Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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Worldwide premieres of "Unrest"

Discussion in 'General ME/CFS News' started by Sasha, Jan 20, 2017.

  1. Sasha

    Sasha Fine, thank you

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    I've just taken my own advice and posted a comment on Jen's TED talk about this - please upvote my comment to get it to the top:

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

    I posted as "Sasha T". I don't seem to be able to link directly to it.
     
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  2. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Something I've been thinking about this week is linking different aspects of current ME advocacy in social media.

    A tweet about TEDtalk could have a reply about #stopGET and another one about Unrest and another about donating to research (not confusing internal debates though that may put people off). Then when people engage with the TEDtalk and RT the extra replies get shared along with it. This will look better if coming from different accounts. So if you see tweets about one of those things reply with another eg watch this talk >sign this petition >look out for this film now showing at Sundance.

    Ideally include (1) ME # (2) # that may engage other groups (3) specific #

    so #pwme #feminism #TEDtalkME or #MillionsMissing #healthcare #stopGET or #MyalgicE #disability #Unrest

    Similarly on Facebook we could reply in comments. If you see a post about the TEDtalk or Unrest reply with an action people can take. Also share in any group that maybe vaguely interested: women's groups, disability, healthcare etc etc

    What do you think?

    Long shot: can we engage people interested in #womensmarch ? I think Trump is going to produce a lot more feminists so that is something to capitalise on, silver linings and all that!
     
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  3. Jenny TipsforME

    Jenny TipsforME Senior Member

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  4. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    Ben Howell, Sasha and Jenny TipsforME like this.
  5. Tuha

    Tuha Senior Member

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    exactly. I hope when Jen is talking at Sundace or anywhere that she promotes danation´s options. If someone is in touch with her - he can propose her this idea (maybe she is already doing it). Maybe it´s too late but it would be great to have a donation link in the movie or after the movie (like when the people watch it in the cinema after the movie there could be a donation link)
     
  6. Sasha

    Sasha Fine, thank you

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    @JenB
     
  7. slysaint

    slysaint Senior Member

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    Dont't know if this has been posted but it's quite a good write up (pre-screening):
    http://www.parkrecord.com/entertainment/sundance-slamdance/unrest-documents-lives-of-me-patients/
    "
    Trying to ignore bouts of excruciating muscle pain, Jennifer Brea forced herself to walk home after a doctor diagnosed her with myalgic encephalomyelitis, commonly called chronic fatigue syndrome.

    During her walk, Brea tried to believe what her doctor said: Her condition was psychosomatic and most likely caused by a past trauma she would never remember.

    Brea, then a Harvard PhD student, thought she could fight the autoimmune disease with symptoms that include muscle pain and sensitivity to light and sound by telling herself what she had was merely “in her head.” But despite her willpower, Brea collapsed once she made it to the door.

    Since Brea was diagnosed with myalgic encephalomyelitis, or ME, she has realized there are several misconceptions surrounding the illness many identify as a made-up condition.

    Hoping to fight ME’s stigmas and to push for a more medical description of the disease, Brea completed her first film, “Unrest,” which will premiere Friday at the Sundance Film Festival.



    “Unrest” is in Sundance’s U.S. Documentary Competition and will screen at the following times:

    • Friday, Jan. 20, 9 p.m. at Temple Theatre, Park City
    • Saturday, Jan. 21, noon at Redstone Cinema 7, Park City
    • Monday, Jan. 23, 3:30 p.m. at Broadway Centre 3, Salt Lake City
    • Wednesday, Jan. 25, 3 p.m. at the Sundance Mountain Resort Screening Room, Sundance
    • Thursday, Jan. 26, 9 a.m. at Library Center Theatre, Park City
    read the rest on the link
     
    Last edited: Jan 21, 2017
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  8. Sasha

    Sasha Fine, thank you

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    @slysaint, that's great - but would you like to just post the first couple of paras and link to the rest so that parkrecord.com gets the traffic?

    We should reward them (and the reviewer) with traffic - they deserve it, for good coverage, and it will encourage them to do more for us.
     
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  9. Laurie P

    Laurie P

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  10. JenB

    JenB

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    Thanks so much for sharing, Laurie. It's so important that we raise funds for the impact campaign – this is how we support the team to get the film out there as widely as possible, to reach new scientists, new doctors, new philanthropists, new foundations, new policymakers and public officials. The film is a multiplier effect that I believe has the potential to grow the entire field and I hope in the process, that will bring in many X more funding for our scientists.
     
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  11. Sasha

    Sasha Fine, thank you

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    Is there a way of getting that link into the comments or somewhere? It kills me to see all those hits for your amazing talk without us being able to give the viewers some positive action to do. :)
     
    trishrhymes likes this.
  12. justy

    justy Senior Member

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    I was just looking at the Unrest website, and saw that each person who donated to support the film is named as well as all the bigger supporters and donators.




    edited - I confused two members of PR, sorry if I upset anyone.
     
    Last edited: Jan 22, 2017
  13. Kati

    Kati Patient in training

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    Did I miss anything @justy ? Did you mean Justin Noble?
     
    Last edited: Jan 21, 2017
  14. justy

    justy Senior Member

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    yes, I did, Apologies to anyone I might have worried. Damn M.E brain again. feeling embarrassed. will edit my post.
     
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  15. Sasha

    Sasha Fine, thank you

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  16. TreePerson

    TreePerson

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  17. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    It would appear it was taken down, probably due to the links in it.
     
    TreePerson likes this.
  18. Old Bones

    Old Bones Senior Member

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    @TreePerson I, too, am unable to see your comment. Perhaps there's a delay between when the poster sees the comment, and when it is moderated and available for general viewing.

    Otherwise, it appears TED has wisely decided to moderate their Comments section. If not for the efforts of our own PR moderators, it's unlikely I'd still be participating, based on my poor experiences with other on-line communities.

    Here's a link to the TED "How-to guide" for those who may wish to post comments:

    https://www.ted.com/participate/discuss/how-to-guide

    It seems the most likely reason comments from our community might be denied falls under the "personal requests" description (eg. links to other websites requesting donations).

    From the "How-to guide":

    "If your comment or Conversation is removed by the TED Conversations Team, please consider working with us to revise your content until it is appropriate for the community."
     
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  19. TreePerson

    TreePerson

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    Thanks people. It wasn't my comment but I would have been happy to upvote it as a small thing to help. I get why they would want to protect the integrity of the talks and their organisation.
     
  20. Kati

    Kati Patient in training

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    Here is a first critique from an audience outside our community. This is what matters most to me, how the public not in any ways attached to our community will review the film, and whether they would recommend it to others to watch. What matters most is the impact it has outside our community. The theaters need to fill with members of the general public, med schools, medical associations, researchers, policy makers.

    https://www.bleedingcool.com/2017/01/23/sundance-2017-unrest-emotional-watch/#comment-anchor

    Kaitlyn gives a 8.5 stars out of 10

    Exerpt:

    Read more at the link above.

    P.S. she mistakingly calls Omar, @JenB 's husband, Oscar.
     
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