Funding Unrest

Photo courtesy of Unrest

Four years ago, I wrote that Jen Brea’s film, then titled Canary In A Coal Mine, could be a defining moment in ME advocacy. Today, we stand on the threshold of a watershed moment for our disease, and Jen is asking for our help.

Jen finished her film, now titled Unrest (here’s the trailer), and it is very very good. The film has won awards at Sundance, River Run, Nashville Film Festival, and the Sheffield Doc/Fest. Not only that, but the film will be released in select theaters this fall. AND the film will also air on PBS Independent Lens in January 2018.

Think about that for a minute: a film about ME is winning awards, will air in theaters and will be shown on PBS. As an ME activist for close to twenty years, I can honestly say that I have only dreamed of this kind of publicity.

Back in October 2013, I was impressed by Jen’s approach to storytelling. I wrote:

What makes people want to support this film is the intimate connection with Brea and others featured in it. It’s the story that pulls you in, and the story that makes you want to do something to help. If that’s true of the Kickstarter, it can be true of the film. And that could be a defining moment. We’ve longed for and dreamed of widespread public attention to the realities of having ME/CFS. Canary In A Coal Mine could deliver. . . . I would like to believe that the galvanization of our movement is at hand: that our story will be HEARD and SEEN. I would like to believe that change is coming.

That moment is here.

In conjunction with the film’s theatrical release, Jen and her team are launching #TimeforUnrest. This is an impact campaign to mobilize the public, educate health care providers, and inspire new researchers to enter the field.

Ambitious? Yes. Possible? Given Jen’s track record so far, absolutely! Over the past four years, Jen has repeatedly demonstrated her commitment to high quality work, and informed, action-oriented activism.

Here’s what you can do: check out the Kickstarter campaign and donate if you can. Whether you are able to contribute money or not, spread the word to your family and friends. There are 13 days left to go, and a little over $40,000 to raise (as of August 12th at 12 pm).

We helped Jen make this film. She leveraged our resources to get support from many many others. Now she is offering us not only a great film, but the structure to leverage the film into the social change we need so desperately.

I want everyone to see Unrest, but I especially want health care providers to see it. I want people who doubt the reality of ME to see it. I want a wave of public compassion and commitment to action to crash down on NIH and force a meaningful, sustained response to this public health crisis.

I’ve been sick for almost 23 years, and I have come to recognize that I will never regain much more function than I currently have. My activism is now about forcing change so that someone who has just fallen ill will not be sentenced to a life of being unable to fulfill one’s full potential. This is our moment. It’s time for unrest.

 

Disclosure: I am a financial backer of both the film Kickstarter and the current #TimeforUnrest Kickstarter. I was also interviewed for the film.

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10 Responses to Funding Unrest

  1. Chris Heppner says:

    Jennie, thanks for distributing this news–after admiring her TED talk, I look forwards to seeing the movie and following its reception. I too am one of her “canaries,” and I think it is great that the two of you work together–we are lucky to have you both onside.

  2. Cindy Downey says:

    Jennie, thank you very much for raising awareness about Jen Brea’s film. It is a truly remarkable accomplishment, and I am very much looking forward to seeing it. Jen, and her film backers are why this film, and the story of ME, can reach many corners of the world, including the October 3 screening, at the University of British Columbia, Okanagan campus, in Kelowna, BC. For further information, please call the Diversity Resource Centre at 250-807-8053.

    Thank you again, Jennie, for featuring this wonderful film – may it change and improve many lives!

  3. Rivka says:

    Donated!

  4. Sura says:

    Dear Wonderful Jennie, (et. al.,)

    Thanks so much for alerting us. Thought someone should let Jen Brea or others on her team know this – and the KickStarter ‘Unrest’ website has only a no-reply address. I made my donation for the “Virtual Red Carpet” (think I was backer #686) and received a confirmation number but when I try to verify my email address, which it keeps asking me to do, I get an alert that says “Sorry, that password reset link has expired or has already been used.” There doesn’t seem to be a way to let KickStarter verify my email address. I’ve tried several times and it keeps kicking me out.

