Jill Brook: [00:00:00] Hello, fellow POTS patients, and marvelous people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are interviewing Dr. Jennifer Curtin about the innovative offerings and approach to medical care at her RTHM Clinic and Services, and its associated programs for patients with POTS, MCAS, ME/CFS, long COVID and other complex chronic conditions. Dr. Curtin is the co-founder and chief Medical Officer of RTHM, spelled RTHM. She is a physician and expert in infection associated illnesses like POTS and Myalgic Encephalomyelitis and others. She is a member of the ME CFS Clinician Coalition and co-authored the official clinical guidelines for ME CFS. She understands the urgent need for access to care and treatment for millions of complex patients, and I think you're gonna see that reflected in her approach and exciting new offerings. Dr. Curtin, thank you so much for being here today.
Dr. Jen Curtin: Thanks [00:01:00] so much for having me.
Jill Brook: So maybe you could start by just telling us a little bit about your background and what made you decide to work in this space with complex patients instead of doing something that was probably easier.
Dr. Jen Curtin: Yeah, no. So I mean, I am, I, I am a complex patient myself, so there's nothing quite like the personal experience of living through it yourself, going through that odyssey. Part of the reason I actually went to medical school in the first place was to figure out what was wrong with me. You know, and also family members were affected as well.
And, you know, we were getting kind of some answers but not the full picture. And so actually as I went through training, I essentially was going through both as a learning to be a provider, but also I was getting a workup at the same time. So I was a patient as well. It was a really interesting experience actually, and fascinating to kind of go through both sides at the same time.
And, you know, I had been so frustrated with the medical system up to that point that I was honestly [00:02:00] kinda worried about going through training and like, how am I gonna keep my mouth shut? You know? And um, really what I learned though was that, you know, through the, the training. These are just conditions you don't learn about in the training.
Jill Brook: So you just kept waiting for your condition to come up and it never did.
Dr. Jen Curtin: Yeah. Or it was like a footnote, you know, you got like one sentence, you know, or something and you're just like, oh, that does not explain the complexity of everything that goes into this. So, you know, there's just, it's, there's so much you have to learn, uh, in medicine and it just continues to grow every single year.
There's just more and more we learn, and so there's just so much to pack into what already seems like a long time. But really with all that you have to learn, that it's like certain conditions only get very small amounts of time or they're not mentioned at all. And so sometimes you only learn about maybe the real extreme versions of something and you don't realize that, oh wait, this could present in a much more mild form and you're just not sure what that looks like.
And [00:03:00] so, you know, I really just going through it, I was like, oh, this is why some of these things just don't get picked up 'cause people just aren't familiar with them. They don't know what they look like. Um, and so coming out of that, I knew going in that I wanted to work with complex patients. And um, so, you know, coming out of my training, that's what I did.
And, um, I've been working with the ME CFS and then POTS, MCAS, uh, and then long COVID patients ever since I finished my training. So, you know. I, I had ME CFS for nine years. I went into remission in 2019 and thankfully I haven't had a relapse on that, but you know, I've continued to learn. I do have POTS as well.
I'm hypermobile, I don't quite meet the HEDS criteria. I'm like one minor criteria short. So, but I do have a lot of the symptoms. Um, and so, you know, living in that, seeing it and then realizing. I always kind of find this funny. We have like a running joke with my friends that every time I'm in a group, it doesn't matter [00:04:00] how small, it could be three people, it could be 10, it could be 20, it could be, you know, even two
sometimes. There is always someone who either has one of these conditions and doesn't know it or knows someone or is very closely related to someone who does, because every time I'm in a conversation I'm like, you know, you may wanna look this up and check this out, and, and they're like, oh my gosh, this sounds like me.
Or this sounds like so and so, and they're going, oh, I'm totally gonna write this down. You know? And it's just like, it's amazing that it's so much more common, I think, than we really realize. And so I, I really do think, and especially with COVID triggering a lot of these conditions and, and so many more people very quickly.
Um, you know, now it's just, it's everywhere. And that was actually one of the big reasons, um, I co-founded RTHM was when COVID hit, it was like, oh, a lot of these conditions get triggered after infections and um, what are we gonna do? There's already not enough people [00:05:00] who know and are willing to treat these folks.
How do we get that care out to more people 'cause we're gonna need it? And, you know, long COVID turned out to be pretty prevalent. And obviously, you know, COVID most infectious disease known to man has spread all, all over the world. So, there's a huge need more so than ever.
Jill Brook: Yeah, and when I was kind of reading your website and all the different things that you offer. I was so excited that, that I could tell you were looking at it from the perspective of the patient who needs help and, and can't wait two years for the wait list to get into the specialist. Um, so let's talk about some of those things that you offer.
