Cochrane ME/CFS GET review temporarily withdrawn

What appears more bizarre to me is that Larun or her colleagues leaked the email that was the basis of the Reuter's report and at the same time re-submitted the review for re-consideration. Peer review should not take more than two to three weeks. A second round of peer review usually includes access to all first round reports and tends to be relatively quick to achieve.

 

Were they hoping that by leaking the news it would pressurise whoever was chosen to do the peer review, to accept it?

Any chance they might ask you to review?

 

My guess is they knew it would get into the press anyway, and wanted to get in first with their version, which they did.

 

Maybe a bit like the reanalysis the PACE team did when the Geraghty-Levin-Wilshire was about to be published. They published that pretty quickly even though they keep making claims that it would be too onerous to prepare the data because it's somehow archived and no one has ready access to it, despite their own trial meeting notes specifically stating that they will do so.

They're seemingly going through the motions knowing the judge and jury are bought. Question is how much transparency will the process have? Will it be a simple "we looked at it, this updated review satisfies us that all concerns have been addressed" and close the matter? Seems likely.

The Lancet would never have published a clinical trial with overlapping entry and recovery criteria. The fact that it was fast-tracked matters little since even with full hindsight and published criticism of the flaws they refuse to budge.

Overall it didn't matter because this was never about science or medicine. It's politics and austerity. Now they're trying to push this on other chronic diseases. We're just the sacrificial lambs to prove the process "works".

 

What I dont understand is how Cochrane seemingly didn't anticipate this much push-back from the BPS crowd when they started down this road of withdrawal. And then of course, upon receiving push-back, how they didn't think "whoa, this is the wrong way to do science", and double down on their commitment to withdraw. I'm trying to outgrow the cynicism of my youth, but this knid of stuff does not engender confidence in our institutions. Particularly those which have branded themselves as objective and impartial.

I realize i'm being captain obvious with this comment, but I still can't help but pause now and then, reevaluate, and once again be shocked by it all.

 

But remember - we don't know how the e-mail ended up in Reuters. We don't know if this media exposure was orchestred by Larun, someone on her team - or (more likley?) someone else...?

I suspect, someone on the team might have showed the e-mail to someone they have a working relationship with - someone in UK.....? That perhaps took it to the SMC/Reuters.

We don't know if Laurun or her team had any prior knowledge about this news piece before they were asked to comment on it, or not. But my guess is, there is someone else pulling the strings here.

 

Yes, I've wondered that too. I'm one of those people who believe our corridors of power are not above such whispered dirty dealings. Someone would only have to promise a knighthood to a highly ambitious, highly self-serving, highly influential, whispering-in-ears sort of figure, on the inside of the BSP cult, and the die would be cast. Funny that ...

 

I really don't see any other explanation. They have done that in the past, adding to the probability that this is what happened. They used the pull they have on the SMC to preempt it along with the media blitz from the Guardian podcast.

They cannot defend their research so the only thing they have is cronyism and political pressure. It worked well enough in the past to get their work published, even keeping the PLOS paper published despite violating their terms and conditions and having the Lancet defend the use of unblinded trials with self-reported outcome as having medical credibility.

Maybe not Larun but certainly the PACE team, likely including Wessely and Gerada abusing their authority once again.

 

The fact that the NICE guidelines were published in 2007 with no supporting evidence says it all. PACE was not a real clinical trial, it had a predetermined outcome to reinforce the evidence for the guidelines. The very best they should have achieved is complementary help to medical care.

That it was presented as rising to the level of clinical evidence superseding the biomedical evidence is absurd. It absolutely did not. PACE could not fail given this, the liabilities involved in publishing clinical guidelines without supporting evidence are staggering. That's why they went to absurd levels to hide everything they did. They know it's fraudulent and only political influence can shield them from accountability.

 

Is anyone aware of any condition that NICE has no guidelines for due the the fact there is no evidence for any treatment?

 

It's a genuinely bizarre argument to make. I think Sharpe said it in the Guardian podcast, that harmful treatment is better than no treatment. Of course he doesn't acknowledge the treatment is harmful but essentially defends the point that nonetheless no treatment would be somehow the worse outcome.

Nevermind the patients. The Clerks method to medical research: this job would be great if it wasn't for all those customerspatients.

 

That seems logical. If the patient is complying with the doctors treatment regime he is not suffering from Abnormal Illness Behaviour and must therefor be on his way to recovery.

 

I wasn't referring to any bizarre argument etc I was just asking out of interest. I wanted to know what happens in such a case as we are actually in the position where we need NICE to understand nothing is better than something when the something is based on fake evidence.

This seems to be a stumbling block to certain mindsets and ties into the inability for many current doctors to just say "I dont know".

 

The 'treatment' cannot fail, it can only be failed.

 

Could the leak have been intended to be a clarion call to all supporters of the BPS stuff to help with the defence?

 

By the way, ME/CFS advocates made one or more submissions to have NICE guidelines for ME/CFS around 2004. For example, a Welsh group put in an application. I always thought it wasn’t a good idea as NICE is partly a rationing body and it should have been clear it would recommend against lots of things and almost certainly recommend CBT and GET, thus enshrining them in the system. An example of it being necessary to be careful what you wish for/lobby for.

 

Can someone tell me Dr Larun's background is, is she a psychiatrist? Very experienced in clinical trials?

 

My understanding is that she was a physiotherapist. I doubt she had previous experience in designing trials.

She has no publications on trials as far as I can see before she starting doing systemic reviews in 2006. Her main interest appears to be the role of exercise therapy (in one case in relation to sickness absence from work).