David Tuller: Trial By Error: Professor Sharpe’s Pre-Hearing Briefing for Monaghan

And me.

Does that make us "impatient activists"?

 

It's the young men, borderline sociopathic and psychopatic, who are attaching themselves to PACE trial criticism.

True ME patients are well mannered and don't question researchers who are only trying to help.

 

That sounds very valid to me. I find it worrying that, by definition, dropout's data are missing, and too much is presumed about it being irrelevant, when in actual fact that data it may be some of the most important. Especially if the dropout rate is significantly higher on the more physically demanding tasks.

 

And it also has to be noted that even for that, there is at least one anecdotal statement from one of the GET arm PACE participants (in a response to one of @dave30th's blog posts?) that they essentially exchanged some of their normal physical activity for 6mwt activity, so their overall activity was no better. If there had been some control in the trial to account for that, then I very much doubt any significant improvement would have been seen.

 

If I'm understanding correctly what I'm looking at, this is basically showing that any percentage increase in people's subjective interpretation of their physical function, far exceeded any objectively measured percentage improvement in their actual physical function. (Again with the corollary that this does not account for any corresponding decrease in PF outside the trial to compensate).

 

Do you have a link to that comment? I had a look earlier, and found a few more to add to the PACE reports thread, but couldn't find the one you mentioned.

 

So its the questioning people who are wrong not the unquestioning. Line up the congregation. Those who have the blind faith and follow the self appointed priests are the ones who are patients, the others are activists.

However when people follow the priests in blind faith and see them getting more and more power and remuneration and yet themselves gaining nothing from the sermon or the promised pronouncements, they too wake up and become activists.

I get it now.

 

Not found exactly what I was looking for, but something fairly close.

http://www.virology.ws/2018/01/15/trial-by-error-my-six-month-review/

 

Thanks Barry, I've added it to the PACE reports thread.