I know you have some more traditional services and then you have some really innovative services, and I think you've got the RTHM Clinic, the RTHM Intelligence and RTHM Direct. We wanna hear about all of them. Where do we start?
Dr. Jen Curtin: Yeah. So I think, um, let's start with the clinic. So the clinic that was what we started with initially, and that continues to go. That's sort of our, our [00:06:00] core. It is, it's our highest cost offering. We know that's out of reach for some folks. And it's, we basically, it's a telehealth clinic. Uh, we see patients in multiple different states across the United States.
And, um, essentially what we do is we do a deep dive into the person's case. Um, and so we meet with patients oftentimes monthly. And then as they're kind of getting more stable, we may meet with them less frequently. And really it's just that, that costs a lot in terms of the provider time and the staff time and everything.
So it's a more expensive offering. And what we're really trying to do, we wanted to start with the clinic and then learn from that and how do we scale that kind of care using technology to make it more accessible to more people at a lower price point. That's ultimately the goal, is how do we get this kind of care out to more people?
We started with the clinic. That's where we're getting a lot of the, the learnings. We're working with people. We're kind of [00:07:00] refining what do we need, what are all the components? And then we have our tech team look at, okay, how can we scale this? How can we build this out cheaper? What's a way we can make this work for more folks?
And so that kind of spawned into RTHM Direct. RTHM Direct is a much lower cost offering for specific medications, many of which are used for POTS, some for orthostatic hypotension. Uh, we have some options for Mast Cell Activation and also for, um. ME CFS and, and post exertional malaise. So things like pyridostigmine, there's ivabradine, there's low-dose propranolol, got LDN, ketotifen, there's several others.
Oxaloacetate. It's really just like you get a discount on oxaloacetate. Uh, we give you $150 off a bottle 'cause it's such an expensive treatment. And so essentially what that does is allows people to go in asynchronously. And this is really geared towards more of the folks who don't have as many of the comorbidities.
They're not the ones who aren't [00:08:00] super sensitive, just tiny doses of medications. Folks who aren't on like, uh, you know, a list of medications or don't have an allergy list that's as long as your arm. You know, it's. It's kind of for the folks who are maybe in the, the milder to moderate range. It's how can we help those folks, uh, in a way that scales? And, um, so that you fill out an asynchronous questionnaire that we worked with, uh, a neurologist who probably a lot of you guys are aware of.
She's phenomenal. Dr. Ruhoy, and um, also a clinical pharmacist to design all the flows to make sure we ask all the right questions, we're getting at all the right contraindications and getting all the data we need. Um, so if any of you guys have ever gone through any of the other types of asynchronous flows for something like some people do that to get GLP-1 medications for weight loss.
Some people do it for things like to help with hair loss or to help with erectile dysfunction. Our flows are gonna be a bit more detailed. We ask for vital signs. We have people [00:09:00] do like a mini orthostatics, things like that. So, they're a little more in depth than kind of your standard async. And then you have the option of doing a short visit, video visit with the provider, um, to go over the, the medication that you're interested in, et cetera.
And that's included in the price. And then what happens is you get enough medication sent to the pharmacy of your choice, or we have a partner compounding pharmacy for the, the meds that are compounded like ketotifen and LDN and, um, and basically what happens is you fill it out. If you're safe, approved, it gets approved, sent to the pharmacy.
You can meet with the clinician to discuss if you wish. If you don't want to, you're, you're fine with it. You don't have to. And, um, and then you pay for the rest of the prescription at the pharmacy, and we give a special coupon for a discounted rate to buy it. We don't make money on the prescriptions, and we don't have any incentive financially for the physicians or the, uh, NPs
to approve [00:10:00] meds. Their reimbursement is not linked in any way to medication approvals. We, we really wanted it that way. And so, you know, yeah. And we've seen some people who are like telling us that like, Hey, I'm able to work because of this medication, or I'm greatly improved on ivabradine, and like, thank you so much for giving me access to this.
I couldn't get it anywhere else.
Jill Brook: I think there's so many patients out there who are super knowledgeable because they do the homework and they know what these medications are, but their local primary care provider doesn't necessarily know about them. And it's a two year wait to get into a lot of the specialists. And so like just to get like low dose naltrexone sometimes people have to work so hard to try to like find access to that. And it sounds like, so you're making it possible, if I can just make sure I understand, like you see the Hims or the Hers advertisements on I think on like some of the TV shows where like you can just fill out a form [00:11:00] online and then it tells you if you're a good candidate for that drug or not.
