Lindsay Crane and Winslow Murdoch may have never met if it wasn’t for their unexpected bond over a debilitating illness. Lindsay’s Lyme disease was a long-term progression from childhood, causing her symptoms to arise during her college years and worsen after being bitten during her work at Martha’s Vineyard. Winslow’s case developed much quicker and aggressively after being bitten twice on a 2013 rock climbing trip, leaving him with neurological symptoms such as memory loss and exhaustion. It wasn’t until they both ended up in the same doctor’s office that they realized they shared the same diagnosis. But it was a handwritten note delivered by a caring nurse that sparked their 7-year filmmaking partnership and led to the creation of “The Quiet Epidemic.”
Okay, Lindsay and Winslow, thank you so much for coming on today on Lyme 360. I just finished watching the movie and I was in tears last night because as you know, it’s just so emotional what we’ve all gone through, and I’m not even a crier and I was just… I’m actually just actually in a really bad place personally, just with my Lyme and feeling like crap and just exhausted and tired of it all. So watching… Is it Julia, the girl, the teenager? Is that her name? It was just really moving, so thank you for doing that movie. I know it was a long time in the making, so thank you for coming on. It was excellent. And it’s coming out what, December 1st for the masses, but there are screenings around, so if you go on your website, they’re there, right?Lindsay:
Okay. So as far as I… Let’s start with how you guys met. I love the letter. I have a copy of the letter that you guys sent me, so maybe you could talk about how this came about and the letter.Lindsay:
Yeah. So in 2015, my health completely collapsed. It was years leading up to that moment of confusion and in denial, I would say. I think on some level I knew it was Lyme. My mom was telling me it was Lyme, but I just didn’t want to. I didn’t know where to start or how to go down that path. And so eventually I was dragged down it kicking and screaming. Wound up at this Lyme specialist’s office in upstate New York. I had had to move back home with my mom. I was sleeping on her couch. Left my whole world behind, was like, “Wow, now what? What do I do?” And at the first appointment with a Lyme specialist, the nurse practitioner, she said, “Do you have a purpose? How are you going to get through this? We find that patients who have a purpose tend to have better outcomes.” And I’d been thinking about making a documentary for years at that point, but I couldn’t find anyone to do it with me. No one would touch it.Mimi:
About Lyme or about what, anything?Lindsay:
Oh, because your mom.Lindsay:
Because of my mom, right. That’s what’s so funny. I’m like, “Oh, I wanted to make it because of my mom,” but I was completely in denial of the fact that I myself was going downhill and had Lyme the entire time that she was sick. So eventually it became a film because of my mom and because of me and just wanting to understand what was going on and why. But yeah, no one… At that time I was 26 and so all of my peers, they weren’t sick and they didn’t want to look into a disease, not as closely as making a documentary would ask you to. No one wanted to touch it.
So when the nurse asked that question, I was like, “Okay, it felt like the only thing to do. It was like, it must be done. It’s time. I’ve been cornered by this thing. It’s got to happen.” So I told her, I said, “I’m going to make a documentary about Lyme.” And it seemed really farfetched, but on some level I just knew it was going to happen because it had to. And she looked very excited and she said, “Wow, we have another patient here who’s your age and he has Lyme and he’s a documentary filmmaker. Do you want me to connect the two of you?” And she pulled out her little pad of paper and I could hardly hold a pen at the time.Mimi:
Lindsay, were you already in the entertainment industry about film or was this totally out of left field?Lindsay:
I was working in narrative filmmaking at that time. So I was working with actors and scripts and I worked with cameras as a videographer and a photographer, but I’d never made a documentary. But Lyme disease just begged for a documentary. It was so obvious. So yeah, I’m glad that she connected the dots and thought to connect Winslow and I because she handed him the note the next day at his doctor’s appointment.Mimi:
Oh my gosh, that’s good that it was so close. And then Winslow, you got the note and you were like, “Okay, let me call Lindsay.”Winslow:
I was like, “Here we go. I guess why not?” I think she said in her note, “Let’s make a documentary,” not “Do you want to?” And it just happened from there. So yeah, I remember I sent her an email and then we jumped on the phone. And I think for us getting Lyme is just so disorienting. That first sort of run through all of the doctor’s offices. That was one of my last appointments. That was one of Lindsay’s first. But before that I had been through six months of the sort of western medicine carousel of being passed from specialist, to specialist, to specialist, until I ended up at this Lyme doctor’s office.
