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And we would be very happy to debate only the science, not personalities.

But they have stated in the PACE protocol that all personally identifying data is confined to a separate, different database. Or is the argument that even within the non-personal-details db (i.e. the main trial db) there can be data that as a whole that could indirectly identify a person to...

False-beliefs science.

But one with brain fog?

[ @Sly Saint 's bold ] Not "that work can in many cases be good for physical and mental wellbeing", but "IS GOOD". It's an astonishingly crass extrapolation!

Exactly. The key point is 'database', not all the data extracted from the db into excel or something. We do not want the 'full' data that has been extracted via a SQL query of their own construction, because that query could itself filter what we get ... and more crucially, what we don't get...

The BMJ group is a founder member of COPE, and COPE have the same requirement re prospective registration as the ICMJE (not a coincidence presumably, but the connection eludes me at the moment): https://publicationethics.org/case/it-unethical-reject-unregistered-or-late-registered-trials If a...

Ditto.

Isn't this what Sarah Myhill is effectively doing with her GMC complaint and patients' letters

A manipulative strategy that has served the BPS crew well for so many of the lost years, a strategy they fail to realise is now very likely to be outed on a very public stage, simply by their repetitions of it to people they don't have the sense to not do it to. It's in their DNA, they know no...

Which is what I've been saying albeit with inadequate clarity, in various posts/threads along the way.

What's more, she does not have to read it, nor be able to fully fathom it. In the same way that she doesn't need a deep understanding of law, if she needs the services of a lawyer. She simply needs to know she can trust the words of people she relies on who explain the PACE issues to her, and...

But of course our one is ;).

Re my post #69, I've just realised where my assumptions went wrong, but it should not have had to. The protocol statement regarding data confidentiality was changed. In here ... ... it said ... ... but in here ... ... it was changed to merely say ... ... thereby precluding easy sharing...

I may have originally misunderstood what I read about the PACE trial data, when it said that all patient identifying data would be recorded into a separate database. I assumed this would have been sensibly designed, so that each participant would have been represented in the anonymised...

A question based on ignorance of how this works. How can we be sure they are not over-selective about what they release? How does the process ensure that some data is not simply ignored? (As compared to data that is redacted, and thereby not ignored).

My interpretation is a bit different. The participants would not really know what the researchers did or did not record into the raw data, and so I suspect when this participant spoke of it not being "documented", they really meant it was not documented into the trial's publication. The authors...

[My bold] We have here a PACE trial participant clearly stating that their decline due to GET was not documented. If verifiable, this is surely a highly unprofessional act, possibly illegal, and at the very least profoundly unethical. I have often wondered whether this kind of thing might be a...

I particularly liked this also ...

I think I'd answer similar to my post #58. Wait a little while and see if the political momentum picks up. Best to do these things from a position of strength if at all possible - a luxury we have been denied so far. But that may just be changing - quite lot happening on various fronts, this...