Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

I think the main problem is that this flaw - a focus on subjective outcomes in unblinded trials with inadequate controls - is so widespread. If it was just a thing of ME/CFS researchers, then we would have a good chance of being heard. But this is all over the place. Accepting it as a major flaw would embarrass so many researchers and clinicians. And it would make psychological interventions much harder to study.

 

Like a lot of things, it would take a major disaster to force an enquiry for it all to come to light.
This is unlikely to happen, particularly as there is no official means of reporting/registering of harms of any non-drug therapies.

 

I expected the worst possible outcome because the issue is far bigger than ME/CFS, it's all psychosocial trials. The whole thing would need to be torn down and there is no way that the establishment is going to do willingly do that to itself. It would expose the entire rotten edifice of psychosocial interventions. I've suspected for many years that CBT doesn't work for anything except simple phobia and even at that the C part is of no use.

 

No, you have to be a fucking big bullshitter to be able to achieve that.

 

Absolutely. We are asking turkeys to vote for Christmas. I was a Cochrane turkey once, but have no loyalty to my turkey ex-colleagues who insist on clinging to the wreckage of the great idea gone wrong that the Cochrane Collaboration has become, and the harm they have done. Their reviews are unwieldy, unusable and, as you say, mainly useless. Cochrane reviews on topics of importance to patients (eg. the treatment of people with ME) could be used as effective campaign documents to help drive up standards in future primary research. They could have been the organisation to champion the cause of patients by pointing out the poor quality and blatant COI in trials such as PACE which is misleading policy makers and doctors, and has harmed so many patients. But instead Cochrane tolerate the COI of their review authors, arguing they are better than other journals as if that makes the COI OK. They also completely ignore COI and poor methodology (eg. relying on subjective outcomes in non-blinded studies) in the studies included in their reviews.

 

https://twitter.com/user/status/1141371452723216384


... and welcome to the forum @Caroline Struthers Good to see you here!

 

Uh. I wonder if that accounts for the dismal wikipedia articles. Likely at least in part. It's hard to explain why there are such strong opinions about a topic most people don't care about at all.

 

That seems to be the logical course. An accurate review would be rejected but it would at least force them to explain the thinking that they mostly leave to implication. I'm not even sure how to even have the green light since the current mental disorders group is obviously the wrong place but the right group (I think it's the complex chronic diseases?) would simply reject the proposal outright. Maybe it can be done regardless. After all it's supposed to be a "collaboration" project.

Only problem is, as always: who can do it? It's a pretty big effort for something that is guaranteed to be rejected. I still think it's worth spending the funds for, it would certainly strengthen the case for future lawsuits, but can't really think of who could do it knowing this.

 

This is what I expect and frankly it opens up serious questions about why this took over a year to get around.

If all they're doing, and it is very likely, is tweak around the edges, what explains the fact that it took so long? My guess is they just don't care much, the outcome was predetermined, but it nonetheless makes them look bad. If you send someone with the task of highlighting a few words on a handful of pages and they take 2 weeks to get back to you, you really have to question their work process.

 

Sounds good. It's a sacrifice I'm willing to make.

It's pretty amazing how there is widespread acknowledgement of the crisis of replicability alongside a complete refusal to do anything about it, even when given the opportunity to make incremental changes. Remarkable. The lack of oversight here is just a massive embarrassment, there is simply no accountability.

 

Someone may have just thought they had to bag up a little doggie poop in a bag and dispose of it until it went further and further upstairs and they realised they were living in a sewer.

Now they think they can stop the immense stink by not letting people into the house and just closing the door.

 

Who are 'they'?

The Cochrane central editors, or the norwegian-based review team?

I don't think we can make any assumptions about what the new Cochrane editor's take on this is yet, even if I don't have my hopes up for a good outcome...

I strongly suspect that what is happening behind the sceenes up until now, is the Norwegian Institute of public Health leaning in with all their weight in keeping up as much as possible of status quo.

(Sorry about that )

We have seen some of the correspondants between Larun and Tovey about edits, it seemed to be a tug war over even the littlest adjustments in wording.

We know Brurbergs thoughts on ME from the Mental Elf. (Suspect Larun and Flottorp was involved in writing it?) And that unprofessional paper on diagnistic criteria, by Larun, Brurberg, Flottorp. Also there's been an norwegian article (in a ladies magazine, paper only) with Larun explaining the benefits of exercise for ME patients. They really believe this stuff.

We know Flottorp (the boss of Larun, Brurberg?) have re-tweeted several Live Landmark and Recovery Norge posts on twitter. Including that terrible norwegian 4-day treatment study. :-/

And we know even the administration is probably involved, as the acting CEO, Ottesen, made a public statement in Forskning.no when there was news about Cochrane wanting to pull the review. This is from november 2018:

https://translate.google.no/translate?sl=no&tl=en&u=https://forskning.no/me/vil-trekke-tilbake-me--forskning-etter-kritikk/1256374

 

Addition - the one little thing that gives me a tiny bit of hope, is the mere fact that this process actually have taken this long.

The chief editor have obviously not just given in to the review team/Norwegian institute of public health (again - sorry about that ). If so, the review would have been updated already (even though he did back-track on pulling it, as he should have done...... )

But I'm super-nervouse, whatever the update will be, it will get public attention in Norway, and have impact, one way or the other...

 

Of there was a bit of a stand-off, and then they gave in to Larun.

 

I think you are adding a lot of useful background information for the forum. Thank you.

Maybe the fact that the science director at the Norwegian Institute of Public Health has co authored this article in The Journal of the Norwegian Medical Association with (amongst other) a Lightning Process coach might be of interest as well.
Chronic fatigue syndrome and experience with the Lightning Process (2016)

 

I don't quite understand this. I would suspect that it's obvious that the Lightning Process is bogus and that anyone involved discredits him/herself.

Is there a skeptic community (not involved with ME/CFS) you can speak to about this? You could say that patients are being misled with this bogus, secretive and expensive treatment and that the science director at the Norwegian Institute of Public Health is contributing to this by coauthoring articles about it or Flottorp by retweeting recovery stories of LP. Is that an option?

 

Yes there is a sceptic community, and ME patients have tried to alert them numerous times, but they don't seem interested. I believe it's unfathomable for them that the leader for the National Competence Service of ME/CFS, researchers as Wyller et al, politicians, institutions as The Norwegian Institute of Public Health etc are so enthusiastic of Lightning Process if there's not anything to it.

Phil Parker is easy to spot as a charlatan, the coaches over here are better at presenting themselves in a more serious way and on top of that we are quite gullible in general here. Alternative treatments are very popular and the skeptic community seems more interested in making fun of animal interpreters and such than helping protecting patients against undocumented treatments, doing something that matters.

Also, they have their own gurus, as prof. Kristian Gundersen, a biologist who defends the PACE trial and criticise ME patients for trying to have a say in academic debates. It's a mess, and requires that someone actually takes the time and effort required to get an overview, and nobody seems to be willing to do that amount of work.

 

One of the points I made in my testimony to NICE is that in this area there seems to be no dividing line between the apparently respectable and the obviously bogus. Nobody is interested in thinking about that in this 'liaison psychiatry' community.

It seems that pointing out that things are wrong has no traction any more in public discourse - whether politics or medicine.