FOI request re PACE Cost-Effectiveness Analysis

I understand why someone might suggest this. However, this paper is useful in showing how ineffective the therapies were.

 

Many thanks to John.

I have a technical problem however: can't seem to open the attached document. My adobe is nonetheless up to date. Am I the only one with this problem?

 

Here it is in full.

 

If you save it first then it can be opened from disc. I had the same problem.

 

That data would still be available so it's hard to believe that withdrawal of the paper would be unhelpful. Citing their poor results and then pointing out that the paper was withdrawn due to their refusal to abide by the data sharing requirements they'd signed up to sounds okay to me.

 

I doubt reviews of the field would include retracted studies. The point of retracting studies is I presume to remove the findings from being used as a basis for anything.

So patients might refer to them in lay literature, but I think the standing of the findings would be lowered greatly and I think people would be reluctant to allow them be referred to in peer-reviewed publications.

 

That's a fair point, but the null results for employment kept being ignored anyway. If the paper was retracted due to the researchers refusal to follow data sharing requirements, I suspect that a thorough review would still be able to note the results and the reasons for withdrawal.

I was going to say that it would be odd to insist people just pretend these results from the largest CBT/GET trial did not exist, but then I remembered that this seems to be what has happened with the 2.5 year LTFU employment data that has still not been released.

IMO, regardless of any downside, retraction would be useful as a political signal that the PACE researchers could no longer get away with having their powerful friends bending the rules for them, and that we were moving towards a period of greater transparency and accountability.

 

The difficulty is that one wonders how thorough any reviews are.

 

On the one hand I agree with @Dolphin that retraction might lead to a useful paper being "lost" to further studies, but I also see that there is a point of principle here, and we cannot really be asking for retraction of other ME/CFS research due to ethical oversights, yet skipping ethical oversight where it suits us.

I think there is also the notion of precedent here. Given who the authors are, the likelihood of retraction is nigh on nil I would think, but if it were retracted then that would be a real precedent being set - a Sharpe paper being retracted! To that end I think the loss of publication of the paper would be hugely beneficially outweighed by the loss of Sharpe to the published paper, if you get my drift. I cannot imagine MS wanting to be pushed into that corner, so I fully support the notion of doing so, especially if it ended up with data being released.

 

Much of the bad science in the PACE Trial is common to non-blinded studies which aren’t going to disappear any time soon. Other PACE Trial papers have worse flaws e.g. normal range calculations in Lancet paper; ridiculous revised recovery criteria in recovery paper.

 

Don't know if this has been posted already or not.
This is from the MRC in Aug 2018:

"The MRC has recently started (with other research funders) a pilot of a new facility for academic researchers to share data via the Clinical Study Data Request (CSDR) web portal. We hope to include the PACE trial on the CSDR portal within the next 6-12 months. This will allow researchers to apply to the CSDR Independent Review Panel to gain access to the dataset for their own analyses."

https://mrc.ukri.org/news/browse/criticism-of-the-pace-trial/

 

And how independent will this Independent Review Panel be? Will they allow people like Tuller and Geraghty to get access? I really don't see them letting @dave30th have access - would be too embarrassing for certain people. Of course I hope I'm proved wrong. It will certainly be interesting to see what transpires!