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

Sasha said:
'Producing a meaningful update is not a priority based on insufficient new research'?
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Sasha said:
After Cochrane's editor-in-chief admitting to the shortcomings of the Larun review, it doesn't matter whether new research has come out or not.
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Exactly. From the the IAG website:

FAQs last updated 10 November 2023

Why is the review being updated?
Cochrane reviews can be updated because a review’s methods or included evidence may be out of date, or in response to concerns. This review is being updated for all those reasons.

Cochrane’s Editor in Chief, Karla Soares-Weiser, considered the range of concerns expressed about this review and concluded it needs a patient-focused, contemporary perspective on exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The current review was amended in 2019, but still approaches the issue with a research question and a set of methods from the early 2000s, reflecting evidence from studies that applied definitions of ME/CFS from the 1990s. In addition, the results of any relevant studies available after May 2014 are not included.
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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 .


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I wonder what they will do about the S4ME complaints. Time for another one, if only any of us had the energy to compose and submit one to both Cochrane and the Charity Commission. I think I've reached the end of the road with composing letters to Cochrane. It's taken too much out of me. This feels like the final blow. I hope others will take action.
 
Peter Trewhitt said:
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.
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As Trish suggested, I have also emailed
Cochrane.IAG@gmail.com

Re the future of the IAG

I am emailing here as I don’t know if Hilda’s related Blog page is still operating. I posted this today but my last comment has been sitting in moderation for some months:

Peter T
December 17, 2024 at 12:39 am
Your comment is awaiting moderation.

Hilda I understand that Cochrane have decided to abandon indefinitely the new exercise review process and that the writing group has been dismissed.

Can you confirm how long you have know about this, say whether or not this releases the IAG group from any obligation of confidentiality and let us know if you will now support the withdrawal of the flawed 2019 version?

Please can the IAG issue some statement about what has happened in addition to the information being released from the writing group. Also will the IAG take a position on withdrawing the flawed 2019 review given you were set up to help develop its replacement given the serious issues apparent even when it was published.

With thanks
Peter Trewhitt
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Did get an automated reply under the name Hilda Bastian

Thank you for your interest. You may not get a reply immediately,

but we will read your message soon.This email address

is not monitored by a member of Cochrane's staff. It is an account

for Cochrane's independent advisory group (IAG) on the ME/CFS and exercise

review, and may not be checked every day.
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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:
Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser, commented on the publication of the review, “Cochrane recognizes the importance of providing the best available evidence on interventions for ME/CFS to enable patients and clinicians across the world to make well-informed decisions about treatment. This amended review is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s. Having heard different views expressed about the evidence base for this condition, we acknowledge that the publication of this amended review will not resolve all the ongoing questions about this globally important health topic.

“We have decided, therefore, that a new approach to the publication of evidence in this area is needed; and, today we are committing to the production of a full update of this Cochrane Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene.
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So now after 5 years they argue that a new review is not a priority because there there is insufficient new research:
The outcome is that Cochrane has decided not to proceed with an update. Producing a meaningful update of this review is not a priority based on insufficient new research in the field and the available organizational resources to oversee this work.
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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.
 
Trish said:
I wonder what they will do about the S4ME complaints. Time for another one, if only any of us had the energy to compose and submit one to both Cochrane and the Charity Commission. I think I've reached the end of the road with composing letters to Cochrane. It's taken too much out of me. This feels like the final blow. I hope others will take action.
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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?
 
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.
 
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