Cochrane backtracking

https://twitter.com/user/status/1055773243443945472

 

My feeling is that the concerns raised about the exercise review could not be adequately dealt with and any resubmission passed through an apropriate editorial process in this proposed timescale. Presumably the resubmission is unlikely be subject to peer review before the end of November.

It is very possible that the authors do not properly understand the problems with their review, and so it is not necessarily surprising that they have agreed to this timescale. However, the editorial team must understand what is involved, so either they are giving the authors just enough rope to hang themselves or this is a window dressing exercise before it is business as usual for GET.

Also it is disappointing that there is no mention of moving ME/CFS from the Common Mental Disorders Group of Cochrane.

(NB I am unable to access the full exercise review on my iPad, I just get an error message, but other people seem to be accessing it on other devices.)

 

Until this poeple don’t get taken to court for bad science and fraud we will keep in this situation. We need big guns and being aggressive and bring it w all we have. Take advantage of the momentum. This is where history and a difference is done.
They cannot take it down until the NICE review is done. Is a circular shit show and until some of this fake stuff come down we will not see the end of it.

 

Will Cochrane have enough backbone to do the right thing.... in some ways it feels like we are the ones on the sinking ship.

 

Didn't I read new reviewers will have no commercial or academic connections with the GET/CBT authors?

Cochrane's reputation has supposedly been damaged by this PR fiasco, to say the very least about it. We know public health authorities go to Cochrane as the gold standard. Governments apparently pay Cochrane for theses reviews. Not sure how this works, but this situation may hurt the cash flow. Another harm brought about the BPSers. The ripples travel far.

 

I've been saying this for ages. Petitions etc will get you so far but we *must* now be having the 'legal' conversation. I know it's not a simple route but we must be discussing this.

 

Perhaps the actual story goes like this: The Cochrane editorial team decided to give the authors of the review a last chance to respond adequately to the complaint by October 15th (edit: and asked them to agree to temporarily withdraw the review until then). By October 15th the authors had not responded adequately and the editors (Tovey and at least one colleague) informed Larun that the review will now been temporarily withdrawn. Someone informed a certain journalist working for Reuters and the SMC about this.

Said journalist maybe turned the imposed time limit (edt: and the request for the agreement on a temporary, hence an impending permanent withdrawal) into a decision to withdraw the Cochrane review and blared this out, motivated by whatever. In any case, certain people were very quick in spreading the Reuters piece on Twitter....

Edited after @large donner commented
and I answered here.
(there are still some logical errors in my story, but the Reuters piece isn't logical either...)

 

Wow that's a worrying statement. If thats true how can they be claimed to be independent. Especially worrying when the DWP is part of the government and we have socialised medicine here.

 

Didn't Tovey give a quote for the article though stating the current state of play at the time?


Tovey confirmed to Reuters that he had made a decision to withdraw the review temporarily, saying this would give the authors time to respond to several points in a complaint which “we felt ... raised issues we needed to address”.

“This not about patient pressure,” he added in a telephone interview. “This was a decision we reached with difficulty because we know the incredibly challenging environment this review sits in.”

In their Oct. 15 email, addressed to Larun, Churchill and Tovey wrote: “We are ... temporarily withdrawing your review to allow you and your co-authors time to adequately address the feedback received. Consequently, your review will shortly be removed from the Cochrane Library.”

 

Most probably my speculaions are wrong. But I find the article rather unclear and contradictory:

The journalist also states:

but to me it seems not necessarly backed by Tovey's quotes that this is the accurate wording. Perhaps it was meant to say "Tovey confirmed to Reuters that he had made a decision that the review should be temporarily withdrawn...." -- if the withdrawal had already been decided by those in charge of deciding, why had he needed to ask the authors to agree? And why it is "he" (alone?) who had made the decision?

I find the following quotes equally constradictory:

The second sentence is indeed saying that the review "will shortly be removed". So, most probably my speculations are wrong. Would be interesting to have the complete quote of the preceding sentence though, because the next quote to me seems again to not necessarily state that the temporary withdrawal was imposed yet:

Also, the next mention of Tovey's "confirmation" (but no quote) to Reuters appears to me to have smuggled the notion of "patient pressure" in Tovey's mouth - did Tovey really say "patients and campaigners", when he confirmed another decision -- to move ME work out of the mental disorders section?

