Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

Have finally submitted the complaint about Karla Soares-Weiser to Cochrane. I was intending to keep it brief, but decided to err on the side of spelling it out in the end. Although I could have gone a lot further.

 

Rather amusingly, today I received an email from Catherine Spencer (CEO of Cochrane) seemingly in response to my complaint sent on 23 March. Except the message was obviously meant for someone else as it refers to me as "she" and she has quoted some of the text of my complaint [italicized]. I wonder who else, aside from the Editor-in-Chief, could be responsible for the content and publication of the review...


From: Catherine Spencer <cspencer@cochrane.org>
Sent: 05 April 2023 09:47
To: Caroline Struthers
Subject: RE: Complaints

I think it is that she holds Karla responsible for the content and publication of the
review.

For simplicity, this complaint will focus on two avoidable and serious errors
in the Exercise Therapy for Chronic Fatigue Syndrome Review for which
Karla Soares-Weiser is ultimately responsible.
1. The risk of bias judgement on selective reporting for White 2012 is still
“low risk” when it should have been changed to “high risk”
2. The evidence quality rating for fatigue at end of treatment is “moderate”
when it should be “low”

These and many other errors mean that following the findings of the review could
lead to patient harm which is grounds for withdrawal of the review.

From: Caroline Struthers <caroline.struthers@csm.ox.ac.uk>
Sent: Thursday, March 23, 2023 11:46 AM
To: Complaints <complaints@cochrane.org>
Cc: Catherine Spencer <cspencer@cochrane.org>
Subject: RE: Complaints

Dear Cochrane Complaints (cc Catherine Spencer)

I have attached my complaint about the Editor in Chief and relevant documents.

I am copying in Catherine Spencer as there are two complaints procedures. One says a complaint about
the Editor in Chief, which this is, should be addressed to the
CEO https://www.cochranelibrary.com/help/complaints . I am not prepared to risk this complaint
falling through the cracks created by this confusion, especially as I am not (knowingly or willingly) a
member of the “Cochrane Community”.

With best wishes

Caroline


Caroline Struthers
Senior EQUATOR Research Fellow

 

I received a response from Catherine Spencer on Friday which I replied to today


From: Catherine Spencer <cspencer@cochrane.org>
Sent: 07 April 2023 21:18
To: Caroline Struthers <caroline.struthers@csm.ox.ac.uk>
Subject: RE: Complaints

Dear Caroline

Thanks for your message.

We are considering how best to handle your complaint. We recognise that we need to look at it
impartially – the email below was erroneously sent to you, and for that I apologise. A case of me doing
too much at once. I was sending this is a follow up email to one of our co-chairs, who I had verbally
asked for advice on whom we could use to review the complaint and they had asked what the general
gist.

However, it is timely that you have written. In preparation to review this complaint I have been
reviewing previous correspondence we have had with you and of course your current complaint. Thus, it
would be very helpful if you can tell me how this complaint differs to the communication that we have
had with you previously, notably the communications resulting in a response from Mark Wilkinson on 25
February 2023.

I hope you have a peaceful holiday weekend and enjoy the sunshine.

Kind regards

Catherine

From: Caroline Struthers
Sent: 10 April 2023 11:42
To: Catherine Spencer <cspencer@cochrane.org>
Subject: RE: Complaints

Dear Catherine

My original complaint about the review, in November 2018, also called for the withdrawal of the review.
It was addressed to the Cochrane Governors and complained about the actions of David Tovey. It was
referred back to him by them because they said it was an “editorial content issue”. It was not
independently investigated. Details of the complaint and responses are documented here.

1. Original complaint to Cochrane Governing Board - https://healthycontrol.org/2018/11/29/my-
complaint-to-the-cochrane-governing-board-about-the-cochrane-review-of-exercise-for-
chronic-fatigue-syndrome/
2. Reply from David Tovey https://healthycontrol.org/2019/01/07/response-to-my-complaint-to-
the-cochrane-governing-board-about-the-cochrane-review-of-exercise-for-chronic-fatigue-
syndrome/
3. My response to David Tovey https://healthycontrol.org/2019/02/18/response-to-cochrane/
4. Governing Board response to me https://healthycontrol.org/2019/05/10/response-from-the-co-
chairs-of-the-cochrane-governing-board/

I wrote to Karla in November 2020 to ask her to withdraw the review because it contradicted the
findings of NICE and could therefore cause harm to patients.

