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I remember some on-line comment from someone who said that they were a PACE participant, and that they had stopped conducting the step test towards the end of the trial as they were getting too many bad reactions. It's always worth being cautious about what one reads on the internet, but these...

Could be worth contacting the authors about their percentages, and seeing what they say?

I really hope we're able to move things forward without just waiting for those responsible to retire. That I've been so surprised by the intransigence shows how naive I was about UK science.

This 2006 document has an intro from Aylward saying it was a year since the centre became 'fully operational', so 2004 for a less than fully operational launch sounds about right: https://issuu.com/maxhead/docs/unum_cardiff_newsletter_issue_2

Was that 2004? I forgot that was so long ago. That could have come after the initial COI report, but I'd have thought Aylward should have had to update his COI. He and Sharpe contributed to this Unum CMO report in 2002...

Could be. Seems odd that no-ones found more detailed discussion about the protocol deviations. There also seemed to be some COI statements missing from that release. Thanks for putting that stuff together. General point: My instinct is to be cautious with making criticisms of the basis on...

Not really (not even really sure what that could mean - he put up the money?), but I think he was involved from even before the beggining, arguing that something like the SMC should be set up, then he was involved with the SMC from the start.

I just thought of this eg of a OCI statement from Aylward: No idea how it was made public, or if more info like this is available.

I hadn't thought of that. Another interpretation is that they wanted it absolutely clear on the record that the TSC had approved of the changes laid out in the statistical analysis plan (which failed to include the deviations to the recovery criteria) before analysis commenced. Annoying. I...

What has changed is that people realised that many of the claims made about the benefits of CBT and GET are misleading and founded on junk science. Knoop and Bleijenberg were to two authors of the Lancet piece claiming PACE showed CBT/GET led to a recovery rate of 30/28% according to a "strict...

http://www.ref.ac.uk/media/ref,2021/downloads/Criteria%20phase%20panel%20membership%20-%20updated%2023.03.18.pdf REF2021 is an important process for assessing the quality of research from UK universities, and can have a big impact on future funding that they attract. REF2014 was full of BS...

Saw they thank PACE's Kimberly Goldsmith:

I think that was another CTU, focussing on mental health.

I hadn't seen that before. It makes it look like the MRC really don't know what was going on. I doubt they know when the recovery criteria was changed.

From 20020607 Draft minutes of PACE team meeting.pdf Some stuff on pacing here that further supports peoples concerns about 'pacing' being turned into something more like CBT/GET in order to be a part of the PACE trial, rather than the minimal patient-led approach patients use. Their concerns...

Okay. Looks like this did include some objective outcomes, but they haven't published these yet (unless I missed them): "Assessments of physical function included the chair stand, six minute walk, and balance tests.55565758 Participants’ muscle strength and power were also assessed using a leg...

I just thought I'd point out that this was not from the PACE authors, or at least, it doesn't say it was. The identity of the author is far from clear, but it says: "Any specific expertise relevant to studied paper (beyond statistical)? Experience in the design and analysis of randomised...

Slightly OT, but I was just reminded of Wessely's comment under Rehmeyer's piece about the release of the reanalysis of PACE's results using the protocol criteria for recovery: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/comment-page-6/#comments Currently no sign...

Seems deeply shifty to present the trials protocol, published in BMC Neurology once the trial was already underway, as merely the "preliminary PACE analysis plan". I think you're right to pull that out as an extraordinary claim that we should draw attention to.

That's not hugely impressive. I'm not surprised he decided to avoid spinning that out to a whole minority report.