Cochrane ME/CFS GET review temporarily withdrawn

NelliePledge said:
ETA also worth noting that since most users rely on google for search and tend to get sufficiently deep into the level of content they’re looking for that way many sites don’t invest too much effort into optimising their site search
Click to expand...
Trouble is when I googled for the article, the one @Adrian found with the notice on does not turn up, not that I could find. Only the un-notified version. Thought I was pretty good at chasing things down but cannot find it with google.

I will give their contact link a go. Many thanks. At least they will know people far and wide are taking an interest.
 
Barry said:
Trouble is when I googled for the article, the one @Adrian found with the notice on does not turn up, not that I could find. Only the un-notified version. Thought I was pretty good at chasing things down but cannot find it with google.

I will give their contact link a go. Many thanks. At least they will know people far and wide are taking an interest.
Click to expand...
Because the newer page is orphaned and won’t have received anything like the number of page views it wouldn’t surface very high on any google search rankings
 
NelliePledge said:
Because the newer page is orphaned and won’t have received anything like the number of page views it wouldn’t surface very high on any google search rankings
Click to expand...
However, this is a problem that need not exist, if there was only one copy, if they had, I don't know, simply altered the review, rather than creating a new copy and adding the bit to the end of it.

As in the event of there being the one, amended, copy, the original google search, would point to that.

IMO it's deliberate, to 'hide' the amended version, as what they've done is actually more more work, more effort, and doesn't achieve the stated aim, to notify that the review, is under review.
 
@Barry - I found it via the Cochrane site :) It seems like they have two versions, one beeing a sort of pfd-preview/pdf e-reader file and the other the main file. The updated version is in the section for version control. Seems like someone forgot/didn't know that putting up a new version in the history/version control section wouldn't update the other?


with note - the link on the page history/what's new, in the table for version control:
https://www.cochranelibrary.com/cds...D003200.pub7/media/CDSR/CD003200/CD003200.pdf

without note - on the front page, seems to be an e-reader version of the pdf:
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/epdf/full
 
Wonko said:
However, this is a problem that need not exist, if there was only one copy, if they had, I don't know, simply altered the review, rather than creating a new copy and adding the bit to the end of it.

As in the event of there being the one, amended, copy, the original google search, would point to that.

IMO it's deliberate, to 'hide' the amended version, as what they've done is actually more more work, more effort, and doesn't achieve the stated aim, to notify that the review, is under review.
Click to expand...
Agreed but it just depends on their approach to updating pages. in some organisations with a publishing team they might create a fresh version that can be checked and approved for publication and if someone accidentally pushed that live rather than overwriting the existing page at the existing URL you have 2 live versions. I know this happens because I had occasional glitches at work it was a bureaucratic error in those cases

ETA As the content team we were always trying to get information out in HTML web pages rather than PDFs. Technical experts seemed to like PDFs for some reason but as I remember PDFs weren’t very searchable just the title and there seemed to be more issues with multiple versions than with HTML pages because changes to the document were made outside the content management system and just uploaded. But my knowledge is now about 5 years out of date so may no longer be accurate.
 
Last edited:
I've just sent this email to David Tovey ...
Dear David Tovey,

I am following with interest the situation regarding the Cochrane review, Exercise therapy for chronic fatigue syndrome, Larun et al - 10.1002/14651858.

I am very confused by its current status however, because you have two different copies of the same review on your website, at different web addresses, one with the additional Note and one without. The one with the additional note is at an orphaned web page location, and the one without the notice is the only one visible to visitors via normal website navigation or searching within Cochrane’s website. Even via Google the one with the notice is hard to find. I find this deeply troubling, and I must admit I jumped to the conclusion it has been done deliberately. But a fellow member of the Science for ME forum counsels me that it could simply be an administrative mistake, and once notified of it, you would then be able to fix the problem.

By way of openness I am Barry at Science for ME, and one of my posts on this subject can be seen at https://www.s4me.info/threads/cochr...emporarily-withdrawn.6225/page-31#post-116305, along with many other posts on this issue. You will see that I have jumped to the conclusion this has been done deliberately, but if I am wrong about that then I sincerely apologise.

There is also another thread here https://www.s4me.info/threads/cochrane-backtracking.6391/

Needless to say I and many others, especially people with ME and their kin, very sincerely hope Cochrane stands by its high principles of rigorously good science, because for us that should be all that is necessary, nothing else. Our fervent hope is that you yourself, and Cochrane collectively, base any decision of yours purely on good science, completely uninfluenced by lobbying from any quarter. Ultimately we all have to still be able to look at ourselves in the mirror.

I look forward to your reply.

Yours very sincerely,

Barry <surname>
Click to expand...
 
This has probably been discussed before, but I notice that the one person who has been involved with the different versions of the Cochrane reviews of Exercise Therapy for CFS all the way through from the first version in 2001 is Jonathan Price, who works in the Department of Psychiatry at Oxford University, so he is a colleague of Michael Sharpe.

