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

[Justy]

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?

Exactly - who did the children inherit it from? other children? It is non sense.
Compared to what in adults?
First second or third infection? from when? birth? isnt that quite a wide variation anyway?
Does she have published stats to back these comments up or is it anecdotal?

Im asking these questions in the spirit of constructive, rather than personal criticism of Dr Crawley.

 

[ladycatlover]

First second or third infection? from when? birth? isnt that quite a wide variation anyway?

My experience as a mother of 2 girls is that they had oodles of snotty infections as soon as they started mixing with other kids at nursery and then school. I suspect most (if not all!) other mothers have similar experience. My girls now do with their kids. If she's talking of more serious infections (measles, mumps, chicken pox or similar) she's being very vague. Not a good look for a TED talk I would have thought?

 

[Valentijn]

Not a good look for a TED talk I would have thought?

I'm starting to get the impression that TEDx talks are the waste bin for attention-seekers impressed by their own babble. It looks like hosting pseudoscience or outright woo is a fairly routine occurrence for TEDx, as well as censoring criticisms of dodgy content.

 

[large donner]

I'm starting to get the impression that TEDx talks are the waste bin for attention-seekers impressed by their own babble. It looks like hosting pseudoscience or outright woo is a fairly routine occurrence for TEDx, as well as censoring criticisms of dodgy content.

If you ever listen to Ted talks on youtube and you have it set to autoplay its not long before you get one "modern women" usually American, after another coming on to tell us all how they are masturbation coaches, usually for their friends etc before they decided to turn their skill into a business. They usually go on to tell the audience how enlightened they are themselves about such issues and how repressed everyone else is.

No doubt because other people don't care to hear their nonsense they interpret this as a sign of repression.

Despite their stage presentations I always picture such people going home and crying into endless glasses of wine at night when they drop the facade of their amazing lives and face up to their own realities when they have no audience.

That's what I think of when I think of Ted talks and why I have never taken them seriously.

 

[Graham]

Well there is a movie where Ted talks.

 

[Allele]

Actual voices of people with ME are silenced because they criticize a woman that claims to be the voice of people with ME in a talk called "Disrupting Your View Of ME".

Your post made me want to respond with ECs head photoshopped onto the poster for Inception

 

[Louie41]

Remember, with a Google account (Gmail, YouTube etc), you can comment on and down-vote the video (or up-vote if you must).

I would love to down-vote this talk if someone will be kind enough to tell me how to do it. I looked and couldn't see any link that would work. Real dunce here on social media and youtube!

 

[Louie41]

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

I recommend pausing playback periodically and hollering at the screen for as long as necessary, preferably with plenty of Saxon for good measure!

 

[Andy]

I would love to down-vote this talk if someone will be kind enough to tell me how to do it. I looked and couldn't see any link that would work. Real dunce here on social media and youtube!

Copy and then paste this link to use it to get to the video on YouTube

https://youtu.be/z0ORJdyR6_E

And then look for the thumb down.

 

[Adam pwme]

I left a comment on the Tedx Facebook page

 

[Louie41]

Thank you, @Andy! And @Adam pwme ! Sometimes my idiocy astounds me, though I've been using computers since mid-1980s and younger family members consider me something of a geek.

 

[Amw66]

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

I think it has its basis in the school study. As usual it conflates chronic fatigue with CFS/ME.
Colby and Dowsett did a study re school illness in 1990s which may be more accurate.
Higher numbers will justify the need for more research

 

[Luther Blissett]

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).

I screenshotted the first comment on the post Yesterday, must have already been deleted when the others in this thread were captured.

 

[Luther Blissett]

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

Click the cog icon, and change the speed to '2'. It makes the talk just as informative, but lasts half the time.

Alternative is to eat a spoon of pudding everytime she says 'We' but means 'I'. I know you like pudding, and this generates a lot of pudding eating.

 

[Allele]

Oh and double spoonfuls for each time she refers to herself as a "grownup".

 

[Justy]

Oh and double spoonfuls for each time she refers to herself as a "grownup".

I noticed that - weird.

 

[Alvin]

I noticed that - weird.

I noticed as well but i didn't pay attention to it
If we were taking shots instead of eating pudding we would probably all die from alcohol poisoning, a cure of sorts i suppose

 

[Andy]

Coyne appears to like the letter.

Carly Maryhew’s recent open letter to TEDxBristol concerning the failure of Esther Crawley’s recent talk to adhere to TEDx’s explicit content guidelines is a gem, well worth a read by a general audience.

https://jcoynester.wordpress.com/20...leys-disrupting-your-view-of-me-presentation/

 

[Indigophoton]

I'm not at all in favour of EC's flawed research, nor her approach to patients, but in the interests of fairness and balance, especially for anyone who doesn't watch the video, EC does also make some valid points in the talk, eg,

- More research is needed
- More funding for research is needed
- If patients are trying something and saying it helps, research is needed to see whether that is true or not
- Children with ME/CFS don't have a choice about it (not sure how she squares that with finding the LP effective)

However, one swallow does not a summer make.

(Kinda glad that there isn't a dislike button as I think I might acquire a few here )

 

[Andy]

What she actually means though

More research is needed

"I need to do more research into chronic fatigue but call it chronic fatigue syndrome."

More funding for research is needed

"More funding of MY research is needed."

If patients are trying something and saying it helps, research is needed to see whether that is true or not

"But lets ignore this idea when patients say the GET & CBT doesn't help and that pacing does help. Only I know what my patients need."

Children with ME/CFS don't have a choice about it (not sure how she squares that with finding the LP effective)

To be fair I don't understand the context here so I'm not going to use my crystal ball to reveal Esther's thoughts on this bit.

In seriousness, those are valid points but we know she doesn't mean them, not at least how they come across at face value.