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

Barry · Nov 8, 2024

Trish said: ↑

You're right, @Barry.

We pointed all this out to Cochrane in our letter on harms sent on 17th March 2024.

And still we wait.
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Thanks @Trish, yes I'd forgotten that. Very, very good.

Trish · Nov 9, 2024

Since it's a year since the Hilda briefly resumed reporting on the stalled new review process, I've marked the occasion by posting the following on Hilda's talk page:
https://hbprojecttalk.wordpress.com...hash=d0298d778c335f5253d6c02f70fd6677#respond

trishrhymes
November 10, 2024 at 6:02 am

Your comment is awaiting moderation.

Hello Hilda,

Given that I already have 3 post awaiting your moderation decision, and nothing has been posted here for 3 months, I have no idea whether this page is still functioning.

However, …

Exactly a year ago you posted your first update for over 2 years on the Cochrane website:

https://community.cochrane.org/orga…older-engagement-high-profile-reviews-pilot-3

Among other things, you said:

As completing the review will take time, the joint Cochrane/IAG meeting discussed a proposal from a member of the IAG for adding a revised editorial note. Some uses of the Cochrane review do not reflect critical nuance and limitations in its conclusions, and the goal of a note would be to try to reduce such misinterpretation. There was unanimous agreement to this step, and the IAG has begun drafting a proposal for the editors’ consideration.

Is this going to happen?

You also said:

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. Then it will go to peer reviewers, some of whom will be proposed by the IAG. Responses to peer review will also be considered by the IAG.

It will be the version after all that review that will be released as a preprint. We will use our experience with the first consultation to seek, analyse, and report on feedback to the protocol. The consultation period is currently planned to be six weeks after the preprint of the protocol is released. Providing written comments won’t be the only mechanism for discussing the protocol, and we’ll let you know about other opportunities.

Please can you tell us what stage that process has reached.

In your report on 20th December 2023
https://community.cochrane.org/orga…older-engagement-high-profile-reviews-pilot-4

you said:

The revised editorial structure to support this review has taken shape. I expect details will be finalised by my next report, including a preliminary timetable.

We also plan to get the IAG’s first consultation underway in the early weeks of the new year.

Please could you tell us why this hasn’t happened.

On complaints, you said there is a new structure for handling complaints, and added:

We agreed on pathways for referring complaints, along with continuing liaison. This should improve responsiveness in future.

I recognise the handling of complaints is not your direct responsibility, but you may be able to tell us more about what is happening with S4ME’s complaints. All we’ve heard from Cochrane is that they still haven’t finished considering our complaints. No idea of timescale, nor of which complaints they are considering.

Can you share any news on the S4ME complaints?

And finally…

When do you envisage the new review will be published?

Thank you,

Trish Davis
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NelliePledge · Nov 13, 2024

The total is now 12329 an increase in signatures over the last few days. Thanks for those who have shared or reshared the link. Just a reminder that due to the way social media algorithms work your posts don’t always show up for followers or friends so regular or occasional reposting can help.

NelliePledge · Nov 17, 2024

Petition total is now 12554

thanks to all who’ve contributed to this recent flurry. I think it seems likely to be down to posts on Bluesky getting shared and possibly people there hadn’t seen it on other social media. Also possibly as time goes on more Long COVID people are becoming more aware of ME/CFS.

NelliePledge · Dec 10, 2024

Petition total is now 12728. If you have a blog or social media account- especially on Bluesky where you could be reaching new people please consider giving the petition a mention in any posts for the New Year.

Yann04 · Dec 16, 2024 at 2:33 PM

This post has been copied and some following posts moved from
Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

From Todd Davenport on Bluesky:
The author team received word today that Cochrane will not accept the protocol we submitted to update the 2017 review on exercise therapy for ME/CFS. To say the very least—a disappointing development for people living with ME/CFS and the state of the science.

https://bsky.app/profile/sunsopeningband.bsky.social/post/3ldg2gcofh22d

Trish · Dec 16, 2024 at 11:27 AM

I'm beyond words shocked by this. Cochrane have had the draft protocol for nearly 2 years and now this! No wonder things had gone so quiet in the last year. I hope the author team will publish the draft protocol themselves and Cochrane's explanation of the rejection.

Peter Trewhitt · Dec 16, 2024 at 11:41 AM

Yann04 said: ↑

Feel free to move if this is wrong thread.

From Todd Davenport on Bluesky:
The author team received word today that Cochrane will not accept the protocol we submitted to update the 2017 review on exercise therapy for ME/CFS. To say the very least—a disappointing development for people living with ME/CFS and the state of the science.

https://bsky.app/profile/sunsopeningband.bsky.social/post/3ldg2gcofh22d
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Well it is now beyond doubt that once they failed to withdraw the flawed and dangerous exercise review with instead the publication of the 2019 fudged redraft that Cochrane never intended to act honestly or in the interest of science.

Sasha · Dec 16, 2024 at 12:01 PM

Will the IAG have been involved in the decision to reject the new protocol?

Peter Trewhitt · Dec 16, 2024 at 12:12 PM

Sasha said: ↑

Will the IAG have been involved in the decision to reject the new protocol?
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I guess we may never know unless members of the IAG break their silence and presumably their confidentiality agreement. It is not clear if the IAG ever had a full complement or had any regular meetings or if Cochrane allowed them to do anything.

Given this whole process from the Writing Group to the IAG was launched as a radical new approach to patient involvement Cochrane is behaving in a contemptible fashion.

Trish · Dec 16, 2024 at 12:17 PM

I wonder whether the protocol ever even reached the IAG for comment. The procedure set out by Cochrane had their editors and reviewers getting first comments. And rejection sounds very final. Not just asking for changes, rejection. Maybe Garner or someone else of that ilk was a peer reviewer.

