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Rather think they are digging a nice deep hole for themselves.

Many thanks @Simon M. Of course all these deliberations of improvers, be they statistically significant or clinically important, are all subject to the overriding caveat that they are self-reported and incorporate significant favourable bias in them. If that could be corrected for (i.e...

Does make you wonder if the fraud case would be laid open, and they are cr*pping themselves at the thought.

Is this what they've done with the data? :rolleyes: http://theprintnews.co.uk/2016/10/queen-mary-and-the-cloak-of-invisibility/

Yes, I like the way David has clarified the nonsensical now-you-see-the-data-now-you-don't absurdity, making it obvious for all to see that it is nothing more than a ludicrously childish excuse. The more they resist releasing further data, the more you wonder just what it is they are so...

Brilliant indeed. Well done @Kalliope.

The ethics approval for this might be interesting. On the once hand it could be an extremely informative pilot study. On the other hand it could inform that people can suffer severe worsening of their condition.

When it comes to people having been harmed as a consequence of PACE, some of those potentially most harmed are those totally unable to submit a complaint - those who have died. This thought prompted by the spate of recent deaths that have been announced of severe ME sufferers. I cannot claim to...

Seems to me like an incredibly convenient and extremely weak excuse.

As soon as you see a 'paper' talking about their own interventions being better than a 'magic cure' ... that is the biggest tell of all that a hefty dose of bullsh*t is on the way :).

That's really useful. Will be nice when we can have an education library to hold this sort of information.

P.S. We are very modest as well :).

https://sci-hub.tw/10.1016/0022-3999(94)00085-J

A bit like the dog ate my homework.

My thinking also. In fact it suggests that the protocol (or other document?) for any trial should include provision for how the data and access to it will be maintained, long after the trial has finished. I suppose it's too long a shot to hope they may have made any such undertaking in their...

And by the same token, if you are nonetheless happier to just lurk, that will be fine also.

Far from it. We all know how very hard and capably you strive to help PwME. I think "intruding" is the very last word anyone would think. My wife has ME, not me, by the way.

Brilliant to see you here David! :)

If they are saying that the specific data being asked for is too deeply/obtusely buried within the full dataset, and there is no longer anyone available who can extract it from that dataset, can we not simply just request the full dataset, albeit anonymised? Have they any good argument to not...