Following is a transcript of the section on mold avoidance from the film “Unrest,” directed by ME/CFS patient Jennifer Brea.
It runs from about 57:00 to 1:04:00 in the film.
(Jen is shown going through supplement and drug bottles.)
Jen: When medicine has no answers for you, where do you turn?
(People are shown talking about curing chronic fatigue or chronic fatigue syndrome by eating a “high-carb vegan diet” or “whole foods”; addressing their “acid-alkaline balance”; or taking dietary supplements. Jen is shown making kombucha and drinking “mysterious green stuff.” Patients are shown talking about the Lightning Process, tapping, or taking magnesium. Jen is shown injecting herself in the stomach with a syringe and eating bone marrow. Jen discusses fecal transplants and is depicted pursuing “self-administered hookworm therapy.” She then is shown spraying gas from a can of Reddi-wip into her mouth, with Omar explaining, “The goal is to basically stun the worms so that they drop out of your gut.”)
Woman #1 (via Skype): A few months ago, I started avoiding really small amounts of toxic mold, and since then, my exercise intolerance has disappeared.
Woman #2 (via Skype): I’m trying to avoid mold at all costs.
Julie Rehmeyer (via Skype): There is quite a bit of evidence of the toxicity of mold.
(Jen is shown searching for information on her computer while in bed.)
Jen: I started hearing from more and more people who were seeing huge improvements by leaving their homes and going to drier climates.
(An Airstream is shown being pulled into the Moab, Utah, area.)
(Omar and Jen are shown lying in the Airstream.)
Omar: Will strategically reducing my mold exposure make me a better lover?
Jen: Are you okay with this?
Omar (shaking head): I’m okay with this.
Jen: This is you letting off a little steam.
Omar: There’s no way to approach this except as crazy. But just because it’s crazy doesn’t mean it’s wrong. But there’s no doubt that it’s crazy.
Jen: I know.
(Jen is shown energetically walking through the brush in the Moab area.)
Jen: I’m walking!
Jen: On the path!
Jen (smiling): Just cause it’s….
Omar: Easy trigger. You’ve got to come up that. Don’t- Don’t-
(Jen stands on the edge of a cliff and stretches out her arms, smiling broadly. She and Omar kiss.)
(The back of Jen and Omar’s house in New Jersey is shown.)
Written Descriptor: “A Week Later.”
(Jen is shown standing inside the house, hunched over, moving very slowly.)
Omar: What can I do?
Jen (whispering): Outside.
(Omar helps Jen walk down slowly the hall, toward the outdoors.)
(Jen and Omar are shown sitting on their deck.)
Omar: Feeling better?
Jen: A little. I know this seems really hard, and I mean it is, but just think of the gift that we live here, and that there’s space.
Omar: How is that a gift if it makes you sick? You know, it doesn’t just touch your clothes, it doesn’t just touch the car. It doesn’t just touch the house. It doesn’t just touch, like, where we live. Like it potentially touches every aspect of our lives. And that’s scary to me.
Jen: If you could have the signals that I have, for like, an hour, I feel like you would – like everything would change.
Omar: Right. And conversely, if you lived with the total absence of these signals, you would feel insane.
Jen: I know, I know.
Omar: Every time you are making some great adjustment in your life for something that is…
Jen: You can’t see or touch or taste or experience, totally invisible.
(Omar is shown carrying a box to the lawn and beginning to set up a tent.)
(Jen is shown showering outdoors, pouring water on her head. A sheet screens the area for privacy.)
(Jen and Omar are shown standing next to the tent.)
Jen: Definitely do not go inside. Or get too close. Honestly.
Omar: You see….That’s an impossible request to not get too close to it.
Jen: I’m saying, you can be wearing mold-free clothes when you’re around the tent.
Omar: Why don’t I take off all my clothes?
Jen: Yeah, do that!
Omar: So there’s a hook – there’s a hook here.
Jen: I’m trying to be serious, love.
Omar: And I’m being serious. There’s no way for me to not touch the tent and assemble the tent.
Jen: I think what I’m trying to say is that being in mold-free clothes is probably better for interacting with our home. Would you mind changing?
Omar: Into what? These were mold free. You sniffed these. These were mold free.
Jen: Yeah, but you went inside the house!
Omar: I – I – I –
Jen: Like- Like- Like- I don’t want you to change into mold-free clothes. I wanted you to change to clothes you can wear in the house.
Omar: I cannot change clothes every time I walk in and out of the house! That is- That is- That is-
Jen (gesturing at tent): In our house – or my new house at least – you have to be very careful. Otherwise you’ll have to buy a new tent and do it all over again, which is kind of silly.
Omar: What do you want me to do right now?
Jen: I think you should probably shower and put on new clothes.
Omar: Okay. Well, um, you’re on your own for now.
(Omar starts to walk away.)
Jen: I really don’t make the rules.
Omar: I- I- I- I- You have to appreciate, it feels insane. Like, I changed my clothes an hour ago, now I’m changing them again. And it’s like – it’s a little maddening. I’ll just avoid you like I’m the plague.
(Omar is shown walking across the lawn to to the house.)
(The tent is shown totally set up with the rainfly on.)
(Jen is shown lying in the tent.)
(Jen shown sitting on a stool, writing on a huge whiteboard with a marker.)
Jen: I used to think that if I looked hard enough, I would find a cure. And I have found things that have helped. The antivirals, mold avoidance, even some of the supplements. But I’m not going to figure this out on my own.
(Dr. Nancy Klimas is shown talking about the role of mitochondrial dysfunction in the disease.)
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