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

Discussion in 'Petitions' started by Hutan, Sep 4, 2023.

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Page 48 of 50

dave30th Senior Member (Voting Rights)

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2,616

Hutan said: ↑

For example, the Larun et al review was one of three references given for the Royal Australian College of GPs clinical guidance for the use of exercise therapy in CFS
Click to expand...

Likely because of Glasziou's involvmennt in both.

dave30th, Jan 5, 2025

#941

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Hutan Moderator Staff Member

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dave30th said: ↑

Likely because of Glasziou's involvmennt in both.
Click to expand...

For sure

Hutan, Jan 5, 2025

#942

alktipping, rvallee, Missense and 4 others like this.
Ash Senior Member (Voting Rights)

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1,883

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UK

Hutan said: ↑

New 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.
Click to expand...

Withering. Love it.
Many thanks folks.

Ash, Jan 5, 2025

#943

Caroline Struthers, alktipping, tornandfrayed and 8 others like this.
Andy -

Messages:

23,544

Location:

Hampshire, UK

Hutan said: ↑

New 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.
Click to expand...

Link to the update, https://www.change.org/p/cochrane-w...24-exercise-therapy-for-cfs-review/u/33143068

Andy, Jan 5, 2025

#944

Maat, alktipping, Sean and 9 others like this.
Peter Trewhitt Senior Member (Voting Rights)

Messages:

4,610

Andy said: ↑

Link to the update, https://www.change.org/p/cochrane-w...24-exercise-therapy-for-cfs-review/u/33143068
Click to expand...

The petition updates collectively constitute a valuable information resource and I was wondering how they could be shared with a wider audience. Do we need to be trying to interest journalists or to write a press release associated with some sort of virtual or real life promotional event, even if it is just presenting the petition formally to Cochrane?

Peter Trewhitt, Jan 5, 2025

#945

alktipping, Sean, Hutan and 4 others like this.
Trish Moderator Staff Member

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57,890

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UK

Peter Trewhitt said: ↑

even if it is just presenting the petition formally to Cochrane?
Click to expand...

We've already done that in one of our letters. They took no notice.

Trish, Jan 5, 2025

#946

alktipping, Sean, Hutan and 4 others like this.
Peter Trewhitt Senior Member (Voting Rights)

Messages:

4,610

Trish said: ↑

We've already done that in one of our letters. They took no notice.
Click to expand...

An impossible amount of work but if we re-present it amongst a media fanfare pointing out they did not even acknowledge the previous presentation, perhaps even simultaneously send information to every political representative we can think of and perhaps every university chancellor with staff linked to Cochrane.

Peter Trewhitt, Jan 5, 2025

#947

Chestnut tree, alktipping, Sean and 6 others like this.
Peter Trewhitt Senior Member (Voting Rights)

Messages:

4,610

Peter Trewhitt said: ↑

An impossible amount of work but if we re-present it amongst a media fanfare pointing out they did not even acknowledge the previous presentation, perhaps even simultaneously send information to every political representative we can think of and perhaps every university chancellor with staff linked to Cochrane.
Click to expand...

This hypothetical re-presentation would not be initially to elicit a response from Cochrane but to be a focus for a wider publicity campaign that hopefully would ultimately force Cochrane to react.

Peter Trewhitt, Jan 5, 2025

#948

Chestnut tree, alktipping, Sean and 5 others like this.
Hutan Moderator Staff Member

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31,334

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Aotearoa New Zealand

Peter Trewhitt said: ↑

The petition updates collectively constitute a valuable information resource and I was wondering how they could be shared with a wider audience. Do we need to be trying to interest journalists
Click to expand...

We have heard that a journalist is writing a story about the petition, although so far they have only wanted to speak with doctors, and not the petition organisers or patients. Hopefully something good will come of it.

We do need to try to interest more journalists in the story. If anyone has contacts, please reach out to them.

Hutan, Jan 5, 2025

#949

Caroline Struthers, bobbler, Chestnut tree and 9 others like this.
Ash Senior Member (Voting Rights)

Messages:

1,883

Location:

UK

Hutan said: ↑

We have heard that a journalist is writing a story about the petition, although so far they have only wanted to speak with doctors, and not the petition organisers or patients. Hopefully something good will come of it.

We do need to try to interest more journalists in the story. If anyone has contacts, please reach out to them.
Click to expand...

Is this a potentially sympathetic piece or no?

Ash, Jan 5, 2025

#950

bobbler, Chestnut tree, Missense and 5 others like this.
Hutan Moderator Staff Member

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31,334

Location:

Aotearoa New Zealand

Ash said: ↑

Is this a potentially sympathetic piece or no?
Click to expand...

I think so

Hutan, Jan 5, 2025

#951

bobbler, Chestnut tree, Missense and 5 others like this.
Yann04 Senior Member (Voting Rights)

Messages:

1,687

Location:

Romandie (Switzerland)

Hutan said: ↑

If anyone has contacts, please reach out to them.
Click to expand...

I wonder if the Sick Times would be willing to do a piece. I know they aren't an "outside the community" type of source, but I think a sympathetic piece from them could increase awareness and interest. (They have quite a large following in the LC community, good SEO, and their articles are somtimes "reposted" (syndicated?) by bigger sources).

