Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Host a screening of Unrest; raise money for research!

Discussion in 'Fundraising' started by Cheesus, Mar 20, 2017.

  1. *GG*

    *GG* Senior Member

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    Concord, NH
    See pic attached, share as appropriate :)

    GG
     

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  2. Joh

    Joh Inactivist

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    Just in case someone is interested and hasn't seen it yet, there is also a facebook group for people who organize screenings (Jen Brea and other members of the Unrest teams also take part): https://www.facebook.com/groups/1720957684875949/. There are volunteers from all over the world and they exchange great ideas, e.g. they combine the screening with talks from doctors and ME-patients, plan Q and A, offer ME info material for the audience to take home (including links to biomedical research you can donate to), display empty shoes at the site of the screening, give best practice tipps how they reach out to politicians, doctors etc.

    I believe the amount is correct and one would have to sell tickets or collect donations. The kickstarter campaign also had the option to donate a community screening and some people chose it. So it seems possible that a few screenings could be done for free, guess that would be the exception for special circumstances though. Not sure if maybe other rules and (lower) amounts apply if you show the movie at a medical conference or for med students for example.

    I believe if you organize a screening, you get access to several different pictures, materials and non-binding how-to-guides as support and you're free to chose what you think works best (including which pictures) and can decide everything about your screening on your own.

    Not sure what you mean? Jen Brea uses a wheelchair in every picture and video. She even wrote pieces about how her wheelchair gave her a little freedom back and about how it feels to not be allowed to bring a wheelchair into a plane and how she couldn't attend an Unrest premiere festivity at a film festival because it wasn't wheelchair accessible. There are only two pics where Omar is carrying her, both times the wheelchair is standing next to them, one time at the beach (where I guess the wheelchair didn't work), the other time at a road (maybe wheelchair broke down? Or road was too steep? No idea).

    http://see.unrest.film/showtimes/ But the list gets updated all the time, so more cities/countries to follow.

    Will see the movie online tonight so can't comment on Unrest itself yet. But even in case I'll personally dislike it, Unrest must do something right.
    It was in the mainstream press and on radio and tv in the US, UK, Norway and Australia so far (great empathetic pieces about ME as a severely disabling and neglected organic disease that otherwise wouldn't have been out there).
    I followed the press and reactions on social media. A lot of people wrote that their family and friends understood and believed them for the first time. There were doctors and med students who expressed how shocked they are that such a severe disease could fly under the radar for so long. Doctors wrote they started reading on pubmed and couldn't believe that there has been so much research reaching back to the 1930ies and they had no idea it exists. One lab already joined ME research after seeing the movie. Jen Brea is soon talking at a medical conference. Screenings for politicians are being organized (and I think one already happened at capitol hill as part of the Solve campaign?). A lecturer wrote an article about how she screened it for her students.
    And the #timeforunrest campaign has just started in September.

    I believe the campaign is what we make of it. If we want Unrest to be seen by doctors and politicians, we can reach out to them. We have professional Unrest teams in the US, UK and Australia who try to help to realize our ideas. I see Unrest as a tool that can be used to support all of our other advocacy efforts. It doesn't take other strategies away from us, it's an addition that can help to gain attention for ME, worldwide at the same time, and magnify all of our efforts.

    I'm deeply grateful to everyone who organizes a screening. :) Even if it's happening in other countries, I think more awareness anywhere will help all pwme in the end.
     
  3. fingers

    fingers Senior Member

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    @Joh, thanks for feedback, it will be great if you can post again after you've seen it. I'd also be interested to know how the event as a whole goes. How received, any ensuing discussion? Who attends? Reaction of doctors, social care workers, teachers?

    Another point I'd make is that whilst ME is devastating for those severely affected, it can sometimes be equally hard in a different way for those mildly to moderately affected - in them, the illness is mostly invisible. Many work full-time with it, going to bed straight after work. So the point needs to be made that, like say MS, ME can be very variable, both inter and intra-individuals (i.e. day to day variations).

    Finally, does the film suggest any explanations? There seems to be an emphasis on using the term 'autoimmune'. I think we need further (re)exploration of a simpler, infectious model...and yes, there's tons of research going back decades, much of which got buried very quickly, especially if it was getting to the crux of the matter...we wonder why...
     
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  4. fingers

    fingers Senior Member

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    OK, Binkie, do let us know if you think it does...effectively. Thanks
     
  5. Binkie4

    Binkie4 Senior Member

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