It sounds like a little bit similar to that.
Dr. Jen Curtin: The form doesn't automatically tell you. Every single one is reviewed by a clinician. So a clinician is always making the final decision and reviewing your case, and then you have the option for a video visit if you would like. And so that's a little bit of a di a difference, but I would say yes.
It's like kind of similar to the Hims, like if you wanted to compare it to something. Yep.
Jill Brook: No, I think that sounds amazing for all the people who don't have access to those things. Um, and can I ask, on this podcast, we have discussed a whole lot of the medications with the LDN, all the normal POTS medications, the normal MCAS medications, but you had mentioned one, I think it was oxaloacetate.
What is that?
Dr. Jen Curtin: Yeah, so that one's actually interesting. It's considered a medical food and oxaloacetate is actually a component. It's a metabolite actually, and it's part of the Krebs cycle. So [00:12:00] it's kind of the last step in the Krebs cycle before the metabolites get converted back into citrate and start the Krebs cycle is also called the TCA or the citric acid cycle because it starts with citric acid and then it gets converted into a bunch of things and then it makes intermediates that go to your mitochondria electron transport chain to generate ATP, which is the fuel for all of your reactions and, and energy for
just everything you do to, to live. And so this particular medical food, it's got two studies behind it in terms of, um, ME CFS and also long COVID. One was an open label study. So open label studies, essentially it's just whoever's recruited through, I think they used like Facebook or something and, um,
they had people try it for a certain amount of time and just like take questionnaires on their symptoms. So some people may drop out, some, you know, it's not a perfect type of study. But, um, they found that, uh, [00:13:00] it was helping a significant for, uh, fraction of ME CFS and long COVID patients with fatigue, uh, energy and PEM.
And so then a formal kind of controlled study was done at the Bateman Horn Center. Uh, and that was published more recently. And, um, that one was actually like placebo controlled and they did a bunch of testing. Some of that data I think is still coming out. But, um, they did a lot of, uh, they drew a lot of blood for things like really intense deep dive metabolic studies to see what is this doing, how is it working?
Is it working by boosting the the TCA cycle or is it doing something else entirely? But regardless, it was showing that there were improvements again, in, in fatigue, both cognitive and physical. And um, it helped people with energy. And so that one is geared a little bit more towards the kind of post exertional malaise, fatigue, cognitive fatigue
crew. [00:14:00] And they did see some dose responsiveness, which usually is actually a good sign, meaning they had people taper up a little bit. Like if, if a certain dose wasn't working, you kind of went up higher. And if it's kind of like, hey, at this dose I'm getting this amount of benefit, say like, you know, 15% improvement, then you go up higher and you're like, oh, now I'm at 20% or 25%.
So that kind of thing is sometimes good 'cause it means, it may mean, that there's a little bit more of like the, the effect you're seeing is real. And so there was also a subset of people in the controlled study where um, they were kind of like super responders. They had a very significant improvement in these symptoms.
Now the problem is, is that, um, oxaloacetate is very expensive. It's, it's very expensive. It's like 499 bucks for a bottle, which is I think 90 capsules. So, uh, depending on your dose that may last you 45 days. That may last you a little less if you're taking a higher [00:15:00] dose. So, um, one of the things we wanted to do was there aren't a lot of contraindications
for oxaloacetate, but what we did was we have a discount coupon, so when you're a practice you can get discount coupons. And so we're, we're giving people like $150 off per bottle for that, just to kinda like, it's still not that affordable, but it's better than paying the full price. So it's a really interesting one.
We've seen it work in some people. It's, it's, you know, I've had patients who've responded dramatically to it almost like bedbound to, Hey, I'm hiking. Yeah, it's, it's incredible. And now there's some folks who are like, I don't feel anything. And so it's sort of a, okay, are you gonna be a responder or not?
It's a lot of money to spend on something to try. But, um, we have seen some fairly dramatic effects in certain folks. So, one of the things we are trying to learn and to try and predict is who is gonna [00:16:00] be a responder. You know, how do you predict ahead of time who's gonna be that super responder to oxaloacetate so that you don't have everyone spending that much money just to try it and then find out, uh, I'm not a responder.
Jill Brook: Right.
Dr. Jen Curtin: So, and that, that kind of segues into some of what we're doing with RTHM Intelligence is, um, RTHM Intelligence is essentially an AI platform. And what it's doing is it allows you to connect your medical records. Uh, you can upload records that you have already. It links into certain systems.
