Cochrane Exercise Review Withdrawn - Individual Patient Data

Someone please say yes.

eta -though maybe that should wait til cochrane have decided which group CFS should belong in. Also I know many people are stretched.

 

That will be due to the Procrustean bed by which people are diagnosed, to declare them suitable for CBT/GET.

 

For those, like me, who need a bit of explanation

Procrustean
/prə(ʊ)ˈkrʌstɪən/
adjective
adjective: Procrustean

1. (especially of a framework or system) enforcing uniformity or conformity without regard to natural variation or individuality.
   "a fixed Procrustean rule"

https://en.wikipedia.org/wiki/Procrustes

 

Sounds very unhygienic.

 

On the contrary, I think patients and academic supporters would be very motivated to making it accurate.

 

Re Adrian's suggestion:

I wondered that. Maybe Keith could head something up. Maybe someone like Luis Nacul or Eliana Lacerda could be involved. The hassle would be working to the format rules.

 

Quite so but would they be motivated to go through the hoops of actually producing a review. Tearing hair out comes to mind.

 

I approve enthusiastically of the proposal to place our own review of ME/CFS into the Cochrane library.

The current review of exercise therapy never mentions PEM and proposes that deconditioning is a useful model to understand ME/CFS, which is reduced to chronic fatigue that may be accompanied by other symptoms. In general it reads like something White et al would have written (within the constraints of Cochrane's rules).

So there is a lot of room for improvement. Getting the review of exercise therapy retracted while getting our own review of the management of ME/CFS into the Cochrane library would be fantastic. Management would include advice on recognizing and managing PEM, orthostatic intolerance, mobility aids, care for severely ill, sound and light intolerance, heart rate meter assisted pacing, and simple things like using a chair while showering and cooking.

This primer on diagnosing and treating pediatric ME/CFS is a good example to follow:
https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

 

thought this might be of interest:
https://uk.cochrane.org/get-involved

"
Write a Cochrane Review
Information on proposing and registering a new Cochrane Review can be found here and a list of the Cochrane Review groups can be found here.

Three Cochrane Trainees reflect on their experiences of writing a Cochrane Review here.

Information on training opportunities for Cochrane Review Authors can be found here.

"

 

Producing any piece of research involves hair-tearing to an extent, and patient and their academic supporters have an excellent track-record of producing things so far. I think this is doable with the right team, which would ideally include healthies and academics based in universities.

 

Been seeing some confused posts on Facebook about what has and hasn't been withdrawn, so I've just posted this to, hopefully, help clarify things. If anybody sees an error in what I've put then do let me know though.

 

Thanks Andy.

These are minor points: I guess that you can't really withdraw an unpublished review, so it was just the protocol that was withdrawn, indicating that the planned review will now not be published. Also, the statement says that it was not the authors who withdrew it but: "The editorial group responsible for this previously published document have withdrawn it from publication."

 

So by following the rules while being aware of the controversy Tovey has acted as well as we could hope by accepting the review of individual data but then giving it out to proper peer review instead of handing it to the author's mates to get an uncritical accolade.

Then he tried to get the author's of the published review to do a correction but they stuck to their guns so he would not accept it. Possibly he threatened to withdraw it without their permission and that is when they did their "Reuters" thing.

So instead he followed the rules again so they couldn't kick up about militant antiscience patients influencing things and causing more confusion and spreading bad feeling for us which he knew wasn't justified as well as damaging Cochrane's reputation. (The Guardian podcast shows how simple it would be to turn everyone against us).

Now the review is said to be "outdated" so it can be replaced by one which includes all the criticisms of the trials, or at least, gives a fair assessment of bias in them, and being done by reviewers outwith the mental health section but no one can object because all the proper rules have been followed.

This may actually be a better outcome than just withdrawing the review and leaving the BPSers to use their far reaching influence to imply they were right and the research was sound but only withdrawn by giving in to patients, not by a clear sighted look at the evidence.

 

It could easily end up like PACE--not withdrawn but essentially discredited and hopefully not really citable any longer as "evidence" to support bad policies.

 

The practice of leaving bad science in an unretracted state is really bad. Experts might know the study is bad but the rest of the world will assume it's valid and that matters too.

 

UpToDate still cites PACE and Cochrane as "evidence" to recommend GET/CBT as beneficial for some patients in their Nov 2018 literature review. UpToDate now finally acknowledges there are serious PACE methodological issues, and also that GET can worsen PEM in some patients.

Anything to discredit Cochrane is welcome, but a complete retraction would be better.

 

Certainly no arguing with this. It should be withdrawn. Whether it will be is another question.

 

I am hoping that the review will be "superseded" as out of date and one which acknowledges all the flaws with BPS research becoming the Cochrane gold standard. This will consign the rubbish to history but not let them blame us and keep pretending their conclusions were valid.

 

What is the current state of play over this so called withdrawn review that doesn't appear to be withdrawn.

Last we heard Cochrane were giving Larun yet another chance to rewrite the review or were they? No one really knows.

Almost two months later and we still have no progress. No statement from Cochrane no new review from Larun and yet no retraction.