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

Thank you very much to Millions Missing Belgique, a World ME Alliance member, for supporting the open letter and promoting the petition.

 

Thanks to the Norwegian ME Association chapters in Vestland, Buskerud, Troms, Vest Agder and Aust Agder for signing the letter!

Takk!

 

Thanks Norwegian ME Association chapter in Vestfold for supporting the letter!

 

Latest update on the petition:



OCT 18, 2023 —

On the 8th October, we sent a letter to Catherine Spencer, Chief Executive of Cochrane. You can find a copy of the letter here.

In the letter, we noted the multiple letters sent in this campaign, as well as the years of effort from advocates. We noted that our arguments have been found to be accurate by agencies such as NICE and the CDC when they have examined the evidence base for exercise therapy for ME/CFS. We noted that the Editor of Cochrane, Dr Soares-Weiser, had acknowledged that the 2019 review required replacement at the time it was published.

We noted this petition with its many testimonies of harm. We noted the, at the time, 40 organisations from all around the world that were supporting the call for the immediate removal of the problematic review.

As of the 18th October, we have had no reply. Advocates have tried in multiple ways over multiple years to engage with Cochrane, and still that review remains in place, propping up clinical guidelines that are simply wrong.

The quality control systems in Cochrane appear to be broken. That is a major problem for an organisation claiming to offer gold-standard information on health care. Cochrane is ignoring the global community of patients and their organisations, it is ignoring credible agencies that also found that exercise therapy does not work. It is ignoring the obvious flaws of the 2019 review, and the obvious flaws of the trials that the review attempted to summarise.

This is despite Cochrane announcing in 2022 that it has a 'bold new framework for consumer engagement and involvement'. Cochrane claims to have a commitment to the implementation of public involvement called "Putting People First". It aimed to have a mechanism to "ensure Cochrane's work in engagement and involvement is evidence based, and to monitor and evaluate the impact of its work". There is little evidence of these aims being anything more than platitudes when it comes to the 2019 Exercise Therapy for CFS Review.

********
Since our last update, another seven organisations have added their names in support of the campaign. Many thanks to these organisations from Norway and Belgium.
ME Foreningen Vestland
ME Foreningen Buskerud
ME Foreningen Troms
ME Foreningen Vest Agder
ME Foreningen Aust Agder
ME Foreningen Vestfold
Millions Missing Belgique

You can find the list of the now 48 ME/CFS and Long Covid organisations supporting the campaign here. If you know of an organisation that might like to support the letter, please contact us or have the organisation contact us at moderators@s4me.info.

 

It's terrific that RME Sverige (Sweden) is supporting the campaign. Thank you.
Thanks also to the advocates that made that happen.

49 organisations.

 

The forum committee received a reply today, posted on the letters thread and copied below so members can discuss it.
________________


Thank you for your email.

The 2019 version of the review has undergone thorough editorial scrutiny and the matter is closed.

For any new concerns about this topic, the process is to pass them to the Independent Advisory Group to inform their work. Please could you confirm if you are happy for us to share this correspondence with them so they can take your requests into consideration?

The Independent Advisory Group is seeking to address questions beyond the scope of the 2019 review, and we hope to share a progress update from them in the coming weeks.

Cochrane does not have the resource to hire project managers for individual reviews. A former member of staff helped to set up the Independent Advisory Group, which is now self-managing.

Kind regards,
Office of the Editor in Chief

____________________

 

No, that's a reference to Rachel Marshall, see Question 6 below:


The above was a reply to our questions in the letter we sent 10 days ago:
_________

1. Will the 2019 Larun review that Dr Soares-Weiser acknowledged was flawed four years ago be removed immediately?

2. If not, why not?

3. Who has the authority and responsibility to remove a Cochrane review that has been shown to be inaccurate and harmful?

4. Do you understand the harm that the ongoing hosting of the 2019 Larun review is causing people with ME/CFS and Long Covid?

5. The planned delivery time of the new review was early 2022. What is the new planned delivery time?

6. We understand Rachel Marshall left Cochrane last year. Who is her replacement as the 'Exercise therapy for ME/CFS' review update project manager?
__________

 

So to clarlfy: Here are our questions, with Cochrane's answers in quote boxes:

1. Will the 2019 Larun review that Dr Soares-Weiser acknowledged was flawed four years ago be removed immediately?
2. If not, why not?
3. Who has the authority and responsibility to remove a Cochrane review that has been shown to be inaccurate and harmful?
4. Do you understand the harm that the ongoing hosting of the 2019 Larun review is causing people with ME/CFS and Long Covid?

5. The planned delivery time of the new review was early 2022. What is the new planned delivery time?

6. We understand Rachel Marshall left Cochrane last year. Who is her replacement as the 'Exercise therapy for ME/CFS' review update project manager?

__________________

To explain the last part:
From this document published on the Cochrane website:

[Edit: Rachel Marshall left Cochrane in July 2022]
_______________

My comments are unprintable, but here's the polite version:

So basically they are digging their heels in on the 2019 review, neither understand nor apparently care about ongoing harm, no longer providing editorial project management and seem to have washed their hands of any supervisory role, passing it all to Hilda or whoever is running or not running the IAG. I think we've been stitched up, by forces guessed but unknown.
I personally think it's time someone from inside the process started blowing whistles.
___________

We will be responding.

 

Spoiler: Post your queries to the IAG here