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

Laughed when I read this:
"My bet is on inability of the review group to agree on a protocol." - Trish

Probably nailed it; the key thing is to think one step ahead - if we go down the logical coherent route this will all be exposed as a sham ---
Karla Soares-Weiser [EDIT - et al] may be a number of things but stupid isn't one of them.

 

Oooh, that's a strikeout. Literally did not even pretend to take those seriously the whole time. Not even 1% of the way on any of those so-called principles.

What's the point of pretending to have principles when they're clearly just a bunch of marketing slogans?

 

Indeed. And to take it to a different but more equatable context even on ethics committees, some of which I've heard of e.g. hospitals or councils convening for certain broader topic areas then the judgement is based on representativeness not of 'opinion' but demographic factors (like democracy or sampling for a voting poll or even market research). The NHS and services who read these documents are very big on this need.

Sometimes you might need people to be able to do or understand a certain thing - in this case the primary thing is experience given it's entire point is the patient voice, and understanding the illness takes time + so does understanding how it affects different parts of life and what does and doesn't help or cause issues. That may vary somewhat - particularly for those same sociodemographic representativeness reasons, like whether people are broke or in manual jobs, have marriages (which will vary hugely depending on the belief and attitude of said partner and what they've been told), other cultural issues

But the whole point is that all have the illness, which is PEM/PESE as the cardinal feature. If someone has not talked about this .. properly .. then understandably the question is whether they do have the very cardinal feature that the research should have addressed but missed a lot and pieces are being picked together for.

To look only for those isolated from others with ME/CFS, who've been enticed by BPS ideas for whatever reason isn't ticking any boxes, certainly is not representative even of the patient population and is a very strange thing for someone to say publicly is their main focus for a patient voice. Would you recruit to any other illness guideline like cancer based on them not being part of any patient community? And being fans of a specific type of CBT? Or not using social media? Or a council banning anyone who wrote a bad review about an LTN from being on the panel as to whether it stays.

A review on cancer would pick people who hadn't had the best time with treatment, or weren't glowing about everything to do with their experience - it is just even more obvious and embarrassing for ME/CFS because patients have had no treatment or support for 2 decades in general and a lot of personal experience. I find it shocking someone would state they are ineligible to contribute their voice based on something she herself has almost certainly done for whatever consumer issue.

 

Or go one further and copy the PACE protocol - where they sent newsletters saying how it had already recovered people, and used this in the therapy sessions. And create a questionnaire that directly relates to the treatment encounters, importantly letting the staff know what the questions they will be asking the participants.

But feed people one fizzy drink per day or week/fortnight etc as a 'placebo' (given no medical professional will agree that was a good idea), the important part being to blind the staff to this and let them know the questionnaire and that they can do whatever contact every so often with patients for 5mins as a check in but mainly the focus being on relationship building and doing the questionnaire. Give the staff the impression that their job depends on or career opportunities might lie in this, and the impression that the bosses really, really care (who might well inform their career).

There was a fake sociology paper a number of years ago to test the sector

 

Honestly, this always needs a reminder, because it's hard to believe that it happened, and shows that no one actually cares about bias in EBM, as long as the bias goes their way.

If this happened with an unpopular alternative medicine trial, it would be laughed at, the researchers ridiculed, displayed as examples of how pseudoscience is terrible and does no good. Do this when you are part of the club, though? It's all good. Standards for thee, none for me.

According to Cochrane (and The Lancet, and the entire medical profession as a result), it's A-OK to promote the effectiveness of a treatment during a trial for this very treatment, by people with huge conflicts of interest who had been selling this treatment for decades at this point, had pretty much invented the whole thing:

 

really?...
The sleep hygiene rules are that patients must not nap! at almost any cost. Pretty sure those rules started before PACE & they are certainly in play now.

 

Still causing harm. Included in this Fatigue, post-exertional malaise and orthostatic intolerance: a map of Cochrane evidence relevant to rehabilitation for people with... 2022 Arienti

 

Speaking of which, it would be great if we could have some details about this from Signe Flottorp:

The dates surrounding this are in November 2022. This is long after the IAG was formed. And yet Flottorp seems to be under the impression that they have stopped it. Maybe she only means withdrawing the review, but even an option where the IAG publishes something, which no working group has accepted, and the old review remains published (likely with warning of an update removed) obviously will not work.

As we have seen absolutely nothing out of this process, and that this is Cochrane we are talking about, it is reasonable to think that with this evidence of naked corruption from Flottorp over Recovery Norway, adding to how Cochrane has been mishandling this issue since 2016, and of course the similar attempts with NICE from an unknown person that reads a lot like Simon Wessely, and of course Paul Garner's unhinged behavior, it is safe to assume that Flottorp knows things we don't and that we are essentially being lied about everything. After all, this is all still happening in secret behind closed doors.

Frankly everything about Cochrane supports this. I have rarely seen such unprofessional behavior in my life, and everything and everyone surrounding this issue behaves that way.

Edit: should have added link to discussion of Flottorp's comments: https://www.s4me.info/threads/light...roval-february-2022.14876/page-45#post-449446

 

Where does flottorp say this? I can share the robust exchange

 

It's possible, but those emails were a few weeks ago and the update is "technically" happening, as far as we are told. So it hasn't been stopped, if it goes as we have been told, this IAG review should replace the Larun one, but frankly it's getting hard to believe. If there were any concerns from this IAG review, I doubt Flottorp would gloat about having stopped if just a few weeks ago.

It's clear these people are working hard behind the scenes, I assume they know more than we do about the stuff they are doing. Cochrane is not nearly as strong as NICE in bending to pressure, they're pretty much fully bent already. I don't know, but there is a perfect pattern happening here: lots of things happen behind the scenes, always bad for us, and we aren't told anything.

 

A recent article (the New Republic) actually made the same claim about PACE.

The Wakefield-Horton MMR paper remained published for 12 years. Lots of bad papers remain published. It's even clear that being published is actually a very low bar, even in The Lancet. It's so much easier among friends, too.

 

from a piece by Mark Vink posted here:

https://www.s4me.info/threads/norwa...-flottorp-and-wyller.30171/page-3#post-451783

"As evidence that CBT and GET are safe and effective, they use two reports from Cochrane. But on Cochrane's website it says that the reports are out of date and should not be used."

clearly the 'warnings' are far from adequate.

 

Since the review has been cited favorably several times recently, is it even worth pointing this out? I'm not even sure who is supposed to care. Doubtful Cochrane does, I don't think anyone would even reply. The journals probably won't, once published it's somehow not their problem. This includes the WHO but it's a huge process and I doubt it'd even be possible to find out who is responsible for that part over there, let alone whether they would do anything with it.

So far the track record of pointing out obvious errors has been mostly a waste, the common practices that make this common are... common. Some errors get corrected, but more new ones keep piling up anyway and everyone is blame-free, even for violating "zero tolerance" policies.

Seems like there's a missing step to the old peer review thing. Such as being substantial. Code review is not really a common practice in software development, some do it, some don't, but wow is it so much more comprehensive than this, there is no holding back about pointing out issues since missed mistakes would get blamed on the reviewer as well. We don't dither over whether something works or not, it's part of our job to care.

 

What's "FHI"?

 

The Norwegian Institute of Public Health (NIPH) (Norwegian: Folkehelseinstituttet; FHI) is a Norwegian government agency and research institute, ...