Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019

I think I can safely say that none of the committee members currently have time or energy to coordinate this but we'd be more than happy to see the forum used to cooperatively write a letter in a separate thread. Once it is written, whoever is coordinating it can either post the finished letter asking for individual signatures, or if the desire is that it is to be sent as a forum letter, the committee would need to decide if we should take it to a forum vote or not.

Appreciate that isn't probably what you hoped to read but we (the committee) have to be realistic in what we can and can't currently do.

 

Thank you @Andy. That's more than I hoped to read. Just missed the clarity to word my suggestion.

I think it just needed one ore two additional words:

"Is this something S4ME members would like to consider setting up together?"

Don't feel up to starting a separate thread right now, but would do it as soon as possible if some people like the idea.

 

I think this is an excellent idea, @MSEsperanza , thank you.

If the desired outcome is to actually get the editor-in-chief to agree, as opposed to make the point about the failures of the revised review, It might be worth slightly modifying the pitch.

We are concerned that the revised review fails to address a number of serious objections, such has [perhaps the failure to tackle be the problem of objective outcomes in a non-blinded trials — but not a long list; she already knows the criticisms]


At the same time, we welcome your announcement of a new review, consulting patients, with work starting early next year.

Given that you have made this public (placed it in an editorial, I think), we think it's appropriate to include this statement prominently on the current review so that readers are aware that Cochrane is already planning a completely fresh approach to the issue.


This is a suggestion for the gist and definitely not copy!


This doesn't preclude at all contacting Cochrane, including the editor in chief, about the many flaws of the review itself. My suggestions are aimed at trying to get the desired outcome of the editor agreeing to add her comments, so that they are widely seen and their implicit recognition that it is a flawed review. And I think that would be a very important outcome.

 

May I suggest including a strong recommendation to Cochrane to consult actual experts in exercise and ME/CFS. The people who have actually been studying how exercise affects ME/CFS oppose graded exercise therapy and believe that patients suffer from a broken aerobic system that cannot be fixed with exercise.

 

Is this something that should be welcomed? Everything we've seen from Cochrane so far indicates that this is likely to lead to more harm.

 

New thread on suggestions for a letter to the editor-in-chief:

https://www.s4me.info/threads/letter-to-new-cochrane-editor-in-chief.11669/

 

It's a simple reminder that we will hold Cochrane up to this. The process that created the last reviews was completely opaque and highly secretive, entirely lead by people who are not actual subject matter experts. So a process that includes open dialogue with patient organizations would be a strong deviation from past practices. We welcome that is dependent on actually going through with it in a way that breaks radically with the current process of not caring one bit what we say, no matter how well backed-up by evidence it is.

 

Larun's PhD was on exercise therapy and CFS. We have good reason for not respecting her, but there's a lot of good reasons for believing that we do not want a review led by those Cochrane views as 'subject matter experts'. They also haven't given any details on what changes, if any, they are going to make, other than trying to make it look like patients support their work.

 

How? Be specific please.

 

I'll be very surprised if it doesn't go exactly the same way as the last one, but maybe appointing AfME or the Sussex society as 'patient input/consultation/liason', but with BPSers at the helm to mark their own work again. After all they all market themselves as experts in the field.
I'd love to be proved wrong but, as with NICE I am not at all hopeful.

I'm not saying don't write to her, just that i'm not optimistic about that the editor really has in mind. Currently.

 

The promise of patient involvement means nothing. PACE had patient involvement. This promise is just to try and keep us calm while Cochrane protects corrupt and incompetent researchers that are harming patients.

Maybe the next review will be good but there's not much to be hopeful about.

 

I mean that the simple act of saying we are looking forward to working with patient organizations is saying that we will be holding this promise to account. The note promised a radical departure from what was done up to now and we will be watching that this note is not an empty promise.

 

Ah, sorry. In that case I misunderstood @Sly Saint's post.

 

Yes I think we should, initially at least. Give them and the new editor in chief a fresh shot at it. If they blow it, so be it.

This was my rationale ...

https://www.s4me.info/threads/cochr...version-october-2019.11564/page-4#post-205892

 

The new EiC took over from Tovey and decided not only to publish this Larun review, but also to allow more positive claims about exercise therapy than Tovey would allow. They had a fresh shot and they blew it.

From Michiel Tack:

 

In Tovey's last released e-mail from 29.05.2019 he isn't that firm anymore:

But I don't know what to think about what he said about where he got this new ideas:

 

Thanks for that. TBH, I didn't think a lot of Tovey's argument were that strong - the whole correspondence gave the impression that no-one involved in the review really knew what they were talking about, or had bothered to think seriously about why so many people were raising concerns about this work. I still think the point remains that the new editor's decision to publish this review was wrong, and that the review authors seem to have been allowed to make even more positive claims about exercise therapy than they had previously been negotiated down to.

 

my original post on this was asking anyone for clarification of those statements which Michiel and others have now made; so no apology needed Barry.
Clearly the authors leaving some contents unchanged, as in this case, doesn't help at all, and although the paper now has 'conclusions changed' highlighted the message is still pretty much the same.

see my other post above:
https://www.s4me.info/posts/205850/

plus ca change