I'm aware that my thoughts are highly speculative, though. Still the article is unclear and contradictory (in addition to the contradictions already pointed out by others and addressed by @rvallee 's planned letter to Reuters ).

(Edited for clarity and raising concern about my own speculations -- also edited my previous post quoted by @large donner )

 

Another point which IMO displays the Reuters article's spin:

Correct me if my understanding of English grammar is insufficient: I read this as if "activists" already were informed about the planned withdrawal before or at the time when the Reuters piece went online? But who did actually know about the planned withdrawal other than Cochrane, Larun and her friends at this stage?

Edit after re-reading: Or is Larun Kate Kelland (the Reuters journalist) suggesting to her readers that the planned withdrawal is being intrepreted by Larun and her friends as a "victory" for "activists" (on behalf of PwME) ergo as a "defeat" for themselves? Interesting wording regardless..

Could be interesting to track when diverse tweets were posted. Would be a bit complicated though to compare the time designations of the different time zones.

In any case, this one was posted on Oct 17th, 12:03 :

https://twitter.com/user/status/1052636273180139520


@rvallee (tagging you in case this might be relevant for your letter to Reuters)

 

There is nothing wrong with your English. That is a very good point. The decision could not have been seen as anything until it was announced, and the first that was known of a proposed announcement was that article in which the comment appears.

Someone has been feeding journalists porkies.

 

Not the first time I've heard this one. Judges are trained to be impartial. If it goes anything like the request for the PACE data to be released, it will be very embarrassing for the scientists in question.

 

You are aware that the judge who sentenced anti fracking protestors had interests in oil and gas ? Things are not always as we would wish them to be

 

Welllll sure. A court case not in our favor could be disastrous. But even something like that could bring the disease to light for more people, and get more patient input into the public record.

 

I agree with @Amw66 that we should be careful with using the legal system right now because it could bite us in the arse
That said as i argued in another thread recently if we had a treatment or disease mechanism it would benefit our case immensely
https://www.s4me.info/threads/redress-for-financial-and-social-harms.6373/#post-115410

All that said we should look at timing, if we need to wait 15-20 years to get one of these then perhaps we should proceed earlier despite the higher risk because a decision in our favour could get us more money for research bringing that 15-20 years far closer.

 

I may be repeating something already noted elsewhere, but why would you "temporarily withdraw" something in order to allow the authors time to "adequately address the feedback received?" Why not say, "You've got X days to answer our questions or we're withdrawing your review"? It reads to me more like "You've got one last chance, and, to focus your attention on responding by the deadline, we're withdrawing it until then."

It also seems like a way of tilting the playing field by saying, "Now the onus is on you. We no longer have to worry about withdrawing it. You have to worry about getting it reinstated."

By getting to Cochrane to postpone the withdrawal, it may be that all that the review's supporters have done is to ensure that Cochrane will have make a public show of it if the "feedback" they provided to the review's authors is not "adequately addressed." If nothing else, Cochrane might feel the need to do this as a warning to "outsiders" who might be considering involving the press rather than by handling these unpleasant matters like "gentlemen."

 

I am not totally convinced that there has actually been any change of tack at Cochrane. There is something very strange about the ellipsis (...) in that quote. I have seen the sentence without the ellipsis too but there must have been something in that space that subtly changed the meaning I think.

I find it difficult to see how Cochrane are going to defend the review if it is modified in a way that does not completely reverse the conclusion. They will look completely ridiculous. Everyone knows what the complaint said and so if a change is being required it must be a change that in some way satisfactorily addresses the complaint.

I don't think the fat lady has sung yet.

 

It's likely a calculation for when this blows out. It will be massively embarrassing when they have to defend having triple-checked this and seriously failed to see anything wrong with it and how they could seriously keep it in the common mental disorders group when it has nothing to do with it in the first place. And look at this huge public record of thousands upon thousands of patients testifying that, yes, it is harmful and worthless research.

Question is whether those making the decision will still be there when it happens. How confident are they that nothing will come out of ME research in the next few years? I'm curious if this is leading some of them to look into it to get an idea of how far a breakthrough is. Because it should clue them in that this will happen. Not if, it's when.

And this will be a huge egg on Cochrane's face. Reputation severely damaged, possibly beyond repair if they cave to political pressure when egregious scientific fraud was exposed. I hope they get that.

 

Same!