Discussion in 'PsychoSocial ME/CFS Research' started by Melanie, Jul 11, 2018 at 3:53 PM.
The SMILE trial clearly fails to fulfil BMJ's requirement for research they publish. It takes five minutes of checking to see that. What reality distorting excuse can they hope Crawley can come up with?
The longer it takes the more obvious it's just spin.
Spin takes time. Or at least longer than just investigating & acknowledging the truth.
Can the BMJ drag it's feet even more than PLOS ONE has over the 2012 PACE Cost-Effectiveness Analysis ?
If I was on the new NICE guidelines committee I would be asking for cost effectiveness issues to be addressed before I would consider including CBT/GET in scope
They hope that small gestures will make us and reality go away.
maybe it seems to them like a big gesture as even what to us is a weasel worded nothing statement means they are having to admit publicly in writing that there is an issue
I think they believe they are doing their jobs well. Though belief and reality are very different and not just in this case...
I would prefer if the title was changed. The note is from the editor of Archive of Diseases in Childhood, not the BMJ.
That would be clearer, but he is an editor at one of the journals of BMJ, the company. So technically I guess it's accurate to call him a BMJ editor, but he's not an editor at the flagship journal, The BMJ.
There are 60 journals in the BMJ journal group: https://journals.bmj.com/content/journals
I still don't get what they think they gain by posting such a lame editor's note. they can't possibly think it takes them off the hook.
David Tuller called them out on that in his Trial By Error installment. It was posted here, somewhere. He does hold BMJ responsible, from what I remember reading, as they have had other papers on LP and SMILE printed in their journals. If I remember all that correctly.
EDIT: Oh, you ARE David Tuller. Sorry.
I changed it.
Yes they do think that, if token gestures and time wasting will make you go away then they have won without doing much, if it doesn't work they will falsely point to it as proof of their good faith and it covers their butt if they are forced to do more in the future (they were proactive...)
I was at both January "Engagement" and May "Scoping" NICE events and I can assure you that I raised this very point! BUT, there was only the opportunity within our "groups". NICE did their intros
(about 20-30 mins) , talking at us with only a couple of questions allowed (I asked one!) Dr Chaudhuri another. Then it's into groups with a 5 minute summing up at the end. A NICE method for keeping those thorny comments questions at bay. To my knowledge, we never did receive the write ups from each group. A resume was issued at some point but we wee not sent it or made aware! Norfolk and Suffolk Commissioning excluded CBT from their spec on cost grounds.
NICE do look at the economics of their proposals.
Extract from draft scope:
"3.4 Economic aspects
21 We will take economic aspects into account when making recommendations. 22 We will develop an economic plan that states for each review question (or key 23 area in the scope) whether economic considerations are relevant, and if so 24 whether this is an area that should be prioritised for economic modelling and 25 analysis. We will review the economic evidence and carry out economic 26 analyses, using an NHS and Personal Social Services perspective."
Whole draft scope: http://www.meassociation.org.uk/wp-content/uploads/NICE-MECFS-Draft-Scoping-Report-19.05.18.pdf
I have no idea how they calculate "cost" of CBT/IAPT.....If it's a few sessions of CBT and 60% are cured....?!?!
I think lame outcomes often result from collective decisions where no one really knows what to do. Some want to still bury their heads in the sand and do nothing; others respond by saying you cannot do nothing; maybe some lone voice says they need to be honest and open (but maybe not). In the end the compromise decision is inevitably lame.
Also what a transition phase often looks like. Caught between two positions, slowly coming around to the new one, but still with one foot firmly stuck in the old one.
Absolutely. Transitions can be far from obvious when in the midst of.
Separate names with a comma.