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...
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...
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 :).
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...
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.
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...
This statment by SW acknowledges that there may be some cases where exertion is to be avoided; no ambiguity. He also confirms no one has any idea who these people are; no ambiguity. He also says that in general such advice is counterproductive, tacitly acknowledging therefore that in some cases...
Possibly akin to writing an exam paper and students then taking the exam ... only to then modify the exam paper (having already had some sight of the students' answers) and then mark the student's answers against that modified paper? Is that a valid analogy, or am I being a bit unfair here?
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