Discussion in 'PsychoSocial ME/CFS News' started by Cheshire, Dec 3, 2018.
New post by @dave30th
@dave30th says in the Virology Blog post:
These questions in turn raise the issue do people/groups need to take any action at present, both in terms of supporting Cochrane for the action they have taken so far, reinforcing the need to move ME/CFS out of the mental health context into a more appropriate group, and in terms of pressure for the current exercise and CBT reviews to be withdrawn given Cochrane have implicitly accepted they are problematic/inadequate.
Sounds encouraging but the review should be retracted. The studies are all junk, there is nothing to review except how bad they are.
I can't disagree with this reasoning. Although I could see a review in which it was explained that all the studies have a high risk of bias and therefore the entire review, whatever the findings, has a high risk of bias. I mean, you'd have a review with null results, essentially.
Cochrane could do a good thing by publishing an article that points out all the problems with these studies. Cochrane would then at least contribute to setting higher standards, discouraging other researchers from following the same flawed recipe.
The whole thing is like a version of jenga. I think Cochrane are wondering just which stick to pull out .
Yes. An objective review would show that the evidence for efficacy and safety of exercise therapy for PwME is extremely poor. Reviews should not only be done to prove how wonderful an intervention might be; let's have some reviews that show it how it really is.
Not to Mention to do a service to a group they harm for so
Long by the standing of the bad one!! This is such a good comment! Please make sure to leave it also there please!!
Their failure to withdraw the review after Blakemore and others pressured them always looked weak. This new statement makes it even more inexplicable. One reason I thought they would let Larun get away with minor changes is that refusing to publish her work and releasing a statement like this would leave Cochrane looking ridiculous.
Is it a bit impressive that they're willing to look ridiculous rather than publish whatever Larun submitted? My standards may now be so low that 'ridiculous but not entirely corrupt' counts as impressive for UK medical research institutions.
The most useful thing Cochrane could do for patients is to remove their reviews and let us get on with trying to sort out the mess that has been imposed upon us.
That would be better than just withdrawing, yes. Have it on public record once more that those studies are a pile of crap.
And quite similar to PLOS One: yeah, we know they violated our terms and agreements but, nope, remains published.
So it's not just Cochrane. It's also Lancet. PACE is indefensible and Horton loves to yack about how much of published research is wrong and researchers sometimes get high off their own supply and it's also ruining millions of people's lives but, nope, remains published with the highest of thumbs up, recipient of awards for courage in research for courageously standing up on the neck of the sick and helpless. And BMJ with the absurdly unethical research they are allowing to be pushed on children, in addition to the pseudoscientific quackery of LP.
Big questions need to be asked about the political pressure and, possibly, threats made to those rocking the boat. We have seen over the years many medical professionals saying they have to keep shut about the topic or risk... something. It's not clear what, but there is definitely abuse of authority in pushing a political agenda.
The scientific argument has long been settled. So what is keeping the disbelief suspended? And how are authorities fine with this? Surely they understand that if it can be done this visibly and egregiously here, it can be done everywhere. This puts doubt into basically all research published in the UK, as it is clearly influenced by political agendas, to the point where an entire body of research can be suppressed in favor of delusions with barely any protest (and in fact loud protests when the delusion is challenged in the slightest).
It's very low quality research that cannot stand scrutiny. Cochrane know this, no doubt. It will inevitably be falsified and they will have to explain how they gave the triple thumbs up through an extra careful validation process to certify that this 100% subjective research was free of bias and conflict of interest and of the highest level of clinical certainty despite being 100% wrong.
That's very hard to justify and the window is closing to act before the damage to their reputation is fatal. Individual researchers may come and go, but organisations outlive them and have to live with reputational damage long after the fraudsters have abandoned ship. This seems to largely rest on who is political in charge, so possibly as long as Tories continue to push their modest proposal, this fiction will get political backing. But those organisations will outlive any political agenda. What comes after?
Didn't Sharpe mention on twitter a statue of a chicken in Trafalgar Sq?
I picture this statement rendered in stone. I think there's space now in TS.
This suggests to me that QMUL and others ought to start bearing some blame and having their reputations on the line rather than the researchers.
Might be a good tactic.
I think a number of authorities have been willing to look ridiculous rather than challenge PACE. There are obviously certain power structures in place that people don't want to challenge.
I think QMUL as an institution have acted very badly and that needs to reflect on the vice chancellor and the whole university council who failed to act. Bad researchers happen but institutions are responsible for maintaining governance. QMUL continue on their coverup and I think senior staff there should be fired due to the failures of governance. Same with the vice chancellor of Bristol who has failed to act when they are doing research without ethical approval.
It will be interesting to see if other institutions and journals change their stance if Cochrane do retract the whole thing.
@dave30th, what do you think needs to happen for Cochrane to actually retract the review?
my guess is really no better than anyone else's at this point. If the authors would agree to the withdrawal, that would obviously make it easier. perhaps that is part of the ongoing discussions mentioned in Cochrane's statement. we'll find out this month, it seems.
No doubt it would be easier if the authors would agree to the withdrawal but that shouldn't be necessary to remove a faulty review.
I'd like to know what the problem is (which would give us a better idea of the solution).
My guess is the problem is internal pressures from every which way--and little to do with persuading anyone at Cochrane at this point about the science.
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