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

MSEsperanza said:
Actually I like the idea of an open document. It just irritates me that it's subtitled "for published comments/critiques that don't fit this list:
1kv3PuQ0XkuD5zyPlRmoxMUSBc21Iat8QXWibeKXgcxY"
Click to expand...

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?
 
Last edited:
Caroline Struthers said:
My latest email to Hilda - God loves a trier, right?!

Dear Hilda

I was a nice surprise to see the note at the top of the abstract linking to Karla’s news article. Someone said something cryptic on Twitter so I had a look. Rachel Marshall said towards the end of my long campaign to try and get a more prominent link from the review to the news article, that she would try to also link to the information about the update (see her email below). Perhaps you could check with her? I still think it’s awful that the “conclusions changed” tag has disappeared because of the various non-content related notes wiped it out.

From: Rachel Marshall <rmarshall@cochrane.org>
Sent: 24 February 2020 11:58
To: Caroline Struthers <caroline.struthers@csm.ox.ac.uk>
Cc: Karla Soares-Weiser <ksoares-weiser@cochrane.org>
Subject: RE: Exercise for CFS Review

Dear Caroline,

With regard to a link to the new statement about the advisory group lead, we are hoping to have a space on the Cochrane.org website where we include all information about the progress of the update of the ‘Exercise therapy for chronic fatigue syndrome’, including statements and updates on key milestones, so that people can have all information on the review in one space. We will then look to link from the review to this page, so we don’t need to keep going through the amendment process for the review every time there is an update. I’m in discussion with the web team about setting this up now, and I will let you know progress on this.

With regard to the “Related content” link/button in the right-hand panel on the Cochrane review, I’m sorry this was not communicated sooner, but we cannot link to Cochrane news statements from this button. This button can only link to a limited number of Cochrane products that go through a particular production process, such as editorials and podcasts. Technically it is not possible to link to Cochrane news statements from that button.

With best regards, Rachel

Rachel Marshall
Senior Editorial Officer
Editorial & Methods Department | Cochrane Central Executive


As I’ve said before, I don’t think starting again with the same “Exercise for CFS” review question is a good idea. It may be a welcome admission from Cochrane that it got it wrong the first time, but that now includes the review question. Things have moved on, and Cochrane is now flogging a dead horse, and ignoring the ongoing harm to people with ME whilst a new review is in preparation. Also, why ignore the 2008 CBT review on the library with the author’s conclusion “CBT is effective in reducing the symptoms of fatigue at post-treatment compared with usual care”. If you’re going to update the exercise review, it doesn’t make sense to ignore the CBT review which has all the same problems with it and is even more out of date.

It would be more useful to produce an overview of all trials on treatments for ME - GET, CBT, Lightning Process plus therapies outside the BPS domain eg. Ampligen, Chinese medicine (using studies from the recently withdrawn review) etc.. The review could ask the more pressing question of "Why are most of the very few trials on treatments for ME so appalling?" It could focus on objective longer-term outcomes like health services-use, disability payment claims, work/study/society involvement status, and short term objective outcomes physical function etc. plus maybe quality of life amongst the self-reported outcomes. A review like this could shine a much needed spotlight on the fact that most of the studies on psychological/behavioural/woo type interventions for ME use ignore or downplay objective outcomes, use methods such as focusing on subjective outcomes to exaggerate the benefits of these interventions, and under report harms and reasons for drop outs. The overall conclusion about the poor quality of research on behavioural and psychological therapies would be a useful take away which could be applied more generally to improve the quality of primary studies of psychological and behavioural interventions. This would allow Cochrane to partly deliver on its stated aim of advocating for better primary research, the studies on which Cochrane reviews are built. Because primary research is so poor, especially in trials of non-drug interventions, which seem to be held to an even lower standard than drug trials, which have their own issues. Cochrane reviews rarely say anything other than more and better research is needed. If you’re lucky, reviewers indicate what a good primary study should look like. But that is quite rare. This failure to advocate effectively was acknowledged by Mark Wilson himself. I will have to dig out the report where this admission is made. It was probably made in a considerably more subtle way that I remember. But it was made nonetheless.

