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Esther Crawley TEDxBristol Disrupting Your View Of ME

Jo Best

Jo Best

Senior Member
Messages
1,032
With apologies as posting in haste so haven't read the whole thread, had just spotted this blog on Twitter and thought it includes a nice validation of the worth of using these opportunities on social media to educate the unwary.
https://openworking.wordpress.com/2017/10/29/better-science-through-better-data/
Finally, the use of Twitter was excellent – dedicated hashtag for #scidata17 allowed the exchange of comments and spurred interesting discussions. For example, conversations on Twitter revealed that there were controversies around Esther Crawley’s research and, as Ross Mounce pointed out, it was good to learn about the other side of the story.
https://openworking.wordpress.com/2017/10/29/better-science-through-better-data/
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Demepivo

Demepivo

Dolores Abernathy
Messages
411
FWIW I've got some Tweets written & saved via Buffer to go live just before EC's talk
>using hashtags #TEDxBristol & #DaretoDisrupt which the organisers are suggesting.

TED tweets.JPG
 
H

Hajnalka

Senior Member
Messages
910
Location
Germany
Does anybody know when EC's disruptive talk will be online? I remember it took around six months for Jen's TED Talk to be available.

I know we agreed best not to click on it and put a video up here instead, just wanted to know how long it might take. :)
 
Jo Best

Jo Best

Senior Member
Messages
1,032
Clair&Mike said:
I wonder if there's a slick PR company that's been engaged to help her get more of a platform?
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It wouldn't surprise me if she's using a PR company, but she has the backing of the UK Science Media Centre, which proudly reported its success in orchestrating the anti-patients/advocates media campaign of 2011. I believe the campaign was intended to silence criticisms of the PACE trial and EC's SMILE trial.
http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf
 
Jo Best

Jo Best

Senior Member
Messages
1,032
Clair&Mike said:
Either way, whoever it is, I just hope a well versed medical practitioner can put across the counter arguments to Esther's 'pitch' about her treatments so people watching the TEDx are not taken in by her pitch!
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Not a TED talk but this is retired UK paediatrician and internationally renowned expert in ME, Dr. Nigel Speight, speaking at a conference in Brussels this year about his experience with children with ME / CFS and how they and their parents are treated.

 
Jo Best

Jo Best

Senior Member
Messages
1,032
Worth noting that Nigel Speight is viewed by the current establishment as the 'disruptor' on the subject of children and young people with ME. The GMC placed restrictions on his licence to practice last year, subsequently lifted: http://forums.phoenixrising.me/inde...r-nigel-speight-gmc-drops-restrictions.47333/

Also relevant to the subject of the TEDxBristol talk, in their statement about the GMC action against Nigel Speight, ( http://www.investinme.org/IIME-Newslet-1604-NS999.shtml ), IiME Research referenced two accounts, one written by the parent of a young son with ME ( http://ldifme.org/a-day-with-a-son-with-m-e/ ) one by the parent of a young woman with ME ( http://www.investinme.org/mestory1010.shtml )
 
A

Alvin2

The good news is patients don't die the bad news..
Messages
3,023
Common in children, i doubt it, sounds like she wants to increase the market so she can "help" more children and obfuscate the real disease. Gotta protect herself from reality somehow, there are too many people doing research on the actual disease mechanism and looking for medications to cure it. This must be stopped before it gets out of hand, it can only be psychosomatic and thats that
 
Jo Best

Jo Best

Senior Member
Messages
1,032
A

Alvin2

The good news is patients don't die the bad news..
Messages
3,023
Can't put cat back in bag so must prevent it getting out... [facepalm]
 
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