What it does is it pulls in the records that it can grab. Our, our record system in the States is very fragmented, as I'm sure everyone here is aware. Getting your entire medical record in one place is very hard. And so it, it does its best to do that. And then what it does is it uses a, uh, HIPAA compliant API endpoint, so it's encrypted in transit, it's secure, and it uses these zero retention endpoints.
So [00:17:00] any data that goes into the, the AI model is not used to train that model. So it's not, and it's deleted. So, but what it does is our system allows it to be saved so that you can have a conversation with your records. The AI can look at your records and dig through and say, okay, you know what, it looks like you may want to consider X, Y, or Z.
Here's how to look that up. Here's who to find. Here's what you can do to, here's some lab tests that may help delineate whether or not this is a component of what may be going on for you. Um, here's some treatments that are used for this condition. And it'll start to collect data across folks and say, okay, how have you responded to these treatments if you've had the opportunity to try them?
So we collect that information and we're piling it together to say, okay, let's see if we can start to predict what's working for whom, and then we can give it to people and just say, Hey, these people who are similar [00:18:00] to you responded really well to these treatments. These are things you may wanna discuss with your provider, and here's some stuff you can print out
or email to your provider, there's a share feature, and um, you can share it with your provider and use it to guide a conversation with like your primary care doc who may or may not really know about these conditions or feel comfortable with the medications. And maybe this can help them kind of feel a little bit more comfortable or give them the material to read or something of that nature.
Jill Brook: Wow, that's so fantastic. It's funny because I'm married to someone who is so excited about AI. He's, he's actually teaching people how to better use AI right now. He's, he's so into the latest, greatest thing all the time. He thinks it's gonna save the world, it's gonna solve every problem, and I'm always like the pessimist, but I'm saying, but nobody's using it like that right now.
It's not, it's not making those connections yet, but you actually are. You're using it the way that it can be used. So it's paying attention to what's [00:19:00] helping people and so that it can learn from that.
Dr. Jen Curtin: Yeah, that's, yes, exactly. So I mean, our, one of our biggest goals, so as a provider, treating patients for, you know, as long as I have coming up on, I think like eight years now. And I talked to other colleagues who've been treating patients in this complex category for, you know, 20 plus years. And I said, do you ever, have you ever developed an intuition about what is gonna work for a particular person?
And the answer by and large is no. Like we can't really get a sense of that. And sometimes in medicine you can, but it seems like not in this area. And so you still have to try all these different treatments and you gotta, you know, taper up, start low, go slow and try one. And then if that's not
working. It takes a long time.
And you know, that's, that's ends up being months to years of someone's life. Not to mention you're paying for all those medications, right. So it's like it [00:20:00] gets expensive and time consuming. And as a provider too, there's actually so many things we can try that one of the things that kind of keeps us up at night is like, did I just not try that one thing,
that may have been the thing for this person? What if I missed that? What if I, you know, so for me, I'm going, and, you know, I'm sure folks listening have, some of you guys have histories for 20, 30 years of illness and you've got chart records that go back decades and it's like for a human to go through and read all of that.
And I've read all those charts. I had someone actually send me a suitcase, they mailed me a suitcase full of records. And I, I read all of it, but it, it took a while, but I did it. But I'm a human being. Like, can I remember every single little lab value that this person had going back, you know, 10, 15 years?
And I'm like, no, realistically I can't. I don't think any human can. And [00:21:00] so, but this is where AI and computers can help, is they have a, a different sort of way that memory works, right? So, um, there's context windows, there's all sorts of stuff, but there's also various, this kind of gets technical, but the way that you can store the information so that the AI can reference it quickly there's different ways of doing that that may have benefits in terms of actually showing you how different things cluster.
Um. Something, there's, uh, knowledge graphs are pretty interesting in terms of how you can map out some of these factors and start to look at different relationships between them. It also helps turn the AI process into less of a black box, so you can actually go through and say, okay, well why did the AI recommend this thing?
Why did it suggest this? And you can kind of dig in and see, oh, well it's piecing this and this and this together. That's why, that's where it's coming up with this particular [00:22:00] suggestion. It makes it a little bit more explainable. So that's one of the approaches that we're taking. 'cause medicine, you want everything explainable.
You don't want just something coming outta nowhere and you're like, where did that...
I don't know.
Jill Brook: Is it correct, so you're not just like using like the latest, greatest model, you actually had somebody build you a tool? Is it the
latest, greatest model all by itself able to do this? Or did you have to give it some special instructions or some special programming to make it do what you wanted?
