Transcript of the video that prompted this
Open Letter to the Open Medicine Foundation:
"I'm a severe ME/CFS patient. Um, and I wanted to make this video to the OMF about trying to get across the severity of the situation of the environmental component and why I really feel like we need. Um, despite the great work, you're already doing, you guys to step up and really strongly look into this environmental component.
Uh, and let me try and tell my story, you know, succinctly. Um. I got Lyme while also living in a moldy house, which I didn't know at the time. It was moldy. In 2016 I sort of gradually deteriorated until I ended up being bedridden. In that time, I got the diagnoses of ME/CFS from Susan Levine, um, pots, um, MCA S and eventually.
I started having these new symptoms and I got diagnosed with CCI, which as you guys know, um, means my brain STEM is being compressed because my ligaments, her legs, I have no hereditary connective tissue disorder. I've never had head trauma. And so my strong feeling is that the mold, which I think is short hand for environmental.
You know, bad stuff that we notice we're affected by is what caused this. Um, and I was experiencing episodes of like total paralysis, being unable to speak, um, or move in my house in Vermont. Um, and my sister took me across the country in the back of a van horizontal because of the CCI, because it could not have had handled train travel and did months of just like camping, which is kind of insane to do when you're this severe, but we didn't have the money for an RV or to just indefinitely stay in hotels and Airbnbs.
And the improvements are slow. I don't think it's going to heal my CCI, but at home I was, you know, raising my heart rate to like insane levels, just crawling to the bathroom and back in death Valley. Um, two or three weeks ago, I walked the length of a football field and back without my heart rate.
Breaking 100 and now I'm here and I'm near Taos, New Mexico. Questa and what I just said might sound like, you know, a total success story, but you know, this lifestyle is, it's insane. I don't think we can keep it up. And yet it's one of the only things that has helped us. So that's why we desperately, desperately need researchers to look into the environmental aspect of like the location's effect on our health.
And my story is not uncommon. And the connection to CCI shows that this is not a zero sum thing. This is, um. You know, they might be really deeply intertwined. Um, there's studies that show mycotoxins and mast cell activation can degrade collagen. Um, so I'm just, I'm not sure if we can keep doing this lifestyle, even though it's the only thing that has helped me with our financial resources.
It's, it's totally cold here. Um. We had bad luck in this. Um, Airbnb actually isn't good. It's moldy. Um, and there are just so many things about this lifestyle that are really difficult. I caught some kind of bug. Um, and, uh, that makes things harder. So I've dipped down a little since the improvement I talked about.
Um, so in short, I think that. Unless someone looks into the whatever environmental aspect to this disease there is. Um, and like the epidemiology, including like the cluster outbreaks and how they were geographically contained within certain areas. Until someone does that, I think people are going to die.
They're going to not be able to do this lifestyle. I wouldn't consider myself lucky because we don't have the financial resources for like an RV or something, but I'm still luckier than a lot of people in that I had a caregiver willing to drive me across the country. Um. So please look into this, or people will die.
That's basically my message and that sounds aggressive, but, um, you know, I'm out here shivering and Taos, and I'd rather just, you know. Have a cure for this component of the illness. Um, even though it's beautiful, as you can see, um, this isn't about sight seeing. It's about survival. And, uh, thank you very much."
