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Esther Crawley TEDxBristol Disrupting Your View Of ME

wdb

wdb

Senior Member
Messages
1,392
Location
London
TEDx has totally ruined the TED brand, Jen Brea did a genuine TED talk, any old fool can organise a TEDx event and pay a fee to license the name.

TEDx is a program which is run under the TED brand to bring a TED-like experience to as many people as possible. TED events are organised by the TED organisation themselves while TEDx events can be organised by anyone for their community after gaining a license from TED, hence "independently organised". TED provides a support system and very specific guidelines which need to be followed by the organisers.

There're just a couple of TED events which take place every year while over 10,000 TEDx events have taken place in all sorts of places since the program started in 2009. TEDx also has a global community of volunteer organisers and ambassadors who meet occasionally at special organiser events, the most recent of which was at TEDSalon Berlin.
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Diwi9

Diwi9

Administrator
Messages
1,780
Location
USA
lnester7 said:
ok this is not a joke, I am serious, This person is not stable or in touch with reality. I think EC needs to be committed or in the least evaluated. This behavior, so much unreality is not normal, or narcissism or fraud or crazy. But ignorant cannot be an excuse anymore.
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The real problem with EC is that she continues to receive funding for her research. Funding is a strong source of status in the research community. I'm disgusted that TEDx is picking this up. I hope the post is open for comments and we should comment. Unfortunately, that will only make her post more "popular"...
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Molly98 said:
It does say on their Web page are you interested in becoming a speaker I wonder if there is anyone with good public speaking skills who could do a talk from the patients perspective and counter Crawley's story?

@Jenny TipsforME your in the Bristol area, have you got any ideas on this?
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It would be nice if David Tuller did a TED talk.
 
Molly98

Molly98

Senior Member
Messages
576
Just a quick thought, maybe we could buy up as many of the tickets as possible, fill our seats with empty shoes and information on Crawley and ME to counter her narrative, so that she hardly has any audience to preach too, just rows of empty shoes on empty seats
 
wdb

wdb

Senior Member
Messages
1,392
Location
London
I noticed there is a second talk on CFS at TEDxBristol
ALAN BEC

Alan Bec is a man of many hats! He has studied, lived and breathed being an information designer, educator in psychology, international coach and interviewer of interesting people. He's a Fellowship Councillor for the Royal Society for the encouragement of Arts, Commerce and Manufacturing in the South West, a member of the International Time Perspective Network, member of the Spiritualist National Union and a husband, father and grandfather. Oh and an inventor!

His passion for life and people has propelled him around the world, working across many different markets and sectors including automotive; pharmaceuticals; food & drink; design and brand insight agencies; outdoor event management; the Institute of Directors and NGO’s in education, organisations, the environment and society.

He finds being human very interesting, he likes to think that there is much more to life than being a 'defecting piece of meat living a pointless existence'! It is for this reason he has always been disruptive. He says, "I cant help seeking to find compassion, meaning and purpose in what ever it is I am doing."

But his spirited and fun loving journey was disrupted abruptly when he contracted Chronic Fatigue Syndrome in 2011. The effect and devastation this had on his self-identity, family and social status changed everything. Whilst learning to come to terms with the reality of this very debilitating and fluctuating disease, he found himself learning something new: what it’s like to experience 'Social Death'.

Isolated, house bound, bed ridden, struggling to walk and think straight or do just the very basic ‘taken for grated’ tasks in life - he felt like he was on his own. No amount of positivity could shake this off.

But, one night he had a remarkable dream, involving numbers as a way of communicating his ill-being. This dramatic and clear dream clarified that human beings, as clever as we are, are fundamentally symbolic interactionists. Just by displaying numbers we can change the way we all communicate with each other.

The next morning, the Wellbeing Indicator Badge ® - the WIB ® was born.

In his TEDxBristol talk he‘ll be sharing what it’s been like to live with fluctuating chronic ill health, how he found a disruptive healing solution by talking in numbers, and why you don't have to be ill to improve communication using this method.

