Cochrane ME/CFS GET review temporarily withdrawn

Esther12 said:
IMO: The most likely outcome is that in a month or twos time we're going to have a load more publicity about how rigorous research by the respect Cochrane Collaboration shows how unreasonable patient critics of GET were.
Click to expand...

As i said several pages ago this outcome was my fear from the beginning, & although i now see it as unlikely to have been Tovey's original intention, the outcome is the same.
What a devastating master stroke :cry:
 
Stewart said:
But then a tiny part of me wonders if Larun and co haven't overstepped the line by 'going public' in the way they did. Cochrane tried to resolve the issues quietly, in a manner that was respectful to the authors. For their pains they found themselves unfairly smeared in a Reuters hatchet job. If I was in Tovey's shoes right now I'd be thinking "Right. I'll be reasonable - and more importantly, I'll be seen to be reasonable - by allowing you to address the criticisms without the need to withdraw the review. But if you can't address all the outstanding issues to our satisfaction I no longer have any reason to cut you any further slack".
Click to expand...

They already had good justifications for withdrawal. Larun choosing to behave badly again may have helped put political pressure on Cochrane, but it provided no real reason to not withdraw the review. Cochrane had already been too 'reasonable' to Larun, and thus unreasonable to those who are harmed by misleading claims in Cochrane reviews. I see this as just being Cochrane backing down to pressure from those supporting Larun/PACE, and not as a part of any sort of tactic for preventing people being misled about the efficacy of GET by eventually withdrawing Larun's review.

Stewart said:
Additionally the joint letter that @dave30th published on Virology shows Tovey that there's a growing number of scientists, researchers and academics who strongly feel that Cochrane can't allow the GET review to stand. He must realise that he and Cochrane are going to come in for some intense criticism if he doesn't take this opportunity to withdraw it. I haven't seen much in the way of a public outcry from the scientific community following the Reuters article (although obviously there's no way of knowing what sorts of pressure - if any - have been applied behind the scenes). But given the apparently muted response so far it could be that Tovey concludes that the SMC's bark is worse than its bite, and that withdrawing the review is by far the easier course of action.
Click to expand...

It wouldn't surprise me if there were a lot of powerful people working against us behind the scenes. They wouldn't want to do it in the open because they don't have the arguments for debate, and I think that there's now an awareness that PACE, etc could still go badly and make all those involved look pretty terrible. I think that Cochrane are going to feel far more pressure to protect PACE/Larun than produce a good quality GET review. There are a lot of people who want to maintain low standards for researchers.
 
Last edited:
NelliePledge said:
It was inevitable they wouldn’t let it go down without a fight.
Click to expand...
Yes, anybody who thought otherwise really hasn't been paying attention.

large donner said:
It totally depends how big the hitters are that get pulled in for the BPS crowd, that we already know has suited government policy. Also how many favours they think they can chuck Cochranes way. What kind of deals they can do. We don't even know that stuff wont go on behind the scenes involving non disclose agreements etc or even "here is an offer you cant refuse".

The BPS crowd now have NOTHING to lose and will have no choice now but to consider the worst possible tricks available to people who have been propped up by enormous Insurance companies and government department stupidity incompetence and or negligence and not also excluding potentially deliberate obfuscation.

Its naive to think the revolving door of government and the influential establishment doesn't affect outcomes.
Click to expand...
This.
 
Esther12 said:
It wouldn't surprise me if there were a lot of powerful people working against us behind the scenes. They wouldn't want to do it in the open because they don't have the arguments for debate, and I think that there's now an awareness that PACE, etc could still go badly and make all those involved look pretty terrible. I think that Cochrane are going to feel far more pressure to protect PACE/Larun than produce a good quality GET review. There are a lot of people who want to maintain low standards for researchers.
Click to expand...

I think it depends on whether Cochrane take a short or long term view. In the short term they can cover up and brush the issues under the carpet which is what they have done up until now. But they can't do this forever. Pushing the issues out into the open is interesting because they cannot deny they didn't know about them. So I think if they fail to act their brand will be damaged in the long term.

Letting Larun redo the review seems like a bad idea - she has already proved herself not competent and willing to change the reporting from the protocol to get the result she believes in. So giving her another chance to perhaps be more subtle this time is not a good idea from the Cochrane perspective. They should know we will look in detail at what they produce.

I think one of the real issues may be that there is so much bad research out there that if PACE collapses it could take a whole raft of other literature with it and the backing for a billion dollar industry of CBT (and supporting mental health initiatives from the governments). Also there are influential figures like Wessely who we know lobby behind the scenes.

It makes me wonder if we should look at other reviews, has Larun done any others? Are they of equal poor quality. What about other research in the area that uses similar methodology. Or people like Sharp moving on should we look at his new output.
 
Adrian said:
I think one of the real issues may be that there is so much bad research out there that if PACE collapses it could take a whole raft of other literature with it and the backing for a billion dollar industry of CBT (and supporting mental health initiatives from the governments). Also there are influential figures like Wessely who we know lobby behind the scenes.
Click to expand...

