when I click on this link it says the url doesn’t work or petition has been removed by creator etc
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
- Thread starter Hutan
- Start date
when I click on this link it says the url doesn’t work or petition has been removed by creator etc
The link is still good for me.
Andy
Retired committee member
Can't explain that as it works for me as well.
Thanks to the Norwegian ME Association chapters in Vestland, Buskerud, Troms, Vest Agder and Aust Agder for signing the letter!
Takk!
Takk!
Andy
Retired committee member
8,514 signatures at time of posting.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Thanks Norwegian ME Association chapter in Vestfold for supporting the letter!
Andy
Retired committee member
8,597 signatures at time of posting.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Andy
Retired committee member
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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.
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.
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
____________________
________________
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
____________________
cassava7
Senior Member (Voting Rights)
It seems that Hilda Bastian is no longer on board?
“A former member of staff helped to set up the Independent Advisory Group, which is now self-managing.”
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?
__________
Last edited:
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:
_______________
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.
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?
Cochrane said:
5. The planned delivery time of the new review was early 2022. What is the new planned delivery time?
Cochrane said:
6. We understand Rachel Marshall left Cochrane last year. Who is her replacement as the 'Exercise therapy for ME/CFS' review update project manager?
__________________Cochrane said:
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.
Last edited:
Ash
Senior Member (Voting Rights)
Peter T
Senior Member (Voting Rights)
It seems to me that Cochrane’s reply, yet again not signed by a named officer, only attempts to address two questions, the first to which they reply effectively that they will not withdraw the 2019 redraft for the foreseeable future, if ever, and the sixth to which they respond they are not appointing a new review update project manager.
The statement “The 2019 version of the review has undergone thorough editorial scrutiny and the matter is closed” gives us no indication of whether this was the previous editorial scrutiny that led to the publication of the 2019 redraft and the associated attached note, or if there has been a more recent ‘scrutiny’, possibly in response to our current round of communication. So we are left with no idea if there has been any editorial examination of the issues we raised or who was involved with any decision making in relation to this.
Previously Cochrane has declined to respond to serious concerns about the 2019 redraft on the grounds that such is to be dealt with by the independent advisory group, whereas this letter now seems to say this is not the case: “The Independent Advisory Group is seeking to address questions beyond the scope of the 2019 review”.
Finally, I feel the sentences “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?” at the same time as providing no indication as to how we can contact that group, is basically saying ‘we have no interest in what you have raised and we are not going to address any of the substantive issues so go away’.
Note: ‘the coming weeks’ seems to be an elastic term as it has been used by Cochrane about this anticipated update in previous communication some weeks ago.