He says, "Communicating in numbers is simple yet profound. Numbers hold the power to transform self and others through shared understanding, interaction and compassion. We can all bring our numbers to life, and enhance wellbeing at home, work and in our community. What do I mean by displaying a 3? and what does 7 mean? but more importantly, what number are you?"

disrupting our shared consensus reality comes naturally to me if it improves human interaction and the society. Too much of our energy is focused on “words” and “talking” in order to be heard and understood. Numbers can be much clearer!
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K

Keith Geraghty

Senior Member
Messages
491
Prof Crawley told the audience yesterday
1. little about what causes ME/CFS
2. little about what happens to the physiology of sufferers
3. little about how it impacts lives
4. little about the range of research currently underway

it was a plea to emotion - based on a narrative that she was the victim, not the millions of sufferers who's lives have been devastated. She didnt take criticism head on and try contemplate where it was coming from, instead she displayed extreme hubris - with a story that pitted patients and activitist against her, in an effort to court sympathy from the room for her, not sufferers.

She failed to give accuarte statstics - there was a charry picking of 10% only get better at 6 months without treatment, whereas 66% get better with treatment - any rationale scientist would just dismiss such claims as nonsense, but the room was charmed to side with the victim of abuse, who is a woman cyber bullied by crazed militants (thats the narrative Crawley put out) - she will need to take ownership and responsibility of this action

She looked incredibly uncomfortable and I suspect it was because the organisers informed her there was no way to stop livestream on facebook and twitter, as the whole conference was about open data and access - how ironic.

I think her discomfort led her to say things she may later regret, ie things she believes but said under stress that gives up an insight into what she thinks of patients and petitions and complaints.
 
Molly98

Molly98

Senior Member
Messages
576
Keith Geraghty said:
Prof Crawley told the audience yesterday
1. little about what causes ME/CFS
2. little about what happens to the physiology of sufferers
3. little about how it impacts lives
4. little about the range of research currently underway

it was a plea to emotion - based on a narrative that she was the victim, not the millions of sufferers who's lives have been devastated. She didnt take criticism head on and try contemplate where it was coming from, instead she displayed extreme hubris - with a story that pitted patients and activitist against her, in an effort to court sympathy from the room for her, not sufferers.

She failed to give accuarte statstics - there was a charry picking of 10% only get better at 6 months without treatment, whereas 66% get better with treatment - any rationale scientist would just dismiss such claims as nonsense, but the room was charmed to side with the victim of abuse, who is a woman cyber bullied by crazed militants (thats the narrative Crawley put out) - she will need to take ownership and responsibility of this action

She looked incredibly uncomfortable and I suspect it was because the organisers informed her there was no way to stop livestream on facebook and twitter, as the whole conference was about open data and access - how ironic.

I think her discomfort led her to say things she may later regret, ie things she believes but said under stress that gives up an insight into what she thinks of patients and petitions and complaints.
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I think your spot on with all of this @Keith Geraghty
 
Deepwater

Deepwater

Senior Member
Messages
208
What she actually did was to catch the criticisms she has received and bat them back at her critics, even criticisms that are laughably inappropriate, something the few narcissists I have known always do in an argument. Therefore:-
1) it is the people who are against her who would bully her child patients;
2) she is trying to do science to help patients, and finding obstacles put in her way;
3) her work is opposed by people with an irrational, pseudo-religious set of beliefs hostile to the real science;
4) her enemies have a bad attitude towards people with ME.
Even ME advocates' crowdfunding of scientific research is turned on its head and proclaimed as crowdfunding to stop science.

It is indeed an insight into the way her mind works. Facts, truth, and the true value of one's work - they don't count. It is all about plausibility in the pursuit of status. If a particular just criticism of her work is proving persuasive to others, rather than doing some soul searching she'll simply think to herself 'Oh, that's a good one', and borrow it.

The one moment she really sounded genuine was when she looked down - and sideways - and muttered under her breath 'But what do I know?' The obvious answer is 'Not much at all', but obviously the question was rhetorical - someone of her status ought not to be challenged. Her resentment at the criticism, as we already knew, is all about her, her power and her image; it is not about 'the children'.
 
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