Cochrane ME/CFS GET review temporarily withdrawn

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

 

I never read the recent full Dutch report. But my understanding was it only recommended against graded exercise therapy not CBT. Though as I recall it did make a statement that people shouldn't be forced to therapies.

 

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.

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.

 

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.

 

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.

 

The alternative of course is to write another review and get it published within the time frame. That would be hard work but perfectly feasible.

 

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)

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...

 

Just saw this prominently placed on Cochrane's website. Is this new?

http://crowd.cochrane.org/index.html

 

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!).

 

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

Edit:

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.)

 

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.

 

We could really use some friendly media coverage

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.

 

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?

 

Indeed - Mark Vink has done just that: http://journals.sagepub.com/doi/full/10.1177/2055102918805187

 

I wonder if it would even be possible to do a competing Cochrane review? I don't know if there's any kind of rule that only one group can do them.