sure on CP here, it's either good for being fully negative with some pointed personal critique, in contrast to JS, or weak for mainly just quoting the authors of the paper rather than personal comment, in contrast with JS.
 
There are 2 audiences for this 1) Expert health professionals/ scientists who drive research and 2) The public and the medical profession who cast a glancing eye over these types of stories.

Don't underestimate the power of planting a seed of doubt over GET/CBT. We know how damaging headlines saying ME patients can exercise themselves out of it have been, even when people don't read the story. The way this paper has been presented by the BBC and The Times is good from that perspective. Easy bite sized pieces we can share with the uninitiated who don't want to wade through scientific sounding papers or even read the story.
 
From Michael Sharpe:

They report different results from the original trial. However this is not surprising as their analyses used only part of the trial dataset
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Is he trying to be funny? He's not seriously trying to imply that the authors were unduly selective in the choice of data to include in their analyses is he?

Words almost fail me. It's not as if the authors wouldn't have gladly used the whole trial dataset, but somebody blew 250k of somebody else's money making sure they couldn't.
 
TiredSam said:
From Michael Sharpe:



Is he trying to be funny? He's not seriously trying to imply that the authors were unduly selective in the choice of data to include in their analyses is he?

Words almost fail me. It's not as if the authors wouldn't have gladly used the whole trial dataset, but somebody blew 250k of somebody else's money making sure they couldn't.
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Also this one:
We note that most of the analyses they report have already been published, either in peer reviewed journals or by ourselves on the PACE trial website
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The PACE authors only wrote their paper with the original protocol because they knew once they had to give up the data that it was going to be revealed
 
Congratulations to the authors! :)

The BBC piece is disappointing - they've swallowed the SMC line whole and are regurgitating it. I can't read the Times piece because it's paywalled but it certainly sounds more accurate, given its headline.

http://www.sciencemediacentre.org/e...-for-chronic-fatigue-syndrome-cfs-treatments/

SMC said:
Declared interests

Dr Jon Stone: “Prof Sharpe was my PhD supervisor in 2003. I do collaborate with Trudie Chalder on another RCT (www.codestrial.org) and have invited her to conferences etc. I still co-author some publications with Michael as well.”
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Yes, that is indeed a conflict of interest.
 
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