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Science for ME

Petition update: Cochrane refuses to follow its own complaints procedure

In a response to our complaints, they say that they "don’t have the resources to provide"

* regular updates and written decisions for each complaint
* reasons given if each complaint is not upheld
* or action that will be taken in cases where they are.

In comparison, they were willing to spend a year investigating a complaint made in favour of the 2019 review.

.

change.org/p/cochrane-withdraw

Change.orgCochrane refuses to follow its own complaints procedureAs 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October about the Editor-in-Chief Karla Soares-Weiser's mishandling of our requests and failure to take action on the outdated harmful review.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