And I think when I first walked in there, well, I didn’t even know that they treated Lyme. I thought they were like a integrative cancer clinic, but they just spent more time with you. And so my mom was like, “Why don’t see these people who actually sit with you for an hour instead of 15 minutes?” And so that’s how it all began. And at my first appointment they handed me a sheet that said, “Here’s why Lyme disease is so controversial.”Mimi:
Why did they do that? I’ve never had anybody-Winslow:
Yeah. And that was such sort of a twilight zone moment where you’re like, “What is this? What’s happening?” And immediately they wanted me to go on antibiotics and I refused because I didn’t know that Lyme could be that bad, was my first initial impression because I had heard of Lyme disease. I grew up in upstate New York and I thought that there’s no way that this is what’s going on. And finally all the tests came back negative and I’ve been tested for everything else and I figured this is the only option that I’ve been given from all of the people that I’ve seen, so let’s try it. And luckily it was a way out. Obviously a slow journey like it is for all of us, but it was definitely a way out.
And so, I think when we first connected, we realized how disorienting this world was and also how hard it was to consistently explain to people why we were doing what we were doing treatment-wise and why we had a disease that was so controversial and how we ended up in this world. And so our initial goal was can this be a tool that people can show to their loved ones, to their doctors, to whoever it is in their life that can say, “Hey, this is what I’m going through. Watch this and you’ll understand why it’s so hard.” And so that was the impetus. And when Lindsay wrote me that note, I mean, I don’t remember next steps of formalizing anything. I just remember all of a sudden we were sleeping on couches and dragging bags across the country and-Mimi:
My thing is… Okay, so where were you at this point? Lindsay, you were in the beginning, so you obviously felt like crap, right, because you were in the beginning of the process?Lindsay:
It was awful. We were both very sick.Mimi:
Were you, at the end, did you feel better?Lindsay:
I mean, I can’t imagine to do a movie not feeling well.Winslow:
Yeah, wouldn’t recommend it. No, I still felt terrible, but I was towards the end of my treatment at that specific clinic. It took a long while from there with other treatments to feel at a point where I feel much more functional now than I did then, still part of my day-to-day life. But yeah, at that point, both of us. I mean, we were hardly upright.Lindsay:
It was bad.Mimi:
Where do you guys both think you are now in your process, if you were to give yourself a grade?Winslow:
God, it’s so hard to say because my doctor says basically, he’s like, “Lindsay, you don’t remember what it feels like to feel well.”Mimi:
No, you don’t.Lindsay:
So he asks me, I usually say, right now I would say maybe like 70%, 75%. But he is like, “You don’t even remember what it feels like to be well or to have energy.” And it’s true. I think I’ve been running on adrenaline for many, many years, especially through the making of this film, and just driven by the purpose. But yeah, I mean it’s exhausting. But making the film has been really cathartic on many levels and it was an outlet for a lot of the emotions and the frustration and feeling stagnant. We were always in motion, if not physically, at least in terms of the investigation. I mean, we were constantly probing and researching and trying to parse out what the hell is this? What is going on here? And so it was really helpful to have a mission. But physically it’s been very challenging and I don’t know if making the film necessarily has been healthy physically. So, yeah.Mimi:
No, it’s like with this podcast, right? It’s doing it, but it’s just a lot. But it is cathartic a little bit and keeps you connected with what people are going through so you don’t feel completely isolated. So going back to the movie though, how did you find Julia? I know you had interviewed a lot of people and went around the whole world looking for patients. How did you find her and decide she’s the one, and have all that video footage? Did you have video footage on a lot of different patients and then just tune down? I’d love to know that process.Winslow:
Yeah, we did, but Julia was number one. So Julia was blessed by Pope Francis in, what was that, September of 2015, I think.Lindsay:
Summer. It was the summer.Winslow:
The summer, but yeah. So that was when it really went viral. And so she became this media sensation across the tri-state area, and the doctor up in Albany, New York that we were going to ended up seeing that footage and invited Julia and her father to come receive treatment for free because the whole staff was so moved by that interview that she did with the Pope. And at that point, they didn’t really know what was going on. And so they started driving up to Albany from Brooklyn and they had a family place sort of halfway in between. And so Julia and her father were living there alone and getting treatment in Albany, and that’s how we met them.Mimi:
That wasn’t the doctor that was in the movie though, was it?Winslow:
No different doctor, different doctor. But he got them started on that journey. And so yeah, we met them. I think the first thing that we filmed with them was December of 2015. And they ended up at the clinic that we were at. I remember telling Lindsay that the miracle girl is here. And so at that point, they were doing a ton of news, but we wanted them to realize that what we were doing was different, and so we actually shot with them for a couple of days and then I edited something together and I sent it to him and said, “Hey, this is the style of what we’re doing.”
