Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Apologies for just popping in.

Caroline Struthers said:
Cochrane have responded to COPE in two days flat. They have (finally) posted the editorial notes on the plain language summary pages.
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A very important move. Thanks again for your persistency, Caroline

As Cochrane still don't seem to see the need to withdraw the reviews, the only possible interpretation I can think of is that they 1) don't follow the evidence review of NICE and 2) don't acknowledge that these reviews can cause harm to patients.

I don't know the details about COPE -- but at least the process seems to involve that Cochrane need to spell out the mentioned 2 points if they won't revise their conclusion that the reviews need not to be withdrawn.

(?)
 
MSEsperanza said:
Apologies for just popping in.



A very important move. Thanks again for your persistency, Caroline

As Cochrane still don't seem to see the need to withdraw the reviews, the only possible interpretation I can think of is that they 1) don't follow the evidence review of NICE and 2) don't acknowledge that these reviews can cause harm to patients.

I don't know the details about COPE -- but at least the process seems to involve that Cochrane need to spell out the mentioned 2 points if they won't revise their conclusion that the reviews need not to be withdrawn.

(?)
Click to expand...
I am hoping COPE will ask them to spell out why they don't think the reviews can cause harm, and why their complaints procedure doesn't include independent review. The other point I made was to question the sudden change to the withdrawal policy which means that now out of date reviews can remain on the library forever without being updated.
 
Next stop, Charity Commission. I have complained to them before about the Exercise review and they chose not to investigate. They may be more interested now I can demonstrate Cochrane, as a charity whose beneficiaries are patients and the public, seems not to be taking the possible harm to patients seriously.
 
Caroline Struthers said:
Next stop, Charity Commission. I have complained to them before about the Exercise review and they chose not to investigate. They may be more interested now I can demonstrate Cochrane, as a charity whose beneficiaries are patients and the public, seems not to be taking the possible harm to patients seriously.
Click to expand...

Thank you for pursuing this so vigorously!

Would publication of the finalised NICE guidelines add weight to that complaint? Persuading a regulator to act would be an important moment with potentially far-reaching consequences, so if it would add to the argument, is it worth waiting a few months? It depends on the exact argument you'd be using, though, and I realise the guidelines may not be relevant to it.
 
I was impressed by the last speaker at the conference, Professor Ken Stein.who is Director of the NIHR Systematic Reviews. he therefore controls much of Cochrane purse strings.

He made it clear that Cochrane were no longer the only "organisation in town" that reviewed evidence to produce recommendations.
It sounded though he was looking at a slimmed down and more responsive Cochrane.

He could be very interested in this harmful saga @Caroline Struthers. I do have a transcript of some of his talk, if that would be useful.
 
Caroline Struthers said:
Next stop, Charity Commission. I have complained to them before about the Exercise review and they chose not to investigate. They may be more interested now I can demonstrate Cochrane, as a charity whose beneficiaries are patients and the public, seems not to be taking the possible harm to patients seriously.
Click to expand...
I imagine any complaint to the charity commission would have to start with Cochrane's governing document, and its statement:

upload_2021-5-2_12-11-28.png

https://register-of-charities.chari.../-/charity-details/1045921/governing-document. They are still registered under their old name "The Cochrane Collaboration", but their reporting is up to date so I assume that is all OK.

Interestingly their statement of where they operate includes most places in the world except the UK, but I don't know if it is deemed implicit anyway for UK registered charities.
 
MEMarge said:
I was impressed by the last speaker at the conference, Professor Ken Stein.who is Director of the NIHR Systematic Reviews. he therefore controls much of Cochrane purse strings.

He made it clear that Cochrane were no longer the only "organisation in town" that reviewed evidence to produce recommendations.
It sounded though he was looking at a slimmed down and more responsive Cochrane.

He could be very interested in this harmful saga @Caroline Struthers. I do have a transcript of some of his talk, if that would be useful.
Click to expand...
Yes please. He was on my list of people to contact about this saga, and more generally about Cochrane. I wish I had tuned into his talk.
 
Kitty said:
Thank you for pursuing this so vigorously!

Would publication of the finalised NICE guidelines add weight to that complaint? Persuading a regulator to act would be an important moment with potentially far-reaching consequences, so if it would add to the argument, is it worth waiting a few months? It depends on the exact argument you'd be using, though, and I realise the guidelines may not be relevant to it.
Click to expand...
Yes, I will definitely wait. I am anticipating COPE not doing anything very much, so thinking about the next step regulator-wise
 
Caroline Struthers said:
Yes, I will definitely wait. I am anticipating COPE not doing anything very much, so thinking about the next step regulator-wise
Click to expand...
Well, "not very much", or rather "nothing" is exactly what COPE are doing. It's out of scope, apparently. Editorz rule OK! I have attached their ruling on my complaint, and my response to it. I have also attached the report which contains Cochrane's answers to their queries. Onwards and upwards.
 

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