Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

Can't bring myself to press play either.

 

Those who cannot bear to watch the whole thing have a duty to at least watch from about 5.50, for not very long.

 

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Might be an idea to send TedXBristol a copy of the ME Action PACE petition and the OMEGA petition as evidence that her narrative of a small vocal minority objecting to her and her beliefs is untrue

 

Wow! And the Oscar goes to..... EC for Jekyll and Hyde.

 

Forced myself to watch it and, ugh, it was hard to sit through. The oh-so-concerned face, the breathy little voice. Lying again about the Sunday Times mock-up being an email she herself received, and again joking how silly it was that the sender threatened to cut her b***s off. A martyr to 'harassment' who selflessly soldiers on with her research because the children need her. We need a Vomit emoticon! Yuck will have to do for now.

 

I've just listened to her talk and here are my thoughts:

She did a good job in the first half of her talk where she explained the general "landscape" of ME/CFS and what is needed for ME/CFS research to improve. However, I know she's focused on children with ME/CFS but she did make it sound a bit like this was mainly a problem for children. I also didn't like her use of percentages regarding children who improve from her various treatments. This implies they're being cured when in reality we still simply don't know enough about what the hell is going on in our bodies to measure that (in my opinion).

The it went downhill in the second half when she used "Sarah" and the fake image portraying "Sarah" as a segue into this narrative about attacks and how she was worried "Sarah" would also be attacked.

• Firstly, it's important to point out here that even Esther Crawley said we need more trials with bigger sample sizes to work from. Also, yes, we do need to explore every avenue of investigation that we can to get to the bottom of ME/CFS. HOWEVER......

• I don't know if EC realises that patients and organisations are primarily annoyed at her because she has been associated with trials/studies that are shaky and have had really poor execution (Supporting GET/CBT, SMILE etc.). Studies with SMALL SAMPLE SIZES. Not only this but government organisations and the media have been allowed to promote and implement the findings in these trials to the detriment of many patients well-being. If EC truly believes in thorough and fair and robust trials as she claims, why would she allow, on ethical grounds, her research to be used and promoted so prematurely? If these really are her values, why is she not speaking out? To add fuel to the fire: there is an air of secrecy and defensiveness surrounding these trials. It's like they didn't want people to see the results and are adverse to criticism. How is that good science?

• She conveniently kept the "trial" she was using an example (the SMILE trial I'm assuming) vague. I think she really downplayed just how ill-received the trial was, and of course didn't provide any fair reasons as to why this was the case vs. her finding and the methods used in the trial.

• She conveniently didn't define these "attackers" very well. She didn't let the audience know that these alleged attacks come from ME/CFS patients themselves. Patients who have a reputation for being scientifically critical (Despite their illness) and are obsessed with robust and good science; especially after all the scandals of the past. She's painting everyone with a very broad brush. Criticism doesn't equate to an attack. If you're doing bad or questionable science, then you are. Improve it or offer us more information.

• She's pinning lack of researchers and funding on these mysterious, hooded attackers. How is she quantifying/measuring this? Where is the study into this? If you want someone to blame EC, blame the government organisations and bad journalism for implementing and promoting pesudosciency advice. No wonder we don't get any funding: on the face of it we looks ridiculous and no thanks to you at this point.

We DO need better trials and bigger sample sciences. We DO need more funding. But EC seems to be very bias toward her research. As far as I can see: she's saying one thing in this talk but then doing another.

I understand she doesn't want her child patients to wait 10-15 years for a cure. But firing a shotgun and hoping you hit in the form of rushed trials and getting them out there in the hopes it sort of helps some people isn't the answer either.

EDIT: not to mention the fake threat letter she recieved up on the screen? I don't think it actually was hers like she was claiming?

EDIT 2: showing a lot of humility comparing herself to a romanticised image of a war hero and as someone who saves babies too. lol.

 

@markiemark could you make a space between the paragraphs please, it's too much text for many of us to cope with without spaces

 

@Jan done! sorry, I didn't think of that.

 

Can anyone bear to transcribe that bit? I'm hugely surprised that she would actually claim that Sunday Times mock-up for herself, if it wasn't addressed to her, and seems so clearly to have been addressed to a man. I'm wondering if she used ambiguous phrasing or something.

 

I don't see how to watch the video on the TEDx site. It seems like the presentation after Crawley's is available, but I can't see hers. Any tips?

 

I tried going back to get the exact wording, but her talk seems to have been removed from the video and been replaced by a series of random slides with quotes from various famous people. ???

ETA: Oh, I see Cheshire above me has been able to get the wording, thank you! Don't know what happened to Esther's talk, though!

 

Given that she must be aware of the furore which has arisen over her previous use of this imagine, the further use, without adequate explanation, must be viewed as deliberate provocation. It clearly plays to her own self-image.

On another site I once posted a copy of a letter to a Journal from a Psychiatrist, who actually practised within what might be considered his own field. He pointed to research that one in twenty patients at an out patients clinic was carrying a weapon.

 

Didn't watch the whole thing either, but I did see that bit and noted she was *very* careful not to say she had actually received the mock-up, but used clever words to lead the audience to absolutely believe it was. Very insidious and I should think for a psychiatrist out-of-bounds tactics for public speaking. It's still a lie, and a cruel trick, to use verbal sleight-of-hand.

This is gaslighting at its finest (and most juvenile), and cause to wonder: if the UK has such strict libel laws, should not lies of omission and implication such as this against a group also be labelled hate speech, especially by a person of "authority"? (<-- those are are sarcastic air quotes btw)

Not to mention this is all in the context of having craftily co-opted the much-needed reframing of ME and its attendant misperceptions.
This reeks of major branding and PR spin from SMC et al.

I just had a little fantasy about the day this all comes out and she tries to say, "Ah, well, I never said *I* received it", feeling perfectly justified, and the entire audience recognise they've been bamboozled. It's the perfect metaphor for the entire PACE debacle.

What a bunch of self-focused circus clowns. In lab coats.

 

Thanks, Cheshire. How do we know it's not true?