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

Have been away for a bit, and received this from Cochrane on Monday in response to my appealing their decision (pasted below)

New reply for your query (ticket #COMP00164156)

Dear Ms Struthers,

This case is closed, and we will not be establishing an appeals board for this complaint. Our policy at the time of your complaint was that requests for review be received in writing no later than one month after the decision was received, and our current policy requires appeals to be made within 30 days. We note that you were informed of that decision in April 2023.

In regard to your comments about the guidance of the Fundraising Regulator, this was a complaint related to the Cochrane Database of Systematic Reviews. We note that the relevant external body for editorial-related complaints, COPE, has already addressed Cochrane's processes in relation to this complaint.

We have noted your requests for further information. We will notify you when there are relevant further public reports about complaints related to this review.

Kind regards,
Cochrane Complaints.

 

And I received the following from the Funding Regulator on Monday in response to my complaint to them.

Dear Ms. Struthers,

Thank-you for contacting the Fundraising Regulator to report your concern about The Cochrane Collaboration. From reviewing the information, I don’t think this is a complaint which falls within our remit. I would like to explain why in further detail.

Your complaint

You have explained: “I am concerned that the charity is prioritising its own reputation over its beneficiaries by refusing to investigate an allegation of editorial misconduct which has led to a misleading and substandard publication. Trust in the editorial process and sales of publications is the charity's main source of income so allegations of editorial misconduct potentially leading to a misleading publication and harm to patients should be taken seriously. The charity has refused to investigate my complaint thoroughly and independently.”

Our role and remit

Part of our role is to investigate complaints from members of the public about charitable fundraising practice where these cannot be resolved by the fundraising organisations themselves. We do so by considering whether the fundraising organisation has complied with the Code of Fundraising Practice (the code), which outlines the legal requirements and best practice expected of all charitable fundraising organisations across the UK. Where poor fundraising practice is judged to have taken place, we can make recommendations for remedy and implement changes to the code.

The information you have provided indicates that your concern is about what you consider to be poor decision-making within the charity in relation to one of its income revenue streams. This would be considered a matter of governance in relation to how the charity is seeking to achieve its charitable objectives, rather than fundraising activity. Therefore, your complaint is not within our remit to consider.

Next steps

It’s not unusual for us to see complaints that fall outside of our scope. In these cases, we try to signpost complainants to the appropriate body or alternative regulator who may be able to help.

In this instance, you may wish to report your concerns to the Charity Commission for England and Wales. You can do so via its website: https://www.gov.uk/complain-about-charity

I’m sorry we were not able to assist directly on this occasion, and I hope the information provided above is useful.

Kind regards

 

I might next try submitting a complaint on the review itself about the author representative (Atle Fretheim) not following the advice of Gordon Guyatt to add text to the review emphasizing that the potential size of the effect of exercise was not clinically significant. I will use a pseudonym

I am compiling a summary timeline of the whole complaint including "interventions" by Charity Commission and COPE which I will submit to the APPG and publicly

 

@Caroline Struthers, it would be interesting to know how Cochrane responds to complaints on other issues; is their avoidance, prevarication and misdirection standard practice or confined to how they deal with the issues around their CFS Exercise Review?

Are they more generally belligerent or do they reserve it for issues relating to ME/CFS where they have demonstrably fallen short of what one could reasonably expect of an charitable organisation set up to promote evidenced based medicine?

 

I have written back to them pointing out I have already complained to the Charity Commission. I attached various documents supporting the argument that it's not a governance issue, but an editorial decision which has led to a knowingly misleading and harmful product being sold to raise funds for a charity.

 

I think this needs msm publicity .
Where else would this be acceptable ?

 

I decided, wearily, to respond to Cochrane as well as the fundraising regulator.

"At the time of my allegation of misconduct in 2023 your policy was to address complaints about the Editor in Chief to the CEO, which I did. I corresponded with her alone about it, and at no point did she say she was following the complaints resolution procedure which was for members and supporters of Cochrane, which I am not. Nor did she say there was a time limit for asking for a review of the case. You cannot retrospectively apply rules to suit your desire to close this case.

You state that "Our procedure requires complaints about the Editor In Chief to be referred to the Chairs of the Governing Board. That is the editor’s overseeing body, in line with COPE’s guidance on complaints made about editors: https://publicationethics.org/files/2008 Code of Conduct.pdf". As COPE said, this guidance is out of date and Cochrane should instead follow the Core Practices in place since 2017 https://publicationethics.org/news/core-practices and https://publicationethics.org/misconduct.

