Maybe they wanted to see how things shook out with Larun, the HRA, etc? Maybe they now feel they have cover for ignoring the problems with this research? Or I guess sometimes things just get delayed?
I does look like a ridiculous piece of research if they're just interested in how to manipulate...
It could be just a well meaning individual who has struggled to understand all the details of the problems around ME/CFS. It's easy for people who've been following this stuff closely just how confusing it can be for people who are relatively new to it.
The first paragraph of this paper of his also made me think of his PACE work... yuck.
https://www.cambridge.org/core/journals/cambridge-quarterly-of-healthcare-ethics/article/reflections-on-the-nature-of-public-ethics/94A53F672D5362318A3F430B43935E7A#xml=http://journals.cambridge.org/data/userPdf/
The most high profile publicity we've got over the last few years has been Kelland's pieces that portrayed patient advocacy efforts as 'radical' and a threat to good science. That sort of visibility is not useful for us and it is worth doing what we can to avoid it imo. We're a weak group whose...
Was just looking through Jonathan Montgomery's old twitter account (https://twitter.com/prof_jonM), and saw this, in addition to his clear chummyness with Gerada:
He seems uninterested in genuinely listening to patients, rather than trying to smear those he doesn't like and use those who tell him what he wants to hear. I'm so sick of propagandists like him.
On PACE:
https://forskning.no/me-medisin-sykdommer/hard-kritikk-av-stor-me-studie/330976#...
IMO: if he's the sort of person who falls for this sort of empty spin from authority figures then he's probably not the best person to prioritise raising concerns with. It might still be worth a go, but what we've seen so far has not been impressive.
Quite a few references from Lewandowsky, who has done his bit promoting lazy prejudices on this topic.
Looking for those old references turned up this 2013 blog, which rather misrepresents attempts to get information about PACE:
http://www.shapingtomorrowsworld.org/lskymannSubter.html
He seems to miss (evade?) every point. I think this new blog is even more contemptible than the first. It's as if he really thinks that knowing what he's talking about is entirely unnecessary.
edit: @Barry already posted these links back in 2017 - https://www.s4me.info/threads/trial-by-error-a-sneak-preview-of-next-week%E2%80%99s-post-27-december-2017.1677/#post-28696
The HRA has helpful guides on 'is it research' and 'do I need NHS REC approval'...
Free reservations for a Fiona Fox talk in Bristol on 25th November!:
Science in the headlines – where science meets controversy
by NIHR Bristol Biomedical Research Centre
https://www.eventbrite.co.uk/e/science-in-the-headlines-where-science-meets-controversy-tickets-77144333779
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