Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

I don't think we have a general Cochrane thread so posting here. It doesn't have anything to do with the review.
We're planning our next @CochraneUK special series, living with long-term conditions. What should we read about telehealth in the context of the pandemic? @trishgreenhalgh I recall you were investigating remote consultations somewhere beautiful (Skye?).
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Code: 
https://twitter.com/SarahChapman30/status/1361637687401336834

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Hi All

I have heard back from Cochrane about my complaint to the "Cochrane Library Oversight Committee".

They have changed the policy so that complaints about the Editor in Chief are now handled by the CEO (her boss) Mark Wilson - see his letter attached. The main upshot is MW has recommended add an extra bit to the editorial note saying the review should not be used for clinical decision-making.

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Pretty ironic as Cochrane's strap line is "Trusted evidence, informed decisions, better health"

Even if they follow his recommendation, the note will not visible here https://www.cochrane.org/CD001027/DEPRESSN_cognitive-behaviour-therapy-chronic-fatigue-syndrome which is the main window to the review

So my next step is to complain to COPE https://publicationethics.org/facilitation-and-integrity-subcommittee which I will do asap.
 

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Caroline Struthers said:
Hi All

I have heard back from Cochrane about my complaint to the "Cochrane Library Oversight Committee".

They have changed the policy so that complaints about the Editor in Chief are now handled by the CEO (her boss) Mark Wilson - see his letter attached. The main upshot is MW has recommended add an extra bit to the editorial note saying the review should not be used for clinical decision-making.
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That editorial note would preclude it from being cited on the Wikipedia page, however!
 
Caroline Struthers said:
Hi All

I have heard back from Cochrane about my complaint to the "Cochrane Library Oversight Committee".

They have changed the policy so that complaints about the Editor in Chief are now handled by the CEO (her boss) Mark Wilson - see his letter attached. The main upshot is MW has recommended add an extra bit to the editorial note saying the review should not be used for clinical decision-making.

View attachment 13427

Pretty ironic as Cochrane's strap line is "Trusted evidence, informed decisions, better health"

Even if they follow his recommendation, the note will not visible here https://www.cochrane.org/CD001027/DEPRESSN_cognitive-behaviour-therapy-chronic-fatigue-syndrome which is the main window to the review

So my next step is to complain to COPE https://publicationethics.org/facilitation-and-integrity-subcommittee which I will do asap.
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They seem to need a further additional note: "We have observed that our long grass seems to not be long enough. We are therefore growing some more, longer long grass, so we can kick our existing long-grass-that-isn't-long-enough, and everything already in it, further, into our new long grass. There will be a delay however, whilst we wait for the new long grass to fully grow. Please bear with us during this difficult time."
 
Caroline Struthers said:
Hi All

I have heard back from Cochrane about my complaint to the "Cochrane Library Oversight Committee".

They have changed the policy so that complaints about the Editor in Chief are now handled by the CEO (her boss) Mark Wilson - see his letter attached. The main upshot is MW has recommended add an extra bit to the editorial note saying the review should not be used for clinical decision-making.

View attachment 13427

Pretty ironic as Cochrane's strap line is "Trusted evidence, informed decisions, better health"

Even if they follow his recommendation, the note will not visible here https://www.cochrane.org/CD001027/DEPRESSN_cognitive-behaviour-therapy-chronic-fatigue-syndrome which is the main window to the review

So my next step is to complain to COPE https://publicationethics.org/facilitation-and-integrity-subcommittee which I will do asap.
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That added note 'it should not be used for clinical decision making' looks like a useful step forward, @Caroline Struthers. It makes nonsense of the review still existing at all, since I assume Cochrane reviews are supposed to be 'useful for clinical decision making'.

Thanks for your perseverence.
 
Trish said:
That added note 'it should not be used for clinical decision making' looks like a useful step forward, @Caroline Struthers. It makes nonsense of the review still existing at all, since I assume Cochrane reviews are supposed to be 'useful for clinical decision making'.

Thanks for your perseverence.
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It may not be added. It is just a recommendation from the CEO. And yes, it makes a nonsense of any review published 2008 or before existing. But exist they do.
 
Barry said:
They seem to need a further additional note: "We have observed that our long grass seems to not be long enough. We are therefore growing some more, longer long grass, so we can kick our existing long-grass-that-isn't-long-enough, and everything already in it, further, into our new long grass. There will be a delay however, whilst we wait for the new long grass to fully grow. Please bear with us during this difficult time."
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:laugh::laugh: brilliant!
 
Caroline Struthers said:
Hi All

I have heard back from Cochrane about my complaint to the "Cochrane Library Oversight Committee".

