Jen Brea giving TED talk on 27 June

Snowdrop

Snowdrop

Rebel without a biscuit
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I'm so glad Jen Brea was able to do this--I hope at not to great a personal cost. Huge thanks.
Reading the reaction I'm a little choked up--I hope people will remember her points long after the dust settles on the conference.
 
Old Bones

Old Bones

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@JenB may have achieved the greatest exposure for ME in a short period of time, ever. I just added up the "Followers" for those in attendance who have already posted original Tweets -- a staggering 499,720*. The Twitter accounts for TED Talks and TED Fellows add another 7,651,900 Followers.

A very hopeful day for all of us.

*Edited to update.
 
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AndyPR

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Guiding the lifeboats to safer waters.
Post from Jen on the Canary in a Coal Mine Facebook page;

https://www.facebook.com/canaryfilm/posts/722146337923102

So much love in the room today at the TEDSummit. It was HARD. I started having expressive aphasia yesterday as a consequence of all of the cognitive effort put into attempting to memorize a 2,600 word, 15 minute talk. I honestly did not think I would make it.

I began the day with a saline IV, thanks to a few angels, and pulled out every single trick I have just to get on that stage. I ran into a brick wall about five times during the talk when there was just nothing but blank – no words, no thoughts. But everyone stood and silently cheered and sent up love and support when I stumbled. And I made it! To the end! It was hard because the old me, the me that I was and still am, wants to nail it, wants everything to be flawless. And I realized on stage that it's OK to let what is broken be broken. That it's more important to be true.

<continues at link>
Click to expand...

https://www.facebook.com/canaryfilm/posts/722146337923102

I know non-Facebook people can view the post, @Old Bones kindly confirmed it :)
 
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mfairma

mfairma

Senior Member
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Sounds like Jen did a wonderful job! I'm looking forward to watching it.

That article on TED is a bit annoying, though. It's either poorly expressed or whoever wrote it got the wrong message. I'm tired of all the implications that mood and "mind" are heavily involved in this disease.

"Imagining a distinct border between mind and body has been a useful rule of thumb since Enlightenment philosophers dreamt it up centuries ago. It’s been particularly useful for modern medicine which has focused its scientific eye on the rational, physical body — and for the most part left the mind with all its mutability and moods to others to cure.

But that simplistic approach leaves plenty of people out in the diagnostic cold. One of them is Jennifer Brea . . ."
 
J

JenB

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I caught that @mfairma and have requested the article be edited to better reflect the content of the talk. Hopefully that won't take too long :)

Thank you everyone for your kind words and support. I am pretty destroyed right now. I almost never get cognitive PEM but in the process of memorizing the talk, pushed myself to a place I didn't know I could go, and started experiencing symptoms I haven't had in three, four years. Wish I could say more but this support means everything. It carries me. Thank you.
 
Kati

Kati

Patient in training
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5,497
JenB said:
I caught that @mfairma and have requested the article be edited to better reflect the content of the talk. Hopefully that won't take too long :)

Thank you everyone for your kind words and support. I am pretty destroyed right now. I almost never get cognitive PEM but in the process of memorizing the talk, pushed myself to a place I didn't know I could go, and started experiencing symptoms I haven't had in three, four years. Wish I could say more but this support means everything. It carries me. Thank you.
Click to expand...
Getting 'head cramps' comes to mind. They're not fun.

Rest, @JenB and thank you. Hopefully you can visit Lake Louise
 
Hutan

Hutan

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I am feeling deflated. There we have Jen, articulate and bright and totally conversant with our illness delivering a talk that, from the tweets, appears to have been everything we might have hoped and more.

And yet, David Coleman, the person (presumably journalist?) who wrote that TED Blog after listening to the talk and who is presumably of at least average intelligence, appears to have interpreted the talk as a call for more biosociopsycho stuff, not less. I am sure most people who are unfamiliar with ME and the politics around the illness reading that blog, even after the edits, would interpret it as saying that medical scientists and psychologists need to come together to solve the illness.

The blog still starts:
Imagining a distinct border between mind and body has been a useful rule of thumb since Enlightenment philosophers dreamt it up centuries ago. It’s been particularly useful for modern medicine which has focused its scientific eye on the rational, physical body — and for the most part left the mind with all its mutability and moods to others to cure.
Click to expand...

and
Brea started doing her own digging online, finding a whole population of millions of people with similar symptoms who had been diagnosed with chronic fatigue syndrome, an widespread phenomenon that is poorly understood and badly under-researched
Click to expand...

So, what we have is not an illness or disease, it's a 'phenomenon'. Can you imagine anyone saying that about cancer for example? As in 'oh, he's suffering from the phenomenon of testicular cancer'.

I know, I know, I'm cranky and 'glass half empty' today. And we should be celebrating a great talk delivered in an important forum. But really?

If a presumably sympathetic person can listen to a passionately delivered, informed talk and still think and write this kind of stuff, well, we have a long way to go.
 
S

Sasha

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I think that article is going to fade in the background when the video of Jen's talk comes out.

What can we do to promote the video? It sound like we've got a chance of something fantastic going viral?

And, importantly, we should leave a comment underneath telling newbies how they can help. From the tweets, it sounds as though Jen has suggested people join the network and wait to hear about the next big push but they can also donate - to Canary, to #MEA, to Ron Davis's End ME/CFS Project via the OMF...
 
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Bob

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Sasha said:
What can we do to promote the video? It sound like we've got a chance of something fantastic going viral?
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I guess we just have to promote the heck out of it. And get everyone we know, and people we don't know, to watch it. Send it to our political representatives. Try to get journalists interested. Can we get it on the CDC website? Get CFSAC to promote it?
 
S

Sasha

Fine, thank you
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Location
UK
Bob said:
I guess we just have to promote the heck out of it. And get everyone we know, and people we don't know, to watch it. Send it to our political representatives. Try to get journalists interested. Can we get it on the CDC website? Get CFSAC to promote it?
Click to expand...

Interesting!

Do you think we should start a new "How can we promote Jen Brea's TED talk?" thread?

Presumably it will go bigger if it has velocity, and will have more velocity if we've got our act together ahead of time?

@JenB, @JaimeS, do you know when we can expect the video link?
 
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