2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

Cochrane are barely even pretending, are they.

Can Cochrane be sued over this (for negligence and harm, maybe misleading advertising as the definitive authoritative source of clinical reviews)? Particularly in the UK.

 

I am very pleased to see the IAG writing such comprehensive criticisms. Most of the points they make we have already made and been brushed away with scrappy little unsigned rejections. I hope Cochrane take more notice of the IAG.

 

I am so impressed and grateful to Hilda and the IAG members for their letter and comment. I hope the people at Cochane who made the decisions over the last 2 years are feeling ashamed. Though I suspect they are are still in self righteous mode, given their rubbish and unsigned responses to complaints.

 

“Mere factual innocence is no reason not to carry out a death sentence properly reached.”

— US Supreme Court Justice Antonin Scalia

 

A new thread on the draft protocol comment survey has been created in the advocacy subforum:
Survey on the draft protocol for the cancelled update of the 2019 Cochrane ME/CFS Exercise Review

 

Regarding the writing team. I haven't got through all of the protocol, but, although I have some reservations, its looking pretty good so far. I think it's interesting though to see who is left standing for moving things forward.

I'm not surprised that the Cochrane staffers aren't there, as I guess it was just a job for them and they have moved on to other things.

One of the patient reps who some of us had reservations about is no longer involved - perhaps her health has worsened, of course I don't know her reasons for her not continuing to be involved. Julia Newton (who some of us had reservations about) is also no longer involved.

So, anyway, thanks to Mary and Todd for choosing to put their heads above the parapet and trying to move things forward.

 

The recent letter from the IAG does say 'including....' and mentions 9 people. I think that must be most of the IAG members. I lost track of the members, maybe the list is missing a couple of people?

 

On 5th February 2025 the S4ME committee submitted a detailed set of complaints to Cochrane related to their actions in December 2024.
We received the decision on our complaints on 3rd March 2025.

The committee have today submitted a formal appeal.

Spoiler: S4ME committee appeal submitted to Cochrane 24th March 2025

Formal appeal to decision regarding complaint #COMP00195461

This appeal is in two parts:

Appeal March 2025/1:
Failure to respond appropriately to the part of #COMP00195461 that is addressed in the response, namely the creation of a new citation.

Appeal March 2025/2:
Closing the complaint without any action resulting from investigation, and failure to inform us of the outcome of any of the other major parts of complaint #COMP00195461
_______________

Appeal March 2025/1:

Failure to respond appropriately to the part of #COMP00195461 that is addressed in the response, namely the creation of a new citation.

Complaint #COMP00195461 is divided into 5 parts. The only part addressed in the response letter is the second part of:

"Complaint 2025-1:
Creation of a new citation and publication date as a result of attaching an editorial note to an unchanged review"

Cochrane's response to this part says:

"Cochrane decided to publish the editorial note in question with a new citation to ensure discoverability of our decisions regarding this review.

This decision does not breach our editorial policy but uses operational discretion in applying the publication guidance regarding editorial notes. Neither the editorial note, nor the decision to publish it with a new citation, indicates that the 2019 version of the review has been updated in any way."

This response makes no sense to us logically, ethically or in policy or practice terms.

Previous announcements relating to the process to develop a new review set up by the Editor-in-Chief in October 2019 were made both on the Cochrane website and as published notes and amendments attached to the 2019 version, for example on 6th February 2020, shown in the version history. As far as we can see, this publicity by Cochrane achieved Cochrane's aim to: "ensure discoverability of our decisions regarding this review".

We can see no reason why the same procedure was not followed with the current editorial note, and dispute that this would not achieve the desired discoverability.

While it is true that the section we quoted in the complaint comes from editorial guidance on how to attach an editorial note, not from a policy statement on citations, it is also true, as we explained in our complaint, that it is not listed as one of the three specific reasons for creating a new citation in the editorial policy.

