Lucy Johnson-Brown Head of Governance Cochrane Central Executive Team said:
According to Wikipedia, Cochrane has partnerships such as —
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Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
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According to Wikipedia, Cochrane has partnerships such as —
Peter T
Senior Member (Voting Rights)
My joke that we would need to complain that Cochrane’s response to our complaint was in breach of their own complaints procedures was perhaps not as far fetched as I first thought.
It seems that Cochrane has decided that we are not a group that they intend to meaningfully respond to at all. This feels like a deliberate decision by senior management.
It seems that Cochrane has decided that we are not a group that they intend to meaningfully respond to at all. This feels like a deliberate decision by senior management.
It’s a good thing for them they are not a public body because mishandling a complaint counts as maladministration and can be referred to the Ombudsman. Clearly despite being largely public funded they don’t aspire to the standards of public service.
Cochrane isn’t a government department or a public body, we are a relatively small charitable organisation. It is not possible for us to do what you are asking us to.
They want the power to influence the world and our lives, in sometimes extraordinarily intrusive and potentially very destructive ways, but not the obligation for transparency and accountability for any adverse consequences of exercising that power.
No.
tmrw
Established Member (Voting Rights)
Someone suggested we apply pressure to those who are funding Cochrane. That might be a good idea. At the moment this review is the patients problem. One way to make it theirs would be to complain to the funding partners listed by Gatchaman.
A thought:
The local organisations could write to those listed explaining the problem and demand a retraction. Cochrane themselves have said the review isn’t up to date. The argument that it is still being cited might help here. Also they could let Cochrane know that those complaints have been made. Those who receive the complaints probably won’t do anything, but Cochrane seems to be under pressure anyways and what they really don’t need is more bad publicity. This might speed up the process.
A thought:
The local organisations could write to those listed explaining the problem and demand a retraction. Cochrane themselves have said the review isn’t up to date. The argument that it is still being cited might help here. Also they could let Cochrane know that those complaints have been made. Those who receive the complaints probably won’t do anything, but Cochrane seems to be under pressure anyways and what they really don’t need is more bad publicity. This might speed up the process.
rvallee
Senior Member (Voting Rights)
Well, then, you cannot fulfil the role you have asked to provide. And somehow been assigned by actual public bodies. Simple as that. This is usually why government bureaucracies are so large, so that they can account for those issues, document them properly and so on. They receive and document all input from the general public and experts alike, and analyze all the things, not just what they expect will give them the results they want. Here they dispense with the general public and work strictly behind closed doors on the whims of experts who, more often than not, have giant biases and conflicts of interest.
The role of publishing clinical reviews isn't about doing the reviews themselves, it's mostly about being able to take responsibility and account for all the impact they have on the world. Otherwise you're just a front. And basically this is all they are. They basically admit that they cannot do any accountability. And boy are we seeing that.
Who the hell ever decided that this was a good idea? To give an empty storefront power and influence to do things they, by their own admission, cannot do? And yet, somehow, they are basically as wieldy and perform as well as the slowest government bureaucracy. The only benefit here is clearly lower costs, but you usually get your money's worth. If you cheapen out on clinical care, you will get the results of cheap clinical care. And wow is the bill on delayed maintenance due after decades of negligence.
Yes, I think this is a key point to use in advocacy. You can't have an organisation that publishes clinical guidance but does not have the resources to follow its own stated complaint processes, to appropriately deal with feedback that can help identify and remove information that is incorrect and harmful. I agree funders need to see this quote.
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Jonathan Edwards
Senior Member (Voting Rights)
If they had any idea what they were about there wouldn't have been any complaints.
Many thanks to Schweizerische Gesellschaft für ME & CFS for becoming our latest signatory organisation and adding a new country to our list .
Andy
Retired committee member
9,499 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
Here's the chart of petition numbers. We are inching towards 10,000; momentum has slowed down a bit this last week, although there have been some good numbers from Germany. If you can, please share the link with others and explain why getting that 2019 review removed matters.
Here are the number of signatures by country. We are now up to 71 Change.org defined countries, with a signature from St. Vincent & Grenadines adding another country.
