S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

PETITION UPDATE

Cochrane abandons the replacement review
19 Dec 2024


Cochrane cancels the review update

A year after Hilda Bastian's last update from the Independent Advisory Group, and months after she last responded to any posts on her talkpage, Cochrane has made the following announcement:

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Cochrane's Update on ‘Exercise therapy for chronic fatigue syndrome’

Monday, December 16, 2024

"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."

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Sadly, we are not at all surprised by Cochrane's reneging on their promise of a new updated review while they leave the 2019 review in place. They are clearly influenced by some of their leaders who are well known to support the psychobehavioural view of ME/CFS. No prospect of a new Cochrane review makes removal of the harmful 2019 review even more vital.

Just days before this announcement, the committee and members of Science for ME wrote to all the members of the Independent Advisory Group asking them to urge Cochrane to withdraw the 2019 review - see the letter here.

The IAG and the members of the review writing group have had their goodwill and efforts badly misused by Cochrane. We hope they will now speak publicly, urging Cochrane to act with scientific integrity and humanity by withdrawing the 2019 review.

Thanks
Thank you to all of you who have supported the campaign - we have seen a surge in petition numbers and comments lately. Please keep sharing the link. If you have contact with any funders of Cochrane, please inform them of the failure of Cochrane's quality control mechanisms.

Thanks to #ThereForME, an advocacy group calling for better care from the United Kingdom public health system for people with ME/CFS and Long Covid.
And thanks to the United Kingdom Members of Parliament in the All Party Parliamentary Group on ME. The addition of these two organisation brings the total number of supporting organisations to 79, from 25 countries.

We hope that Cochrane's abandonment of a replacement review process will allow those patient charities that were previously constrained by their involvement in the IAG to now add their names in support of the call for the 2019 review to be withdrawn.

 

PETITION UPDATE

How a review published in 2019 became a review published in 2024
24 Dec 2024

2019 or 2024?

The observant among you will have noticed that we are now calling for the Cochrane 2019/2024 review (rather than the 2019 review) to be withdrawn. The reason for the change is astonishing.

Back in 2019, the Cochrane Editor-in-Chief Dr Karla Soares-Weiser published the Larun et al review, but noted that, even after a series of amendments, it was
"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". She noted that Cochrane had decided that "a new approach to the publication of evidence in this area is needed" and announced the new review development process on this "globally important health topic". Since then, a global pandemic has resulted in a huge increase in the number of people meeting ME/CFS diagnostic criteria, surely making it an even more important topic.

As we reported in the last update, Cochrane announced that that replacement review that has been in the works for some five years would now not go ahead. The carefully selected writing team finished a protocol nearly two years ago and delivered it to Cochrane for approval. The carefully selected Independent Advisory Group was poised to provide comments on the protocol, but was never given it. Cochrane abandoned the new review process, citing "insufficient new research in the field" and "a lack of resources to oversee the work". We'll have a closer look at those reasons in the next update.

On 19 December 2024 Cochrane added a new editorial note to the 2019 review, informing readers that
" Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019."

To be clear, the 2019 review has not been changed, it has not been updated.

The only things that have changed about the 2019 review are the addition of that editorial note about the abandonment of the new review process...
... and the citation for the 2019 review.
"Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2024"
Yes, it is now a review with a 2024 publication date. It is not yet clear if the 2024 citation date is just an error, or if it was done deliberately. If an error, we expect that the incorrect date will be swiftly corrected.

The effect of a 2024 publication date is to make the review seem much more relevant than it otherwise would. The unchanged 2019 review now appears from the citation to be a fresh new up-to-date review, and indeed it has been shared on social media, probably mistakenly, as a new review. Uninformed readers will assume that it represents a distillation of the latest knowledge using the best methods, and that criticisms of the 2019 version have been fully addressed. The review, with its 2024 date, appears newer than the 2021 NICE Guidelines and Evidence Review which unequivocally warned that people with ME/CFS should not be treated Graded Exercise Therapy.

A 2024 publication date is particularly misleading as the 2019 version of the review was actually the result of a series of amendments over several years. The literature search was undertaken in 2014 and so the review contains no source material more recent than the 2011 PACE study report.

