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

Can we copy or screenshot our comments to here please?

A permanent record will be handy as comments on the site are being deleted.
It would also be helpful for people who can't log in to youtube to read them.
(I did have a third reason, but the 3rd item in any list I try to recall falls into a black hole never to be remembered again).

 

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

 

Comments visible at time of posting this

 

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.

 

Currently 9 'I like this' votes, 52 'I dislike this'.

 

Looks like my comments show when I’m logged in but don’t when I’m logged out. Weird.

 

Advice please - how do I get through the video without throwing things at my screen. I'm only two minutes in!

 

Leave the room?

 

@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.

 

They seem to have removed comments that raise concern about Crawley making false claims. Maybe they see any implication of dishonesty as 'abuse'?

 

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..

 

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.

 

God - she repeats the accusation about the threat to 'cut her balls off', she says she is cyber-stalked...what a lot of !*&%@. I could only stomach a few minutes.

 

Comments are now disabled and all previous comments are no longer visible

 

Does anyone know where the prevalence data of 1 in a 100 children comes from please?

 

Don’t you dare disrupt M.E.

 

'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?

 

From MEpedia - http://me-pedia.org/wiki/Esther_Crawley, I would guess it is from this.

1.8% is obviously closer to 2 in 100 but perhaps she thought that nobody would believe a rate that high...

 

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?