Cochrane ME/CFS GET review temporarily withdrawn

Stewart said:
You're absolutely right - they will accuse us of it no matter what we say. But I think @Esther12 is saying "Let's not make their job easier by giving them extra ammunition when we don't have to".
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Yes. Also, as I wasn't clear on this I thought I'd say that I meant 'cautious' as in: trying to ensure that every little claim we make can be supported by clear evidence. Not 'cautious' as in: failing to challenge those with power who are behaving badly.
 
Seven said:
I am confused with what is going on. So it is temporarily pulled the review? But why the posts that it won’t be pulled??? Can somebody in plain English summarized what is going on?
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The only concrete action that is known about now is that the following note that has been added to the review:
NOTES
This review is subject to an ongoing process of review and revision following the submission of a formal complaint to the Editor in Chief. Cochrane considers all feedback and complaints carefully, and revises or updates reviews when it is appropriate. The review author team have advised us that a resubmission of this review is imminent. A decision on the status of this review will be made once this resubmission has been through editorial process, which we anticipate will be towards the end of November 2018.
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The review author team have advised us that a resubmission of this review is imminent.
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Why would they agree to a re submission and not just refer to the original review and say theres nothing wrong with it? Isn't that what they believe.

Or is this "resubmission" just going to be a "vexatious militants are just antiscience and an anti psychiatry minority of lobbyists".

I somehow expect the re submission will be written by the SMC with the predictable here is a list of signatories who have been harassed by militants.

It definitively will not address the actual critiques.
 
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Dolphin said:
This is the original link I saw it at and it is still there:
https://www.cochranelibrary.com/cds...D003200.pub7/media/CDSR/CD003200/CD003200.pdf
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Strange.

If I go onto Cochrane's search, and search for "Exercise therapy for chronic fatigue syndrome", I get ...

upload_2018-10-27_18-47-32.png

So I then click on the first and obvious hit and that takes me to ...

https://www.cochranelibrary.com/cds...htAbstract=exercise&highlightAbstract=chronic

And from there select the 'View PDF' drop down and select 'Full', which gets me to ...

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/epdf/full

And the note is not there. So following the route that many might take to find the document, there is no notice. So I still find it weird.
 
What I think is important to realise in all this is that there is no THEY. There are all sorts of individuals in different roles with different points of view. Some people at Cochrane are clearly very concerned about poor quality reviews in the mental health section. At least on individual realises that the criticisms of the Larun review are entirely valid. Why else would Larun have had the letter?

And people's views change over time.

Nothing is simple here. If it was this event would never have occurred.
 
Barry said:
Strange.

If I go onto Cochrane's search, and search for "Exercise therapy for chronic fatigue syndrome", I get ...

View attachment 4552

So I then click on the first and obvious hit and that takes me to ...

https://www.cochranelibrary.com/cds...htAbstract=exercise&highlightAbstract=chronic

And from there select the 'View PDF' drop down and select 'Full', which gets me to ...

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/epdf/full

And the note is not there. So following the route that many might take to find the document, there is no notice. So I still find it weird.
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Yes indeed. When someone said they could see the comment the other day, I had to ask them for the link as I had used the same method as you and couldn't see it.
 
Dolphin said:
Yes indeed. When someone said they could see the comment the other day, I had to ask them for the link as I had used the same method as you and couldn't see it.
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So where did that link originate from? It's almost as if it's reserved for those who ask, and anyone else won't get to see it. And of course it's right at the end of a very long document.
 
OK I see the issues, so where do we go from here? how do we get the comment on all links,
how do we make sure the review is answering all question? I know a lot happens in the background but is there something going on we do not know about from the ME groups??? How do we know the BPS group is on top of it while we are not/?? How do we make sure we keep pressure, and everything they do is on the spot light'/???
 
Mithriel said:
Being cautious isn't doing us any good, they will accuse us of it no matter what we say. If the charities had insisted it was a biomedical problem right from the beginning we may have been better off today. You could tell who was on our side by the way they would say that "maybe there were some people with psychological problems" whereas the BPSers never admitted there could be genuine physical issues.

We may not know the cause (we don't know the cause of a lot of diseases, like MS or coeliac disease) but there is enough evidence to show that something physical is causing an ongoing problem. The AIDS activists didn't say "well maybe some of us are ill as a judgement from God but the rest of us have a physical disease"
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The charities seem missing on this issue. Unless they are doing what counts behind the scenes but then what kind of hostile climate would force them to do that this quietly? It still seems to be down to patients to do most of the work here. I don't get it. This is the most important issue happening in the UK and they seem subdued or entirely missing.

There seems to be intimidation towards professionals and institutions who speak out against the government and psychosocial lobby, at least in keeping them from speaking publicly. The issue isn't patients vs. researchers, it's competent researchers supported by most patients vs. self-proclaimed experts that few patients support. We won't get our voices heard if competent professionals can't bring their own to make sure science prevails against politics.
 
I do find it disconcerting that there are two links for the same review paper:
  • One which omits the re-submission notice, and seems to be the only version accessible via Cochrane's normal website navigation or searches.
  • ... and ...
  • One which does have the notice in, but seems to be an orphaned link, which none of Cochrane's normal website navigation nor searches will take you too.
The above seems very underhanded to me, and frankly rather devious. Why have two versions? Why have the controversial version in a place nobody will find without some very hard searching, and the original one still in the normal place for all to find as per normal? I think this smells to high heaven.

ETA: @dave30th, does this make any sense to you?
 
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Barry said:
I do find it disconcerting that there are two links for the same review paper:
  • One which omits the re-submission notice, and seems to be the only version accessible via Cochrane's normal website navigation or searches.
  • ... and ...
  • One which does have the notice in, but seems to be an orphaned link, which none of Cochrane's normal website navigation nor searches will take you too.
The above seems very underhanded to me, and frankly rather devious. Why have two versions? Why have the controversial version in a place nobody will find without some very hard searching, and the original one still in the normal place for all to find as per normal? I think this smells to high heaven.

ETA: @dave30th, does this make any sense to you?
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Very good point @Barry is there a feedback function on the page? From my experience with getting stuff published at work it is conceivable that it is a web publishing error where the version that’s currently an orphan page should have replaced the other version but the person pushing it live it has made an error. If it is highlighted to them they would then have an opportunity to correct that if it is genuinely cock up rather than conspiracy otherwise it would fall into the latter category.

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

ETA2 there doesn’t seem to be an on page feedback function for highlighting issues but there is info on how to contact. https://www.cochranelibrary.com/help/contact-us
 
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