What Doesn't Kill You [Forthcoming Documentary]

forestglip

forestglip

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What Doesn't Kill You
Lives in the grip of ME/CFS

✓ Coming in 2025
✓ 100% of profit reinvested in ME/CFS research and education

"What Doesn't Kill You" is a forthcoming documentary exploring the lives of people battling ME/CFS, a scandalously underfunded and chronically ignored disease.

Through intimate interviews with patients, families, healthcare providers, and researchers, the film illuminates the daily reality of living with this chronic illness while championing the resilience of the human spirit.

While being honest about the harsh reality of recovery rates, "What Doesn't Kill You" has a special focus on the stories of progress that give hope to millions fighting for their lives without adequate recognition or resources.

https://whatdoesntkillyou.movie/

Teaser:


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Every story lights the way. Open eyes and move hearts by completing your 6-question virtual interview today. We will produce a short video telling your story and may invite you to participate in our documentary (coming 2025).

https://mecfsstories.com/

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[Text above copied from associated websites]
 
Looking at the website and the trailer, it doesn't look as though the film is going to end with the wife of one of the filmmakers getting a phone call from a helpful Norwegian person and suddenly realising that she doesn't have to be confined to her dark room. i.e. it looks realistic and legit and made with completely good intent.
 
Hutan said:
Looking at the website and the trailer, it doesn't look as though the film is going to end with the wife of one of the filmmakers getting a phone call from a helpful Norwegian person and suddenly realising that she doesn't have to be confined to her dark room. i.e. it looks realistic and legit and made with completely good intent.
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I agree. From the trailer, it looks like a talented film-maker as well. This quote hit me like a train:
She said "Write down everything I say." Yeah, I should be writing down everything you say. Because you put so much effort into these words.

"My own personal goal for today is to not use my arms."

"Shoot me. If you leave me alive like this, you hate me."

Edit: fixed typo
 
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The film maker’s other work can be seen here and here. I didn’t look at much (too much movement) but the little I saw looked very competent and professional

This quote is a little concerning
Bagel Run Media said:
”This is the right time for a documentary on ME/CFS to change people’s outlook on autoimmune disorders.
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Let’s hope they focus mostly on people’s experience of ME rather than more or less speculative hypotheses
 
forestglip said:
Open eyes and move hearts by completing your 6-question virtual interview today. We will produce a short video telling your story and may invite you to participate in our documentary
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Someone pointed me to TikTok where, believe it or not, I’d never ventured before. Features pwME recounting their personal stories

www.tiktok.com/@what.doesnt.kill.u.mov
 
It sounds like a worthwhile project but I have mixed feelings about the title 'What doesn't kill you', as I assume it's meant to suggest the following 'makes you stronger'. And the wording about ordinary people triumphing over extraordinary difficulty...

I don't feel like I'm triumphing, and I don't feel stronger as a result of being ill for 35 years, and I don't want others feeling like failures if they aren't strong and triumphing. I'm not sure I want my life represented with those words.

Most of the time I'm just muddling along with the usual mix of human emotions and strengths and weaknesses anyone might expect of someone sick. Some misery, some anger, some happy moments, some grumpiness, some calm acceptance, some sadness, some grim endurance, some satisfaction with small achievements, some loneliness, some gratitude, some frustration, some anxiety, some ...

Maybe it's just me. I wish the project well.
 
Trish said:
mixed feelings about the title 'What doesn't kill you', as I assume it's meant to suggest the following 'makes you stronger'. And the wording about ordinary people triumphing over extraordinary difficulty...
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Yes, the title using only the first part of the proverb could be understood as a critique of it, but combined with "people triumphing over extraordinary difficulty" it rather sounds like an endorsement.

That's highly problematic per se. But whatever title and blurb are supposed to actually mean, thinking of people with ME/CFS who died from complications caused by the disease (including starving) or suicide the wording feels like an affront.

Plus:

Ravn said:
This quote is a little concerning
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Ravn said:
Bagel Run Media said:


”This is the right time for a documentary on ME/CFS to change people’s outlook on autoimmune disorders.
Click to expand...

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).
 
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MSEsperanza said:
Yes, the title using only the first part of the proverb could be understood as a critique of it, but combined with "people triumphing over extraordinary difficulty" it rather sounds like an endorsement.
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Oh, the title was one of my favorite parts because I thought it was being said ironically. Like I think that is an amazing title if the implied end is "sometimes only destroys your life little by little, takes everything from you, and maybe then kills you eventually anyway." I imagine it being a counter quote to a person saying "What doesn't kill you makes you stronger" about either the suffering of ME/CFS itself, or about something like the pain of exercising which they think will surely make you feel better afterwards.

With the subtitle of the Substack, I can see they might have actually meant it in the regular way.

Edit: The About page of the Substack says:
There is maybe only one truly reliable prize you win for enduring something difficult: You now know what it’s like to endure something difficult.

This new, specialized knowledge might feel mostly useless unless 1) you plan on enduring that same thing again or 2) you plan on sharing that knowledge with others who may endure that same thing.

What Doesn’t Kill You is a publication intended to document that hard-earned knowledge - and honor those who make it their mission to turn right back around and use the unique insights and empathy they’ve gained to help others.
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So I guess the quote kind of fits the movie if the idea is "What doesn't kill you allows you to share what you've learned to help others".
 
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Hutan said:
Looking at the website and the trailer, it doesn't look as though the film is going to end with the wife of one of the filmmakers getting a phone call from a helpful Norwegian person and suddenly realising that she doesn't have to be confined to her dark room.
Click to expand...
No. That will be Jesus.
 
Ash said:
No. That will be Jesus.
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I saw it more as St Paul the Apostle of the letter writing fame, complete with his conversion on the road to Damascus. Presumable had phones been available then it could have happened via phone instead of requiring a physical journey.
 
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Maybe I’m too picky and cynical, but being both sceptical of biomedical claims that aren’t true and getting kind of hurt when people at my severity aren’t acknowledged (or like this documentary “worst severity we’ve ever seen”, is someone that can make it out to the clinic). I don’t think I’ve ever seen any of the more filmmakery ME/CFS projects and actually wanted to watch them.
 
Yann04 said:
people at my severity aren’t acknowledged (or like this documentary “worst severity we’ve ever seen”, is someone that can make it out to the clinic).
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The description of Becca in the teaser sounds really severe. She was transported from the clinic in a stretcher, and she hasn't left her bed in 644 days after that. She had to have the last tiny light on a CO detector covered to be in total darkness.
 
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