Here's the top countries with over 1,000,000 people in terms of signatures per capita:
PETITION UPDATE
Cochrane refuses to follow its own complaints procedure
NOV 19, 2023 —
As we have reported, the Science for ME committee submitted a series of complaints under Cochrane's official complaints procedure on 31st October about the Editor-in-Chief Karla Soares-Weiser's mishandling of our requests and failure to take action on the outdated harmful review. We asked Cochrane to follow its standard complaint management procedure as set out on its website. You can read a summary of the complaints here and the complaint letter in full here.
In an initial reply from Lucy Johnson-Brown, Head of Governance, Cochrane Central Executive Team, copied here, there appeared to be some misunderstanding. She claimed wrongly that our complaints had already been addressed. After a further letter from S4ME, copied here, Ms Johnson-Brown replied:
"We are committed to responding to complaints appropriately. Cochrane isn’t a government department or a public body, we are a relatively small charitable organisation. It is not possible for us to do what you are asking us to. We simply don’t have the resources to provide regular updates about progress on each of your five complaints, to provide written decisions specific to each complaint, with reasons given if each complaint is not upheld, and action that will be taken in cases where complaints are upheld.
A decision has been taken to not withdraw the 2019 review and we have acknowledged that progress with the new review has been slower than we would have liked. I know that you and others strongly disagree with that decision.
Our policies and processes have been developed to guide decision making, it is not always possible to meet self-imposed deadlines, but we are committed to continuous improvement and to reviewing our policies and processes regularly.
I don’t think that there is anything more that I can say on the matter."
The response appears to be saying that our complaints won’t be addressed. We will of course be pleased to hear that’s not what is meant.
____________
Hilda Bastian's November 2023 update revealed that there had been a "lengthy and confidential process following a detailed complaint that called for the [new review production] process to be discontinued, and for the review to remain in its current form. The basis for incorporating an IAG into the editorial processes of a Cochrane review was challenged, as well as the need for an update, and the proposed editorial process..."
Hilda revealed that the IAG process was put on hold while "Multiple committees within Cochrane’s organisation considered this complaint consecutively, which took around a year. The complaint was not upheld after thorough consideration by the Conflict of Interest Panel, a subgroup of the Editorial Board, and finally Cochrane’s Governing Board."
So, Cochrane was willing to spend a year investigating a complaint in favour of the 2019 review, delaying the new review process to do so. Yet it now seems that Cochrane believe that it is okay to dismiss the well-founded complaints from S4ME without any semblance of consideration. Hilda has now announced that there will be another member added to the IAG of the new review process to counter perceived biases within the IAG.
_____________
What next?
The campaign to remove the flawed and harmful 2019 Larun et al review continues. The S4ME committee is considering our next steps.
Thank you
Thank you to all the signatories of this petition and organisation supporting the campaign.
Thank you very much to Schweizerische Gesellschaft für ME & CFS in Switzerland for adding its name to the list of organisations supporting this campaign. That addition brings the number of organisations calling for the 2019 review to be removed to 65, from 22 countries. You can find the full list here. If an organisation you are connected with isn't there, please tell them about this campaign.
The Science for ME committee
Cochrane refuses to follow its own complaints procedure
NOV 19, 2023 —
As we have reported, the Science for ME committee submitted a series of complaints under Cochrane's official complaints procedure on 31st October about the Editor-in-Chief Karla Soares-Weiser's mishandling of our requests and failure to take action on the outdated harmful review. We asked Cochrane to follow its standard complaint management procedure as set out on its website. You can read a summary of the complaints here and the complaint letter in full here.
In an initial reply from Lucy Johnson-Brown, Head of Governance, Cochrane Central Executive Team, copied here, there appeared to be some misunderstanding. She claimed wrongly that our complaints had already been addressed. After a further letter from S4ME, copied here, Ms Johnson-Brown replied:
"We are committed to responding to complaints appropriately. Cochrane isn’t a government department or a public body, we are a relatively small charitable organisation. It is not possible for us to do what you are asking us to. We simply don’t have the resources to provide regular updates about progress on each of your five complaints, to provide written decisions specific to each complaint, with reasons given if each complaint is not upheld, and action that will be taken in cases where complaints are upheld.
A decision has been taken to not withdraw the 2019 review and we have acknowledged that progress with the new review has been slower than we would have liked. I know that you and others strongly disagree with that decision.
