Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

My tuppenceworth


Ann West1 second ago
Tellingly, biomedical researchers into this condition have stated that they are not subject to harassment, and find patient support a key part of their work. There is something amiss with engagement of patient community, and the dissemination of a form of treatment that has no significant effect (from many independent analyses), and has caused harm to some from this kind of research. I would urge those interested to actually read some of the research and compare the methodology to pharmaceutical / biochemical research and draw their own conclusions :there is much amiss
 
I am unable to comment on Youtube, but I do wish someone would ask rhetorically whether Crawley's use of the Sunday Times image is to be taken as evidence that she has suggested "that ME, the chronic fatigue illness, is all in the mind".

The purport of the article according to the newspaper was to reveal alleged death threats against doctors who had made such a claim. It appears fundamentally dishonest to include on the slide which she uses the statement "Scientists under siege" and to edit out the words directly underneath. It cannot be claimed that lack of space was a limiting factor.

Of course, if she has never made such a claim, what reason is there for believing anything else in the article?

EDIT It might be argued that the headlines are the work of a sub-editor and nothing to do with the journalist or contributors. But by that token the whole of the lurid page, including the threats image, is created at the discretion of the sub-editor. It has to be all or nothing.
 
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@Carly Maryhew - it's TEDx Talks, not TEDxBristol, who've put the the video up on YouTube. They may not be aware of the issues. I wondered if you wanted to send your letter to them, too - and to TED as the umbrella organisation.

Someone in that organisation needs to be taking responsibility for the content that goes out under their name. I wonder if Jen Brea now has contacts at TED who could be influenced to take these objections seriously.
 
Graham said:
Advice please - how do I get through the video without throwing things at my screen. I'm only two minutes in!
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My other half got two minutes in as well, and then said ‘I don’t need to watch any more. That woman is mad.’
He reckoned that she comes across as delusional even if you know nothing about the subject matter.

Anyone who feels the need to start off at a talk like that with her grandfather in the trenches and then go on to he childhood is seriously psychologically unstable/damaged. If she ever realizes that she isn’t a saint, her head will implode..
 
Daisybell said:
My other half got two minutes in as well, and then said ‘I don’t need to watch any more. That woman is mad.’
He reckoned that she comes across as delusional even if you know nothing about the subject matter.
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That's pretty much what my husband said when I showed him the video - he said she came across as weird/disturbed and that she appeared delusional.

I've just noticed that YouTube have now removed all the comments and disabled any further comments. Great echo chamber.
 
'interestingly its much more heritable in children'
'children seem to be more genetically vulnerable, which explains why they get it on their first second or third infection compared to adults'

What does this mean? I'm afraid i cant make any sense of this section. Also has anyone got any idea where she is getting these ideas/facts from? which specific research?
 
Justy said:
Does anyone know where the prevalence data of 1 in a 100 children comes from please?
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From MEpedia - http://me-pedia.org/wiki/Esther_Crawley, I would guess it is from this.
Prevalence at Age 16

In a study[17] published in 2016 using data from almost 6000 children in the Children of the 90s Project[18], Crawley and her team concluded that the prevalence of CFS at age 16 was 1.8%. However, the children were included as having CFS on the basis of questionnaires, no doctors were involved in the diagnosis, and there was no attempt to exclude other fatigue-related conditions except depression. If children reporting depressive thoughts were excluded, the prevalence was reduced to 0.6%, but the 1.8% figure was highlighted in the media. BBC Radio 4 coverage[19] described the condition studied as ‘ME also known as chronic fatigue syndrome’. Dr Charles Shepherd of the ME Association wrote to express concerns about the methodology used but the journal did not publish his letter[20]
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1.8% is obviously closer to 2 in 100 but perhaps she thought that nobody would believe a rate that high... ;)
 
Justy said:
'interestingly its much more heritable in children'
'children seem to be more genetically vulnerable, which explains why they get it on their first second or third infection compared to adults'

What does this mean? I'm afraid i cant make any sense of this section. Also has anyone got any idea where she is getting these ideas/facts from? which specific research?
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As far as I can tell they don't make sense. How she can say children are more prone to inherit it than adults is beyond me, unless she studied some adults who weren't ever children.....

And then the second quote, I guess that she also found some adults, this time who had been children, but who hadn't ever had a infection until they were adults?
 
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