This was not a complaint about Karla, but a request to her which was refused. A Cochrane editorial
committee decided there were no serious errors in the review. When I asked for more detail on how
they had reached this conclusion, I was not given this information. It was referred back to Karla’s boss
Mark Wilson who is not independent and has no editorial or scientific expertise either. I didn’t post
Wilson’s final letter on my blog for some reason, but most of the correspondence is here.

https://healthycontrol.org/2021/02/10/cochrane-refuse-to-withdraw-cfs-reviews/

Best wishes

Caroline

Caroline Struthers
Senior EQUATOR Research Fellow

 

The latest from Catherine Spencer in reply to my email of 10 April - she's a bit stuck, it seems!

She doesn't know about the Charity Commission complaint, unless she picked it up from reading my blog posts (doubtful). I contacted the CC again yesterday with details of my refused request to withdraw the two Cochrane reviews in 2020, where there was no independent investigation (unless you count COPE, which I don't!), and also the recent complaint about Karla allowing a review with at least two serious errors which could lead to harm to patients to be published. Might as well keep them in the loop I guess.

Hi Caroline

Thanks for this – really helpful.

I am still working on how we best consider your complaint, including the need for impartiality.

Kind regards

Catherine

 

Heard from the Charity Commission. Love this sentence "We appreciate that sometimes decisions made by charities may be unpopular with some interested parties".

They go on to say are only looking at risk to "anyone coming into contact with the charity" and "risk to the charity itself". Cochrane have just lost all its UK funding for being terminally crap at their job, so I think they did put themselves at risk over many things. But anyway.

The CC failed to mention the risk to the "beneficiaries" of the charity from the poor products (aka published reports) it produces, specifically, but unlikely to be limited to, the Exercise revewi. On the complaint form (https://forms.charitycommission.gov.uk/raising-concerns/) it clearly says it deals with risk of "serious harm to the people the charity helps" as well as risk to "anyone who comes into contact with the charity". But they have only mentioned the latter in their letter. I will write back and point that out, (again). I will ask them to spell out that they have also considered the serious harm to beneficiaries, which was the basis of my complaint.

 

My response to Charity Commission - worth a shot eh?!

Dear Lorraine Ross

On your raising concerns page (https://forms.charitycommission.gov.uk/raising-concerns/) you say concerns should be raised if there is an issue of “serious harm to the people the charity helps or other people who come into contact with the charity through its work”

Your response letter says you have considered “…the risk to anyone who comes into contact with the charity, along with the risk to the charity itself”

My complaint was about serious harm to the people Cochrane is supposed to help. My evidence was the decision taken to publish a report which still fails to highlight that there is no evidence for a meaningful benefit of the treatment under review. Not only is there no evidence of benefit of this treatment, there is also evidence of harm. This has led it to being removed as a recommended treatment by NICE. https://www.nice.org.uk/guidance/ng206

Why did you not say you had also considered the risk of serious harm to the people the charity helps when you made the decision? If this was an error, please re-write your response to include these words. If you didn’t consider the risk of serious harm to the people the charity helps as well as the risk to “anyone who comes into contact with the charity, along with the risk to the charity itself”, please let me know why, given this is on the raising concerns webpage, and is the whole basis of my complaint?

With best wishes

Caroline

 

Confident "get stuffed" message from Cochrane, just received. [I also complained about the Exercise review update process, so there is a third complaint for them to respond to...maybe they're saving that for tomorrow?]

Dear Caroline,

We have considered the following complaints.
a) Complaint regarding the Editor-in-Chief dated 23.3.2023.
b) Complaint regarding information on the appointment of a consumer advocate to the Cochrane Library Oversight Committee dated 23.3.2023

Your complaints, along with your comments have been noted. With regard to our policies and procedures, the Terms of Reference for the Cochrane Library Oversight Committee and Complaints Resolution process will be revisited as part of a scheduled piece of work that the Head of Governance will take forward.

We now consider the matter closed. We do not believe further correspondence will be helpful. Thus, no further correspondence on these subjects will be considered.