Surely this situation where an unchanged review is relabelled with a publication date 5 years after the actual publication date is preposterous and will not be allowed to stand?


Our best wishes to the supporters of this campaign
As a new year approaches, we thank you for your support and hope that 2025 brings better health, much happiness and exciting new developments in the understanding of ME/CFS.
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For discussion go to the Petition thread.

 

PETITION UPDATE

On Cochrane's excuses for scrapping the replacement review process they set up: Part 1

5 Jan 2025
People following this saga will be aware that, in December 2024, Cochrane abandoned the preparation of a replacement for the flawed 2019 Larun et al review of exercise therapies for ME/CFS. Instead, it just relabelled the 2019 review as a 2024 review, without changing a word. Job done, please move on.

Here's how Cochrane announced the decision:
"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."

So, Cochrane gave two reasons
1. a lack of resources to oversee the work of making a replacement review, and
2. insufficient new research in the field

In this update, we will consider the issue of 'a lack of resources'. We'll cover the issue of 'insufficient new research' in the next update.


An organisation providing medical advice to the world without funds for quality control processes?
In 2019 it was Cochrane who effectively said 'we know this Larun et al review isn't fit for purpose, but we're publishing it anyway. Don't all you critics of the review worry though, we'll make a new one to replace it; that should take about two years'. For five years the ME/CFS community waited more or less patiently for the promised new review. Cochrane answered criticisms of the old review with 'the new review will address any problems'. Our complaints about the Larun et al review submitted over a year ago have still not been addressed.

Let us assume for a moment that the abandonment of the new review and the inability to consider and respond to complaints about the old review is truly due to a lack of resources. Certainly Cochrane has been suffering from the withdrawal of large amounts of funding as its funders reconsider the value of its service. But, is it acceptable for a global organisation that creates medical advice to be unable to provide functioning processes for ensuring that the advice is accurate and does not cause harm?

If Cochrane really can't find resources to ensure it provides safe advice on this topic, which it noted in 2019 was of global importance and which has become even more important with the high incidence of ME/CFS following Covid-19 infections, then what other short cuts is it taking on the quality of the advice it provides?


Cochrane made things complicated
A typical Cochrane review is not a massive or particularly expensive task. It was Cochrane who decided to make this review more complicated, with its substantial writing team including Cochrane staff, and the Independent Advisory Group (IAG). Cochrane announced the new review process with fanfare, saying it was a pilot for a new era of stakeholder engagement. When exercise therapy proponents complained about the new review, Cochrane halted the work of the IAG for well over a year, then made the IAG even bigger. Rather than simply and efficiently getting on with the task, and following where the evidence, or lack of it, led, Cochrane allowed the writing of the new review to be highly politicised.

Much of the work has been done
Drafting the protocol for a review is a substantial part of the work of a review. The draft protocol for the new review was submitted to Cochrane editors two years ago. Cochrane appear to have done nothing with it, since it never reached the IAG for comment, and the author group heard no more. Cochrane could have streamlined the multistage editorial process for the protocol that they had set up, and the whole project could have been completed by now.

The costs versus the benefits
So, it seems likely that the cost of completing the review is actually relatively low. Against the low cost, the benefits of completing a good quality new review would have been substantial. Millions of people would have benefited from improved clinical guidance. Cochrane staff would not have had to deal with the ongoing global concern about the Larun et al review, concern which surely will only increase in strength and effectiveness. Cochrane and each of its staff members and the authors of the Larun at al review would have avoided ongoing damage to their reputations.

So, high benefits of completing a good quality review versus low costs. That makes us wonder, what are we missing? Is Cochrane's funding contingent on maintaining the status quo? Do personal allegiances outweigh a commitment to good science? An alternative no-cost solution would have been to withdraw the Larun review - there are good grounds to do so. Why is Cochrane so determined to maintain the Larun et al review, in the face of such substantial costs to people with ME/CFS and to itself?

Thanks
As always, we are grateful to all of you who are supporting this campaign. Please keep sharing the petition link on social media. If you have links with journalists who might be intrigued to know that Cochrane is recycling outdated reviews by simply changing the publication date, please do let them know about the story.