If it's just straight rejection, what now. Does the whole process get abandoned? If so, that releases the IAG from any obligations to confidentiality ethically if not according to Cochrane.

So many questions. Will Hilda do an update about it? Will the Editor in Chief make an announcement?

Trish · Dec 16, 2024 at 12:20 PM

Quoting from the letters thread:

Science For ME said: ↑

Following committee agreement with support from a vote by voting members, the following letter has been sent by email to the members of the Cochrane ME/CFS Independent Advisory Group:

Dear [IAG member]

We are writing to you on behalf of the committee and members of the Science for ME international forum. Following concerns raised on the forum, we’re contacting you in your capacity as a member of the Cochrane ME/CFS Independent Advisory Group to ask you to call for the immediate removal of the Larun et al. 2019 Cochrane review ‘Exercise therapy for chronic fatigue syndrome’ and all earlier versions.

As you will know, the review concluded, ‘Exercise therapy probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies. The evidence regarding adverse effects is uncertain.’ But critics immediately pointed out serious problems with the review’s methods and the low quality of the studies involved, and Cochrane’s editor-in-chief promised a new review with new methodology. Cochrane said it would commission a new review for completion within two years.

In August 2023, after four years with no sign of a new review, our Science for ME committee wrote to Cochrane asking them to withdraw the Larun et al. review. Our letter was supported by over 70 organisations and the accompanying petition by over 12,600 people, but Cochrane did not address our request and did not take down the review.

Since the review was published, government organisations such as the UK's NICE and the USA's CDC have carried out unbiased reviews showing no evidence that exercise therapy is effective for ME/CFS, and there have been widespread reports of people with ME/CFS becoming much more sick and disabled after graded exercise therapy. Science for ME wrote to Cochrane about this evidence on harms in March 2024, but had no response.

While the Larun et al. review still stands, it is influencing clinical practice worldwide, with serious risk of harm to people with ME/CFS. Cochrane seem to think that the weak review should stay in place until another Cochrane review replaces it, no matter how many years that takes or how many patients’ lives are ruined by the potentially dangerous therapy that it supports.

We don’t. This is why we are asking you, and all IAG members, to call on Cochrane to remove the Larun et al. 2019 review and all its earlier versions immediately. Cochrane have been deaf to the thousands of patients outside their organisation: but they might listen to you. We hope you will take action.

Yours sincerely,

Peter Trewhitt and Trish Davis on behalf of the members and committee of the Science for ME international forum
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Yann04 · Dec 16, 2024 at 12:25 PM

Based on the outrage following the news of the protocol being rejected, I think it’s a good time to share the petition on aocial networks again.

I shared it on bluesky following Todd’s accouncment and the post has been getting lots of reposts.

Binkie4 · Dec 16, 2024 at 12:27 PM

Great letter. Thanks so much to @Peter Trewhitt and @Trish Davis for doing this.

Trish · Dec 16, 2024 at 12:30 PM

Petition now at 12,749 signatures.

It becomes even more vital that the 2019 review is withdrawn now that we have the shocking news that Cochrane have rejected the draft protocol for the new review.

Sasha · Dec 16, 2024 at 12:43 PM

Trish said: ↑

Quoting from the letters thread:
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Did that just go today?

Trish · Dec 16, 2024 at 12:49 PM

Sasha said: ↑

Did that just go today?
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A couple of days ago. A bit later than planned due to health etc.

Medfeb · Dec 16, 2024 at 1:06 PM

Here's the email from Cochrane

Peter Trewhitt · Dec 16, 2024 at 1:09 PM

Medfeb said: ↑

Here's the email from Cochrane
View attachment 24515
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So this is abandoning the whole reviewer process indefinitely

Sasha · Dec 16, 2024 at 1:10 PM

'Producing a meaningful update is not a priority based on insufficient new research'?

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.

This is outrageous. They should have withdrawn the poor review immediately. Now they're abandoning the process entirely.

What have our charities done about the situation so far? And the APPG?

Does Cochrane really answer to no one?

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

Barry Senior Member (Voting Rights)

Trish Moderator Staff Member

NelliePledge Moderator Staff Member

NelliePledge Moderator Staff Member

NelliePledge Moderator Staff Member

Yann04 Senior Member (Voting Rights)

Trish Moderator Staff Member

Peter Trewhitt Senior Member (Voting Rights)

Sasha Senior Member (Voting Rights)

Peter Trewhitt Senior Member (Voting Rights)

Trish Moderator Staff Member

Trish Moderator Staff Member

Yann04 Senior Member (Voting Rights)

Binkie4 Senior Member (Voting Rights)

Trish Moderator Staff Member

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Trish Moderator Staff Member

Medfeb Senior Member (Voting Rights)

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Sasha Senior Member (Voting Rights)

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

Barry Senior Member (Voting Rights)

Trish Moderator Staff Member

NelliePledge Moderator Staff Member

NelliePledge Moderator Staff Member

NelliePledge Moderator Staff Member

Yann04 Senior Member (Voting Rights)

Trish Moderator Staff Member

Peter Trewhitt Senior Member (Voting Rights)

Sasha Senior Member (Voting Rights)

Peter Trewhitt Senior Member (Voting Rights)

Trish Moderator Staff Member

Trish Moderator Staff Member

Yann04 Senior Member (Voting Rights)

Binkie4 Senior Member (Voting Rights)

Trish Moderator Staff Member

Sasha Senior Member (Voting Rights)

Trish Moderator Staff Member

Medfeb Senior Member (Voting Rights)

Peter Trewhitt Senior Member (Voting Rights)

Sasha Senior Member (Voting Rights)

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