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

I can't really take what she says seriously, especially as she says this:

And we have literally not seen a single thing in 5 years. Not a damn bit of that alleged work.

This is not the way to do anything. Even generically, but from an organization that regularly boasts of consumer engagement in a project framed as a better example of it moving forward to have been completely silent and opaque makes those claims have zero credibility.

This has been a ridiculous process from a ridiculous organization from the start and it continues to be.

 

There is an ongoing investigation into my allegation against Karla SW by a Wiley research integrity team. I have no idea if they will uphold my allegation, but as they are the ones who sell the Cochrane Library licenses, this whole business is not going to impress them much I wouldn't have thought.

 

Well I always suspected the purpose of the 'update' might only have been to be able say/give some, any, excuse for leaving something flawed up in response to the original not staying withdrawn 'it's OK because ...'

and then of course they implemented a 'no withdrawals' was it clause or policy? pretty soon around that time.

I feel this one should be exempt anyway because it had been withdrawn and the only reason it feels it was put back up was justified by it won't be there for long without a significant update. If something is 'in that process' and apparently 'unwithdrawn on the basis of x promise' (which then never happens) then the withdrawal 'question' actually occured before said policy or whatever? and now of course it turns out they don't intend to do an update in the one way promise that was to convince people it was OK to keep it well that context reverts back to where it was?

There's been a lot of 'shiny keys' and ignoring with a few distractions thrown in, but in result nothing has actually changed in the validity of that review or the context around it ever since. Just a hope that people would either forget or think it was more complicated than it is due to the breadcrumbing of the last 5yrs?

 

This is outrageous, as a policy. People conduct coordinated campaigns when people in power perpetrate a major injustice and then refuse to answer to criticism. A pre-emptive policy refusing to respond to their complaints is just another two fingers up to the powerless.

I don't see why we should be playing by Cochrane's rules at this stage. I'd like to to see exactly what you suggest, and I'd like to see the complaint sent simultaneously to individuals (another thing that Cochrane have tried to forbid).

 

I just saw a new editorial note has been appended to the review (see https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/full), which, while transparent about "ceasing the production of a full update of this Cochrane review", now gives the Larun et al. 2019 review a publication date of 19 December 2024.

The version history (at https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/information#versionTable) states: "2024 Dec 19 New citation required but conclusions have not changed".

This also means critical comments addressing Larun et al. 2019, including a new, recent one from just two days ago all carry a note stating "This comment relates to a previous version of this review"

So we will now see citations of Larun et al. 2024 spring up in the literature.

 

And while all the criticism levelled at Larun et al. 2019 is now somehow outdated, the review is suddenly the very latest and greatest from Cochrane. Or so it will appear to outsiders. Maddening.

 

Especially as the 2019 version was pretty much a rehash of the previous draft.

 

The FOI from after the Nice guidelines showing for example someone getting in contact with Gillian Leng who all we technically know is they were from certain royal colleges talking about how the using the longest timeframe and being really angry about the 135weeks measure springs to mind. Would it be worth linking to these (particularly the ones talking about eg methods/protocol) from this thread?

 

It’s also knowing how disabling me/cfs and deliberately pushing those buttons to reduce access for those with this dusability by doing the opposite of reasonable adjustments- maybe we need a term fir when people create barriers and make access harder for those more disabled

Plus of course it’s just the very common silencing which is accepted as par for the course to do to pwme but would be abuse to anyone else.

if you are going to invent new bs like that then they should be required to define what they say counts as that - two letters from two pwme? Or forty? Is it disabled people being provided templates to allow them to access their rights or petitions given they can’t write individual letters but absolutely as people harmed have a right to agree with one already written ?

And of course why - and requiring that as they’ve given themselves something they aren’t permitted at all as a new coercive threat why people legal right to complain shouldn’t be used, definitely sounds like something for MPs to be getting involved with persuing and putting light on (as disinfectant)

 

Do you think they did it on purpose to update the date?

If so that is indeed outrageous.

 

That seems almost plain fraudulent to take something completed from what I can see in 2017 and pretend it’s a new 2024 publication whilst making a point ‘no changes’ - particularly when you look at the 2019 email trail of where the conclusions being warped as they now stay came from ?

 

You can imagine what the first comment would needs to be - and ‘something washing’ where people republish something bad in order to try and wash off the peer reviews sounds like a term needed

is ‘Cochrane washing’ too on the nose ?

Or is it specific to specific names in Cochrane from a specific area

 

Presumably people that previously submitted comments on the 2019 version of Larun et al just submit again exactly the same comments with an added sentence saying these points apply equally to this purportedly new 2024 edition even though it is identical to the 2019 redraft which Cochrane in 2019 accepted as failing to address the issues of the previous 2015/2016 version.

After all what is sauce for the goose is sauce for the gander.