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Worldwide premieres of "Unrest"

Sasha

Fine, thank you
Messages
17,863
Location
UK
We need to tell people what they can do - a simple thing they can do in a few seconds while they're still interested and before they move on with other things. We can expect the film to raise awareness but not to hold people's attention. We should be putting out donation links for OMF and Solve.

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.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
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!
 

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.

Tuha

Senior Member
Messages
638
We need to tell people what they can do - a simple thing they can do in a few seconds while they're still interested and before they move on with other things. We can expect the film to raise awareness but not to hold people's attention. We should be putting out donation links for OMF and Solve.

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)
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
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)

@JenB
 

slysaint

Senior Member
Messages
2,125
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
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
@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.
 

JenB

Senior Member
Messages
269
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.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
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.

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. :)
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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.
 
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Kati

Patient in training
Messages
5,497
I was just looking at the Unrest website, and saw that each person who donated to support the film is named, not being able to remember if I donated or not I had a look and saw Justin Reilly's name there. Another poignant, heart-breaking moment.

Did I miss anything @justy ? Did you mean Justin Noble?
 
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Old Bones

Senior Member
Messages
808
I have searched through all the comments and can't see it? Is it still there?

@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."
 

TreePerson

Senior Member
Messages
292
Location
U.K.
Tha
@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."

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.
 

Kati

Patient in training
Messages
5,497
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:

Unrest takes a very frank look at the often misunderstood illness known as ‘chronic fatigue syndrome’ that is both informative and hard to watch.

There is nothing worse than being told ‘it’s all in your head’ when you know you’re sick. Anyone who has suffered from an unknown illness can tell you that those words are extremely hard to hear. That is something that the documentary Unrest is trying to help us all see, because there are times that illness isn’t as easy as finding the answer and then fixing the problem. Sometimes there aren’t any answers and it means hearing a lot of people disregard you as ‘stressed’ or ‘depressed’ or ‘hysteric’. Jennifer Brea began to fall ill one day but no one was able to figure out what was wrong. She decided that since no one was listening the best way to prove something was wrong was to film everything that happened. The documentary opens with Jennifer lying on the floor and physically crawling back to bed like it’s the hardest thing she has ever done.

Read more at the link above.

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