We note also:

"Reporting search dates in Cochrane reviews
https://training.cochrane.org/onlin...lines/reporting-search-dates-cochrane-reviews
This guidance covers the reporting of search dates in Cochrane Reviews. It is informed by guidance on re-running searches covered in MECIR conduct standard C37. This standard requires that searches for all relevant databases be run (or re-run) within 12 months before publication of the review or review update, and that the results are screened for potentially eligible studies.

For definitions of search types (full, top-up, scoping) see Table below.

1. Updates vs. amendments: a review is considered updated and receives a new citation in Cochrane Database of Systematic Reviews (CDSR) when a new search is conducted and the results of the search are fully incorporated. If a scoping search is conducted to determine if an update is required, then the date of this search will not change the 'Date of search' in the review or lead to a new citation version being created. This should be published as an amendment if necessary. See also Dates and events in RevMan Knowledge Base."

Requested actions:

Please investigate and inform us why Cochrane's policies and guidance on new citations were ignored in this instance.

Please provide us with links to any other reviews where a new publication date and citation has been created for an existing review with no change to any part of the review itself, with the only change being the addition of an editorial note [apart from a withdrawn review, as specified in the editorial policy].
__________________________________

Appeal March 2025/2:

Closing the complaint without any action resulting from investigation, and failure to inform us of the outcome of any of the other major parts of complaint #COMP00195461

Complaint #COMP00195461 was presented in 5 parts. Only the issue of the new citation is addressed. The remaining parts are not mentioned in the response. Instead the response says:

"The published review does not make any recommendations for or against exercise therapy. This is in line with our guidance which prevents Cochrane Reviews from making prescriptive recommendations about using an intervention."

This reads as a pre-prepared generic dismissal of all complaints about the review, and does not address directly any of our complaints. It sets up a straw man argument, since we never claimed that Cochrane reviews are prescriptive.

As we understand it, the purpose of Cochrane reviews is to provide the highest standard of up to date evidence synthesis for clinical interventions. Cochrane's tag line of "Trusted evidence. Informed decisions. Better health" clearly joins the dots between its reviews and their clinical use. This is illustrated by the use of the review as one of only 3 references in the RACGP, Clinical guidelines, HANDI (2024).
https://www.racgp.org.au/clinical-resources/clinical-guidelines/handi/handi-interventions/exercise/incremental-physical-activity-for-cfs-me
_________

It is clear that no action has been taken as a result of the investigation of complaint #COMP00195461. Specifically:

The 2024 version has not been withdrawn on the grounds of divergence from editorial policy on new citations and guidance on editorial notes.

The editorial note still says the publisher agreed to the editorial note being attached to the 2019 version of the review. There is no mention of the publisher agreeing to the new citation, nor to the editorial note being attached to the 2024 version.

The critical comments published by Cochrane attached to the review dated between the version publications in 2019 and 2024 that should normally be addressed before any new version was published have not been addressed.

The incorrect labels on the published comments stating that they apply to a previous version have not been removed. Nor have they been correctly labelled as unaddressed and applying equally to the 2024 version.

There has been no explanation of why it is acceptable for a 2024 review to not take into account recent relevant evidence, to not use current research methods, and to link to superseded guidelines as if they were current.

Cochrane has not published an accurate explanation of the reasons for abandoning the new protocol and updated review.

We note that the Cochrane Complaints team failed to follow its stated acknowledgement and response timeframe for our complaint, as we set out in ticket number #COMP00196686.

The response to #COMP00195461 is brief, incomplete and unsigned.

Requested actions:

Please provide responses to the individual complaints.

Please confirm that the publisher has agreed to republication with a new citation and that the publisher agreed to attach the note to that 2024 version, rather than to the 2019 version as the editorial note states.

Please investigate and inform us what happened to the 5th February submission of #COMP00195461, the 12th February query, and the lack of acknowledgement of the 20th February resubmission.

Please investigate and inform us what action was taken in response to #COMP00195461, whether the response is in fact a generic one intended for all complaints about these issues, and why it is unsigned.
_____________________

Signed Trish Davis and Maree Candish on behalf of the committee of the Science for ME forum.