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

[Esther12]

There's also a broken link to it in the Paediatric CFS clinic's page: http://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/index.asp

 

[Esther12]

According to this playlist it is now a 'private video': https://www.youtube.com/playlist?list=PLz9sRi8Qg5wDPdB-eEOuvlUlWHtOsZtgl

 

[Hutan]

Bristol still has a page promoting it, but with a broken link: https://www.bristol.ac.uk/ccah/news/2017/esther-crawley-tedx.html

I expect we've commented on this before but, for goodness sake,

'Dare To Disrupt' the theme focuses on Bristol’s positive disruptors, whose ideas and actions are having a global impact. Professor Esther Crawley took the opportunity to speak at the event about how to disrupt our views of ME and the tough choices that many pioneers of medical research have to make.

She dedicates her waking hours to finding and delivering treatments for children whose lives have been devastated by Chronic Fatigue and ME

I thought she managed to fit some skiing with her children into her waking hours.

Those who are ill with CFS/ME do not have a voice - they are too unwell. We need to provide their voice

I thought, according to Esther, severe ME involves missing a couple of days of school each week. Presumably these children are speaking? How can they recover via LP if they can't yell 'Stop!'? And the children who are so unwell that they can't communicate don't have 'Chronic Fatigue' or 'ME', but instead have Pervasive Refusal Disorder?

Sorry, old ground, but the hubris of that piece just got under my skin.

 

[dave30th]

According to this playlist it is now a 'private video': https://www.youtube.com/playlist?list=PLz9sRi8Qg5wDPdB-eEOuvlUlWHtOsZtgl

I wonder why this would be?

 

[Sean]

Is that the same talk as this one?

 

[Amw66]

Is this in any way linked to the current investigation?

Is this simply revisionist ? A new central sensitisation approach is being launched that may require some tweaking?

Or, could things actually be changing......

 

[dave30th]

Is this in any way linked to the current investigation?

I wondered this. It seems unlikely because the link between her talk and the studies under investigation would seem tenuous.

 

[chrisb]

I am amazed that it was allowed to remain up for so long. I never understood how someone who might wish to be called upon to act as an expert witness could be seen to be publicly making such demonstrably incorrect assertions about the Sunday Times image.

 

[ladycatlover]

I'm hoping that somebody has kept a copy. Be nice to put it up again?

 

[Alvin]

I wonder why this would be?

I'm hoping that somebody has kept a copy. Be nice to put it up again?

I think we need to set up some resources to create backup copes of materials
The internet archive only does a percentage of mainstream websites and does not do vids at all

 

[Sly Saint]

Is that the same talk as this one?

no thats Esther Crawley Evenbrite Better Science throBetter Data Oct 2017
the one being talked about is Disrupting Your View of ME Esther Crawley TEDxBristol
I have a copy.

 

[Andy]

https://www.s4me.info/threads/useful-resources.397/

eta: S4ME have a Youtube channel

We do. Reposting someone else's material without their permission would probably not be a sensible use of it.

 

[Esther12]

Is this in any way linked to the current investigation?

Is this simply revisionist ? A new central sensitisation approach is being launched that may require some tweaking?

Or, could things actually be changing......

I assumed it was TEDx taking action because their are so many problems with Crawley's talk, and it clearly breaches their guidelines.

Some other TEDx talk have been made 'unlisted' and have had a note explaining problems with them added, eg:

NOTE FROM TED: We've flagged this talk, which was filmed at an independent TEDx event, because it appears to fall outside TEDx's curatorial guidelines. This talk is best viewed as a speculative what-if scenario, and with awareness that the 2017 surgeries performed by Dr. Canavero on human cadavers have raised practical and ethical concerns in the scientific community. The talk contains statements about nerve regeneration that are questioned by many neuroscientists. The guidelines we give our TEDx organizers are described in more detail here: http://storage.ted.com/tedx/manuals/t...

I wonder if TEDx wanted to do that with Crawley's but she/Bristol refused to allow any note and so it was made private instead? Maybe TEDx were concerned about the way Bristol uni were continuing to promote the video to children even after clear problems had been identified?

There are so many things that could have worried them that it's hard to know what was going on.

 

[AR68]

I'm hoping that somebody has kept a copy. Be nice to put it up again?

I downloaded it last year.

 

[ladycatlover]

I downloaded it last year.

I took a look at my hard drive, and it appears I have an unofficial recording on it. Sound goes a bit squiffy for a couple of minutes in the middle, but with a bit of effort you can make out what she's saying. Sound and vision a bit off kilter too.

I don't know who recorded it, so presumably we couldn't put it up here as don't even know the copyright owner. Ah well.

Trying to send it to myself to ensure when laptop dies I still have it... Gmail tells me that since "Your file is larger than 25 MB. It will be sent as a Google Drive link."