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

They are just going to say that ME is a tiny subset of CFS.

 

Watching paint dry .

 

Which comes back to the subset of a subset thing.

 

If you are a scientist by definition you follow the scientific method if you don't do that then you are not a scientist.

The PACE trial defence only includes quotes from psychiatrists.

 

To me one of the greatest indications of sources of bias in PACE, is the deep rooted intransigence of the authors all these years later. With such a closed-minded approach to science, what hope did it ever really have?

 

Thank you @Lucibee

 

Thanks a lot for that Lucibee. Made me feel even more irritated with Sharpe!

"This is demonstrated by the lack of any difference in the more objective outcomes used in the trial."

I thought I'd mention that there was a statistically significant difference between SMC and SMC+GET for the 6mwt.

That briefing from Sharpe makes it sound like he's really just not up to the job of engaging in a debate about the quality of his work.

Strange how Sharpe made a deal about TSC approval for the protocol deviations on their primary outcomes, but made no mention of this for the 'recovery' deviations.

Sharpe wrote: "Whist there is no agreed definition of recovery the figures we reported were approximately 20% with CBT and GET, and approximately 8% with the other conditions."

Why change from 22% for CBT/GET, 8% APT and 7% SMC?

Later on Sharpe said: "We published a secondary paper exploring different definitions of recovery and found about twice as many people could be considered recovered with CBT and GET (about 20%) than with APT and SMC (about 10%)."

Is he now trying to play down how impressive their claimed results were?

This is my favourite bit from Sharpe: "This released data has been used to “reanalyse” the trial results, with a claim that the published results were misleading. The reanalysis is flawed and misleading."

What's with the scare quotes around "reanalyse"? He can't even bear to use that term for the analysis which just followed his pre-specified protocol? Why won't he explain why this so-called reanalysis is flawed and misleading? Maybe he's just sure it is, but can't work out exactly how.

"Another reason is that patient experience of CBT and GET outside the trial is reported as often being unhelpful or even harmful. This is an interesting and worrying observation probably explained by the treatment being given to people dissimilar to those in the trial or being given incorrectly."

Interesting that he seems to here be suggesting that any positive results from PACE aren't actually that helpful for providing information to patients about the likely impacts of the treatments they might be considering outside of RCTs. This is another problem with a lot of rehab approaches - they can be applied in wildly different ways by different therapists.

 

This is an interesting change of tack. Up till recently, the PACE authors have dismissed patient charity surveys on the grounds that they are inherently unreliable, because people who join these groups are socialised to believe they are ill. I think they realise that gives away too much about their attitude to patients and patient groups. So it's interesting to see them change tack, and go more for the "there must have been something different about those cases" line.

 

Am I the only person appalled by Michael Sharpe's lack of attention to detail when it comes to grammar? I've noticed on twitter that when he gets petulant his spelling and grammar go out of the window, but this in a letter to an MP:

I would frankly feel insulted to receive such a slovenly cobbled-together communication.

Ok, please do. Critics of the PACE trial have been waiting for you (singular or plural) to do precisely that for the last few years.

On the contrary, Michael Sharpe's problem is that it's very easy to see exactly what the authors did.

This is a complete misrepresentation of how the appeals process works. To try to imply that the tribunal decision was "one occasion" out of line with all the rest, when it was an appeal decision which examined and corrected the wrong decisions of a lower body, well, to try and get away with that when writing to an MP ...

 

Yes, true. I think @Esther12 is just pointing out the need to choose our words with care.

 

Not sure whether this will upload, but I did a video of that a while ago... I have done 6mWT vs PF in GET arm separately, but I can't work out how to convert it into an uploadable format...

But here's the gif...(GET is bottom right)

[update: I do have a better version of this gif, uploaded here]

 

We (S4ME) have a YouTube channel that I could upload a video to if it helps - PM me if that would be of any use.

 

The First-tier Tribunal upheld the Information Commissioner's decision, so it was QMUL's appeal (that was dismissed.) But the inference is that the Tribunal's decision was anomalous; given it was upholding the Decision Notice, it clearly wasn't.