Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

@Caroline Struthers provided a good example here* and yes it's to be expected ---

*https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-80#post-390317

Yes, you need to design out the bias, whether that's through ethics committees or whatever.

 

Yes. Ethics committees are not trained in this currently, especially not lay members. I am not sure if University research Ethics boards even have lay members. If there were public stakeholder consultation on submissions to ethics committees, in the same way as NICE do for guidelines, that might be a great way to weed out bias and shed light on poor study design before the study even starts. I think the NICE process with the technical review work done by different and independent people from the decision-making committee is very good. If any committee (or systematic review team) making judgement about existing evidence or the methods of generating future evidence (ethics committee) are selected transparently to be balanced too (unlike Cochrane review teams), all the better. An anti-corruption unit could be set up to rove about stamping out the inevitable attempts to subvert the system. Again, getting carried away into Line of Duty fantasy world.

 

Yes, there is a serious lack of independent oversight. The establishment overseers are highly partisan, and lack the integrity and bottle needed to rise above it, and thereby be independent. And on top of that, they exploit their powerful positions to further their conflicted interests.

Things seriously need to change.

 

Why would ethics committees be responsible for oversight to ensure good, unbiased trial methodology? Although trial methodology and trial ethics will obviously have common touch points, they are nonetheless quite distinct surely, and need separate oversight?

Does it not need a distinctly separate and differently qualified body to oversee the correct design, and ongoing execution, of a trial? Presumably the main remit of an ethics committee is to ensure the trial protocol meets the necessary ethical requirements. And then subsequent trial oversight, but a different independent body, to ensure the trial meets, and continues to meet, the requirements of its own approved protocol, as well as all standard trial methodological requirements.

 

I think it is closer that that. Adequate trial design is primarily an ethical issue. If there weren't people involved scientists could be allowed to do things as badly as they fancied. The problem with poor methodology is the impact of people's lives - which is an ethical issue.

I used to be on an ethics committee and we considered this very much our remit. Trials that were not going to give useful answers were not ethical if they exposed patients to any procedures that might have risk. We had lay members too, although they tended not to have knowledge of methodology.

Unfortunately, there will always be academic institutions where ethical committees are not too tight on their requirements. The same sort of chums network will operate as it does on the journals.

Inevitably quality control is going to need to be at every step.

 

Absolutely great idea. Lots of these standards already exist, but they are not mandatory, and so not policed. Even if some are mandatory, they are still not policed effectively. Keeping patients and the public informed is also very low on the list of priorities despite the fact it's them that pay for it with taxes and by taking part in trials. There are endless studies of just how low the rate of following even basic standards is, but nothing very practical on how to make things better. There are also endless piecemeal efforts to improve bits and pieces of the research process jigsaw, but nothing which threatens to disrupt the status quo yet. Also the initiatives are usually focused on drug trials, as if trials or observational research aimed at developing other types of healthcare interventions don't need to achieve these standards.

 

I'm laughing - thank you.

 

Interesting - I didn't even know it existed.

Anything that's publicly funded should meet minimum standards yet as @Hutan @Caroline Struthers and others have highlighted, it seems they don't meet even the most basic standards - it seems that all of the ME/CFS research on CBT and/or exercise fails the test @Jonathan Edwards describes "not going to give useful answers". OK PACE may have passed that test if the study followed the proposed methodology.

 

I think the problem there is, useful to whom!

Perhaps one of the helpful pressures might be patient involvement in setting standards for trials. If that became sufficiently attractive to funding bodies and high profile institutions to which researchers might look for future employment, it would at least add another layer of difficulty to getting away with crap research.

Science also needs to get better at allowing research to produce nothing much but publish the data anyway. You commission scripts on the basis that some won't great—and that's fine, because otherwise playwrights would just keep rewriting The Importance of Being Ernest for the rest of eternity—so why not research?

 

Didn't Live Landmark complain that there were too many patients on the NICE committee!!

 

Yeah an article a few days ago. Not just that, but many other people were related to people with ME or generally involved in the issue but are not BPS ideologues, because apparently even that should disqualify. Not a caste system or anything like that, though. It's just the mere thought of anyone affected by this being involved that gets people irrationally angry, which is totally normal and respectful of the principles medicine is built on. You know, patient-centered medicine, the proper way, one that excludes anyone who doesn't fit the dogma.

This more than anything shows how this is 99% a political issue. Even with all the pains NICE went through to provide balance, fanatics still cry out for bias against them while demanding exclusive bias in their favor. Just like in politics.

 

Yes. this is why I used to be so devoted to Cochrane. As an information specialist, I could see the potential of widening the scope of information which Cochrane could capture about all the trials in its CENTRAL database of controlled trials - things like non-reporting, selective reporting, poor trial designs (eg. PACE) and conflicts of interest. And also the potential to get citizen scientists/investigators involved in mapping it all. Like they have done so successfully with Zooniverse projects. https://www.zooniverse.org/. Unfortunately Cochrane are so inward focused, they have to do everything Cochrane's own way, so instead, they have created Cochrane crowd https://crowd.cochrane.org/, geared towards meeting the needs of people writing reviews by recruiting volunteers to do the tedious work of screening studies. All very fluffy and fun (if you like that kind of thing), but ultimately self-serving.

When I worked at Cochrane CENTRAL was a bit crap as it contained animal studies, which it shouldn't do, plus other non-trial records. All of these non-trials are supposed to be screened out either automatically or by information specialists and/or cochrane crowd volunteers. I just did a search on Larun as author to see if she had done any trials, and there are two studies listed in the CENTRAL register of trials, which are both in fact reviews. One is a rip off of the Cochrane Exercise review. So CENTRAL is still a bit crap then :-/ And not open access, even though they now use volunteers to update and maintain it. Unethical.

 

I know nothing much about Cochrane and how it works. I have no useful contribution or insights to make. But I am in a particular frame of mind presently so . . .

. . . from understanding of some of the problems thanks to the Larun review I think I'll just have fries with my reading and call it McCochrane. As it seems to me that this is what they're aiming for.

[back to more serious commentary]