And I think Enrico, to his credit, immediately realized the power of media in general, but also realized that what we were doing was different and more long form and longer term, and he was on board right away. And Julia was too. I think at that point, she was much younger of course, and she was also so sick. So at the beginning footage, I mean she was-Mimi:
Couldn’t walk or breathe.Winslow:
She was really barely hanging on. Yeah, she couldn’t walk. But I mean, even more than that, I think the walking is the obvious symptom, but she has so many, other-Mimi:
No, she seems like she struggled breathing.Winslow:
So many other issues, yeah, yeah. And so she’s come a long way since then, which is incredible. But yeah, anyway, so we realized pretty quickly that their story was going to be incredible. And they’re just an amazing family, and the whole family is incredible and we became so close with them. And every time we’re there, they feed us a massive Italian [inaudible 00:12:07].Mimi:
She’s lucky that she has such a great support system-Winslow:
Because there’s a lot of people that don’t have her father, mom and her siblings.Lindsay:
Exactly. We didn’t choose this for this reason, obviously. I mean, we chose to film with her for all the reasons Winslow just described. But now in hindsight, just like you said, knowing how many people are abandoned by their families, and we actually heard a statistic recently from a woman who runs a Lyme treatment foundation for children that the majority of her grant recipients are abandoned by their fathers. And so it’s really wild and uncanny that we wound up filming with a family where in this particular situation, because of Julia’s mom’s job and her dad’s job, he became the full-time caregiver. And so I think I really hope that as patients and also caregivers and families start to watch The Quiet Epidemic, that there might be an opportunity to reconcile, I hope, for people to acknowledge, “Oh wow, I could have shown up more than I did. I could have shown up differently.” Because Julia and her family-Mimi:
Yeah, yeah the disease exists, exactly. Look, there’s actual [inaudible 00:13:35] are sick.Mimi:
You are sick. You’re not just making it up.Lindsay:
Yeah, the antibiotics actually don’t work. The test isn’t accurate. You’re not faking it, all of it. But yeah, I think that their family is great. And Julia, she’s been at some of our film festival screenings which has been really amazing. And she comes up for Q&As after the screenings, and she’s been sharing recently about that process for herself of deciding whether or not she was going to allow herself to be filmed by us. And ultimately what she decided is what we also decided, and I’m sure you too, and so many people. It’s like, “This has happened to me and it’s awful, and if I can share my story and it can help others, then maybe on some level we can make it worth it if it means sparing others the same fate.” And so for Julia to have gone through that process at age 12 is pretty incredible. And I hope that that inspires more people to also think like, “How can I use my experience to benefit others?”Mimi:
No, it’s true. Because I think when I first got sick, I was like, “Oh, I just want this to go away as quickly as possible. I don’t want to talk about it.” You don’t want to give energy and light to something because then it gives it legs, and I’m like, “I just don’t want to give it more attention than it deserves.” But then when I realized I got better and then I relapsed, and then the second time around, I was like, “Okay, I need to just embrace this and make it something.” I don’t want to say it’s a part of my life and my identity, but share as I’m going along. As I’m learning, I feel like I’m doing so much research that’s just for me. Shouldn’t I be learning and sharing and meeting people along the way? And so it’s kind of the same way with yours.
