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Recovery was a secondary outcome in the protocol. As I see it the stats plan in May 2010 replaced the protocol in terms of the analysis that was done and if I remember correctly contained no mention of recovery. This then allowed them to use an adhoc recovery definition when they wrote the...

I had assumed that the recovery definition was basically dropped from being a secondary outcome when the stats analysis plan was approved as it failed to mention recovery. I don't think that plan ever acknowledged the changes or gave reasons but just did them. I wondered if they never got...

No because too many are doing the same thing.

Nearly all if not all have the fault of using subjective outcomes in open label trials which is compounded as the interventions seek to change views on symptoms. PACE was actually quite a good trial compared to the other small trials which is why they ended up doing the outcome switching.

I think I read about similar approaches for Leukemia a few years ago. But this seemed to be taking blood out and 'training' cells to recognize the cancer and then putting them back.

I've not read this book but I read some of his papers a few years ago and thought they were good. I have a feeling his work was one of the few pieces that one of the replication projects managed to reproduce.

Yes I don't get these scales - sorry the rest of this post is a rant about questionnaire scales in general! I read some stuff on Likert scales and it was very clear ask the same question multiple ways in order to reduce answer error. What some of these 'scales' ask is completely different...

Nor me but I did wonder about things like looking at computer activity.

I think I would prefer an approach using activity monitoring I assume PEM would show as a dip in activity. But then if that could be coupled with other symptom data such as cognitive tests, measures of pain etc then may be that would help.

It can't be worse than the CFQ can it? I think certainly not suitable for a primary outcome.

I think James Mowbray was on the list and as I understand it he believed ME was a viral infection but I don't really know what was going on then as I wasn't involved. Yes I think it was trying to include a few others and I wondered if the PIFS thing was to keep them happy. But its history I...

I think the difference between 9.9 and 11.1% of GDP is massive in terms of that additional amount of money that helps smooth a system. I think the NHS has another issue which is around doctors pay. I think the UK is one of the highest paying places for doctors yet the funding doesn't follow. It...

If a lifespan is short (I don't know the how long woodpeckers live) then degenerative diseases may not be a problem. Evolutionary adaptations will lead to survival so it could be that something that would lead to degenerative disease later in life but have short term benefits could be useful in...

Yes I believe so he had an early copy hence was able to comment on facebook and is thanked for his help in the main document.

Sorry Leonard Jason he posted some comments on facebook. I've edited my message for clarity.

I've read a few of Wessely's papers and they always struck me as having logical inconsistencies of big jumps in reasoning. I did think if someone were to formalize the arguments being made then they would become obvious. It can be a case of style over substance - there is a reason maths is the...

My point was for trials like PACE which basically had poor results and a meaningless methodology gives a more obvious reason to dismiss results than a discussion over criteria which will always remain somewhat subjective because we have no understanding of disease mechanism. Do they? Does that...

The poll also relates to comments produced for the NIH-CDC consultation which are posted here https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-concerns-with-the-proposed-measure-of-post-exertional-malaise.2220/ Thanks to @Simon M and others.

Yes it went in a couple of days ago but the team wanted time to write up a summary to post and deal with Leonard Jason's comments. After the rush to get the commentary done (and process the survey results) that took a little while.

It may also be the location of the comment. He probably only cares about how certain groups of professionals view him and his image so commenting on a blog is safe but writing to nature is a different thing. I get the impression he does back channel lobbying of journalists.