PACE data request FS50600710 (not the appeal case)

[Esther12]

Their friend Vincent Drreary joined one of the earlier UK internet groups. He didn't announce himself, just lurked until it all got too much for him.

I don't have his parting email but he refused to engage in any meaningful discussion and left in a huff. His last email was somewhere along the lines of us all being ungrateful for all the work that the psych lobby was doing "for us".

http://www.kcl.ac.uk/innovation/groups/projects/cfs/patients/history.aspx

Would love to see a record of all that.

 

[Bob]

This elongated graph helps to show what's going on...

Timeframe = 0, 12, 24 & 52 weeks...

Looks like a baseline + random noise to me.

Yep, i agree. It looks like it confirms that there were no significant difference between changes in any of the groups at 52 weeks. But that's not a surprise - they've already confirmed it. But it's nice to see it confirmed in a graph.

 

[Esther12]

One other thing: I seem to remember that there were a ragne of ways of calculating 'fitness' from the test done. It wasn't clear to me that the specific approach used by PACE was pre-specified, so could it be that an alternative approach would have led to significant differences? I don't know.

Also, did we get figures on drop-out rates for this test? I had a quick look and couldn't see them.

 

[soti]

Re ever having a conversation... not going to happen, as each side believes the other is delusional. So it's a non-starter unless/until either we or them feel differently. Which is not going to happen. I can't see a way around that.

 

[Dolphin]

One other thing: I seem to remember that there were a ragne of ways of calculating 'fitness' from the test done. It wasn't clear to me that the specific approach used by PACE was pre-specified, so could it be that an alternative approach would have led to significant differences? I don't know.

Also, did we get figures on drop-out rates for this test? I had a quick look and couldn't see them.

 

[Hutan]

Looks like a baseline + random noise to me.

Yep, with a trend of an average small improvement in fitness over the year, mostly regardless of treatment.

However, if you wanted to push the conclusion a bit further, and given the large sample size, perhaps that's warranted:

Over the full length of the trial, for SMC(red) and APT(blue) groups: some people improved a bit while most stayed much the same (see the large variability in these groups at the end of the trial).

Whereas people in the GET/CBT treatments stayed pretty much the same from the beginning to the end of the trial. So the GET/CBT treatments appeared to reduce the chance of a spontaneous improvement in fitness over one year.

An analysis of the raw data (that also gave data on participant drop outs) would help to evaluate that statement.

[edit: one way to get what I mean if it isn't clear is to draw lines from the 0 weeks to 52 weeks upper and lower confidence limits to create a quadrilateral for each treatment - and then compare them ]

 

[BurnA]

from Andrew gelmans latest blog ( not related to ME but to peer review )

If you think of scientific research as a game where the prizes are publication, renown, and tenured professorships—then yes, by all means, try to bury all criticism and fight so hard that nobody will ever want to mess with you again.

On the other hand, if you think of scientific research as a way to learn about reality, you should be thrilled when your expectations are confounded, when someone points out an error and you have to rethink. Sure, it’s disappointing, but out of such disappointments are new understandings made.