30th Nov: Cochrane 'have not approved publication of the [Larun] re‐submission' - but old version not withdrawn either.

MP Sir Edward Davey brought up this point in the June Westminster Hall Debate, not specifically focussed on Cochrane, more on Nice.

 

Where actually is the note?

Interesting to see they do openly credit Robert Courtney.

Basically the authors failed dismally, Cochrane now know they cannot get away with a whitewash, and this is their version of "the withdrawal method" .

It's sh*t.

Nice ambition.

Interesting ambiguity. Talking to work out how to do it ... but if they cannot work out how to do it?

 

It's a bit messy as Cochrane don't pay people to do such reviews generally as far as I know, people volunteer.

Though perhaps there are precedents.

 

Contrast with the HPV review could not be more stark.

 

Do they mean the one submitted was old and out of date?!?!

Also, are we mounting tweeter pressure?

 

Also, I wonder if that means that they feel less able to withdraw Larun's review against her wishes? If they're seen as doing something that will damage the reputation of someone who volunteered to do a review for them (and had their review approved for publication) that could be seen as threatening the Cochrane business model?

 

I don't know what's going on there. Their CBT CFS review is from 2008, so that's much older.

 

I think its likely she did the review for herself and others in order to give prominence and legitimacy to the current bogus treatments rather than her motive being to volunteer to do it for Cochrane as an act of decency.

Even if she just volunteered then failed to see the issues with the current treatments then she doesn't deserve a respected reputation. Also it seems she is still sticking her fingers in her ears..... and going la la la, pretending not to understand the critiques.

Her and others stand to benefit continuously from the BPS model and the part they are playing in the MUS, PPS Functional nonsense that is just junk science.

There must be some within Cochrane who now are seeing how they have been mugged off and must therefore be also thinking about their reputation in that sense if the truth of the PACE debacle comes out with the back story of the BPS crowd and the NICE review issues etc.

 

I didn't take that to necessarily mean that Larun would get another chance. It could mean they want to give her a gracious way to withdraw and to agree collegially that it should be removed from Common Mental Disorders section.

I definitely think this is a significant step--certainly I didn't expect it. It indicates that Tovey is not just rolling over under the pressure, as it seemed he was. He has obviously been under enormous pressure to keep the review up, so I wouldn't take this rejection of the revision lightly. Also it's significant that he noted that it was out of date--that could certainly suggest that he recognizes the PACE reanalyses need to be in there. I can't think of other significant papers that would apply, other than those.

 

I just wrote this above but to respond directly--I took this to mean that the exercise review overall needs to be updated--and I interpreted that to mean that he recognizes that the PACE reanalysis needs to be part of the review.

 

I read somewhere that Cochrane have a policy that they only withdraw Reviews with the agreement of the authors.

Some what belatedly they seem to have been in discussion with Larun about Bob's complaint, though given Caroline Struthers' post and others, we know his were not the only complaints. Larun seems to have attempted to preempt this discussion by going public with the false narrative of the horrible bullying patient advocates forcing Cochrane to withdraw this Review on ideological grounds via the Reuter's article. The Review has not been withdrawn and remains online.

Cochrane then stated that the case was being considered on the merits of scientific evidence alone and that Larun et al were preparing a resubmission taking the complaint into account. This statement was in the 'Notes' in the information attached to the actual review article. My personal feeling was in the time scale announced, they were either preparing a whitewash or were giving Larun et al enough rope to hang themselves, the latter now appears to be the case. Cochrane said they expected the resubmission to have gone through their editorial process by the end of November.

In undertaking this process it appears that Cochrane are implicitly accepting there are some valid grounds to the complaints, and by agreeing to do a resubmission Larun et al, all be it reluctantly, have also tacitly accepted the current Review is in need of correction.

At the same time Cochrane announced in a reply to a comment on the Review, that they were considering if it was appropriate for ME/CFS reviews to continue to be housed within a Mental Illness Group and would make a decision on this by the end of this year. So it seems that they also responded to this aspect of the complaints, but were attempting to keep a low profile on the whole issue. This is perhaps not surprising given the very public disputes about other issues that currently bedevil the Cochrane Board.

