Cochrane ME/CFS GET review temporarily withdrawn

I share your caution @JemPD, I wish I didn't but I do. Everything you fear could come to pass. However, that is a fairly high risk strategy on behalf of Tovey/Cochrane. If it went wrong it could do then a lot of harm.

By even temporarily withdrawing (or saying they will withdraw) the paper because of unanswered questions put to the authors they are drawing further attention to the paper, the problems with it and the lack of rigorous science behind it. People with no real interest in ME/CFS will look at this because they are interested in what is happening to the Cochrane Group generally. We know this "science" won't stand up to unbiased scrutiny.

Colin Blakemore's comments are a mistake both on the BPSers part and his own, I think. Is it possible, given his past, Colin Blakemore is so fixated on the idea of "activists" that any reasonable criticism will be viewed by him as a threat? That his issues are severe enough he doesn't realize himself that he is grossly over reacting to reasoned argument? Let alone he is accusing severely ill, bedbound and housebound patients. Despite a judge in the ICO tribunal finding that there was no evidence for such claims in that case.

Is it possible Blakemore is being used & that is why he was chosen as a spokesperson here? He attempts to claim no connection with ME/CFS despite his role in the MRC, so he knows the BPS cast, but is guaranteed to run blindly with the activism accusation.

Either way, I think it reflects rather poorly on his judgement and could be damaging to his own reputation.

Unless they have some very good, as yet unheard scientific arguments then anyone standing behind this paper will be facing scrutiny and possibly risking their reputation I think.

 

We would hope

 

https://twitter.com/user/status/1053227728227438592

https://twitter.com/user/status/1053242615641133058

https://twitter.com/user/status/1053247020352311297

https://twitter.com/user/status/1053248092055764992

https://twitter.com/user/status/1053266714543185920

 

I don't get why there isn't more focus on the whole "normal range" thing.

https://twitter.com/user/status/1053219120660004866


Is it really so hard to understand?

Tom and Bob (and others) had tried to point this out to Cochrane and The Lancet many times, but each time, the authorities have deferred to White's answers - even though they are clearly inconsistent (see protocol explanation vs what actually appeared in PACE 2011 vs graph of distribution - Twitter thread has the quotes).

I won't believe that Cochrane really do plan to withdraw it until it they do, and until *they* explain why.

 

I guess that the normal range stuff is less directly relevant to Cochrane's review than the recovery claims. Larun was still meant to look at all protocol deviations when assessing the risk of reporting bias, which would have included ll that, but it looks like she just ignored it.

I suspect that they're having some long and difficult conversations about how to phrase any withdrawal notice now. I wonder if they're getting any pushback from people within Cochrane?

My hope/expectation is that Larun's response to the concerns about her work and the decision to withdraw it makes it very difficult to believe that anyone is going to think she is a suitable person to conduct a CFS review again. She has really raised the stakes on her reputation, and I think it's going to leave her looking much worse than she would have done.

 

I doubt Cochrane would have taken this step unless they felt strongly about it and believed they could make it stick. The article clearly was a preemptive strike by Larun and probably SMC enablers, likely before Cochrane was ready to announce anything publicly because discussions were still ongoing--although per Larun those were monologues and not dialogues. I think to take this step, given whatever enormous pushback they were getting and knew would get from Wessely et al, took some guts on David Tovey's part, at least from my perspective. He had no reason other that concern about the issues raised by Kindlon, Courtney and many others to do something like this, especially given everything else they are having to deal with unrelated to this review.

 

But "normal range" is *directly* relevant to "recovery", because recovery is defined by "getting back to normal" or getting back into the "normal range".

Again, those different definitions matter, because they are used to justify the basis for recovery and improvement:

From 2006 Protocol: "A score of 70 is about one standard deviation from the mean of the adult UK population." [<<<referring to "improvement"]
From 2011 Lancet paper: "a score of 60" is "equal to the mean minus 1SD... of the UK working age population...for physical function." [<<<referring to "recovery"]

 

Right, but the recovery results aren't used in the Cochrane review, so while the spin there is still another reason for concern about selective reporting bias (although there are already plenty of reasons to be concerned about that with PACE), it is less directly relevant than some of the other problems.

edit: Actually, I hadn't really thought about your 'and improvement' point. Was the normal range problems a part of PACE's 'improvement' results?

 

I think the whole 'normal range' thing is disingenuous anyway, because even without all the other issues, & even if the specified normal range were/is accurate, 85 isnt fit & well, it indicates some issues. So i dont want to be 'within normal parameters' i want to be WELL. Anything other than 95 to 100 on sf36 isnt a fully healthy adult it seems to me (looking at the questions).

 

What does istm mean?

 

Well you clearly know more about the players & the specifics here @dave30th, so i'm reassured by your comment
But i feel i need to protect myself emotionally so i'm not going to get excited until i see how it pans out.

 

it seems to me.

sorry that didnt read well have edited accordingly

 

Thanks.

 

The immediate hostile reactions from most medical professionals indicate their reputation would end up better if they caved in to the researchers because it's all a matter of belief and the narrative of "powerful activist groups" is definitely being taken at face value, even with Tovey's quote stating it has nothing to do with it (though bang-up job on that article, SMC, they definitely have their ducks lined up).

What it depends is on long-term thinking. If they do cave to political pressure (you can bet Wessely and Gerada will abuse their authority here), hindsight will be absolutely devastating to them once we have that damned breakthrough and can finally end the discrimination phase.

So what does Cochrane value more here: short-term face-saving or serious long-term reputation? They'd have to be pretty damn confident that a bunch of lousy unblinded subjective trials will stand the test of time.

 

https://twitter.com/user/status/1053197492366557184








What's happening here? Is this a reference to the unpublished review we already know about or something else?:

https://twitter.com/user/status/1053247020352311297

 

Yes - because the first quote (from the 2006 protocol) is actually about improvement.

It's because they didn't understand what they were doing, that they ended up making the recovery criteria *less strict* (>60) than the criteria they had already set for improvement (>70), which is why they then had to change the improvement criteria too (increase of 8 pts - which I've just noticed they say is 0.5 SD - oh what a mess!).

[ETA: and that's 0.5SD of the SF36 at baseline - which is already a highly selected population ]

 

It isn't, but I am not in a position to say more.
Larun has actually failed to respond over a period of 18 months now. She has failed to respond to internal queries for many months. There are no possible responses to the peer review critique, other than saying that there is no evidence of any value for GET.

I don't think Tovey would have made this move if he was going to whitewash later. There was no need.