Dr. Jen Curtin: Yeah. We had to give it some special instructions. And so, you know, some of 'em, like we were noticing, like at one point it was, uh, struggling to understand the difference between, let's say POTS and orthostatic hypotension. Um, like it thought you could have both at the same time, even though by definition
the, you know, one, you have a blood pressure drop, one you don't. Um, and so it was like, okay, we'll need to clarify this and, and fix [00:23:00] it. And then also we put in certain reference materials that it can reference in terms of here's some information that you need to reference related to these conditions that will help
make these suggestions better. And additionally too, here's certain things that we don't want you to say. So, for instance, if it's trained on all the information off the internet, it's gonna pick up things like, Hey, use graded exercise therapy for ME CFS patients with you know, with PEM,
and it's like, no, no, it's out there, it's published.
Right? But that's been shown to, to be harmful. And so it's like, okay, no, ignore these things, right? Like, don't put that in for this.
Dr. Jen Curtin: So it's, you know, you kind of have to give it a little bit more guidance, curate things, give it a little more instructions. The prompt is very important, and so there's components of how you, you prompt it to get better responses.
And also just having [00:24:00] that, using the HIPAA compliant endpoints as well is, is important. I know some folks are, are putting their stuff into GPT or Grok or whatnot and um, and that's fine. It's just they may be training their model and your data and if it's got your name on it you know, it's just like, it's your, your medical records.
And some people are like, you know what, I don't care. It's fine. Um, and others are like, uh, you know, I actually don't want that. So, you know, ours is, ours is more geared towards the privacy side, but, I think, you know, I, I just have so much hope for these really complicated conditions that overlap with many other conditions.
You start getting into this very, very, um, challenging web to untangle, and it seems like it's almost beyond the, the capacity of the human brain to figure this out. So it's like, can we utilize these tools to start doing these things, augmenting what the humans can do and [00:25:00] pick up patterns that we just can't see.
And that's what's been so exciting to me as a patient and provider, just going, oh, how cool would this be to have something that can really look at everything in its entirety with kind of almost infinite memory and just say, alright, based on this, and then you can have a conversation with it.
Jill Brook: That is amazing. Even just the time saved in reviewing a medical history, 'cause like you said, I'm sure that a lot of patients when they walk in your office, they've got a lot of stuff buried in there that would make you say, oh, that suggests you should be tested for this or that. But it's gonna take you hours to dig through and find it. And so that's amazing that it can just suck it all in and instantly kind of get the picture of somebody's whole messy medical past.
Dr. Jen Curtin: Yeah, and you know the beautiful thing too is you can ask it like, Hey, can you write me a two page summary of [00:26:00] my medical history? It'll do it, and then you can edit it, right? You can clean it up and make it a little bit better and like, oh, I don't like how this was worded, or, you know what, actually this isn't quite correct.
Let me, let me change that. And then you could bring that with you to any clinician appointments that you have with, with new doctors or whatnot and just say, Hey, here's, here's my summary. And the goal actually for us is to have this eventually work with health systems so that way they can, the docs, you can just share access to your, to yours, um, with your clinician and they can go in directly and just see, oh, here's all the summaries, here's everything, here's what it's suggesting.
And it'll have a version, like a, a presentation form for clinicians that kind of goes along the roads of how they think, so that they can have access to this information too, and use it to help how they manage, manage their patients. Because some of these areas, like there isn't a lot of guidelines.
So like, um, long COVID, right? There's certain guidelines that have been put out by, uh, like Canada just [00:27:00] released some, Austria has some, but it's not super clear. It's not everywhere yet, so people are still kind of fumbling through trying to figure out what to do. And you know, if you're a primary care doc and you're seeing 25 patients a day, how much time do you have to really read into this stuff?
Not a ton. So what people are relying on are certain things, like they may be looking stuff up on Medscape or WebMD or UpToDate or something like that. And it's like, can we give them a, a better way of finding this information where it's backed by data, but not just studies, 'cause again, long COVID, you don't have that many randomized control trials.
You don't have all the gold standard stuff, but there's still a lot you can do. ME CFS, similar, right? So it's not that there's nothing. It's just that it may not be the highest level of evidence supporting it, but it can still help. So it's like how do you get all that there and then collect the real world data of what's really helping all these people [00:28:00] and show that to the provider and say, look, this is helping very similar person to this person in front of you.
This may be something you wanna consider. If you've got five options and you don't know which one to pick, maybe this one would be worth considering. Something like that.
Jill Brook: That sounds amazing. And I can also see where when somebody has such a complex medical history, there's little pieces of it that need to come out at strategic times. Like just as an example, I'm struggling a little bit right now because I need to get a breast cancer detection test, but I have MCAS.
