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

Discussion in 'Advocacy, Contests and Events' started by Cort, Jan 20, 2017.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    "It doesn’t matter what you once were - you can't do it anymore." Jennifer Brea

    There's no need to embellish chronic fatigue syndrome (ME/CFS; ME) stories. Shakespearean in their depth, ME/CFS stories can be so disturbing that some people will undoubtedly look for ways to dismiss them. Healthy, active, successful people, after all, don't suddenly end up in bed for decades for reasons doctors can't explain. At least not in most people's reality.

    That's why telling our stories in a calm, matter of fact but forceful manner is best. Adding a touch of humor is really good. Talking to the audience like they're in your living room - is even better. Including their concerns in your story - now, you're really talking. Jen Brea does it all in her outrageously successful TED talk on chronic fatigue syndrome.

    By itself her story is powerful and moving. The shocking collapse of the young, active PhD student: healthy one day, disabled the next. The seemingly ordinary infection, the exhaustion, the strange neurological symptoms, the years in bed, the innumerable lab tests, the fruitless doctor visits, the conversion disorder diagnosis (by a neurologist not a psychiatrist), the terrible relapse after exercise, the lack of help from the medical profession. Jen's nightmarish story with her always evocative visuals (including a moving one of Whitney Dafoe in pain) will undoubtedly wake up many.

    For those who missed the boat the first time around, Jen's masterful punch line - that what happened to me could happen to you, and not just if you have ME/CFS - should capture them. Her assertion that being a woman means being in danger of having an illness downplayed or turned into hysteria or anxiety will resonate. The idea that what's happened to ME/CFS is part of a broad historical trend that any woman could be touched by someday is a powerful one that could help enroll many.

    While she didn't mention them, other primarily woman's disorders such as fibromyalgia, IBS, migraine, interstitial cystitis, vulvodynia and ME/CFS that affect millions have been virtually ignored by the NIH. The pattern is clear; if you have an "invisible illness", most of which happen to women, you're in real trouble.

    After seeing the tremendous increase in immune disorders over the past couple of decades - which, again, has mostly fallen on women - one has to ask why, as Jen put it, women's immune systems aren't as much a battleground for equality as other issues. Why organizations like the National Organization for Women (NOW) have never taken on the conversation in the medical profession that allows it to sideline diseases affecting millions of women year after year after year.

    Being a great communicator is just one part of making a difference. There's also the art of getting the message out. Few are good at both. Jen is obviously good at both. She's the first person with M.E. that I can remember who's been able to get to the TED stage.

    As a blogger who watches internet traffic pretty closely I can tell you that getting 160,000 views in three days is unimaginable. For an illness which counts its internet traffic in the tens of thousands - reaching 160,000 people, most of whom probably know little about it - is beyond believable.

    Jen undoubtedly would have been successful whatever she ended up doing, but I doubt she would have made the difference she has now.

    If you haven't seen Jen's 17 minute TED talk, please consider passing it on to everyone you know.
    Last edited by a moderator: Jan 20, 2017
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  2. Tia

    Tia Member

    She is incredible, just getting up there and doing it would be amazing but expressing it all so unbelievably perfectly... I'm in awe! I hope she recognises what an incredible achievement this is.
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I'm in awe of her ability to sit there and speak to everyone like they were in her living room! And then to lose her train of thought, stop, recover and come back so poised was beautiful.
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  4. pat0814

    pat0814 Member

    160,000 views in three days... She's just that good! This is so easy to post to your social media or email to friends and family, most of whom have likely heard of TED Talks. It's a great way to educate them without pushing too hard. Thank you Jen and thank you Cort for this.
    JaimeS likes this.
  5. Ladyliegh

    Ladyliegh Active Member

    228k views & counting....
    JaimeS and Cort like this.
  6. RUkiddingME

    RUkiddingME New Member

    I am so ridiculously proud of her!! The toll it must have taken on her to deliver this story, our story, must have been huge!! I think I remember reading about her trying to find someone in Banff to giver her an IV that morning as she was struggling. We owe that girl so much!! I hope UNREST is just as powerful tonight at the Sundance Film Festival. GO JEN!!!!!
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  7. Tia

    Tia Member

    Superhuman is the word I've been looking for to describe her after seeing that talk. Only those of us who have experienced it can really know what that must of taken. So much gratitude. GO JEN!!!
    JaimeS and Cort like this.
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member


    It demonstrates how important it is to get our message out on the national stage. The number of people who are being reached and moved by this talk is just amazing. I think this is probably more effective than a news story because of the medium; it's more real when someone is speaking.