Okay, so going back to the movie again, I remember when I read… One of the first Lyme books I read was Gone in a Heartbeat. And I was in tears reading that because at that point I was going through the same thing. I was going to the emergency room thinking I was having heart attacks, and everyone was telling me it’s in the head, telling me to go see a psychiatrist. And after I read the book that Dr. Neil Spector wrote, I was like, that was the first time I was ever felt validated of what I was experiencing wasn’t in my head. And that was right when I also started my podcast. So I had reached out to him and he responded right away and he was like, “Hey, I’ll love to be on your podcast. I’m in the hospital right now, not feeling great, but as soon as I get out, I’ll definitely come on your podcast.”
And unfortunately, as we know, he didn’t make it out, and he passed. And I remember getting that email literally a week before he passed, and I’m like, “Oh my God, this guy was so sick that he actually emailed me back saying that he would still be on my podcast.” I’m like, “This guy is unbelievable.” And so when I was watching your movie and he came up and he’s a big part of your movie, I was like, “Oh my gosh.” All the worlds of everything was, when I was watching it, it was just very emotional because I just felt like, “Oh, they lost a giant too in that industry.” So I would love for you to talk about him and where… I know he raised $2 million and stuff like that, but where is he in his three-year goal. Even though he’s passed, is it going to ever happen what he was dreaming of?Lindsay:
So I guess maybe I’ll answer just the first part and just talk about him and then we can talk about his science. But yeah, I mean, Neil was and is such a blessing. It’s amazing to see the way that people outside of the Lyme community even are impacted by his story. I mean, just yesterday here at a screening in Georgia at The SCAD Film Festival, people were coming up after asking that question, “What’s happening with his research?” And “Oh, I was so sad that he passed because I live in North Carolina and I wanted to go meet him, and he’s just so inspiring.” And we had no idea that we were filming the end of his life, obviously, or that we would be preserving his legacy and his spirit. But I’m so glad that we did because the industry and the Lyme community did lose a giant and a hero.
I mean, he was one of the most incredible Lyme advocates because of his credentials. And that’s part of why we really wanted to film with him because how often do you have a Harvard trained physician who works at Duke, who loses his heart to Lyme and is willing to go out on a limb and risk his reputation to say, “I believe these people, I don’t think they’re crazy.” And Winslow and I have met so many people throughout the making of this film, and we know doctors who have treated for Lyme, hundreds of MDs who would never acknowledge that publicly. Those MDs would never publicly acknowledge that they saw a Lyme literate doctor. So that’s why Neil was just so incredible because he didn’t care about his reputation more than he cared about helping others, validating them, researching the illness.
And yeah, I mean, I think about him all the time. He was so excited for this part of the process. He would always joke that he had his suit ready for the red carpet. And yeah, he’s very present. He’s very present. And it’s tough because usually at the end of screenings, the theater says, “Come back with 10 minutes or 15 minutes to spare.” And we walk in and we experience losing him over and over again watching the end of the movie. And on one hand it’s awful. But on the other hand too, I definitely think that Winslow and I, and Julia and you and so many other people are carrying the torch in the wake of his loss and in the wake of the loss of so many people who never had a chance to speak out and help others and spread the word. And so it’s awful, and it’s so sad, and it’s also incredibly motivating. And one of his lines in the film, it’s funny, I’m thinking of it now, he talks about receiving his heart transplant and how that gift of life makes him feel extra pressure to make the most of the time he has. So I think that-Mimi:
Like he knew he was on borrowed time.Lindsay:
You know, you think off when you have a transplant, it’s a different.Lindsay:
Exactly. And so I think that that’s such an important message, not that we need to be sacrificing ourselves or running ourselves into the ground, even though I’m kind of doing that right now it feels. If you have a voice and you’re still alive, I think we need to use it. And I love that message of his.Mimi:
His science… Winslow, do you want to talk about his science?Winslow:
Yeah. Well, I think that one of the reasons that why we chose Neil, as Lindsay suggested, I mean one was his credentials. I think that they just spoke for themselves. We talked a lot about trying to find people that weren’t just victims, but were fighting back in some way. And I think that both Julia and Neil were a model for how to show up in your respective field. So Julia, of course, had the family side of it and also her activism and starting to speak up for other people. Neil was a model of how to be a scientist in my mind. I think that he embodied what science should be, which is compassion and curiosity, and then of course intellectual rigor and the ability to go figure these things out.