At very last minute, at the end of the working day on the last day of November Cochrane have made two announcements. (So they stuck by their given timetable, and did not make use of the ambiguity in their previous statement.) Firstly that they are looking again at their conflict of interests policies, which seems directly relevant to the complaints on this specific issue. Given they appear to be genuinely attempting to address the problems with the Exercise Review, I now have some hope that this may be a genuine exercise. And another Note, again in the Information attached to the current Review, that we are discussing in this thread, namely that Larun et al's resubmission was inadequate and that discussions were taking place with the Editorial Team and the authors about a 'full update'.

This again would seem to indicate that they acknowledge current Review is in some way flawed, consequently this begs the question, why does it remain online? Presumably Cochrane are struggling with how to move forward given Larun's inferred intransigence. I suspect they are currently working out how to politely deal with authors who do not or choose not to understand the problems with their work. It will be interesting to see what Larun et al try to do next, given their leak to Reuters was obviously premature, and contained the false information that the review had already been withdrawn. Will even the Reuters journalist be willing to jump on command a second time?

Is the best way forward to allow Cochrane to continue discussing things politely behind closed doors, to wait in the hope that things resolve satisfactorily and that an unsatisfactory compromise is not the result? Or do we actively respond to these announcements? I feel the timing is important given the stage we are at with NICE, and that we should be pushing for the current Review to be taken off line as soon as possible.

What is our preferred outcome? Personally I would like both the GET and the CBT Reviews to be withdrawn, with a clear statement that there is no adequately evidenced treatment at present for ME/CFS and agreement that any future reviews relating to this condition not be housed in a Mental Health Group.

Is it appropriate at present that a new Exercise Review is published? My personal thoughts are that it is not, as all it can say is that there is currently no reliable scientific evidence supporting the use of exercise in ME/CFS and there is a very strong suggestion that it can be harmful for some/many patients at all levels of disability, including mild symptoms. What do others want to see?

 

Withdrawing this review against Larun's wishes ought to encourage other reviewers to at least stick to Cochrane's guidelines rather than pleasing themselves. Larun and co didn't do that.

It's a pity someone else doesn't submit an alternative review, basically saying this

It would have the advantage of spelling out just how badly inadequate the research used to promote exercise therapy is. I think that would be helpful. (Jonathan Edwards suggested the idea that a group could write one a while back)

 

How fortunate we are that Reuters has a journalist on the case ready to report on every tortuous twist of this saga.

They would surely not wish to earn a reputation for being available for spinning and to be spun.

 

Good to see Cochrane has not accepted the re-submission. Interesting timing of announcement. When governments want to slide something by the media, they pick late on Friday afternoons to do make the announcement.

I agree - withdraw it. How is this on-hold situation going to play in the clinical world? Practitioners seeing this notice, if they look, will probably give the whole mess the benefit of the doubt, and carry on as usual recommending GET for pwME. Good stalling tactic to give these authors another chance. It's still "eminence-based medicine".

 

Did Mark Vink send his reanalysis to Cochrane, or is this another paper that makes their review out of date?

 

GETSET is one

 

There is the concern that although debunked, the concepts of GET/CBT, and ME being a psychogenic condition will hang on for many years.

Mainstream biomedical medicine, which is what counts in this case, will hopefully come to view ME as a serious organic disease, however, those on the fringes may not. There may always be some brand of practitioner who tries to treat pwME with GET and CBT.

By gradually easing away from this erroneous GET review, rather than firmly declaring it's out, Cochrane is doing the BPSers a big favour, and this damaging theory, like others may fade, but will not die:

Munchhausens' by Proxy(MbP) has been debunked, and yet we still see this noted in popular media, (and maybe in health care?):

https://www.autism.com/understanding_byproxy

Interesting, that work on MbP has more than one definition following its evolution from 1977. As well, many officials outside the mental health care field seem to feel qualified to "diagnose" MbP.


Speaking of mainstream medicine; I recently encountered a well qualified mainstream health care worker who seemed to think having 5 or 6 allergies is an imaginary condition. I recall a thread where someone said allergies used to be considered psychosomatic; it seems they still are by some with authority.

 

good point.

 

I would like to think that Cochrane may be learning from this experience, that standard responses tend to be rooted in emotive dogma rather than sound science. With a bit of luck they will be as p*ssed off with being treated like that as PwME are, and maybe gained some insight from it. The fact Cochrane have not just rolled over maybe suggests they can see they are at a tipping point: integrity and respected upholders of good science one way, or follow down the same dark alley as PACE etc the other way. Let's hope they hang in there for the former - I suspect there is no shortage of murky coercion going on in the background to try and persuade them otherwise.