Agree, until I read of the major, major issues with so much of psychological/psychiatric research, as explained by Brian Hughes, I hadn't appreciated the huge extent of the problems, that being the case there are even more people, more vested interests, desperate to stop the sinking of PACE. If PACE sinks it would focus attention and publicity not only on the rest of ME CBT/GET research but on a huge raft of psych research, lots of reputations, lots of institutions could come under scrutiny. It's major.
 
Sean said:
This fight goes way past PACE and this little corner of medicine. Wessely & co want to impose this on the whole world, and they have never shown any sign of slowing down or backing off their claim demand. Quite the contrary.
Click to expand...

Indeed. They want to establish a new kind of medicine where every illness is biopsychosocial and psychiatrists treat the psychosocial aspects. "Psychosocial" can mean whatever they want, therefore treating psychosocial aspects means doing whatever they wish. Evidence that such an approach is useful will obviously come in the form of PACE-like studies.

This powergrab will be detrimental to patients just like CBT/GET/PACE was detrimental to patients and only served establishment and guild interests.
 
Just wanted to add a more optimistic interpretation of events: maybe the Cochrane editors have pretty much decided that the Larun et al. review must go. But in making this rather controversial decision, they wanted to give the impression that Larun et al. were given all possibilities to correct their mistakes... (I know, a lot of wishful thinking, here)

Jonathan Edwards said:
The alternative of course is to write another review and get it published within the time frame.
Click to expand...
Do you mean a full review of the effectiveness of GET in ME/CFS as an alternative to Cochrane? That would be pretty awesome, but I would still very much like Cochrane to state that there is no evidence for GET's effectiveness in ME/CFS. An alternative review will allmost certainly have less authority and influence than Cochrane...
 
Last edited:
Just saw this prominently placed on Cochrane's website. Is this new?

adblock-crowd.jpg


You can make a difference!
Become a Cochrane citizen scientist. Anyone can join our collaborative volunteer effort to help categorise and summarise healthcare evidence so that we can make better healthcare decisions.
Click to expand...

Just 60 seconds a day can make a difference
In the last 20 years research output has grown exponentially making it really difficult to keep up with the evidence. As a Cochrane citizen scientist you would be helping us to identify and describe the research that may be very important in helping us to determine whether a treatment works, or whether a diagnostic test is accurate.

No previous experience required, you can start now or read some frequently asked questions or watch our two minute video.

What do I need to do exactly?
1
Try it out!
No previous experience necessary. We’ll walk you through all that you need to know.

2
Categorise research at the click of a button
Every click makes it faster and easier for us to find research that helps answer vitally important questions about the effects of a treatment.

3
Have a cup of tea and relax
Work at your own pace, whenever you want. Just a few minutes a day makes a huge difference. Without this work we cannot accurately answer the questions about effectiveness of new treatments.
Click to expand...

Just a few minutes a day makes a huge difference. Without this work we cannot accurately answer the questions about effectiveness of new treatments.
Click to expand...

http://crowd.cochrane.org/index.html
 
Last edited:
How on earth do you do another review when the original papers haven't collected any useful objective data? Any review of these studies is flawed because the studies themselves are flawed.

ETA: Cochrane reviews necessarily have to rely on the outcome measures that were chosen by the original studies. The whole point of Bob's criticism was that they didn't do this, and yet my main criticism would be that it even tried to combine studies that used such unhelpful subjective measures. There is nowhere to go on this. We can't criticise them for not using the pre-specified measures, and then critcise them for using the pre-specified measures that they did use (if that makes any sense!).
 
Last edited:
Lucibee said:
How on earth do you do another review when the original papers haven't collected any useful objective data? Any review of these studies is flawed because the studies themselves are flawed.
Click to expand...

Couldn't this be the review's gist then: To display the poor evidence?

Edit:

Adrian said:
It makes me wonder if we should look at other reviews, has Larun done any others? Are they of equal poor quality. What about other research in the area that uses similar methodology. Or people like Sharp moving on should we look at his new output.
Click to expand...

Perhaps combining @Jonathan Edwards ' and @Adrian 's suggestions and write a new review with references to other reviews that show poor evidence on exercise treatments? (e.g. MS related fatigue, cancer related fatigue, rheumatoid arthritis related fatigue.)
 
Last edited:
We could really use some friendly media coverage
Adrian said:
That makes a review quicker as there is no data to review? Some have objective data though such as PACE has the 6mwt.
Click to expand...
There are also the Dutch studies (Nijmegen group/Bleijenberg) referred to in the TMG minutes which found that actigraphy showed no improvement despite improvements in self-reported fatigue. (Good summary on @Lucibee’s blog: https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/). Not sure if that data is published or not.
 
Lucibee said:
Possibly, but you can only do that if they had collected anything objective that would show that up. If they didn't even collect data on patients' exercise targets and compliance during the trials, then we have nothing.
Click to expand...

But that is OK. I see no reason not to set up a review and conclude that there are no studies that produce data worth considering as reliable. The Chinese herbs one is a bit like that. And in a sense I have already done that. And haven't some Dutch people written a paper with this gist?

There is no need for the review to follow anybody else's special rules, either. As I see it the Cochrane review now has no authority. As for influence - who knows?
 
You must log in or register to reply here.
Back
Top