Yann04, Jan 5, 2025

#952

rvallee, Sly Saint, bobbler and 11 others like this.
Maat Senior Member (Voting Rights)

Messages:

647

Location:

England, UK

Andy said: ↑

Link to the update, https://www.change.org/p/cochrane-w...24-exercise-therapy-for-cfs-review/u/33143068
Click to expand...

This is impressive work and invaluable evidence.

Maat, Jan 6, 2025

#953

Sean, alktipping, bobbler and 6 others like this.
Chestnut tree Senior Member (Voting Rights)

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240
Cochrane and membership

Since 2017 Cochrane is a membership organization.

Who can become members?

1 Staff members in certain roles

2 Authors of published contributions

3 Patients/carers/family

If we zoom in on groups 2 the authors, the authors become members after these activities; here are a few examples

publish Cochrane protocol/ peer review

Peer review protocol/ review

Group 1 the employees of Cochrane that can become members are:

Board and Council members

Group staff of all Cochrane Groups and Networks

Editors of Cochrane groups

Translation project managers

Executive group members

Methods group convenors

Members of Scientific committees, Handbook editorial teams, Funding Arbiter panel

Central Executive Team members

What are the benefits of a membership

Voting rights in organisationa elections and internal governance and strategy

Hypothetically does this mean that as a publisher of a review you can also vote in for your own review as a member?

Even if not, is it a good idea as an organization to have such close ties with researchers and authors? Does this not interfere with objectivity?

Does this structure lead to the situation we are now in?

https://www.cochrane.org/old/join-cochrane/cochrane-membership-thresholds#tasks

https://www.cochrane.org/old/join-cochrane/cochrane-membership-thresholds#roles
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Chestnut tree, Jan 6, 2025

#954

Sean, alktipping, Ash and 4 others like this.
NelliePledge Moderator Staff Member

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You join as a supporter, take part in activities through Cochrane engage earn 200 points per activity, on 1000 points you become a member and supposedly there’s some voting involved. So you have to do at least 5 activities, I think this is an unreasonable hurdle for participation of chronically ill people. Otherwise I would be suggesting we all join up.

NelliePledge, Jan 6, 2025

#955

Chestnut tree, Missense, Sean and 6 others like this.
bobbler Senior Member (Voting Rights)

Messages:

4,412

NelliePledge said: ↑

You join as a supporter, take part in activities through Cochrane engage earn 200 points per activity, on 1000 points you become a member and supposedly there’s some voting involved. So you have to do at least 5 activities, I think this is an unreasonable hurdle for participation of chronically ill people. Otherwise I would be suggesting we all join up.
Click to expand...

I don’t know … is one of the eligible activities sending them emails or petitions?

bobbler, Jan 7, 2025

#956

Ash, Hutan, Missense and 2 others like this.
NelliePledge Moderator Staff Member

Messages:

15,589

Location:

UK West Midlands

bobbler said: ↑

I don’t know … is one of the eligible activities sending them emails or petitions?
Click to expand...

I didn’t look into the details

NelliePledge, Jan 7, 2025

#957

Missense, Peter Trewhitt and bobbler like this.
NelliePledge Moderator Staff Member

Messages:

15,589

Location:

UK West Midlands

The petition total is currently at 14,123

NelliePledge, Jan 7, 2025

#958

Sean, Yann04, oldtimer and 7 others like this.
Andy -

Messages:

23,544

Location:

Hampshire, UK

Andy said: ↑

Link to the update, https://www.change.org/p/cochrane-w...24-exercise-therapy-for-cfs-review/u/33143068
Click to expand...

Social media posts for the update.

Bluesky: https://bsky.app/profile/scienceforme.bsky.social/post/3lf5e27ific2g

Facebook: https://www.facebook.com/sci4me/pos...ncusSqyZu7y2mXzZyrG778sScAfSfLBPonVSaEzpWZpKl

Mastodon: https://med-mastodon.com/@s4me/113786403430712341

Twitter:

https://twitter.com/user/status/1876563868413296980

Click to expand...

Andy, Jan 7, 2025

#959

Amw66, Binkie4, Sean and 6 others like this.
Maat Senior Member (Voting Rights)

Messages:

647

Location:

England, UK

Bearing in mind the fact that Cochrane re-dated the review within the 56 day response time to the Coroner's Regulation 28 Prevention of Future Deaths report dated 7 October 2024, is this the reason:

Severe Chronic Fatigue Syndrome (CFS/ME): Recovery is Possible - Lucy Burley, Diane L Cox, Leslie J Findley, 2007

Abstract
The recovery of individuals with very severe chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) is possible with successful multidisciplinary management. This case vignette aims to highlight the beneficial outcome of using occupational therapy lifestyle management and the Canadian Occupational Performance Measure to identify perceived problems in occupational performance and indicate change. The current management strategies in CFS/ME are discussed briefly and the challenges of the management of severe CFS/ME are described, indicating a need for a supportive team and specialist inpatient services.

In 2003, the Department of Health released funds in England to develop more widely accessible CFS/ME services. This case study illustrates a positive outcome for one individual with severe CFS/ME, following admission to a specialist inpatient facility. It is hoped that it may aid other therapists working with and developing services for people with severe presentations of CFS/ME.
Click to expand...

Some of the reference links don't work and I don't have access to the full case report. In fact most of the Occupational Health stuff I've tried to find over the last few weeks is not open access or just no longer on the internet.

Maat, Jan 10, 2025

#960

Ash, Binkie4, Lou B Lou and 2 others like this.

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