And he always talked about what was really going to change this was bringing people in from the outside who didn’t have any baggage attached to all of this controversy, who could look at it in this new way and say, “Hey, this is just what we’re seeing.” I think Neil was as open to chronic Lyme not existing as he was to it existing. He just wanted to help people. And so whatever the answer was that came from his research, that was what he was going to put out in the world. And that that answer was going to be geared towards helping people who were sick. And that was what was so beautiful about his work.
I think he was the real cheerleader of that team. And so his loss was huge because he was the big vision guy. And so I think that was really difficult. But Neil brought on people that were incredible scientists that had more pedigree than he did even, and I think that he knew that he wanted to bring the best people together. And so from a scientific perspective, they’re totally fine. They’re still working on it. They have all the tools that they need, and they have Neil’s spirit pushing them forward. And so there’s definite challenges just from the controversy side and the funding and resources side. There’s now no NIH funding for this type of work, which really needs to change. And then there’s also what Neil always would talk about is how do you get a therapeutic and a diagnostic on the market for a disease that in the eyes of the FDA doesn’t exist?
And so that is going to be a real challenge as well, that they haven’t really gotten there yet. But yeah, the goal is to be done with it by 2025. I think that the last we checked in with them, that’s still on track, but I imagine there’s more hurdles to jump over and whatnot. But it could be really revolutionary if it comes to the fore. And I think even if it isn’t immediately applicable to the patient experience, I think the things that they’re discovering are hugely applicable to also furthering the science in general and helping us ask better questions about what’s actually going on.Mimi:
Yeah. So to talk about the quiet part of The Quiet Epidemic, the untouchable part of the movie where you touched a little bit about why is it quiet, why is this a quiet epidemic? And especially now living through Covid and having long haulers recognized, and everyone talks about that no problem. And so why is it okay for that but not this. And you touch on a little bit because of the vaccine and having that it wasn’t a successful vaccine, and so there’s no way to monetize it. So you did touch on in the movie, but I’d be curious outside the movie, is it just that? Is it because it’s a bioweapon? Is it because there is no disease, and so therefore they don’t want to claim it because then it’s just like you’re running up the insurance company? You wonder what’s really ultimately making it quiet.Winslow:
Yeah. I think just on the Covid front, I would just add that long haulers actually wasn’t accepted at first. So if you look at the way in which this unfolded with Covid, there was a lot of pushback at first that long haul was even something that needed to be recognized. And then I think there was such a mass of people getting it all at once that they were forced to be like, “Okay, clearly something’s going on here.” So I think one of the issues with Lyme is that although we know this is huge, it’s been one patient at a time coming to these doctor’s offices with these symptoms that can look like so many different things. And so that’s why we really touch on in the film also, this is a systemic issue within the medical industry. We have a for-profit healthcare system that doesn’t have time for complexity.
And I think that Neil talked about that all the time. How are you supposed to diagnose something and treat something that’s so complex and affects people in so many different ways in 15 minutes, so you just don’t have the time. And so I think although there are some people who have been part of the problem, and we name those people in the film that have really held back research, it’s really a systemic issue about the way in which we do healthcare in this country. And there’s real questions about our ability to even treat complexity in that way. I think that hopefully long haul Covid in that sense is somewhat transforming our view of medicine in that we’re recognizing that one disease can cause different issues in different people. And so it’s not so cut and dry as one disease, one problem, one cure, which is how medicine has really viewed infectious disease for a really long time.