My, my worst triggers are from mechanical pressure and vibration, and I've already had really scary reactions to mammograms and ultrasounds. And so trying to explain to my local primary care provider who doesn't even understand that that's a thing, that that is possible. It sounds amazing to be able to just like pick out these [00:29:00] little parts of my, my history and say, Hey, can you write me up a page that just explains what is a physical urticaria and why that might be bad with a mammogram and show it to her?
That just sounds amazing.
Dr. Jen Curtin: Yeah, and the like, that kind of stuff where you're like, I don't know how to communicate this to somebody. How do I, how do I talk about this? You know, this is something that that person has never experienced. They may not have ever experienced this with any of their other patients, so it's like totally new stuff you're trying to teach someone, and
interestingly, the, uh, the LLMs seemed to do a very good job of explaining and teaching. Like they, they just seem to be good at that. So yeah, that would be a really amazing use for it. The other thing would be, let's say you're going into a surgery. You're trying to explain to the anesthesiologist that, hey, I tend to have reactions to things.
Or let's say you have cranio cervical instability and you're like, I need to be in a collar and you have to use a straight blade when you intubate me, not a curved blade. [00:30:00] And so things like that, like let's put this in and have it just write up something for you. Um, now obviously you'd wanna have, ideally you're a clinician, review it because it's, it is AI, it can make mistakes. It's not perfect.
But we also have ways of people giving feedback, being like, Hey, this part was kind of weird. Like, can you fix this? Or, I'm coming up with this error or whatnot, like, um, and then we are on our team we're actively taking that back and, and improving it. But, um, another area is helping to write things like a draft disability letter or a draft like accommodations letter for school or for your job.
Because again, a lot of primary cares don't entirely know what are the kind of things that are A available and B relevant to someone who has significant orthostatic intolerance. Um, like they may never have written before where hey, you need to have a spot where this person can lay down literally flat or put their legs up for periods of time during the [00:31:00] day.
You know, that just may not be something they've ever written, but it's like, that's something you can request, you know? So it's just like these are kind of things that the system could potentially help with.
Jill Brook: Yeah, it sounds like that the possibilities are just, just endless. And so I apologize 'cause now I've forgotten how that works into your system. Can you say again, so how, how do, how do, how do patients make this happen with your services?
Dr. Jen Curtin: Yeah. So right now the, the RTHM intelligence, which is that AI system, it's in beta. So beta is kind of like an early release phase where it's still got some bugs and quirks. We're still working on features. We're getting feedback from people, and, you know, they're, they're kind of like helping us make it better.
And then we'll be releasing it. Once it's out of beta, we'll be releasing it widely to everyone. But if people want to kind of sign [00:32:00] up for it to, to be notified when it gets released, they can go to our website, uh, which is, uh, so they can just type in RTHM and RTHM Intelligence and it'll pop up, and there's like a wait list that you can sign up for and then you'll just be notified. Or just if you're on our, um, our email list,
um, that's another way we'll, we'll send a notification out when that, when that's ready. But our goal right now, so we've got the three kind of separate things, but ultimately what we plan to do is have everyone go through RTHM Intelligence and that brings in the records. It helps you figure out, so like you can have all those access to all of that stuff.
And then it's like, hey, if some of the medications that are suggested are available in RTHM Direct, then maybe you wanna consider those. Um, and that's an option for you. Take a look at it, you can then flow into RTHM Direct for those medications and see if that works. Um, and if it's like, Hey, you know what,
I [00:33:00] kind of need a deeper dive. I really just wanna have someone dive in with me. And I've tried these medications on RTHM Direct, like, I wanna go into the deeper stuff. Then maybe you go into clinic. So it, the intelligence will end up being kind of like the, come in. You may only ever use intelligence, that's it.
Or you may want to use that as sort of the, uh, kind of the, the inlet to direct or to clinic.
Jill Brook: That's so phenomenal. That's really exciting. And it's amazing to me that somebody who at least previously had ME CFS, got through med school and is the one being ambitious enough to put this together. That's a testament to I guess, your energy being back. Um, but speaking of people who are a little bit more complex and who might need the, um, RTHM Clinic, I noticed that your clinic had mentioned all these different complex issues that it can deal with.
And one of them is micro clotting and I was [00:34:00] wondering if I could ask you about that because more and more POTS patients are learning that they might have some micro clotting going on, whether or not they got their POTS from COVID. And I'm just wondering what are, are you like, where do you see the micro clotting use?
Is it usually only in the COVID patients or what do you, what do you find with that?