I looked up Jonathan Price. He is listed as a clinical tutor in the Department of Psychiatry. He has published on various aspects of psychiatric treatment. This one is of interest:
https://www.medicinejournal.co.uk/article/S1357-3039(16)30195-5/fulltext
The note about him on that paper says:
''His interests include patient attitudes to treatment and cognitive behavioural treatments.''
Edit to add:
The paper I mention is:
Functional disorders and ‘medically unexplained physical symptoms’ published in 2016.
The abstract concludes:
If reassurance and simple techniques of reattribution of symptoms do not lead to symptom resolution, cognitive behavioural therapy and the use of antidepressants as neuromodulating agents (rather than as antidepressants per se) should be considered.
Click to expand...

So he is biased from the start.
This is a clear case demonstrating the importance of removing ME/CFS from the mental health section of Cochrane.
 
Again, catching up, so apologies if this has already been discussed. I note on the history/information page:

Methods intended for future reviews
If future updates identify a number of studies that enable reporting at different time points, this should be done for example at end of treatment, at short‐term follow‐up (zero to six months), at medium‐term follow‐up (seven to 12 months) and at long‐term follow‐up (over 12 months).
Click to expand...

Surely if they looked at the long term follow up of PACE and the 12 month point of FINE which seems to be the longest term available, both of which showed NO between group differences, they must surely conclude that these were both null trials. As far as I know all the other studies included were much smaller and shorter term. On this basis alone, they should not be recommending exercise therapies for anyone with ME/CFS, or even for anyone with 6 months or more of unexplained fatigue.
 
Trish said:
Again, catching up, so apologies if this has already been discussed. I note on the history/information page:



Surely if they looked at the long term follow up of PACE and the 12 month point of FINE which seems to be the longest term available, both of which showed NO between group differences, they must surely conclude that these were both null trials. As far as I know all the other studies included were much smaller and shorter term. On this basis alone, they should not be recommending exercise therapies for anyone with ME/CFS, or even for anyone with 6 months or more of unexplained fatigue.
Click to expand...

You know what Landmark and the norwegian bps-crowd's spin on that is...?

Evidence that ME-patients needs continues treatment to keep up the good treatment effect..... :-/
 
Trish said:
Again, catching up, so apologies if this has already been discussed. I note on the history/information page:

Methods intended for future reviews
If future updates identify a number of studies that enable reporting at different time points, this should be done for example at end of treatment, at short‐term follow‐up (zero to six months), at medium‐term follow‐up (seven to 12 months) and at long‐term follow‐up (over 12 months).

Surely if they looked at the long term follow up of PACE and the 12 month point of FINE which seems to be the longest term available, both of which showed NO between group differences, they must surely conclude that these were both null trials. As far as I know all the other studies included were much smaller and shorter term. On this basis alone, they should not be recommending exercise therapies for anyone with ME/CFS, or even for anyone with 6 months or more of unexplained fatigue.
Click to expand...

One of the problems they had was in the definitions of "follow-up" and the assumptions about therapy contamination. For example, in PACE, the 12-month time-point was the end of the study period, and not long-term follow-up (that was at 30 months), and participants weren't allowed to switch therapies within this time period. In others, 12 months was considered long-term follow-up, and there may well have been therapy contamination. This indicates that the studies included were highly heterogeneous, not only in the patient populations studied (cf PACE and FINE), treatments used (definition of "exercise"), but also in terms of the definitions of what constituted follow-up, treatment duration etc.

Any form of quantitative review that includes such a diverse range of studies is going to be essentially meaningless, even if you can delve down and obtain specific data from the trials themselves. You might get them all to match on one thing, but they will then all fall apart on many others.
 
Lucibee said:
Any form of quantitative review that includes such a diverse range of studies is going to be essentially meaningless, even if you can delve down and obtain specific data from the trials themselves. You might get them all to match on one thing, but they will then all fall apart on many others.
Click to expand...
Yes, and this was a quantitative review that includes a diverse range of studies which themselves produced uninterpretable results!

I’ve just been re-reading Tom and Bob’s comments on the Cochrane review. Larun’s responses are so weak it is astonishing that the review has been able to stand for so long.

There’s no point in repeating everything that is published but I was struck by Larun’s apparent belief that the Cochrane guidelines don’t need to be applied to her review, and that, for example, she can decide for herself what constitutes a high risk of bias. In response to Tom Kindlon she writes: “Overall, we don’t think that the issues you raise with regard to the risk of selective outcome bias are such as to suspect high risk of bias, but recognize that you may reach different conclusions than us.”

And in response to Robert Courtney’s follow-up, where he explains in more detail why the PACE trial should be classified as having a high risk of bias (p.127), her reply amounts to little more than “we do not agree”.

It’s not what Tom or Bob thought, it’s what the guidelines say, and whether or not the trial meets any of its five criteria for being classified as having a high risk of bias. If she thinks that Tom and Bob are wrong she should explain why. But [paraphrasing] “I’m right and you’re wrong so let’s agree to disagree” is not a meaningful scientific response, and I can’t see how Larun or Cochrane will be able to fudge this or any of the other valid concerns when the update is submitted. Having said that, in the world of BPS research one should never underestimate the ability of authors and publishers to get away with presenting incoherent, self-contradictory, evasive, diversionary, ad hominen or straw man arguments as good science.
 
