Better Science through Better Data 25th October 2017 - Esther Crawley!

She showed a message she had received, presumably by post that was a cut and paste job one letter at a time, old fashioned poison pen letter style. I could't read the words on my screen, so I don't know what it said. Apart from that it was all hints and innuendos. One (planted?) questioner made the parallel with animal rights activists firebombing private home of researchers. She left that hanging, didn't admit she'd never had anything like that, but the idea was there...

She also talked about petitions trying to stop her research and showed a screenshot of one. She characterised it as anti science and rubbished the idea that they were accusing her of pushing patients to exercise, claiming 'we actually tell them to cut back exercise'. That's the same line Phil Hammond used in the Jen Brea interview. They carefully omit to mention that once they have cut back they are told to build up again. Such lies...

I've had a go at responding on twitter.

 

If individuals could be identified then it would be PII and the FoI act wouldn't apply. In the PACE case they tried to argue that people could be identified but the tribunal didn't accept their argument.

They are already identified as having ME - its obvious. These days fitbits are popular (ok don't know with kids). But the answer is if you can't make the right measurements don't to the trial. There is no point of doing bad measurements as at best they have no information content but at worse measurements will mislead.

I think those worried about privacy should read it especially the trashing of Ross Anderson by the tribunal.

 

Having encountered Crawley as a doctor I wouldn't be surprised if she had threats. Its hard not to get very emotional when you feel your child is being badly treated and the authorities won't do anything.

 

Yes, he did seem willing to listen to the other side, so I added a couple of tweets to the conversation, as did many others.

 

As I remember it, she neither inferred nor implied that she had received this letter. She stated it directly as fact that she had. She even joked a couple of times to the fact that it refers to her 'balls' and that she doesn't have any of the sort they meant.

So I'd say, if the tweeted copy from the Sunday Times magazine is real, then she is either lying, or she received a copy cut from the magazine and is suggesting it was composed specifically for her.

 

I've just googled Sunday Times May 5th 2013

There is a long article about Simon Wessely and the 'abuse' he purportedly suffered. It includes a section about Crawley in which she describes a year of emails and phone calls and contacting the police, related to the setting up of the Smile trial.

Michael Hanlon
May 5 2013, The Sunday Times

https://www.thetimes.co.uk/article/...sted-that-me-was-a-mental-illness-t250dr25xg5

The online article includes this image:

 

Her whole lecture was almost content free. It was a mix of

I'm a wonderful doctor who listens to patients who all love my treatments and I do the research they beg me to do. With a bit about doing the Smile trial and how she'd done it because patients wanted it.
And
I'm the victim of appalling attacks and harassment by antiscience activists who want to stop research into ME and are driving researchers away from the field and I'm a hero for sticking with it for the sake of my patients (who by the way love me, did I tell you that). All innuendo and suggestion, no evidence apart from that newspaper clipping.

She portrayed herself as someone desperate to share data but held back by her ethical stance of not leaving patients and their families vulnerable to identification. She pretended to be there looking for answers rather than providing them, because she is sooooo supportive of open science.

Made me feel sick.