Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

https://community.cochrane.org/orga...nt-high-profile-reviews-pilot-3#Consultations

In November 2023
"The first draft of the protocol is currently with the Cochrane Editorial Unit, and the editors are planning the next steps for the project. Once they sign off on a protocol, the IAG will be reviewing it"

 

https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot

So from "high profile" it's gone to "not a priority" in five short years

 

So it looks as if the role of the Independent Advisory Group was to cover Cochrane's back while they decided what to do.

 

Thank you @Medfeb for the email.

 

One for Monbiot perhaps

 

Exactly. From the the IAG website:

So new research was seen as an issue only "in addition".

Full transparency of who's responsible for the rejection of the protocol and this outcome's spurious 'explanation' I think is a legitimate request .


Edit: quote

 

I have just commented on Hilda’s blog page, but given she has not allowed anything through moderation for some months now, I would not be surprised if that page now disappears.

Here is our thread on Hilda’s blog which was the only public means of communicating with Cochrane or the IAG, but that has been inactive for some months.

 

As Trish suggested, I have also emailed
Cochrane.IAG@gmail.com

Did get an automated reply under the name Hilda Bastian

As this system seems to have been set up by Hilda outside the Cochrane website and email system, perhaps she had started with the intent of genuine consultation but that seems to have faded away.

 

Wiley are now investigating my allegation of misconduct about the Editor in Chief of Cochrane Library as Cochrane themselves refused to investigate. So at least that's still live(ish). I am planning to do a summary/timeline of everything that's happened since I first complained about the Exercise Review to the Cochrane governors in 2018.

 

Before 2019 ME/CFS patients simply pointed out problems with the Larun et al. review and asked for these to be corrected or withdrawn. As far as I can remember it was Cochrane itself that came with the initiative of writing a new review using a new protocol.

Here's what they said in 2019:

So now after 5 years they argue that a new review is not a priority because there there is insufficient new research:

That seems like quite a contradiction. I think it will be hard to give a plausible explanation to this other than outside influence who did not want the tables to turn in the direction they were turning...

Quite disrespectful to the people in the ME/CFS community who worked on this as part of the author team or IAG.

 

In an ideal world, who would a new complaint come from? Are they most likely to listen to the Charity Commission? Our charities? The APPG?

 

Sorry I'm not up on the history of this - did S4ME send any complaints about the Larun review to the Charity Commission? If so, is there a link to what we sent?

 

Another Cochrane email from exerciseforme-cfsupdates@cochrane.org pointing to this page on their site
https://www.cochrane.org/news/update-exercise-therapy-chronic-fatigue-syndrome

Update on ‘Exercise therapy for chronic fatigue syndrome’

In 2019, Cochrane published an amended version of the review 'Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention to further update the review. Due to insufficient new research in the field and a lack of resources to oversee this work, the update will not be proceeding.

In 2019, Cochrane published an amended version of the review 'Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention to further update the review. Due to insufficient new research in the field and a lack of resources to oversee this work, the update will not be proceeding.

Any feedback on this decision should follow Cochrane’s established complaints process. Any correspondence sent directly to individuals at Cochrane will not be considered.

Monday, December 16, 2024​

 

If only they would withdraw the old exercise review, I have no problem with Cochrane abandoning any replacement. The 2019 version was flawed and out of date when it was published and has been superseded by the NICE ME/CFS guidelines with its evidence review already in draft by the time Larun et al was published.

Though obviously Cochrane have no intention of withdrawing the 2019 review, their decision not to go ahead on a new review must seriously weaken their arguments for keeping it.

Hopefully @dave30th will have a blog on this relatively soon.