Last edited by a moderator:
Wonko said:
However, this is a problem that need not exist, if there was only one copy, if they had, I don't know, simply altered the review, rather than creating a new copy and adding the bit to the end of it.

As in the event of there being the one, amended, copy, the original google search, would point to that.

IMO it's deliberate, to 'hide' the amended version, as what they've done is actually more more work, more effort, and doesn't achieve the stated aim, to notify that the review, is under review.
Click to expand...

Agreed. Anyone with slight competence in how the Web works understands that this effectively buries the update. Every link to the original document will remain and anyone visiting it will have no idea about the issue unless they deliberate seek it out, which they wouldn't since they don't know about it.

It's the equivalent of placing the notice of demolition in a leaky cabinet in a cramped bathroom in the 3rd basement of the building and declaring that it met criteria for public notice.

Yet another action that amounts to malpractice and deceit. Politics are destroying the process of science within UK medicine. Completely absurd.
 
rvallee said:
Agreed. Anyone with slight competence in how the Web works understands that this effectively buries the update. Every link to the original document will remain and anyone visiting it will have no idea about the issue unless they deliberate seek it out, which they wouldn't since they don't know about it.

It's the equivalent of placing the notice of demolition in a leaky cabinet in a cramped bathroom in the 3rd basement of the building and declaring that it met criteria for public notice.
Click to expand...
Yes it's all a bit 'Hitchhikers Guide to the Galaxy' isnt it?

For those unfamiliar with Hitchhikers guide....
“People of Earth, your attention, please… This is Prostetnic Vogon Jeltz of the Galactic Hyperspace Planning Council. As you will no doubt be aware, the plans for development of the outlying regions of the Galaxy require the building of a hyperspatial express route through your star system, and regrettably, your planet is one of those scheduled for demolition. The process will take slightly less than two of your Earth minutes. Thank you…
There's no point in acting surprised about it. All the planning charts and demolition orders have been on display at your local planning department in Alpha Centauri for fifty of your Earth years, so you've had plenty of time to lodge any formal complaint and it's far too late to start making a fuss about it now…
What do you mean you've never been to Alpha Centauri? Oh, for heaven's sake, mankind, it's only four light years away, you know. I'm sorry, but if you can't be bothered to take an interest in local affairs, that's your own lookout. Energize the demolition beams.”
Click to expand...
 
JemPD said:
Yes it's all a bit 'Hitchhikers Guide to the Galaxy' isnt it?
Click to expand...
To be fair, the hyperspatial express route plans were available.
Douglas Adams said:
“But the plans were on display…”
“On display? I eventually had to go down to the cellar to find them.”
“That’s the display department.”
“With a flashlight.”
“Ah, well, the lights had probably gone.”
“So had the stairs.”
“But look, you found the notice, didn’t you?”
“Yes,” said Arthur, “yes I did. It was on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying ‘Beware of the Leopard.'”
Click to expand...
 
I have been ill for many, many years and have watched the rise and rise of the BPS view, seen their power and duplicity, so forgive me for my cynicism.

Could this leaked press release have been a way to keep us occupied instead of concentrating on the fact that three quarters of the NICE committee are BPSers?
 
rvallee said:
Anyone with slight competence in how the Web works understands that this effectively buries the update. Every link to the original document will remain and anyone visiting it will have no idea about the issue unless they deliberate seek it out, which they wouldn't since they don't know about it.
Click to expand...

I don't think these people are at all web savvy. So they have no competence as to how the Web works. We should use this. I'm pretty web incompetent, but I think even I am more clued up than they are! I suspect their mistake was truly a mistake. Also suspect they pay their web designers a pittance (after all they ain't med professionals are they?) so if you pay peanuts you get monkeys. (apologies to monkeys)
 
Mithriel said:
I have been ill for many, many years and have watched the rise and rise of the BPS view, seen their power and duplicity, so forgive me for my cynicism.

Could this leaked press release have been a way to keep us occupied instead of concentrating on the fact that three quarters of the NICE committee are BPSers?
Click to expand...

It was to put pressure on Cochrane and prevent the withdrawal from happening. Which worked.

Of course the withdrawal would have been significant for the committee's work but then so should its many flaws.
 
ladycatlover said:
I don't think these people are at all web savvy. So they have no competence as to how the Web works. We should use this. I'm pretty web incompetent, but I think even I am more clued up than they are! I suspect their mistake was truly a mistake. Also suspect they pay their web designers a pittance (after all they ain't med professionals are they?) so if you pay peanuts you get monkeys. (apologies to monkeys)
Click to expand...

Oh, well I was talking about Cochrane. I don't know what specialty this is but communications experts in public health understand these things. This is pretty basic stuff. When you deprecate standards you just can't leave the old documents as is. Whether it's web or paper, the principle is the same.

This was likely deliberate. Guess we'll know if they fix it. If it's a mistake, it would.
 
You must log in or register to reply here.
Back
Top Bottom