If I were reading this I might want to know who made the decision but it's up to you. It's a really good letter, Graham, I hope he takes it on board.
Thanks both. I can't remember which American body decided that the studies using the Oxford criteria were to be dropped. Help please - brain decaying. @Sean : are you sure it is most notably UK research that is poor? I doubt if that is true. I've more or less added all your suggestions, but I'd like to keep something that refers to the "fear" of speaking out that inhibits valid criticism. Any thoughts?
Very good. Suggested edits: (page 1) "the major problems in both the original study, or in the recovery paper". "or" should be "and". "ME is the simply the result of fear and deconditioning (the hypotheses set out in the PACE trial)". 'hypotheses' should be 'hypothesis'. (page 2) "have had dramatic effect" - should be "have had a dramatic effect"? Or maybe "have had dramatic effects"?
@Graham wrote: AHRQ (Excellent, lucid summary of AHRQ process mess which fortunately reached the conclusion they should have drawn at the beginning. Excellent work by Spotila and Dimmock.) http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/ More info on the P2P here: https://prevention.nih.gov/sites/de...workshop/2018/PForP_Newsletter_Summer2018.pdf
A couple of tiny points to add to the confusion: ''vital insurance claims'' I would change to ''disability insurance claims'' S4ME - I would write the full title Science for ME and give the web address. I agree this is a personal letter, and best coming just from you.
Thanks, @MeSci . Duly amended, but there were two hypotheses in the PACE trial: fear was one and deconditioning the other. Thanks @akrasia for the link - duly added. Thanks @Trish - done!
I’ve been a bit slow to catch up here...I’ve now read all three versions . I think it’s all good @Graham apart from one sentence. As @Sean mentioned, I would take the old boys network sentence out ...I don’t think it needs spelling out. When I was going through my poor performance disciplinary and discrimination/unfair dismissal tribunal at work it was always better to use phrases like “this is confusing” or “I’m not sure why that may be” rather than spelling out a speculation or reason for other people’s behaviour. You don’t have to speculate for them, although the reader can normally join up the dots and form their own conclusions without actually saying it?
A hot, gassy object giving out deadly radiation? OK, @arewenearlythereyet and @Sean , motion carried!
Fair point. I was thinking in the sense of numbers of papers and influence. Certainly are serious methodological and ethical offenders elsewhere, such as the Netherlands and USA.
I’m sure you just forgot to remove your yellow cloth after brushing? Or possibly you polished too well?
I have received a quick but short reply, and it is pretty much as expected. Dear Graham, Thanks for your interest in the article! I do know something about the PACE trial from Twitter, but not much more than that. I’ll read the briefing note you attached. In general, I prefer to focus on broad issues rather than specific studies. This is partly to ensure that I don’t get mired in any particular debate, and partly because I think the root causes of problems of reproducibility lie in incentive structures and research cultures. Ultimately I think we need to change these if we’re going to improve scientific quality, and the scientific environment more generally. For that reason, and because other people better qualified have already commented on these issues, I don’t think it would be helpful for me to contribute (and would take time I simply don’t have given the focus on setting up the network, putting in place training across the partner universities and so on). I hope you’ll understand! All the best, Marcus Munafò Professor of Biological Psychology MRC Integrative Epidemiology Unit UK Centre for Tobacco and Alcohol Studies School of Psychological Science University of Bristol 12a Priory Road BRISTOL BS8 1TU United Kingdom
Nice reply, understandable under the circs, but I think you've contributed to the general consciousness-raising around this, which will be especially useful in Bristol University. Interesting that he's come across the issues with PACE on Twitter. I always wonder how much of an echo-chamber we're in and it's good to know that some of it is getting out (although he doesn't say whose side he's read on Twitter!).
My initial thought is just to reply briefly, thanking him for his response, and just to point out that a reluctance to get involved in specific debates lies at the heart of the problem in the UK, and allows third-rate work to not only prosper, but to have influence.
You could do that, and it's a good point, but I doubt it will persuade him to take action. But how about asking him for advice about that? Given that we need people to stand up and be counted on PACE, how would he advise us to get them to do that? If he were a patient with this condition and wanted to mobilise academia against this bad trial, how would he do it? Or does he think it's impossible? In which case, should his group also be turning their attention to that general problem - the one of what do you do about a bad trial that's already been conducted and is affecting the health of patients?