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The response is also on sci-hub (I couldn't access it at the journal): http://sci-hub.se/https://journals.sagepub.com/doi/abs/10.1177/1359104519846571?journalCode=ccpa I can't tell if she deliberately avoided the central point of your letter or just did not understand it.

That could all be true, but there was no mention of it in any of the SMILE papers. They said that they would check school attendance using school records, and in the media Crawley has claimed that they did so and that this validate the self-report outcome they reported result for, but we have no...

You asked for: "School attendance in the previous week, collected as a percentage (10, 20, 40, 60, 80 and 100 %)." You got a form of this, however in the SMILE projects initial protocol (http://www.bristol.ac.uk/media-library/sites/ccah/migrated/documents/smprotv6final.pdf) it said: “The...

Thanks Lucibee - so that confirms that this is not the unpublished data from school records. @JohnTheJack - it could be worth checking if this data was omitted by Bristol in error?

There can be good reasons to doing a single longer questionnaire. eg: If it was multiple shorter surveys then we wouldn't be able to say that certain answers to question 3 correlate with certain response to question 20. I've not looked at this questionnaire so don't know if that might be an...

The final guidelines are out: https://www.nice.org.uk/guidance/ng127/resources Chair of the committee for this was Richard Grunewald, who was on the last NICE CFS committee. Some bits of interest:

Who has given Helland authority in this area? She's clearly not up to it. Is there anything that can be done to get her to debate her positions?

From what I remember of the ruling, Bristol was making arguments about reidentification via school records, so at that point they seemed to realise that you were requesting the data for the school attendance records. Might they have tried to omit that from the release? Could you just check with...

You converted the ICO mid-appeal?! Amazing work. Thanks John - you're providing too much material for me to keep up with.

@JohnTheJack: Do you know if the data on school attendance provided is that which allows to calculation of the trial's presepecified primary outcome (ie: that from school records, rather than just the participant's self-report)? I was expecting there to be two sets of school attendance data...

100 on SF36-PF and 0 on CFQ would be someone filling in the forms as positively as possible - that makes sense doesn't it? Or do you mean at baseline? Sometimes with SF36-PF when there is no answer to a question they use the average score to the answers given rather than counting the missing...

Or it could be that they've been doing formal research on this, but are not saying anything about results not submitted as a part of their paper. Taking that cautious approach with public statements probably would be best. I'd hope work like this has been going on, but we've seen how...

It's quite a stark difference between patients and controls, so unless there's been a real screw-up this should lead on to some interesting work. I've got some concerns about the politics of promoting this to the media now, but even if this is something the 'only' provides a useful way of...

I have a morbid curiosity over how they're planning to cover-up the problems with Crawley's work... and a sense of dread that they're going to completely get away with it.

Personally, I think that it's worth doing all we can to avoid linking this finding to criticism of their work. If this finding ends up not working out then that doesn't show that PACE was a decent piece of work, but we've saw how with XMRV that negative result has been used to try to undermine...

I'm sure I've seen this posted before, but maybe when it was hosted on a different website? edit: it looks like actually it was the same site, but with a different address previously. Always good to see different groups of people being informed of the problems around PACE and everything.

I wonder if promoting these results to the media prior to independent replication is a mistake. edit: And the using of non-CFS ill health controls.

It looks like you need to log in, so google translate isn't working for me.

Here are the embarassingly appalling responses from COPE to two issues with Esther Crawleys work (or at least they look like it, they're somewhat anonymised): https://publicationethics.org/case/service-evaluation-research-controversial-area-medicine...

If awareness of the problems with PACE is being spread I'd put up with 'tired all the time' tbh!