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

Maybe The Vertlartnic would tweet it as a tale in 52 instalments. Cochrane's logic is absurd enough.

 

https://www.facebook.com/1000643212...RqwkUHCEYo5ga6ENXNBtzpScse7mGJy1p6ql/?app=fbl

Post about the ‘update’ being abandoned on the MEAssociation Facebook from Charles Shepherd

I don’t think there is a link to the petition but he says at the end of the main post it must be withdrawn

 

And if there is no new research then the need to withdraw is even more required given the excuse for not withdrawing was never there anyway just some selling that somehow ‘look it’ll be something new’ and times would move on if people just let them keep the old one up etc

I think it’s very important to pull out the assessments of that 2019 review snd info about it being withdrawn then reinstated only on that basis made very public ?

 

Sounds a sensible next step in order to stop then making it ‘just the cfs people don’t like their outcome’ to look at any patterns

I’m curious to know about mcmaster uni too and the connection there as I’ve only just realised it I assume most won’t have noticed it. I find that interesting given the recent Canadian guideline for example to know more about them and why etc?

 

I wonder if it would be worth writing to Susan Philips not to complain, but to point out the collapse in faith in Cochrane on the part of PwME and express our disappointment. The point would be to reach someone who might care, without risking their secretary just binning the email because it falls into the 'complaint' category.

 

Yes but since all the complaints so far have been ignored anyway, I'm not sure the situation has changed. I feel disinclined to jump through Cochrane's hoops by following their restrictions. If anyone has the energy, I would think it worth having a go at writing to whoever it is thought might be useful. I think we should follow our own counsel. I don't recognise Cochrane's right to instruct us as to who we can communicate with.

 

Hopefully he will!!

 

The Universities could say the person’s role at Cochrane was independent of the University and they have no access to information on this. Perhaps if you could demonstrate that they were paid by their university to participate in Cochrane related activities then you could ask the university about that?

 

I wonder what Hilda Bastian has to say about this?

It is clear the decision was based on internal politics rather than the science.

 

Are they actually’bought out’ of their uni contract like eg a research project would do for x % of their time fir x months etc?

 

I suspect that Hilda went into the process with the best of intentions, but has in part been got at by her BPS Cochrane contemporaries and can’t quite believe they have got it so wrong. But also she is too much a Cochrane loyalist to challenge the organisation publicly and certainly has allowed herself to be silenced for some eighteen months or even longer.

The long and the short is I doubt Hilda will say anything that could be seen as disparaging Cochrane, though she has been messed about by them as much as anyone else.

 

I suspect they are doing things for a Cochrane as part of their work paid for by the employing university or health trust but if it is not specified in their job description the university or other might try to get out of responsibility in FOI terms.

When I was still working participation in regional and national clinical or policy groups was written in my job description and the general details of what I did had to be agreed with my line manager. I did more hours on such things in my own time than I was paid for but it was clearly part of my work for the employing health trust. But for more senior academics or doctors less this is likely to be written down or explicitly requiring line manager approval.

 

So they rejected the protocol of the group they appointed after years of waiting around giving no signs of life. Without giving any actual reason. Although if Davenport was involved, I assume that the main reason is that the protocol would obviously correct the problems with the current review and find, as NICE did, that this stuff is worthless.

Good stuff. Just amazing.

 

Cochrane sent an email to the authors today stating the following:

Authors’ rights: If a Cochrane Review is withdrawn at any stage before publication, the authors’ rights in the unpublished review are unchanged, and the authors can use the content elsewhere (such as for publication in a journal, or for research purposes), on the condition that the work is not titled, described, or referred to as a 'Cochrane Review'.

Cochrane’s rights: Cochrane will retain a copy of the withdrawn Cochrane Review submission for archival purposes. Cochrane retains the rights to the elements within a withdrawn submission that were developed by Cochrane, such as the search strategy and templates. Cochrane may publish a Cochrane Review using elements developed by Cochrane for the withdrawn review and may use the same title and address the same question as the withdrawn review. This will be an entirely new work and, potentially, an entirely new author team.​

I'm unclear on how the authors rights work given there are multiple authors, some of whom work for Cochrane.

The bigger questions for me are:
1) whether a review by another group would be accepted or just dismissed, favoring the Cochrane review. For instance, Wormgoor has already done a review of the evidence for physiotherapy for ME.
2) Do the last two lines suggest Cochrane is planning to repeat the review themselves?

Edited to add - should have listed NICE's review in addition to Wormgoor. Others out there as well