Hi Everyone,
TLDR; I am the filmmaker, all of your feedback is incredibly helpful and insightful. I want to create a storytelling, grassroots film, that focuses not necessarily on medical scandal but on patient experience and public misperceptions, in a goal to improve general public understanding and sympathy toward ME.
I'm Trent, the filmmaker working on this project. I am someone who, prior to working on this project, only knew about ME through Stephen's blog. I interviewed Stephen on a day when I had no other work, because I thought the story was fascinating. Upon reviewing the interview and studying the topic briefly, I was stunned by this huge medical problem I had never even heard of before. I am currently deep in the production process and working with lots of better informed people within the ME community to ensure I am telling an accurate, meaningful story. That being said, I am here to learn from those of you with lived experience. The more feedback I can receive in this process, the better the product will be. I am really hoping the final product is a great representation that the entire ME community can be proud of.
Let me answer a few of the questions and concerns being discussed here:
Oh, the title was one of my favorite parts because I thought it was being said ironically.
Yes, the title is very much ironic. In fact, one iteration of our logo (you can see the logo on our website) had the "n't" cut off by the door, so it carried a more heavy double meaning, something like "What Does(n't) Kill You." The logo was a bit messier so we put the words all on the door, but you can see the direction. The irony is that ME is not traditionally thought of as something that can kill you, but it can rob you of your life in its entirety. The idiom "What doesn't kill you makes you stronger" is entirely false in the case of ME. We will not pull any punches with the realities of ME. For example, I hope to touch on the very real conversations surrounding assisted suicide that many ME patients are forced to consider. Obviously these conversations cannot easily be used for marketing the documentary; they can be very triggering for people and can violate terms of service. My belief is that this path is a deeply personal choice, and one that nobody takes lightly. It is a complicated topic that we will not dive deeply into, as it involves value of life in suffering, and respect for someone's personal choices. But it is very important to state with no trepidation that so long as someone does want to fight to stay alive, we need to be in that fight with them.
If that's the gist of the project it seems more than a little concerning to me.
In my experience. what makes it so difficult to get proper care in terms of acceptance and support for dealing with my ME/CFS specific disabilities is the misconceptios on both sides -- the psychosmatic misconception as a cognitive-behviorial problem as well as the mislabeling as an 'autoimmune' or other named specific biomedical process when there is no good evidence for it (yet).
The quote from me "this is the right time for a documentary on ME/CFS to change people's outlook on autoimmune...etc." I actually couldn't find where you guys had pulled this from at first, until I realized it came from my bagelrun website, rather than the documentary domain (
https://whatdoesntkillyou.movie/). I will just need to ask for some grace here- that page on my website was the first thing I mocked up for this project, and since then I have partnered with better informed individuals, and the direction I've take toward the project has largely shifted. I just removed this line from my personal website when I saw it was on there. First of all, I understand it is incorrect to label this as an autoimmune issue. Additionally, I've shifted directions from some sort of medical expose into more of a lifestyle documentary.
The reality is that people with ME feel that their stories are not being told. For any issues (also merits) that Unrest may have, it does have at least one great quote from Jennifer Brea: "Sickness doesn't terrify me and death doesn't terrify me. What terrifies me is that you can disappear because someone is telling the wrong story about you." I believe that control of your own story is tied to one's sense of identity, and I am hoping to help individuals who are suffering be able to reclaim this part of themselves.
We've been collecting tons of personal testimonials about ME and platforming them as part of our promotion. These are unedited other than trimming them down to fit media time restraints, and censoring anything that would get them struck down anyways. Please do not feel any obligation to participate, but if you have a story you would like to share, you can use the portal that Stephen setup here: mecfsstories.com
Please let me know any other questions you all have, or any concerns you have about the direction we are taking. Again, I want this film to be grassroots, and I need this kind of feedback. We are still in production, and I am learning everyday about this disease and this community.
Thank you for taking the time and energy to read this,
Trent Eliason
