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That doesn't sound good. Looks like this is another area where NICE has caused problems. Hopefully, if we can improve things with NICE, that will help here? Maybe drawing attention to the growing recognition of problems with research like PACE, and the reasons NICE gave for their recent...

I think so. Could raise SMILE, but I doubt you will get anywhere with them.

They seem to have removed comments that raise concern about Crawley making false claims. Maybe they see any implication of dishonesty as 'abuse'?

I'm always happy to be criticised! I find it hard to improve without criticism tbh. Also, I think that one reason why we've made more progress with things like PACE over the last few years is that patients have become more critical of one another's advocacy efforts. We're up against so much, and...

I feel like I must have been unclear about something if I gave the impression I wanted to control Jen's decisions about possible treatments or what she says... I certainly don't want to own Jen! [edit: or I may be wrongly assuming your post reflects a belief that I did want to control Jen? - it...

Allowing oneself to be guided by prejudices dominant amongst the Establishment is not much of a risk in the UK.

I understand that, and I might be missing context that provided even more caution, but it's just hard for anyone to know why it is that caused their health to fluctuate in a certain way. Whatever the cause, I'm really pleased Jen is feeling a bit better, but this may not be a result of any...

It was clear she and Lewandowsky had no idea what they were talking about then too. They organised this meeting featuring White and Crawley presenting CFS patients as one of the most fearsome threats science faced: https://figshare.com/articles/RS_scienceandsociety_September_2015_pdf/2061696...

Yes... my thoughts exactly. I was never able to find how/if REF2014 did any sort of independent evaluation of the claims on research impact submitted to them. The submissions made around CFS were pretty consistently absurd. Considering the amount of funding that can be affected by REF, it all...

It's possible that's true, but it could also have been a result of natural fluctuations, Jen learning to better manage her condition, etc. It's hard to be sure of anything when there are likely to be so many different sub-groups within 'CFS', but I'm wary of making such a strong claim about...

If commenting, important to be particularly cautious and rigorous (and ideally polite!) given the prejudices Crawley has been promoting about her critics.

That was my suspicion too. Still, they did mention wanting to increase involvement from those with disabilities, etc. Also, they might not be great at filtering out us wrong sorts? Getting people in the room on things like this could be really helpful.

A couple of REF2021 consultation workshops in London that people can sign up for (Dec 20th deadline again). Having a reasonable familiarity with academia/research looks like it would be helpful...

REF2021 is really important to UK universities for the assessment of their research, and the allocation of future research funding. I only just saw this, and expect it may be too late for people to sort out: http://www.ref.ac.uk/about/nompan/ The last REF project seemed totally credulous in...

If he didn't know that would be made public, could be worth staying quiet for now?

I thought I'd post some extra bits about the SMC/CMRC, for people unfamiliar with the link, although I don't go into any detail on the role they've played hyping the PACE trial's spun results (their website can be searched for evidence of that). The SMC summarise their own history in this...

I apologise for my mistaken interpretation of your post... no blame! From the look of your avatar, I now imagine you as not exactly fitting in with the culture of modern times.

A bit OT, but I was just reading this article with Helland praising the results from SMILE, and thought I'd post it here: https://translate.google.com/translate?hl=en&sl=no&tl=en&u=https%3A%2F%2Fwww.dagensmedisin.no%2Fartikler%2F2017%2F09%2F21%2F-dette-er-veldig-spennende-resultater%2F

I had the article open all this time, so when I just clicked on 'show new comments' all your comments from over the hours appeared... looked like quite the battle you and DISQUS were having!

But not making mistakes is good! There are degrees, and making a mistake but then owning up to it and responding appropriately shouldn't normally be a shameful thing, but I'd still prefer to have a surgeon who made fewer mistakes than average. Some mistakes do cause great harm to others, and...