And so by broadening that scope of what a disease can do, I think that’s going to help chronic illness in general because I think what we’re realizing is that there’s overlap with all of these things. And so we still need a better definition of what’s actually happening with chronic Lyme disease patients. Of course, there is the question of persistence, but then there’s also what’s happening to the immune system. It’s what are the longer lasting effects. And so Covid is having very much that same conversation, and I do think that that’s a huge win for just the chronic illness community in general, that will hopefully start to open some of these things up. But as far as Lyme being controversial, I mean, Lindsay, you can jump into some of that. But it’s a whole host of issues.Lindsay:
I mean, yeah, we could talk for hours about just that. I will say that we discovered a lot of information that we didn’t put into the film, and it personally weighs on me to be carrying that around. There are other journalists and writers and hopefully filmmakers who will dive into those parts of the investigation. But-Mimi:
Is it because you ran out of time or you just don’t want to touch it?Lindsay:
I mean, it is that we had to make a film that was an hour and 40 minutes max, and there’s just so much. And we had to decide what is the general public ready for. We didn’t make the film for the Lyme community. We made it for the Lyme community in the sense that we want to provide validation and we want research and we want everything. We want all of these things.Mimi:
You don’t want to make it too controversial right off the bat.Lindsay:
Exactly. We don’t want to make it too controversial or too complicated that somebody in the general public who might even be a skeptic, who might be a doctor, who might be a scientist, would watch it and be honestly just too triggered. I know that that’s a hot button word right now, but too triggered to even consider any of it. So we had to think very strategically about what we were going to present and how we were going to present it so that we could really start to just penetrate this massive block. Personally, I do wonder about the role of overlapping infections, and I do wonder if these early experts have known all along that it’s been more than just Lyme disease, but it’s not very suitable for products to acknowledge overlapping infections. You want to just isolate something. You want to isolate Borrelia burgdorferi and say, it’s Borrelia burgdorferi, and here’s a test and here’s a vaccine. And there we have it. And I think if we acknowledge the fact that going back to the very beginning, patients were probably infected with multiple tick-borne pathogens, then that would be a very hard problem to not just solve, but in their eyes in this for-profit healthcare model to market as well.
How do you create a treatment for 19 tickborne diseases? How do you create a vaccine? I mean, hopefully there’s a discussion around an anti tick vaccine that would protect against all pathogens, that would be great if it was safe and effective. But it’s just a hard problem. And I do wonder if it’s related to bio warfare personally. With Kris Newby’s research coming out, I do wonder if there are other pathogens that we should be even more concerned by on some levels that just aren’t getting the same attention because Lyme was the… That chosen one of the mix. But yeah, that just wasn’t our story to tell. I think-Mimi:
Too many layers there. And it’s like, do you go down that rabbit hole, right? [inaudible 00:30:19] rabbit hole.Lindsay:
Yeah. It’s a huge rabbit hole.Mimi:
It’s Kris Newby’s rabbit hole.Lindsay:
It’s maddening and it’s terrifying. And I don’t think the general public is ready for that. And Willie left his archives to Kris Newby.Mimi:
I know. Because I interviewed her as well. And she has [inaudible 00:30:39].Lindsay:
Yeah, She did.Mimi:
She’s got a lot of stories and I know she’s going to keep writing and telling that at some point.Lindsay:
Exactly, exactly. And I hope that our film can sort of tee up people to maybe consider more deeper truths or more scary possibilities. I think reckoning with them is really important, though. Reckoning with the reality might mean that we can actually solve it.Mimi:
Yeah, I mean, it won’t be solved until… Those three gentlemen that you talked about that are in the government, are they even still there? They’re still there. They still-Lindsay:
Yeah. I mean, they don’t have the same positions of power as they used to, but they’re still influential. They’re still influential.Mimi:
Yeah. I mean, I assume it’s probably… I found your movie very applicable to what’s going on in the world right now with everything. It’s like, what’s there? Why are they not talking? Why are they not even open to listening? Because I’ve sat in those working Lyme groups online, the working… What do they call it? The working tick group. I don’t even think.Winslow:
Yeah, [inaudible 00:31:49].Mimi:
And literally you’re sitting there and you have all these people that are sick and they’re sitting there being like, “It doesn’t exist.” After two hours I’m like, “Oh my God, this is the guy who’s running The Working Group.” Why would you join a working tick group, like The Working Group, and you’re not even believing that it exists. I’m like, “This is crazy. Crazy town.”Lindsay:
It is. Yeah. I think-Winslow:
They list as a strong… Yeah.Mimi:
Do you think they’re financially… Do they been told not to? Do you think they are financially… I mean, I know we’re totally guessing it unless you know something else. But in general, you wonder is it the government has told them you’re not allowed to say anything, or is it they have a financial interest not to say something. You wonder why.Winslow:
Yeah. Well, I mean, it’s really hard to track down. I mean, there’s all sorts of patents that exist online and that is open to the public to search. And so there’s of course numbers of patents that these people have their names on, and some CDC officials even have their names on, which is definitely a conflict of interest. None of that is illegal. That’s the way I think, and I think that’s something that we point out in the film. This is the way that modern medicine and modern science works, and it’s about money and it’s about a competition for money. And so I think that one of the big things that’s happening right now is that those people that have defined this, that have created such a small definition of what Lyme disease is… And I think it’s important to recognize that they’ve created this small definition that this is not wrong, Lyme disease is this, but it’s also wider than that.
And I think that if you look at the early research, it was wide, and then they got smaller and smaller and smaller. And some of that was understandable when trying to define a disease. But a lot of it, I think happened when they were trying to create the vaccine. And who knows what the process of thinking there was. I think it was mainly that in order to test a vaccine, you have to have a definition for it. And so you have to have a set of symptoms that are very clear so that you can see what the vaccine is, if there’s any side effects, and you also have a test that’s really clear so that you have a standardized test. And that’s how the test became so messed up when they took those bands off of the test for the vaccine. So the film goes into that whole thing, which is a lot, I know.
So you see the ways in which all of that started to become, so this thinking became so siloed around these two things, the test and the vaccine. And then those people are still in power and they receive all the money from the NIH for Lyme disease research. And so if they were to come out and say, “Hey, we were wrong from the start,” or “This was too narrow of a definition,” a lot of that funding would probably go away. And so I think just from a scientific perspective even, in the way in which science works, I mean, there’s so little funding for any of this research that there’s a scramble to be the one getting that money. And so I think that also the war has become so nasty between these two sides that so much of the science has become, how do we prove each other wrong instead of how do we further the research?
And I think that’s why Neil was so incredible because he was saying, “Let’s take a blank slate and just figure out what’s going on.” There’s a lot of science that has come out in top journals where they’re basically, the whole takeaway is, see, chronic Lyme disease doesn’t exist. And what they come back with is actually data that shows that these people are still sick in these various ways. I mean, in their antibiotic trials that they ran to show that chronic Lyme wasn’t a problem and that long-term antibiotic therapy didn’t work, they compared chronic Lyme disease patients to people with congestive heart failure. And yet the response from that wasn’t, “Oh, these people have something comparative to congestive heart failure, let’s see what’s going on.” It was, “Hey look, long-term antibiotics don’t work. The people who use it are quacks.” And so that again, that’s a frame for a scientific question that completely lacks compassion and is just based on trying to emerge from this controversy unscathed without having to admit that you’re wrong.
