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

[James Morris-Lent]

And who are these non-patient activists who are trying to discredit science? How did they infiltrate us? And why?

 

[Lucibee]

@dave30th - that'll be you he's talking about. Congratulations, Michael Sharpe has invented a whole new category just for you. He already has one for @Tom Kindlon et al (biased ME sufferer), now we have "not patient activist" for those who don't have ME.

And me.

Does that make us "impatient activists"?

 

[Hoopoe]

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.

 

[Barry]

I think the data on this is invalid because such a large proportion of patients didn't do the 6 minute walk at the 12 month follow up. Given that refusal to do it is most likely to be deterioration of symptoms, and that more in the GET group didn't do it, any claims of the GET group doing better on the walk are invalidated.

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.

 

[Barry]

The subjective-objective correlation test I most want to see is the 6MWT for the GET arm.

It is the only objective outcome that delivered a statistically significant result (though not clinical significance).

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.

 

[Barry]

I'll try again... View attachment 3528

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).

 

[Lucibee]

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.

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.

 

[large donner]

That's how I read it--the "by" was a typo--it should have been "but." In other words, the patient activists reject it, but most patients are not activists and they accept the validity of the treatments.

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.

 

[Barry]

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.

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/

On my recent trip, I interviewed one participant at length. He made a particularly salient point: Although during the trial he appeared to increase how much he walked, he did so at the expense of engaging in other activities. In other words, even those who increased their walking distance in the PACE trial might have done so by compensating for that extra exertion elsewhere their lives. So as this participant explained, he didn’t in the end engage in more activity overall—just more walking.

 

[Lucibee]

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.