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

MEMarge said:
Yes, the ME PSP.
The Steering Group haven't started the process of signing up partners etc yet, but the JLA Facilitator mentioned at a Seed 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 PSPs.
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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
 
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MSEsperanza said:
I assume you are aware that Iain Chalmers is both a co-founder of Cochrane and the coordinator of the James Lind Initiative which according to Wikipedia, "includes the James Lind Library and the Jams Lind Alliance"?
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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.
 
MEMarge said:
Yes, the ME PSP.
The Steering Group haven't started the process of signing up partners etc yet, but the JLA Facilitator mentioned at a Seed 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 PSPs.
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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.:sneaky:
 
MSEsperanza said:
I assume you are aware that Iain Chalmers is both a co-founder of Cochrane and the coordinator of the James Lind Initiative which according to Wikipedia, "includes the James Lind Library and the Jams Lind Alliance"?
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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.
 
Caroline Struthers said:
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.
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Thank you, Caroline. I missed that. (Which year do we have?)

Apologies for any confusion.

MEMarge said:
James Lind Initiative, may be different from James Lind Alliance!
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Yes, see the commentary @Caroline Struthers referenced:
The James Lind Initiative (JLI) was a work programme inaugurated by Iain Chalmers and Patricia Atkinson to press for better research for better health care. It ran between 2003 and 2018, when Iain Chalmers retired. During the 15 years of its existence, the JLI developed three strands of work in collaboration with the authors of this paper, and with others.
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Work themes
The first work strand involved developing a process for use by patients, carers and clinicians to identify shared priorities for research – the James Lind Alliance.
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And:
https://www.jla.nihr.ac.uk/about-the-james-lind-alliance/history.htm

The JLA infrastructure is funded by the NIHR.
Read our relationship statement.
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Mike Dean said:
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.
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Interesting. Were you suggesting patients would vote for a further GET trial with properly assessed harms? Given the amount of harm recorded in patient surveys, surely such a trial would be unethical.
 
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)
 
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