Kind regards

Catherine

 

Wonderful. Catherine Spencer is the new(ish) CEO. I was thinking of publishing the whole complaint about Karla on my blog, including the correspondence with Catherine before and after I submitted the complaint. She seemed to agree the complaint should be independently investigated, and now it seems it's enough for Cochrane to "make a note". I can forward her response to the Charity Commission so they know Cochrane aren't investigating.
Great I received her email on the same day that The Cochrane Consumer Officer Richard Morley posted this https://twitter.com/user/status/1650387827413098499

 

As Catherine only shut down two of my three complaints - she helpfully labelled them a and b - I wrote to ask about the other one, which I labelled c.

Dear Catherine

Are you still considering:

c) Complaint regarding poor management of Cochrane’s “Stakeholder engagement in high-profile reviews pilot” dated 15 March 2023 (attached)?

Best wishes

Caroline

 

Have also written to the Charity Commission to let them know that Cochrane is not investigating my allegation of harm to beneficiaries caused by one of its staff as there is no procedure in place to do so.

 

Sent today to the complaints address complaints@cochrane.org about the exercise review update. They say they reply within 5 days.


From: Caroline Struthers
Sent: 17 May 2023 14:48
To: Complaints
Cc: Catherine Spencer; cochrane.iag@gmail.com; support@cochrane.org
Subject: Complaint: Poor management of Cochrane’s “Stakeholder engagement in high-profile
reviews pilot”

Dear Complaints Department (cc Catherine Spencer, Hilda Bastian, Governing Board)

I am writing in a personal capacity and not as a representative of my employer.

It is now nearly two months since I made a formal complaint about the poor management of Cochrane’s
“Stakeholder engagement in high-profile reviews pilot. My latest message to the lead of the
independent advisory group from 24 February this year was not answered.

It seems Cochrane, an international charity in receipt of public funding, doesn’t follow its own
complaints procedure, and also doesn’t have a mechanism to investigate complaints
independently. Please could you confirm this is the case and I can refer it to the Charity Commission.

Please could you confirm you have forwarded this message to the Governing Board?

With best wishes

Caroline

Caroline Struthers
Senior EQUATOR Research Fellow

 

Cochrane have a new ticketing system!!!!! How exciting!!!

New reply for your query (ticket #CSO00129045)

Dear Caroline,

Thank you for your message, and I'm sorry to hear you haven't had a response to this complaint. Please be assured that I am following this up internally now, and will get back to you as soon as I have an update.

With best wishes,

Rachel Klabunde
Cochrane Support Manager

 

I received this today from Catherine Spencer

Dear Caroline

Thank you for your complaint 'Poor management of Cochrane Stakeholder engagement in high-profile reviews pilot.'

We have reviewed and noted your complaint.

Kind regards

Catherine Spencer

I will submit it to the Charity Commission, more in hope than expectation. I guess "noting" complaints is one way of dealing with them...and practiced the world over.

 

Had a flurry of activity over the weekend and wrote to Cochrane Trustees. no idea if I will get through. I also submitted another complaint the the Charity Commission about Cochrane's lack of complaints procedure or justification for not investigating. I put the whole (latest) saga on Twitter https://twitter.com/user/status/1672639503750647810
. I even tagged Gordon Guyatt, just for fun.

Dear Cochrane Support (cc Gillian Leng, Lorrraine Ross, Charity Commission)

I have asked at least once for you to forward correspondence regarding complaints to the governing board, and have never received a reply. I am not happy with how recent complaints have been handled by the CEO, and so I need to contact the Trustees. Please could you confirm you will forward this email to them?

A complaint against the Editor-in-Chief has not been investigated. The complaints procedure has also not been followed for a complaint about the Cochrane Library Oversight Committee and the poor management of the Exercise for CFS review update. I don’t see how “making a note” of complaints is a credible procedure for a Charity when serious concerns are raised, particularly concerning potential harm to its beneficiaries. The Charity Commission responded to my concerns by saying if decisions are made by the trustees and those decisions have been properly made within the law and the provisions of the charity’s governing document, then they won’t engage with the charity if people don’t like those decisions.

