Cochrane ME/CFS GET review temporarily withdrawn

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.

 

Cautious as in meticulous?

 

https://twitter.com/user/status/1056212825411072000

 

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?

 

The only concrete action that is known about now is that the following note that has been added to the review:

 

Nope! Note 2 has disappeared again ...


What the f' is going on?! Seems like the BPS'ites have got Cochrane by the short and curlies.

 

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

 

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.

 

Strange.

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



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.

 

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.

 

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.

 

I got it from @Adrian .

 

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'/???

 

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.

 

Strange isn't it. It can be found via google, but not through Cochrane's site search.

 

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?