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

Description now removed/ sentence replaced with

"See also this list curated by Hilda Bastian...."

Link to the 'Open sheet for additional links related to the Cochrane review on exercise & ME/CFS':

Code:

https://docs.google.com/spreadsheets/d/1Z6ktpOxGOYna6ApB5P49pCd_V6QMew6eiptwpFCFrH8/edit#gid=0

Thanks Hilda.

If I understood correctly, now anyone who submitted references that didn't make it on the first list can put them on the 2nd sheet without implicitly agreeing that their submissions did not fit the first list.

Don't want to be annoying , but just thought it would be great to have the link to the open sheet also on the list that is curated by you?

 

I see

 

Corrected a few typos and posted on my blog https://healthycontrolblog.wordpres...hrane-independent-advisory-group-21-may-2020/

 

why is this coming up as being published yesterday (21 May 2020)??

https://www.cochrane.org/CD003200/DEPRESSN_exercise-treatment-adults-chronic-fatigue-syndrome

eta:

 

There is this

which is from the What's New page, https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/information#whatsNew, of the review itself.

I'm sure coincidentally, this new page that Slysaint has spotted DOESN'T have that new text included, so my suspicious mind suggests that this new page is a handy one to direct people to as most people will simply read the information presented there and believe that the review is actually worth something.

 

Yes, I've just rechecked and it shows if you click on the button 'read full abstract'.

but not a direct link

eta: cross posted with MSEsperanza

eta2: its coming up as a link here but not on the Cochrane site

 

Every time Cochrane make a tiny change to anything linked to a review, they have to add a note to it. In October, I asked for them to link from the review to the news item about the fact they were planning an update. When they eventually did it on 6 February, nearly four months after I asked, it meant that the prominent "conclusions changed" tag was wiped off the review. Because the conclusions didn't change between the version published on 2 October (with changed conclusions from 2017), and the note with link to the news item added on 6 February. This made me extremely cross, but it seems there is nothing I can do about it because that is the way the review publishing software is set up. If you want to try and understand the saga, (good luck with that) you can read the correspondence https://healthycontrolblog.wordpres...rcise-for-cfs-review-july-2019-february-2020/

 

For reference, the adverse influence of the current review on the content of the Wikipedia page for CFS is documented in this post in the Wikipedia thread.

 

This will make for such a fascinating study of the powers of Wikipedia and what is likely one of its worst failures so far. It will take a while for the self-reflection to be acceptable but the fact that for years it was impossible to even create the main article for the proper name of the disease just because of personal opinions by a few gatekeepers reflects very poorly on Wikipedia's role as a source of information and how evidence becomes accepted in the first place. The cherry-picking is just as blatant as in the source material from which the cherries were selected in the first place.

It has such fascinating implications for science, the role of expertise, what it means to be an expert, the influence of opinions and ideology, a side-show to fake news but which exists for the same reasons, however in this instance stemming from incompetent-yet-recognized experts supported by institutions. Basically: what happens when nearly all of science fails despite having everything at their disposal to know better? The weight of Cochrane vs. the IOM report is really interesting in that regard when one is vastly more reliable and thorough than the other.

An entire graduate course could be built around this. It bridges ethics, quality control, the obligations and accountability of professionals acting in official capacity, the evidence review process and reliability of evidence in general, not just of Wikipedia itself but from official sources that now span the whole gamut from relatively reliable to downright fantastic, all from respectable sources that don't seem bothered by massive discrepancies.

 

https://training.cochrane.org/resou...-related-information-accessed-billions-people

 

Well I hope yourself, or someone else will let her know it exists, so that she at least might ask to see it. I don't imagine they will volunteer it?

 

I do wonder if it's the explanation for the zealotry in guarding Wikipedia against reliable evidence, simply because it contradicts with Cochrane's incompetent disinformation.

That would be incredibly bad, though not the least bit surprising. Fortunately if this is the case it can be found out, everything electronic leaves a trace.

Adult supervision is so badly needed.

 

The problem is that the basic mistake doesn´t happen at the level of control but at the basis of all that research. And a lot of research says roughly the same - which sounds good.

The controllers, now, are not the researchers, instead the researcher want to fulfill any standards. And may forget about common sense.

This points to the fact that research is involved in a system, and the control even more. And the system is working but stupid.

At least one can hope that the concerns are not completely unheard, though the whole thing also illustrates pretty much what a world we live in.

 

Hello all. I got hold (via FOI, and a bit of persistence) some more correspondence between Cochrane and NIPH - up to 17 June 2019. (We only had it up to 29 May before) Will Tweet and send to Hilda in due course.

 

Yiiish. This does not inspire confidence in the slightest. I would say my confidence in Cochrane's ability to do the right thing has dropped significantly and it was already close to zero.

It shows significant organizational dysfunction for the editor-in-chief to be involved to such a degree while keeping the topics of involvement to what basically amounts to nitpicking over the choice of font. I see very little discussion over the actual issues, just busywork over how to sweep the issues away by focusing on irrelevant trivia.

What's clear is that avoiding offending the authors is basically the only concern, that Cochrane sees this as PR issue, not a substantial one. Tovey seems to have taken the substance more seriously but still chose to do nothing. I'm not sure which is best and those concerns have not transitioned well in the changing of the chairs.

No big deal, just people nitpicking over trivia while millions of lives continue to be discriminated out of a lifeline. Grotesque.

 

This reminds me of how bizarre it is to present a "better than a passive control intervention" result as meaningful. It is what you would expect if the treatment did not work.

 

It seems that ultimately everything in the methodology community loops back to these Lilliputian rules that have been agreed so as not to upset too many people. Sooner or later the fiddle strikes up and the angels start dancing on the pinhead when there was nothing worth arguing about.

 

It's really puzzling how "it's better than nothing" is argued as significant. "Better than nothing" is literally what people say and mean when they receive something they don't want or intend to use, that it will be of no use but still something, even useless, is better than nothing, meaning if it were any less useful, even by the tiniest bit, it would literally amount to nothing.

Talk about low standards. Basically making it acceptable to present the smallest least significant result you can squint at as an end in itself has created the perverse incentive to work on just doing that and no more, on working at the margins to squeeze out the illusion of something rather than trying to produce something meaningful.

Clinical psychology, no less, seems entirely oblivious to perverse incentives and that frankly blows my mind. The illusion of progress is a perfectly acceptable practice. Basically Planck length progress. Really not hard to see why so little actual progress occurs given that. Especially when for unknown reasons it is perfectly OK to turn the illusion of the smallest possible increment into "it's a complete cure, just wish for health and you will have it, it's proven by science".

 

This is how the PACE authors have argued their case in the past, that GET and CBT-a-la-GET are good because there is nothing else on offer.