Please could you give me evidence that Trustees have seen and discussed my complaint about the Editor-in-Chief, and evidence that the decision not to investigate, despite the CEO’s earlier acknowledgement that it would be, has been properly made. Please can you also point me to the provision in the governing document which was used to make their decision?

I have copied in Gillian Leng on her NHS email address, as I corresponded with her on a related matter when she was CEO of NICE

Many thanks

Caroline

 

Hello

Had a response from the Charity Commission today, but nothing yet from the Cochrane Trustees. I have bolded and italicized a paragraph which is quite interesting. They have never contacted Cochrane Trustees before - not in connection with any of my complaints anyway.

Dear Caroline Struthers

THE COCHRANE COLLABORATION 1045921

Thank you for your emails of 21, 23 and 25 April and 24 and 25 June. I am sorry for the delay in responding to you.

We have considered your concerns again, together with the additional information you have submitted. We note that you have raised concerns about the accuracy of a report published by the charity, and whether the content could potentially cause harm to beneficiaries. We note that you have raised your concerns with the charity, and have received a response, but you are not satisfied with the charity’s handling of your complaint.

As you will be aware from my previous correspondence, we assess all concerns in accordance with our published risk and regulatory framework. Having carefully reviewed all of the information provided, we have determined that there are no regulatory concerns for us to act upon at this time, for the reasons set out below.

You have raised concerns regarding the charity’s editorial policy and its application, including the content of a specific published report.

It is not for us as the regulator to intervene in the charity’s editorial process; this is a matter for the trustees to decide, with the involvement of the charity’s senior staff if applicable. The role of the Commission is to ensure that charities are governed effectively, and that trustees’ decision-making is in accordance with their legal duties. We have not seen any evidence that decisions around the editorial process were in breach of any legal duties.

We have, however, taken this opportunity, in line with our usual processes, to remind the trustees that they must be aware of the importance of the charity’s reputation and be vigilant about the charity’s independence. In addition, the trustees should ensure that, in the context of the charity’s objects, what it is publishing has passed the appropriate standards of intellectual and academic rigour.

If you are unhappy that we are not taking forward your concerns you can raise a complaint through our complaint process: Complaints procedure - The Charity Commission - GOV.UK (www.gov.uk). To assist, it would be helpful if you read the guidance CC47, provide any additional evidence to support your concerns and explain why you think we should take forward your concerns.

You can raise a complaint about the Commission by emailing the Customer Service Team at: CustomerRelations@charitycommission.gov.uk

Yours sincerely

Rachel Walker
Intelligence Assessment Manager

 

I submitted another complaint about Cochrane to COPE as they have not followed COPE's guidance on investigating complaints made by whistleblowers https://publicationethics.org/sites/default/files/respond-whistleblowers-concerns-cope-flowchart.pdf

 

Just done the FOI request...nice system. I think it might get addictive! https://twitter.com/user/status/1683750155835568128

 

I received a reply saying the Chrarity Commission are not going to disclose its telling-off letter to Cochrane as it might deter Cochrane from engaging with them in the future or something. So not in the public interest.
https://www.whatdotheyknow.com/requ...ation to C Struthers.pdf?cookie_passthrough=1.

I haven't heard back from COPE yet. They also have no regulatory power, and also demand that details of their investigation and any contact with Cochrane stay off social media etc. I have complained that Cochrane have refused to investigate my "whistleblower" complaint about Karla Soares-Weiser which contained "specific and detailed evidence". Refusing to investigate is not following the COPE guidelines. https://publicationethics.org/sites/default/files/respond-whistleblowers-concerns-cope-flowchart.pdf. So they will have to justify that to COPE. I am sure they will do so, but it will be interesting to see how they do it.

 

I said in a Tweet that it seems a poor defence to tell me in an email, which was not confidential, that they have contacted Cochrane. But then to say they can't disclose the content of what they sent, because it's not in the public interest. Surely it is in the public interest to know that the Charity Commission did what they said they had done. It would increase public trust in the Charity Commission. Is that enough to challenge their decision?
https://twitter.com/user/status/1690685490259755008

 

So Cochrane will not have to justify its non-investigation of my concerns to COPE, as COPE are not going to review it. What a surprise! I can still ask for a response from the Trustees as to why they have refused to investigate my complaint about Karla Soares-Weiser