Dr. Jen Curtin: So we've been, um, seeing that we see it more so heavily in the COVID patients, but we have seen it in some of the ME CFS who have not had COVID. So we've seen it in them as well, but it's, I would say, less of them than the COVID patients. Now the other thing too is that what we kind of wonder is that it may be time related.
So the thing I wonder is, you know, if you have an ME CFS patient who's had ME CFS for let's say 20 years, and they got it after getting Epstein-Barr virus in college. Did they have micro clots really [00:35:00] high immediately after Epstein-Barr and it's just now we're 20 years out, so things have changed over time and we may not be seeing them.
So that's one thing we're kind of wondering. And it seems too that possibly that's may also be something that's going on with long COVID, is that over time the, the pathology predominance may shift so that, um, we kind of notice that if you catch people earlier, um, there's a little bit more of a chance to kind of reverse some of that and, and see the dramatic clinical improvements. People who've been further out,
some of them still do have a lot of micro clots and so in that sense we're like, oh yes, this is something to address. And we don't just look at micro clots. It's still a research based test, so you can't really treat just based on that. We look at other markers and we do tend to find other markers that are off in these patients as well.
Thrombin-antithrombin complex. Sometimes we'll see prothrombin fragment elevated. [00:36:00] There's, uh, certain other things that may be kind of off. We look at von Willebrand factor antigen. We look at, uh, ADAMTS13 activity, and we'll look at the, the ratios. And so we look at, we do like a very intense coagulation and cotting workup and we're looking at a lot of stuff that came out of research papers and things and, um,
some of it from international sources. So like there's certain studies out from like Japan and, and uh, South Africa and things. And um, really what we've seen is that there's a certain percentage of kind of super responders when you treat around the coagulation. Um, and so that's definitely like an important thing to have in your toolkit.
But it seems like the further someone is out from their acute insult, um, perhaps it doesn't work as well.
Jill Brook: Okay. We're proud that our nonprofit is funding some research right now by, um, Dr. Resia Pretorius and Douglas [00:37:00] Kell's team. And we're hoping that, that tells us some interesting things. But this is such a fascinating area, and, and this is twice now that you've mentioned another thing I meant to ask you about is, do you have any ideas about why it seems like there's super responders and non-super responders and it's so random. And like how can, how, how, are people so different in this space with what they respond to?
Like is there any sort of like medical, I mean, maybe it's just genetics or microbiome or, I don't know. Do you have any thoughts about why, why it's so inconsistent what helps people?
Dr. Jen Curtin: Yeah, I think it really comes down to there's, there's multiple reasons, obviously you've suggested several of them. And, uh, but each person comes into, let's say you have like an insult, like COVID or Epstein Barr virus or a surgery, an injury. And that sets off a process, but you're coming into that event
with your [00:38:00] genetics, with the environment you've been exposed to up till that point with any underlying conditions you may have had but didn't realize you had. Um, oftentimes when we do a really in-depth history, we kind of find that people had certain subtle signs of MCAS even before, but they were just minimally symptomatic from it.
And then they get into this point where they have this insult, like an infection or injury or something, and suddenly, boom, everything blows up. And now you're extremely symptomatic in multiple ways. It's like only through really detailed history if you really know what you're looking for, well you realize, oh, they probably had some of this beforehand.
Um, and so, you know, some of it too is things like, what does your immune system do? Immune deficiency is something that's really fascinating to me. I ended up having one and it's like I had symptoms back from when I was a baby and really looking back at my history was like, oh, that was there the whole time.
What does that predispose [00:39:00] you to? It was like that explains so many of the infections. It also explains a decent amount of the predisposition to autoimmunity. People think if you're immune deficient, how could you have autoimmune disease? It's like, actually there are two sides of the same coin. My immunologist was explaining this to me and he's like, you know, because the two sides, the sides of the immune system balance each other.
So if one side is kind of not working, it doesn't balance the other side. And so that side just keeps going and going and going. So like common variable immune deficiency, about 25% of those people also have autoimmune disease and um, frequently they get diagnosed with the autoimmune disease before the immune deficiency.
Jill Brook: Wow.
Dr. Jen Curtin: It's a fascinating thing where you're kind of like, oh, what could this actually be telling us about what may have been going on this whole time that predisposed you, that just is something people didn't know about or think about. But in terms of something like, let's say Epstein Barr or [00:40:00] COVID or whatnot,
aside from what are the genetic factors? What did your microbiome look like? Were you exposed to various toxins, including like mycotoxins, things like that, that may be influencing how your immune system responds to threats. You go into it and it's like, okay, now let's say you have a virus that is persisting in certain pockets of your body.