They have changed the policy so that complaints about the Editor in Chief are now handled by the CEO (her boss) Mark Wilson - see his letter attached. The main upshot is MW has recommended add an extra bit to the editorial note saying the review should not be used for clinical decision-making.

View attachment 13427

Pretty ironic as Cochrane's strap line is "Trusted evidence, informed decisions, better health"

Even if they follow his recommendation, the note will not visible here https://www.cochrane.org/CD001027/DEPRESSN_cognitive-behaviour-therapy-chronic-fatigue-syndrome which is the main window to the review

So my next step is to complain to COPE https://publicationethics.org/facilitation-and-integrity-subcommittee which I will do asap.
Click to expand...
Didn't they do a little clean-up recently precisely on the justification of removing reviews that are not current, there was one for Chinese herbs or something like this. What sense does it make to keep a review published that is explicitly marked as out-of-date? Makes no sense.

It even says mandatory use of GRADE. Again with the optional requirements, same as BMJ excusing pre-registration and other lapses in Crawley's research, all supposed to be "zero tolerance".

Rules are just words when authorities tasked with enforcing them simply refuse. The whole system works by relying on a set of rules that guarantee that this kind of extreme bias does not occur. And yet HERE WE ARE. The people pushing this BPS ideology are willing to basically cripple the safety and effectiveness of all of medicine simply so their ideology remains there, even if not doing anything but being there, blocking the way.
 
rvallee said:
Didn't they do a little clean-up recently precisely on the justification of removing reviews that are not current, there was one for Chinese herbs or something like this. What sense does it make to keep a review published that is explicitly marked as out-of-date? Makes no sense.

It even says mandatory use of GRADE. Again with the optional requirements, same as BMJ excusing pre-registration and other lapses in Crawley's research, all supposed to be "zero tolerance".

Rules are just words when authorities tasked with enforcing them simply refuse. The whole system works by relying on a set of rules that guarantee that this kind of extreme bias does not occur. And yet HERE WE ARE. The people pushing this BPS ideology are willing to basically cripple the safety and effectiveness of all of medicine simply so their ideology remains there, even if not doing anything but being there, blocking the way.
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Yes, they had a clean up of out of date reviews, including the chinese herbs one, and then changed the policy so now they don't have to bother. See my comment and reply on the CBT review about this

My comment
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The reply

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Trish said:
That added note 'it should not be used for clinical decision making' looks like a useful step forward
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I agree. Well done Caroline!
Trish said:
That added note 'it should not be used for clinical decision making' looks like a useful step forward, @Caroline Struthers. It makes nonsense of the review still existing at all, since I assume Cochrane reviews are supposed to be 'useful for clinical decision making'.

Thanks for your perseverence.
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Yes I also think that this extra sentence would be useful. Really hope they will do it.

Thanks @Caroline Struthers
 
I see that the extra line has now been added to the review:
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2

The editorial note now reads:
This 2008 review predates the mandatory use of GRADE methodology to assess the strength of evidence, and the review is no longer current. It should not be used for clinical decision‐making. The author team is no longer available to maintain the review.
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Thanks again @Caroline Struthers

I wonder if you might like to bring this to Busse’s attention @Michiel Tack.

[edited to correct link]
 
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Code: 
https://twitter.com/hildabast/status/1367212643275055105

Not sure if the note with a link to the statement of the EiC actually is a 'statement'?

"A statement from the Editor in Chief about this review and its planned update is available here: www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome ."

That note obviously doesn't sound if there were serious issues with the current review.

So why should busy people click on that link if they notice it at all?

(Edited for clarity.)
 
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From https://www.cochranelibrary.com/cds....CD003200.pub8/related-content?cookiesEnabled

Cochrane UK continually checks guideline developers' websites to identify guidelines informed by Cochrane Reviews. Links to guidelines are provided if available, although access will depend on the provider.

Clinical Knowledge Summaries: Tiredness/fatigue in adults
National Institute for Health and Care Excellence
Publication date: March 2020
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Can't access the Clinical Knowlege Summaries from outside the UK. Anyone aware of how they refer to the Cochrane review?

Tagging @Keela Too @adambeyoncelowe @saranbonser in case this is relevant for your work.
 

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Jason Busse
@JasonWBusse
Replying to @MTackCVS and @RemediesPodcast
I'm happy to look into it further, but as the review has not been retracted it seems that Cochrane is standing behind the conclusions.
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yes well it took the Lancet 12 years to retract the Wakefield paper (2010), which btw is not mentioned by Cochrane in their systematic review of MMR in 2005.

Also re NICE and the ME/CFS guideline, from what I have read, they did a much more thorough search than any of the Cochrane CFS exercise reviews.

You can't properly assess the evidence if half of it is missing.
 
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