And so I think that at the very least, you can point to that and say that it’s wrong. Beyond all of the other questions around profit, motive, et cetera, the science itself has been skewed by the nature of the controversy. And so I think the film goes into all of that. But the main thing that we wanted to be the takeaway for the… Because again, this was for the general public. It’s just that this needs to be reassessed with an open mind as to let’s figure out what’s actually happening to patients so we can help people get better.Mimi:
And from that, you want there to be takeaways. So you here to talk about what people can do to… Go to your website, and what are you expecting people to do to help to try to move the needle?Lindsay:
Yeah, so I guess the first thing would be yeah, go to our website, thequietepidemic.com, sign up for our newsletter. That’s going to be most important. Just as important as social media is the newsletter because we can share more information there and more consistently. I think it’s just easier for folks to open an email versus having to scroll through a million posts to try to find the relevant information. We have calls to action already. We’re working with an impact producer and we have an impact team. We are going to be launching a 2023 community screening tour where anyone can host a screening around the world. We already have requests from four continents.Mimi:
From people who haven’t even seen the film. People from outside of the US are so desperate, they haven’t been able to watch the US Film Festival screenings which has been challenging for everyone because we want the film to get out as quickly as possible, but there are steps that we have to take to ensure that it has legs that can carry it for a long time, and throwing it up on YouTube is not the way to do that. But yeah, so-Mimi:
I got mine on Toronto Film Festival. They let you buy it.Lindsay:
I don’t know how I got on this weekend. I Googled it and that’s how I found it.Lindsay:
I bought it.Lindsay:
Oh wait, you bought our film?Mimi:
Yeah, that’s how I saw it. That’s how I was able to watch your film.Lindsay:
The Toronto Film Festival?Mimi:
I think it was Toronto. If not, I’ll tell you which one it was. Twin Cities. Sorry, Twin Cities.Lindsay:
I really thought… Oh, Twin Cities, yeah, yeah, yeah.Mimi:
I knew something with a T. Twin Cities.Lindsay:
Yeah, yeah, yeah. Yeah. So it’s streaming virtually. There are a couple virtual streaming options coming up, but they’re just for little windows of time and then it goes away. But yeah. So we hope that for the film to be on a streaming platform next year, hopefully by the middle of next year, where anyone can watch it. But beyond that, we really want to bring people together to actually be having conversations about this and not just watching the movie by themselves and then feeling sad or angry or confused. We want to help channel people’s energy and reactions to the film. So people who are hosting screenings can also host post-screening panel discussions where they actually create their own event around the screening of the film. They can invite policymakers, their local politicians, they can invite the press, doctors, their child’s teachers, you can host a screening literally anywhere. It doesn’t need to be in an actual theater. So that’s one of the calls to action.
And then the other one right now is a congressional letter writing campaign where with one click, all you have to do is put in your name and your zip code, and then you have the option of adding your personal story. We have a pre-written letter that will target your specific representative and essentially name some of the things that we just discussed during this call. But we’re really calling for Congress to exercise its power and oversee that the federal funding for Lyme disease is actually having measurable benefits for patients. Why is it that all of this federal funding has been going to the same handful of people for almost 50 years who have not improved diagnostics or therapeutics for patients?
Does Congress even know that this is happening? Hopefully the film, we want to bring it to Congress. We want to actually get people to understand this problem. It’s hard to communicate in a 20-minute meeting with a congressional staffer, but a movie has the ability to reach the masses and also have a captive audience for an hour and 40 minutes to hopefully communicate something that haunts them in a way that makes them feel something and care and recognize that this is a problem and that they, as our representatives, should have some responsibility for clean up. We need help. We need-Mimi:
Yep. There are a couple, right? We had that one senator who passed away from… Where was she out of?Lindsay:
Yeah, Kay Hagan. The one congressman from California, I heard his kids have a Lyme. And then the congressman from New Jersey has been-Lindsay:
Right, Chris Smith.Mimi:
Yeah. There are a lot of folks. I think what’s tough is that there are a lot of people who are working… There is hope in the sense that there are a lot of people who care about this. A lot of them are personally impacted, whether they’re scientists or doctors or policy makers, influential people, philanthropists, and then the masses. There is a groundswell of energy and care that’s coming up around this issue because it’s just so huge, but it’s very scattered.Mimi:
And part of our hope in making this movie is that we can really focus this energy whether it’s for a month or even a day, whatever it is, a year, just really focus the energy, bring everybody under one tent and see if we can finally be heard and get people to step up and help solve this.Mimi:
This has been great. Thank you guys so much. Congratulations to an amazing film. I know it’s a lot of work and it’ll be a lot of work rolling it out over the next six months or so. But good luck and congratulations and thank you for everything you guys have done.