Please could you point me to when and where this "procedure" on referring complaints about the Editor in Chief to the Chairs of the Governing Board was written down? Catherine Spencer clearly had no procedure to work from in March 23 and took advice directly from the Trustees rather than by referring to COPE Core practices. See attached correspondence. She admits there is no procedure in place and acknowledges the need for an independent investigation. At no point did she say she was following any procedure at all, and so using my failure to ask for a review of the case within a time limit I was not aware of and had not been told about is unacceptable.

I have asked a simple question about why the complaint didn't follow the guidance set out by the funding regulator, cited in your complaints procedure. This is not "additional information". You can answer this without reference to any other ongoing complaints.

https://www.fundraisingregulator.org.uk/more-from-us/resources/complaints-handling-guidance

For example

1. Why were the Cochrane co-chairs considered sufficiently independent of the events complained about to determine there would be no investigation?
2. Why was it not possible for Cochrane to ask for a third party outside of the organisation to investigate the complaint?
3. Why was I not informed whether the respondent had been made aware of the complaint or whether they had been given an opportunity to respond?
4. Why was my complaint not investigated thoroughly and fairly to establish the facts of the case including reviewing all relevant evidence, speaking to me, to the respondent and to third parties?
5. Why was I not provided clear, evidence-based reasons for the decision to close the case without a thorough investigation?
6. Why have I had no response to any of the substantive points raised in the complaint explaining why the organisation considers the points justified or not?"

 

Just realised I hadn't read Cochrane's email properly...so this repeating of the question doesn't really make sense, but never mind. I am losing concentration!! I will proceed with the timeline which I can make public.

 

I've now done this too.

 

Have heard from Cochrane CEO and replied. Will post tomorrow

 

Here's the latest correspondence with Cochrane. CEO Catherine Spencer wrote to me yesterday and I replied copying in COPE and Cochrane's Research Integrity Team

Dear Catherine, COPE and COI arbiter

If my points had been adequately addressed, I wouldn’t keep writing to you

If you were following the procedure in April 2023, why didn’t you tell me you were at the time? You simply told me that you’d “noted” the complaint and were not going to do anything (see attached). No mention of any procedure having been followed. Just an email closing the case.

I then complained to COPE about the lack of procedure. You sent COPE some information indicating that you did have a procedure (i.e.. refer to the unaccountable and un-independent co-chairs) and had followed it. This was news to me.

When I complained again to COPE, they said a complaint about editorial misconduct wasn’t in their remit after all, as it related to your handling of the alleged misconduct of an editor rather than journal processes. They also said they understood that you did have procedures for dealing with such allegations. They gave the example of the COI panel (see attached). But the COI panel also refused to investigate my complaint. I would be grateful if you or COPE could let me know what these other procedures you have in place are.

Selling reviews raises funds for your charity. Knowingly publishing a substandard, misleading, and harmful product which you sell to raise funds for your charity is misconduct . The fundraising regulator is still considering the case

All the best

Caroline

From: Catherine Spencer
Sent: Wednesday, June 12, 2024 10:27 AM
To: Caroline Struthers
Subject: Complaint

Dear Ms Struthers

The points you raise have been addressed in previous correspondence. We note that:

The policy we referred you to stated that "This procedure is intended for use by: Anyone making a complaint about the conduct or behavior of a Cochrane member or supporter..." as well as for Cochrane members and supporters. It was in force, and followed, at the time.

• As COPE informed you and Cochrane in response to your complaint when they closed this matter, COPE reviewed whether Cochrane complied with COPE Core Practices outlining that journals require a documented complaints process, concluding "Based on the information we have received, Cochrane has a documented and public summary of their process for complaints and followed this in relation to the matter you raised."
• The policy we referred you to, and which was incorporated in our response to COPE, stated that complaints about the behaviour of the Chief Executive Officer or the Editor in Chief should be sent to the Governing Board Co-Chairs in the footnote to the second box.

We note that this complaint was not related to fundraising, and complaints processes for journals are in COPE's scope. As we said, we have noted your requests for further information, and we will notify you when there are relevant further public reports about complaints related to this review.

Kind regards

Catherine Spencer MBA OBE
Chief Executive Officer
Cochrane Central Executive Team

 

Thank you for all you and others are doing, I really appreciate it. I hope I may be in a position to help more at some stage.

 

Now at 11,177 signatures.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review