    I guess I won’t know for sure until August 25th if my credit card is charged, assuming we reach this goal (or better it!) by then, whether mine got through. I’m hoping once this year’s initial excitement has died down we’ll be able to see ‘Unrest’ again, perhaps on Amazon Prime (which is how I watch Ryan Prior’s ‘Forgotten Plague’, ‘I Remember ME’, ‘What About ME?’, ‘Funny, You Don’t Look Sick” etc.), or suggest them to others (family, friends, healthcare professionals whose eyes roll back in their heads when I acknowledge my dx) who might feel more comfortable watching at their leisure.

    Gathering for public viewings and tuning in to PBS in January are great for people already very motivated but I suspect we’ll encounter people in need of education about ME for the rest of our lives. Most of these might only be willing to watch alone, without attending an event. I hope that eventually the best of these will be included on web sites for professionals in need of Continuing Education Credits (some of whom may never have heard of us) with appropriate testing of their understanding before CE credit is awarded.

    Converting medical and family doubters may always be useful. Some may need re-inoculation. The damage they can and have done leaves emotional scars. I include links to ‘Forgotten Plague: ME and the Future of Medicine’ (note: there’s another film with a similar title about Tuberculosis on Amazon) and to David Tuller’s articles on Vincent Racaniello’s Virology Blog in emails I’ve written to medical reporters who have ‘bought’ the newest psychosocial theory published. My http://www.storkapp.me brings word of such studies regularly. Then disinformation in even reputable health magazines and blogs starts popping up again all over the world as ‘news’ touting CBT and GET ‘cures’ requiring us to re-educate our excited families, friends & doctors.

    Funding for our illness was diverted from appropriate research for decades. It may take as long or longer to reverse the damage once we’re safely back on track. It was likely such disinformation that allowed funding to be rescinded for 2018 for projects already begun. I don’t know when we’ll hear if our calls and email to our Representatives and Senators have helped.

    I still have great hope. Watched the first half of the Open Medicine Community Symposium live streamed online today, then had to go back to bed. Will see the second half on YouTube as soon as it appears. Despite all the fine work that has begun, we again seem to be losing ground. I’d thought we’d turned this around with small private and University funded studies that were now ripe for larger cohort government research. There’s so much more I want to do, but my kidneys now seem to be failing. Turned 70 last month and have had this for 52 years. I may now have graduated to a progressive version.

    My new Nephrologist (seen for the first time a few weeks ago) suggested I submit to depression screening. I found an old short version of one online, but if I answer that one honestly, the results (just common symptoms of ME/CFS) would indicate depression. We’ve got to fix this. Does anyone know if there’s a depression screen specifically designed for us? Maybe Lennie Jason created one. On Pfizer’s old PHQ-9 my answers to questions 3, 4, 5, 7, 8 would have scored me with ‘moderately severe’ depression. But I’m not depressed at all. Just ill.

    Education. Education. Education.
    Sorry this is so long. Too sick to edit myself today.

    • Jennie Spotila says:

      Hi Sura,

      I am not connected to the Kickstarter, so I can’t help you sort out the email thing. Have you tried contacting Kickstarter directly?

      I really appreciate your comments, and I think your final point was excellent. Instead of location, location, location, we need education, education, education.

    • Janelle says:

      I had a doctor who gave me a depression screening every time I saw him. He was very perplexed that they always came back not depression. I think he kept giving them because the symptoms score (from M.E. symptoms!) indicated by the inept scoring system that I might be at risk.

      But if done right, they can’t count it as depressed unless you answer that you lack self-worth or feel sad.

      You can give them Ellie Stein ‘s explainer about how to tell the difference, if you think they will read it. But it would be better if we didn’t have to do this one by one!
      http://www.eleanorsteinmd.ca/publications/

      • jimells says:

        Dr Leonard Jason has developed a very simple method to discriminate between ME and depression: ask the patient what they would do if one day they woke up recovered. ME patients have a very long list. Depressed patients, not so much.

  5. Cynthia Goldsmith says:

    I donated and posted on Facebook. From that, a friend donated $50. Keep it going everyone. Love and support to all.

  6. kathy d. says:

    Very good of your to promote fundraising for Jen Brea’s important film. I will send a check as I don’t do online donations due to past problems.

    Jen Brea’s film and the important work at Stanford and elsewhere is crucial. I didn’t have the energy to see the symposium but have read Cort Johnson’s Tweets, although I don’t understand a lot of the terminology.

    Thank you for your hard work on all of this.

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