Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

I assume you are aware that Iain Chalmers is both a co-founder of Cochrane and was the coordinator of the James Lind Initiative which according to Wikipedia, "includes the James Lind Library and the Jams Lind Alliance"?

Edited to change Chalmers function to the past tense, see: https://www.s4me.info/threads/cochr...evelopments-2018-19.10030/page-19#post-280738

 

Partners are only "laterally" involved, eg asked to "advertise" the questionnaire to members etc. They won't be involved in decision-making.

 

And that he was an early member of Campaign against Health Fraud, later Health Watch, alongside such as Caroline Richmond and Simon Wessely, which appears to have exceeded its original remit of pursuing the quacks who preyed on gullible invalids to pursuing the invalids themselves. This may merely have been a lack of strategic thinking, or it may not.

 

Interesting discussion. You (@MEMarge) and @Andy clearly know about certain smoke-filled rooms others have not found the door to. You might have said:

The Nild-stocking Group haven't started the process of signing up grippers etc yet, but the MGM Determinator mentioned at a Herbaceous Group Meeting that Cochrane had expressed an interest in being a partner organisation. I think they are involved in this way in a number of BURPs.

I am glad that members here are privy to these matters. It would be interesting to know more but I appreciate that some of us gummidges may not appreciate the finer detail. And I would not want to rock any boats.

 

thank you very much I feel very honoured

 

Iain Chalmers is no longer involved in the Priority Setting Partnerships - he is just on the James Lind Library now https://www.jameslindlibrary.org/about-the-library/. I think the Alliance which runs the PSPs is now run by the National Institute for Health Research. Iain is not even an advisor any more. A PSP for ME was suggested a while ago when Iain was involved, but it never happened. The James Lind Initiative wound up when Iain retired in 2018 https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-019-0138-2.

 

I had forgotten all about that thread which is why I could not follow what Andy and MEMarge were saying on yet another thread.

 

James Lind Initiative, may be different from James Lind Alliance!
All so confusing

 

Fortunately, if there is any likelihood that I might be able to say something useful someone pokes me with a stick. And I get updates from birdies from time to time.(Whistling sound heard.)

 

Thank you, Caroline. I missed that. (Which year do we have?)

Apologies for any confusion.

Yes, see the commentary @Caroline Struthers referenced:

And:
https://www.jla.nihr.ac.uk/about-the-james-lind-alliance/history.htm

 

It was 2009 or 2010 when I suggested a PSP was needed to establish potential harms from GET, given the disparity between evidence from trials and from patient surveys. Iain told me it was not required.

 

The paternalistic 'I know what's best for people' attitude seeps from every seam of the system.

 

Can someone remind me what the PSP process is about?

 

No need for another RCT, Trish, as PACE wasn't yet published. GET was just a convenient example of the uncertainty that lies within the JLA remit. Overall I was proposing a PSP to re-evaluate diagnosis and treatment, post-NICE.

 

The James Lind Alliance is also well and functioning in Canada. I note that they inevitably have the list of things patients care about long enough so that it will always manage to include psychological concerns. When patients are truly involved the list can usually be whittled down to 5 or under I think but ten will mean that the psych types involved convince patients to include it at some point down the list.

One thing you can be sure of is that this particular sub-set of psychs believe in their own essentialness. (ok computer telling me that's not a word)