Jen Brea's Outrageously Successful Chronic Fatigue Syndrome (ME) TED Talk

[Lissa]

@JaimeS @Lissa ... not everything we post shows up on friend's fb feeds.

Facebook 'curates' everyone's feeds without us knowing. Posts with key words in are more likely to show up on friends' feeds.

The key words I know that work are things like 'congratulations' which suggest a major life event. So post it with an intro. saying 'Congratulations Jen Brea' and it might get more shows?? And keep posting!!

(Just an amateur bit of PR knowledge I've picked up from somewhere!)

Ha! That's interesting. I had actually reposted the link again the other day. But this time I used a picture of my cat to sucker people in... bwahahaha!

I told them there weren't any kittens or rainbows, but the cat would like them to watch. Sounds like those were good key words. ;-)

Go figure, it actually got more attention - although there's no telling if anyone actually watched the full TED Talk.

 

[Cort]

I read a lot of comments on YouTube, just amazed at how many didn't get it...
I went to her FB page today, I'm curious as to how her film "Unrest" has done, no update on that yet..
But, the number of comments, saying we have the cure, dozens of people think they have the cure for CFS/ME....LOL!
It just goes to show there is no end of people looking to take advantage of the sick..
(I am sure a few actually were trying to help)
There were also lots of sweet supporters thanking her for her efforts.
I am really rooting for her & her film!
YAY! over 300k in views on Ted talk.

That is sooo weird! Hopefully most of them found something that helped them but jeez!

I too am waiting the word on Unrest...It's had quite few showings by now.....

 

[Ladyliegh]

Forbes magazine did a nice article on Jen Brea & Unrest.
From her website, the official screening is tonight...

 

[Tia]

I think it's a really good article. I love the positive spin he's put on it - makes you feel that change is possible. Really clever way of setting the problem up as something that needs an 'entrepreneur' to solve it because everyone wants to be that entrepreneur that cures a rare disease. What a difference it makes having a positive sounding headline and one that doesn't have 'chronic fatigue' in the title. Referring to it (rightly) as a disease rather than an illness is a good use of language too. I'm sure that language used is part of the key to challenging the (often unconscious) bias we face.

I love how this article shows how serious the disease is and also makes readers think that this is something that can be done. Good piece of writing.

http://www.forbes.com/sites/bruceka...to-cure-anti-initiative-disease/#10e5e2d8820f

 

[Tia]

And the 'Anti-Initiative disease' is great!

 

[Tina]

I don't know. I'm not really a fan of the name unrest and I really don't like the name anti-initiative. I've got nothing better so who am I to give my opinion? I am grateful for the coverage.

 

[Phil Hayward]

I am sorry I forgot to place a comment after watching this. There is so much I relate to in it. "We became our own doctors, because we had to". We formed online discussion groups, followed the latest research, and shared information. This way, we moved towards understanding our own condition faster than anyone in the unfocused mainstream medical profession was ever going to.

Is this a revolution in health research, akin to the revolution in mass online tertiary education, and the revolution in self-directed learning? In a way, what we are doing IS self-directed learning."We became our own doctors".

Can someone get on TED about FM as well now please? I'd love to get on TED about two things. FM, and urban economics (a profession in which there is a systemic failure also occurring). Where does one start?

 

[Ladyliegh]

Unrest will be on US PBS, in early 2018...
Pretty good reviews so far...
B+
3 1/2 stars out of 4?
8 1/2 stars out of 10

I keep hoping Sundance channel will run it..

 

[Ladyliegh]

Update on Jen Brea's Ted talk...
Just under a million views & subtitles in 19 languages...
Congratulations Jen, the more people who watch, the more people will understand our plight & struggle, hopefully.

 

[Cort]

Update on Jen Brea's Ted talk...
Just under a million views & subtitles in 19 languages...
Congratulations Jen, the more people who watch, the more people will understand our plight & struggle, hopefully.

Wow....

 

[Ladyliegh]

Jen Brea TedTalk over 1 million views & 21 languages subtitles.
This may well be the best tool for educating the public on CFS/ME.
I really hope some medical professionals are watching this...