Our policies and processes have been developed to guide decision making, it is not always possible to meet self-imposed deadlines, but we are committed to continuous improvement and to reviewing our policies and processes regularly.
I don’t think that there is anything more that I can say on the matter."
The response appears to be saying that our complaints won’t be addressed. We will of course be pleased to hear that’s not what is meant.
____________
Hilda Bastian's November 2023 update revealed that there had been a "lengthy and confidential process following a detailed complaint that called for the [new review production] process to be discontinued, and for the review to remain in its current form. The basis for incorporating an IAG into the editorial processes of a Cochrane review was challenged, as well as the need for an update, and the proposed editorial process..."
Hilda revealed that the IAG process was put on hold while "Multiple committees within Cochrane’s organisation considered this complaint consecutively, which took around a year. The complaint was not upheld after thorough consideration by the Conflict of Interest Panel, a subgroup of the Editorial Board, and finally Cochrane’s Governing Board."
So, Cochrane was willing to spend a year investigating a complaint in favour of the 2019 review, delaying the new review process to do so. Yet it now seems that Cochrane believe that it is okay to dismiss the well-founded complaints from S4ME without any semblance of consideration. Hilda has now announced that there will be another member added to the IAG of the new review process to counter perceived biases within the IAG.
_____________
What next?
The campaign to remove the flawed and harmful 2019 Larun et al review continues. The S4ME committee is considering our next steps.
Thank you
Thank you to all the signatories of this petition and organisation supporting the campaign.
Thank you very much to Schweizerische Gesellschaft für ME & CFS in Switzerland for adding its name to the list of organisations supporting this campaign. That addition brings the number of organisations calling for the 2019 review to be removed to 65, from 22 countries. You can find the full list here. If an organisation you are connected with isn't there, please tell them about this campaign.
The Science for ME committee
Andy
Retired committee member
9,505 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
Social media posts for the new petition update
Facebook: https://www.facebook.com/sci4me/pos...j93DcnfgKiYSvM1EhG8n49CtMdfa8oBgKZ6d7meTnAqCl
Mastodon: https://med-mastodon.com/@s4me/111437291112280979
Facebook: https://www.facebook.com/sci4me/pos...j93DcnfgKiYSvM1EhG8n49CtMdfa8oBgKZ6d7meTnAqCl
Mastodon: https://med-mastodon.com/@s4me/111437291112280979
rvallee
Senior Member (Voting Rights)
I hadn't read the updates from Cochrane before today. Shocking stuff. They spent over a year with multiple committees dealing with a bullshit complaint, merely a self-serving whine, to cancel the IAG, but for major complaints from thousands of "consumers" and nearly a hundred representative organizations about process and judgment errors, they just don't have the resources. Which is an admission of being unable to meet the roles they appointed themselves. Which their funders either don't know about, or don't care.
Absurd. So that makes the complaints process arbitrary and essentially performative. They also essentially admit to not care about reviews that are unfit for purpose and cause harm, on their own admission due to simply not being able to deal with it. And they have the shamelessness to boast about consumer advocacy, even as they treat us with complete disrespect.
And being a charity, there is no authority that deals with them. Apparently. So they have enormous power over millions of lives, and zero responsibility for the outcomes. Instead they protect their own and after having failed to follow their own requirements about reviews, they don't even follow their own processes laid out to deal with complaints, even major complaints about gross misjudgment and errors of process.
Evidence-based medicine. This is the organization best-known for it. What an absurd development this has been.
Absolute masterclass at laying out the arguments, @Trish. This is all so damning, and yet we are powerless despite being completely right.
Absurd. So that makes the complaints process arbitrary and essentially performative. They also essentially admit to not care about reviews that are unfit for purpose and cause harm, on their own admission due to simply not being able to deal with it. And they have the shamelessness to boast about consumer advocacy, even as they treat us with complete disrespect.
And being a charity, there is no authority that deals with them. Apparently. So they have enormous power over millions of lives, and zero responsibility for the outcomes. Instead they protect their own and after having failed to follow their own requirements about reviews, they don't even follow their own processes laid out to deal with complaints, even major complaints about gross misjudgment and errors of process.
Evidence-based medicine. This is the organization best-known for it. What an absurd development this has been.
