Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

https://twitter.com/user/status/1228051155999248386

 

Oooooo...!

https://twitter.com/user/status/1228097250447880194


https://www.cochrane.org/news/appointment-lead-independent-advisory-group

 

Is anyone able to attend the CMRC conference and ask questions of Karla SW?

 

As I noted here, https://www.s4me.info/threads/uk-cf...e-10th-and-11th-march-2020.11813/#post-236183, Karla Soares-Weiser is now not attending the CMRC conference, although two of her colleagues are. If I get the opportunity then I will talk to them about it.

 

Posts discussing the new independant review of the Cochrane review on exercise therapy and ME/CFS have been moved/or copied to a new thread.

 

Latest timeline of link-gate - correspondence with Rachel Marshall, Senior Editor, Cochrane

It's so confusing. They changed the conclusions of the previous version of the review in August. Then they republished it (with presumably lots of other changes to the text) in October 2019. With a big flag at the top saying "conclusions changed". This has now gone, never to return I guess. I almost feel like it's deliberate...

Wednesday 12th Feb 2020

Dear Rachel

Please can you point me to where it’s still recorded that the conclusions changed again between the note on 19 August 2019 (on version 7 published in 2017) and version 8 published on 2 October 2019? If the conclusions in fact didn’t change again between August 2019 and October 2019, please let me know.

Many thanks

Caroline

Friday 14th Feb 2020

Dear Caroline,

There was no version of the review published in August 2019. The note written in August 2019 relates to the review published in October 2019, but there was some delay between the note being written and the review being published. The published review on the library has now been amended to clarify that the note written in August 2019 refers to the changes made to the October 2019 version. I have also passed on my comments to the team working on the Cochrane Library website about the potential for mismatching dates to cause confusion for readers, which will be considered in a future assessment of versioning of Cochrane Reviews.

I hope this addresses your points. Just to let you know I am now on leave, returning to the office on Monday 24th February.

With best regards, Rachel

Friday 14th Feb 2020

Thanks for your efforts Rachel

It’s certainly confusing, and it’s a shame that the prominent “conclusions changed” flag has now disappeared from the review because, as you pointed out, the conclusions didn’t change between the addition of the note with the link and the conclusions changing in August/October. The note about the link was not “an amendment” to the review. Please can you explain why this couldn’t have been avoided by using the “Linked to the review” facility? I repeatedly suggested this, but I never got an answer as to why it was not possible. I don’t even know if you understood what I was suggesting because every time it was ignored. I am happy to accept you can’t do it, but not without a, preferably sensible, reason.

There is now another statement about the review which needs to be linked to it. https://www.cochrane.org/news/appointment-lead-independent-advisory-group. I dread to think what confusion will ensue if I ask for that to happen. Would I have to submit feedback again? I don’t think either you or I could face it. Please consider using the “Linked to this review” facility for both statements, or let me know why that is not possible.

The systems around versioning definitely need updating and I am grateful you have passed on comments about the confusion it causes for readers

Best wishes

Caroline

 

Looking forward to the 'This review has been withdrawn' notice.

If that ever happens, will it just be a little note somewhere or will the review actually be taken down?

 

For the Chinese herbs one that got withdrawn, the page now looks like this:

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD006348.pub3/full/es

You can access the review still, but only via the version controll section. (At least that’s what I’m able to find) The main page is clearly marked, and has the reasoning for withdrawing.

 

I am fairly sure the only reason the Exercise one didn't get withdrawn is because the authors didn't agree to let it happen

 

Bit of a problem to the idea of science being self-correcting if that process is deliberately broken.

Science: we must be self-correcting

Cochrane: well, unless you don't feel like it then it's OK let's not hurt feelings let's hurt people instead so we don't look bad?

Especially considering the authors of the review essentially graded their own work, after having written their own questions, then somehow changed the answer keys mid-test but were given approval to change those answers and they still count as a perfect score (because 60/100 is now a perfect score, of course), somehow actually having answered using material from an unrelated discipline but that's OK because the classroom change was approved by the school administrators.

 

Has there been any movement with regards re allocating ME to a different Cochrane group from the The Cochrane Common Mental Disorders Group?

 

Good question.

 

I'll be there. I was looking forward to meeting her. Too bad.

 

and because undoubtedly very, very powerful people were yelling behind the scenes.

 

That is now considered best practice.

 

Yes. I would not be at all surprised if very persuasive words and 'encouragements' were not exercised pretty high up in the corridors of power, given how much money it saves (in the term of one government anyway) to foster the cheapskate treatment options. In fact I'd be amazed if it were not happening. All very low key of course, and fully loaded with plausible deniability.

 

I have suggested on Twitter it go to the Cochrane Work Group - so the review will focus on objective outcomes. The editor of that group (Jos Verbeek) is my last remaining friend in Cochrane. Even he hasn't really looked at it properly. He seems keen though and he's sensible. https://work.cochrane.org/

 

I was looking forward to you meeting her too. I would have paid A LOT for tickets to see it in fact. I met her in July along with two patients. It was very amicable. I was greeted with a hug, no less. Before she then asked me whether we'd ever met before. Obviously we had, which was why I let her hug me...didn't want to appear rude. And since then she's ignored pretty much all my emails. It's like the meeting never happened. Weird.

 

Hmmm ... let's hope that doesn't indicate all show and no action.