Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

[Jan]

603,076 Wow, it really shows just how much interest there is in this disease! If only our governments would take heed.

 

[SB_1108]

603,076 Wow, it really shows just how much interest there is in this disease! If only our governments would take heed.

Everyone should send it to their relevant elected officials.

 

[JaimeS]

Everyone should send it to their relevant elected officials.

This would be a great article or write-up for #MEAction -- I have no bandwidth, but perhaps someone with an advocacy background could draft a sample letter and a how-to for contacting officials in your area.

 

[Little Bluestem]

I think that Jen Brea is going to be on NPR's TED Radio Hour this week. I heard a promo for a segment about a woman with an undiagnosed disorder. I assume that is her. Different stations air it on different days. If you are interested you will have to check the schedule of your local NPR affiliate.

 

[Sasha]

Jen is now featured in an episode of Guy Raz's NPR radio show, the TED Radio Hour:

http://www.npr.org/2017/02/10/51412...diohour&utm_term=nprnews&utm_content=20170208

(Click the round blue button in the top left.)

BBC Radio 4 has this show (though I don't know how much it lags the broadcasts on NPR). It would be great to have it on R4, raising awareness in the UK. It includes the long-term ruinous effects of exercise (a single walk home from a doctor who told her to do more) on Jen.

 

[belize44]

Just seeing this now. My husband and I watched it and were both in tears. Thank you! I feel so validated!

 

[John Mac]

Just received this email update from #MEAction on the TED talk

In just over a month, my TED talk has been translated into 18 languages and has been viewed over 890,000 times. This has been thanks in large part to how much you have shared and spread this talk and its message about the reality of Myalgic Encephalomyelitis (ME).

Now I need your help. We want to reach 1 million views for the #MillionsMissing!
Here are three ways to help:

1) Share on social media
Go to the TED page and use their social sharing buttons to share the talk on Facebook and Twitter. Use the hashtag #millionsmissing

​

2) Email the talk to 10 people you know

Share the talk with a friend, a loved one, or a family member so they can better understand your experience. Or share it with someone you know grappling with another chronic illness who might relate.

3) Use the talk as a way to start a conversation with someone in your community

Send it to a doctor, nurse, school teacher, or community or religious leader you know personally, for example. A deeper understanding might help them to better serve adults and young people living with ME and other invisible or chronic illnesses.

Thank you as ever for your support and your activism! Together, I believe we will achieve full recognition of this disease and someday soon, find a cure.

Yours,

Jen

 

[dangermouse]

This inspirational brave woman is one of my heroes. I got very emotional when I saw her TED talk, it was powerful and sensitive at the same time. Thank you Jen.

 

[AndyPR]

963k views now.

As it is International Women's Day today, I think this is a suitable occasion to share the talk again.

 

[Gemini]

TED Talk has been released. and it's great.

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Looks like Jen's Ted talk just topped 1,000,000 views!!!

 

[Kati]

 

[Old Bones]

I've always loved these "doodles" highlighting medical and political issues. Here's one recently done about Jen's TED Talk:

 

[AndyPR]

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Now at total views of 1,214,648, and also now has 26 subtitle languages, which I found impressive.

 

[dangermouse]

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Now at total views of 1,214,648, and also now has 26 subtitle languages, which I found impressive.

Amazing!

 

[Annikki]

This is a harrowing TED Talk about this woman's struggle with ME/CFS:

 

[lafarfelue]

It's really great, isn't it?!

Jen Brea is a member of the forums here.

She's also made a documentary film called Unrest, which can be found internationally on Netflix, Prime Video, iTunes, Google Play. Very very highly recommend it.

 

[JinZ]

It's really great, isn't it?!

Jen Brea is a member of the forums here.

She's also made a documentary film called Unrest, which can be found internationally on Netflix, Prime Video, iTunes, Google Play. Very very highly recommend it.

I think she's seeing the same Dr. As me

 

[Snowdrop]

Jen also set up (with others) #ME Action/MillionsMissing advocacy to further awareness of ME as a serious disease and get governments/philanthropists and researchers to provide more funding and do the bio research needed for treatment and a cure.
See: https://www.meaction.net/

 

[Westley]

In the past i stopped watching TED talks cause it was a bunch of amateurs with misinformation pretending to be experts. Ill watch this link though and hopefully it will be better thanks.

 

[TheChronicSituation]

I have just watched Unrest; a powerful, moving, important film. Blog post from my M.E. blog about the film here...
http://thedamnchronicsituation.blogspot.ie/2018/05/unrest.html