    JaimeS, Lissa and Tia like this.
  9. Lissa

    Lissa Well-Known Member

    Looks like it'll break 300k today! WOOHOOOO!!! Go Jen GO!
    JaimeS likes this.
  10. Joya Skye

    Joya Skye Member

    Finally, something to show my children so, perhaps, they will understand at last. I also posted this on FB. Too many people are ignorant. I am so happy you posted this, Cort. Otherwise I would have never seen it. This is a tribute to us all. Thank you Jen Brea! Thank you Cort.
    Lissa likes this.
  11. Lissa

    Lissa Well-Known Member

    I posted on FB too... and kind of challenged people to share it. If we can all teach two people and pass it on, we'll make progress at last.

    In theory anyway.... so far the results on my page have been dismal at best. I was excited to get 4 people to share, but that's 4 out of more than 100 "friends". I'm really saddened by the number of people I thought were supportive who haven't bothered to even look apparently. Bummer.
  12. Joya Skye

    Joya Skye Member

    Hi Lissa, well, a lot of people on FB won't even bother with something that requires more than a "like". And certainly not something an astounding 17 minutes long! But if even a few even watch it, it is progress. For me, just my kids (who I sent it to via email) would be great! love.
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  13. Lissa

    Lissa Well-Known Member

    Indeed! Sad how short attention spans are these days.

    I emailed family too- earlier today. So far echoing silence.... but the day is still young! :)

    Thanks for your support @Joya Skye !
    JaimeS likes this.
  14. Thank-you Jennifer. My daughter cried after watching your Ted Talk, as did I. Some countries' governments have acknowledged that the evidence is undeniable and have committed funding. Canada's government has refused to acknowledge the biological evidence and disease severity and instead have thrown us to the wolves with an unwaivering psych bias. The Federal Health Minister is aware that ME/FM historically tops their lists of unmet healthcare needs of Canadians, yet no action. Our researchers and ME/CFS friendly healthcare professionals suffer too from burnout and collegue psych bias. When do all the inequities become a human rights issue? Is this where we ask the Prime Minister to launch an inquiry into the inequities? Thoughts?
    JaimeS likes this.
  15. Edie

    Edie Active Member

    She is so intelligent, so credible. Why did Ignorance not even pay attention!
    Last edited: Jan 21, 2017
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  16. Ladyliegh

    Ladyliegh Active Member

    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.
    Last edited: Jan 22, 2017
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  17. Joya Skye

    Joya Skye Member

    Always, Lissa. No one understands and can support us like another person with CFS. Bless you, and may you heal miraculously from this devastating disease. love.
    Lissa likes this.
  18. JaimeS

    JaimeS New Member

    We noted the same on PR as well. Many people have an enormous wellspring of FB friends, and what you post may end up very low on their 'feed'. Don't give up -- post it / share it again! And watch as many times as you like; getting that counter up means more people will watch. Right now, we are well past 300,000 views, which is amazing! <3

    I know that Scott at #MillionsMissing Canada is going to be speaking with Philpott soon if he hasn't already. But he did this by showing up to a talk of hers in person, wearing his #MillionsMissing gear and basically leaping up and down until she agreed to speak with him. Brave!

    I have no idea where Jen will be after Unrest premiere. It has to have been physically crushing. But the support she's received has buoyed her, I know. Thanks so much, everyone! <3

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  19. Ladyliegh

    Ladyliegh Active Member

    There is a brief interview from today;
    Sundance TV talks was livestreamed
    No film school/ 2017/Jen Brea has a short interview.
    Sorry on my cell & can't figure out how to post the link.
  20. Tia

    Tia Member

    @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!)
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