Cochrane ME/CFS GET review temporarily withdrawn

I could access it and just downloaded the whole paper.

There seems to be different levels of access, based on (among other things) country and wether each nation have a "national provision", Norway and UK amongst them:

There are more, different ways to access, tables in the link. (sorry, muddled brain)

https://www.cochranelibrary.com/help/access

 

You and me both! We have a wasp problem at home that is doing my head in, so in an over-vigilant state all the time. Hopefully they will disappear soon as we have colder weather forecast for end of the week. This is on top of journey home on Thursday in husband's uncomfortable (to me) car. I really should have asked him to come home and swap cars for drive home for me. Oh, and Saturday he went on the People's Vote march in London, so I had to deal with the wasps on my own - fortunately only one appeared in bedroom that day! Sorry, very off topic!

 

Do you mean the FINE data: -2.12 [ -4.49, 0.25 ] ?

If so that's still there on page 65 of the pdf, in Analysis 1.2

I was just about to try to work out what was going on with Larun's response about that.

I'm sure I was told that old Cochrane reviews (post 2014?) are still available, but I couldn't see how.

PS: I've found downloading the pdf is much more convenient than using their webpage for searching through, and trying to follow all the points being made.

 

No, it was something else that didn't match. I've now lost track - but I've found the files - they're identical (pub3 to pub7).

 

Ta. Could you let me know how you found them? It might be hand at some point.

 

Sorry - I ETA'd my original post to add it: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/information#whatsNew

 

Would that be the "History" choice in the right hand side menue?

 

I missed it to - in the 'Version history' section of the page there are links to the previous versions.

 

Oh, yes I ment to add that, and forgot.... The links are 'hiddin' in the table under version history - not everytime I notice there are links there....

 

It was more to do with the inclusion of the unplanned, unpublished 33-pt analysis data in the SMD instead of binomial data, and then relegating the SMD data on the basis that it was more difficult to understand. Frankly, any pooling of inconsistent data is going to be dangerous (and potentially uninterpretable), so I can sort of see why they did it, but they should have been much more up-front about it.

CFQ simply isn't useful as a repeated measures tool. It's just too crude. It measures "worsening of fatigue compared with when you were last well". How anyone thought they could realistically use it to measure improvement in fatigue, when the whole scale is biased towards "getting worse", is just daft. Use of the binomial scale sort of addresses some of this (0=better/no change; 1=bit worse/much worse), but without sorting out the baseline issues, it's useless.

Larun et al. following PACE's lead on the switch just shows how they fail to understand what the measures they are analysing actually do.

 

Someone better at twitter/english might like to invite her over here?

https://twitter.com/user/status/1054367430909165569

 

In Läkartidningen today (Sweden)

http://lakartidningen.se/Aktuellt/Nyheter/2018/10/Cochrane-drar-tillbaka-MECFS-oversikt/

Google translate, English
https://translate.google.se/transla...rane-drar-tillbaka-MECFS-oversikt/&edit-text=

 

https://twitter.com/user/status/1054406245233377286


Great job, whoever you are here

Hopefully she will join us and see we aren't all like Erik Johnson...

 

I did already.

 

Another point that Tom and Bob picked up on was the downgrading of evidence obtained at follow-up (rather than at end of treatment).

The main excuse she gave Bob was therapy contamination, but we know from PACE that this wasn't the case until at least 2.5 year follow-up. I would hope that the other studies had taken steps to minimise this anyway, so to mention it as an issue without discussing it in the review seems odd.

When Tom brought this up, it was all about baseline differences between groups (possibly due to drop-outs being more severely affected?) - which she conceded could be addressed by the individual patient data analyses (by adjusting for baseline). So I guess we'll have to wait and see - unless it's the IPD review that's been pulled...

 

I'm happy to see more academics take an interest in this whole mess of ME/CFS/PACE/CBT/GET/SMC/LP etc.

 

Yay! and thank you

Very much agree with here suggested area for research would be good, and as I understand this comes from twitter-dialog with patients after the Clara Geralds post on Cochrane withdraw? So maybe something good might come from it after all? Hope she finds here way here. *fingers crossed*

 

I note that Sinéad Conneely describes herself as having a special interest in psychosomatic medicine.