Absolute masterclass at laying out the arguments, @Trish. This is all so damning, and yet we are powerless despite being completely right.
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Ash
Senior Member (Voting Rights)
I don’t think that we are powerless.
I think that Cochrane perceives no obligation to respond to us upon points raised. Cochrane don’t have a self interested reason to value our lives or our quality of life. They have in fact damaged our chances in this respect. But the consequences are for us alone to manage. That’s normal for a self interested organisation.
But in this specific case Cochrane also appears confident enough not to have to perform comms that would cover up this fact. They’re letting it all hang out. Perhaps they are confident that the establishment system, of which they are a part, has down graded our status as human beings, such that we don’t qualify for the protections that may be claimed in society. To the extent that we are rendered irrelevant.
I feel it. Refusing to follow their own complaints procedures displays such a breath taking degree of contempt, we perhaps find ourselves winded.
But overall I am gratified.
It’s one thing to be an unaccountable organisation with not insignificant power over the safety and health of the population abusing this power. But it’s another to not bother to conceal that this is how it is.
I guess Cochrane feel the walls closing in on them and decided to kick us into the gutter, in some kind of panic reaction or temper tantrum. It’s not a power move. It’s a strategic mistake.
We are in a much stronger position now that Cochrane has publicly given us written evidence of this intention to avoid their own procedures. Why so? Just because it’s us asking for their professionalism? We aren’t worth it? No? Or same goes for anyone? Well then Cochrane is done and dusted sooner than expected.
I guess Cochrane may resent or resist their obligation to have a policy at all. Or maybe they like having it but are not willing to comply with it. It is up to Cochrane to provide us access to their complaints channel as they have officially committed themselves to do. It is up to them whether we can in actuality use the complaints process and procedures for their publicly stated purposes. Nonetheless we will use this.
I think that Cochrane perceives no obligation to respond to us upon points raised. Cochrane don’t have a self interested reason to value our lives or our quality of life. They have in fact damaged our chances in this respect. But the consequences are for us alone to manage. That’s normal for a self interested organisation.
But in this specific case Cochrane also appears confident enough not to have to perform comms that would cover up this fact. They’re letting it all hang out. Perhaps they are confident that the establishment system, of which they are a part, has down graded our status as human beings, such that we don’t qualify for the protections that may be claimed in society. To the extent that we are rendered irrelevant.
I feel it. Refusing to follow their own complaints procedures displays such a breath taking degree of contempt, we perhaps find ourselves winded.
But overall I am gratified.
It’s one thing to be an unaccountable organisation with not insignificant power over the safety and health of the population abusing this power. But it’s another to not bother to conceal that this is how it is.
I guess Cochrane feel the walls closing in on them and decided to kick us into the gutter, in some kind of panic reaction or temper tantrum. It’s not a power move. It’s a strategic mistake.
We are in a much stronger position now that Cochrane has publicly given us written evidence of this intention to avoid their own procedures. Why so? Just because it’s us asking for their professionalism? We aren’t worth it? No? Or same goes for anyone? Well then Cochrane is done and dusted sooner than expected.
I guess Cochrane may resent or resist their obligation to have a policy at all. Or maybe they like having it but are not willing to comply with it. It is up to Cochrane to provide us access to their complaints channel as they have officially committed themselves to do. It is up to them whether we can in actuality use the complaints process and procedures for their publicly stated purposes. Nonetheless we will use this.
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Suffolkres
Senior Member (Voting Rights)
Checking Cochrane on Charity Commission website.
Suggest S4ME makes direct contact with all Trustees.
Especially new Trustee of 2022, Gillian Leng former CEO NICE........
Also raising concern with C Commission over their stated Charity objectives
and Trades Description, due to the misinformation heading Charity website?
Will post above later when I have access to computer.
Suggest S4ME makes direct contact with all Trustees.
Especially new Trustee of 2022, Gillian Leng former CEO NICE........
Also raising concern with C Commission over their stated Charity objectives
and Trades Description, due to the misinformation heading Charity website?
Will post above later when I have access to computer.
Ash
Senior Member (Voting Rights)
Yes.
They may have over played their hand here. The establishment may view us as subhuman objects to be experimented upon. But Cochrane is no longer as shiny as it used to be. This latest move looks particularly grubby.