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

Thanks for letting us know. Downloaded a copy now.

Has anyone got a reply from TEDx Bristol about Crawley misrepresenting that slide? Not a good look if they're more concerned about protecting their copy-right than the accuracy of the claims made in their talks?

Although... TEDx was in the title, so maybe it was automatically flagged by the TED organisation?
 
Bristol Uni PR on the TEDx talk.

Professor Esther Crawley presents at TEDxBristol - Dare To Disrupt
13 November 2017

'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.

Esther is a Professor of Child Health with a Senior Research Fellowship from the National Institute of Health Research.

She dedicates her waking hours to finding and delivering treatments for children whose lives have been devastated by Chronic Fatigue and ME, an illness that affects 1-2% of teenagers – that’s 10-20 children in a normal secondary school.

A personal story of positive disruption - I dare to disrupt because ... We need to disrupt views of this illness. Those who are ill with CFS/ME do not have a voice - they are too unwell. We need to provide their voice and we need to speak up about this illness. Because we, as a community, as a society, as friends, as neighbours and as parents should look after children who suffer.

Crawley_Esther_Nov17-300x300.jpg


Esther presented her story at the TEDX conference in the Colston Hall on November 2nd, 2017.


The University of Bristol operate zero tolerance to sexual violence and harassment. University of Bristol statements about CFS/ME research.
Click to expand...

http://www.bristol.ac.uk/ccah/news/2017/esther-crawley-tedx.html
 
Last edited:
Those who are ill with CFS/ME do not have a voice - they are too unwell. We need to provide their voice
Click to expand...
Those who are ill with CFS/ME most certainly do have a voice. They have been trying to make it heard for decades. Esther and Simon have been doing everything they can to make sure it is not heard, and that the voice they provide is heard instead. All they have to do is shut up and get out of the way so that ME sufferers' voices can be heard loud and clear. The SMC's role in ME is to make sure the sufferers' voices aren't heard ffs.
Those who are ill with CFS/ME do not have a voice - they are too unwell.
Click to expand...
EC doesn't even see severe sufferers, she studies children whose parents have said in a telephone questionnaire that they are tired. What the f. does she know about ME sufferers who are too ill to speak, she behaves as if they don't exist, and now she claims to talk on their behalf?
 
TiredSam said:
Those who are ill with CFS/ME most certainly do have a voice. They have been trying to make it heard for decades. Esther and Simon have been doing everything they can to make sure it is not heard, and that the voice they provide is heard instead. All they have to do is shut up and get out of the way so that ME sufferers' voices can be heard loud and clear. The SMC's role in ME is to make sure the sufferers' voices aren't heard ffs.

EC doesn't even see severe sufferers, she studies children whose parents have said in a telephone questionnaire that they are tired. What the f. does she know about ME sufferers who are too ill to speak, she behaves as if they don't exist, and now she claims to talk on their behalf?
Click to expand...

See, you ME patients are so confused and angry for no reason, here we are doing what you asked--giving you a voice--and you're complaining?
You lot are never satisfied! Here we are hijacking your legit narrative to make it look like we're helping you right where it counts and
all you can do is harass and threaten! Bunch of ingrates! Look what WE have to put up with! And still we carry on, because we care. We really really care. I deserve a medal for this selfless service. Oh look! I got one!
 
TiredSam said:
Those who are ill with CFS/ME do not have a voice - they are too unwell. We need to provide their voice
Click to expand...

Those who are ill with CFS/ME most certainly do have a voice
Click to expand...

I don't think people with ME have a very loud voice in that is it hard to be heard in the media. Although there have been a limited number of good stories over the last few years,

If, however, as Crawley asserts that people with ME don't have a voice the answer is not to speak for them without listening to them. But rather to enable people to be heard. The idea of a doctor speaking for patients smells of the old paternalistic attitude of the medical profession where they think they know best and ignore patients.
 
Those who are ill with CFS/ME do not have a voice - they are too unwell. We need to provide their voice
Click to expand...

One minute we talk too much and "harrass" them the next minute we dont have a voice and need them to speak for us, I wish they would make up their mind.

We are certainly ill but put most of us on a stage to debate her and we'll show you what our voice can do.

One final thing, if we don't have a voice why not just answer our FOIs in writing and legitimate written questions.
 
For a some time now I've been following the blog of Wendy, a lovely lady who has early onset dementia. She is very involved with dementia research. Patients are treated with respect, and researchers involve them. I was particularly taken with one of Wendy's recent blog posts.
https://whichmeamitoday.wordpress.com/2017/11/22/british-psychological-society-event/

Why can't we be treated with respect and involved as dementia patients are?
 
Oh and an afterthought--I don't see Tuller's questions as particularly challenging.
I think we ought to be referring to them as straightforward, which is what they are/were.

He was as part of the public invited to "Dare to Disrupt" the narrative of ME, and he did exactly that, in a straightforward manner.

This is such a ripe opportunity to bring to the greater public's notice that the narrative cannot and must not be coopted by people who operate at this level of bias.
 
Allele said:
Oh and an afterthought--I don't see Tuller's questions as particularly challenging.
I think we ought to be referring to them as straightforward, which is what they are/were.
Click to expand...

Actually, I didn't mean challenging in the sense that he asked a tough question, I meant that he asked a questioned which literally challenged her (dared her) to explain her claim of libel.
 
Forbin said:
Actually, I didn't mean challenging in the sense that he asked a tough question, I meant that he asked a questioned which literally challenged her (dared her) to explain her claim of libel.
Click to expand...
Oh, yes, Forbin, I wasn't addressing this to you, I was saying it generally. I knew what you meant, and I think he's right to challenge her; I've just seen this "challenging question" phrase repeated on the interwebs and it struck me that it could have an unwanted nuance down the line. Even though it's 100% legit.
 
You must log in or register to reply here.
Back
Top Bottom