I wrote a proposal to David Tovey in 2018 which outlined how Cochrane could pursue this idea of advocating for better primary research in partnership with EQUATOR. As further discussions in September 2018 were overtaken by other events, I posted it on my blog. https://healthycontrolblog.wordpres...help-improve-the-quality-of-primary-research/

With best wishes

Caroline
Click to expand...
Corrected a few typos and posted on my blog https://healthycontrolblog.wordpres...hrane-independent-advisory-group-21-may-2020/
 
Jonathan Edwards said:
But this isn't specifically psychologists. Physiotherapists, physicians and statisticians who are involved in the formal pretence that open label studies with subjective end points and inadequately controlled studies are acceptable. This particular review was driven by a physiotherapist.
Click to expand...
I didn't mean psychologists specifically, more the broader psychology/psychiatry world.

The problem seems to originate from, or be mostly found in, psychology/psychiatry. Anywhere you find this problem, there are usually psychs somewhere in the picture. I doubt you would see it often in collagen research, for example.
 
Sly Saint said:
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:
Click to expand...
There is this
Screenshot 2020-05-22 at 11.48.00.png
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.
 
Andy said:
There is this
View attachment 11031
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.
Click to expand...
Yes, I've just rechecked and it shows if you click on the button 'read full abstract'.

A statement from the Editor in Chief about this review and its planned update is available here: www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome .

Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is a serious disorder characterised by persistent postexertional fatigue and substantial symptoms related to cognitive, immune and autonomous dysfunction. There is no specific diagnostic test, therefore diagnostic criteria are used to diagnose CFS. The prevalence of CFS varies by type of diagnostic criteria used. Existing treatment strategies primarily aim to relieve symptoms and improve function. One treatment option is exercise therapy.
Click to expand...

but not a direct link

eta: cross posted with MSEsperanza

eta2: its coming up as a link here but not on the Cochrane site
 
Andy said:
There is this
View attachment 11031
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.
Click to expand...
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.
Three Chord Monty said:
Improving the article has happened in fits and starts since Trial By Error got the PACE ball rolling, so to speak, in late 2015. Aggressive edits are often reverted, but it seems like every once in awhile someone takes a look at the differences between the article and the 'reliable medical sources' and sees a way to insert relevant info & delete harmful info that for whatever reason just didn't happen previously. There's been a lot of movement on the page over the past few days, with an absolute ton of edits that have not been reverted. On the Talk page one of the usual suspects/Wikipedia Med/Skeptic Honcho is not taking it well, but as yet nobody has found a way to credibly revert what's been changed, for the most part. Of course, we're still in a holding pattern that keeps the article from being credible pending whatever happens with NICE/Cochrane and hopefully PACE. It's already been odd that the differences exist between IOM/CDC/AHRQ and NICE/UpToDate/Mayo/Cochrane, but it's just not important enough for medical science to care about. (I'm not offering kind words towards IOM or CDC, just pointing out that the official guidance is better than it was in this context)

The lords of Wikipedia will hang onto the credibility of Cochrane until the end of time, and the Lancet, too. Five years ago I was afraid that for purposes like this Cochrane's then-recently republished exercise review would trump the IOM, and I was right. Now that the CDC took the recommendations and changed their criteria, in spite of their dismissal of any complaints about Cochrane, the positive aspects of the IOM are more prominent vs them and PACE and seemingly winning out. That said, there's a certain editor who very loudly trumpets psychosomatic etiology for CFS on Twitter and all but promotes it and the Lightning Process on Wikipedia, who hasn't yet weighed in. He likely will, but in the meantime, the current state of the article has certainly improved over the past week.
Click to expand...
 
Andy said:
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.
Click to expand...
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.
 
Last edited:
Sean said:
Indeed. What is so horrifying and contemptible about this disaster is that it is breaches basic quality control.
Click to expand...
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.
 
Caroline Struthers said:
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.
Click to expand...

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.
 
strategist said:
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.
Click to expand...
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".
 
You must log in or register to reply here.
Back
Top Bottom