Those pockets might be different in each person. So let's say in some, in one person, it's hiding out in their GI tract. That's gonna maybe cause a very different symptom profile as well as maybe different kind of response to treatments as someone who it's hanging out in their bone marrow or it's hanging out in their oropharynx.
Like it's, it's in kids they found that there was residual in the tonsils. Or recent study, the bone marrow in the skull, shedding spike protein into the brain. Like things like that. So it could, that could be another component is that [00:41:00] it's in different places and different medications reach different parts of the body based on things like their solubility, their, you know, tissue specificity, what they bind to, et cetera.
And so it may work for one person and not another. The other thing is that, again, as you mentioned, microbiome, um, how, what was your microbiome going into the insult and then how did it shift afterwards? And the microbiome, there's still so much we don't understand about the interactions between not just the microbiome and the rest of the body, but
they're producing metabolites and even neurotransmitters for us. There's also the innervation, so the, the vagus nerve coming into the gut. And so there's the, the gut brain axis. There's so many components going on there and there's a lot of immune tissue around the gut as well. So how is it that, um, and there was even this very interesting study out of, I believe Italy, where they were looking at does [00:42:00] SARS-CoV-2 even infect bacteria?
Can it actually persist in certain gut microbes?
Jill Brook: Wow.
Dr. Jen Curtin: That's like a whole nother angle there. So it's like multiple different things in terms of where did this pathogen go? Where is it still? Or even if it's not making replicating virus, is it making viral proteins? Did the RNA just hang out and it's able to persist in a certain stable RNA form, and that RNA is getting transcribed, is getting turned into proteins that cause problems.
It's causing your immune system to go in and be like, Hey, something's still here. I need to get rid of this. And so the immune system may be flaring up. The other thing too is epigenetics, I suspect are gonna play a big role in this too, where it's like, okay, you have epigenetic things coming into the insult, and then post insult, there's certain changes that happen.
And the epigenetics can be very different depending on the cell type, the tissue type, they can change [00:43:00] over time as well, depending on what you're exposed to or treated with. So, you know, if, let's say the epigenetic response that you had was something where it caused an immune suppressive effect. Then it's like, okay, are you suddenly now more susceptible to infections since you, since all your symptoms really blew up?
And it's like, huh, okay. What is causing that? Was it direct damage? Is it that your immune system is exhausted, meaning it's responding to all these viral proteins that are still hanging out and the, the immune cells just eventually kind of crap out. That could be one component. The other is maybe there's actually something where the immune cells themselves might be affected and epigenetically there's been changes perhaps that cause them to not work as well.
If you think about from a virus's standpoint, it wants to kind of hang out with you as long as it can and spread as much of its progeny as it can. And so what would be of benefit to the virus, right? It would be I need to suppress [00:44:00] their immune system a bit here so that I can hang out longer and I can spread more and it won't get rid of me.
So it's sort of like. Is, is that actually playing a role there? With COVID in particular and some others too, but COVID really seems to have this pretty nasty component to it where it goes for, um, certain types of, of neural tissue. It goes for the lining of the blood vessels. And it can literally infect endothelial cells, which is pretty scary when you think about it.
It's like oof, like the lining of your blood vessels. That is a really important part of biology. You don't wanna mess with that. And if it can do that, it can trigger things like coagulation cascades and it can cause all kinds of issues with we, you know, like cardiovascular disease and stuff, like if you have any kind of damage to the blood vessels that you know, your body will try and heal it,
but you can also end up putting in plaque, building up plaque [00:45:00] there. So are we gonna start to see these kind of longer term things that usually occur as we age more. So are we gonna see this happening younger and younger in people? And so this is another thing that there's a lot of interesting research being done in these areas, but I know I'm kind of veering off topic pretty hard core here...
Jill Brook: This is amazing because, well, first of all, 'cause I, I love it that it's like you're acknowledging that there's way more than a human could ever know, and that's why you're bringing in artificial intelligence to help. But I also wish, like a lot, I wish other physicians had to listen to you because I feel like this could also be called like a whole bunch of things
you should consider before you, before you tell someone that they have just anxiety, right? Like that so many these things could explain your symptoms even if they seem weird or unusual. And I bet, I bet you hardly ever tell anybody that you think their stuff is just anxiety because you are so open to all of the things out there that can be going [00:46:00] on, and I just, oh, I so appreciate that about you.
Dr. Jen Curtin: Oh yeah. I mean, and it's just, you know, and anxiety can be very real too. Like that's, and you know, not to knock on that at all, but it's just like, okay, manage symptoms, but also like, let's look at what might be driving it. And there's certain things like, uh, definitely, I mean, for sure, POTS symptoms, right,
your autonomic nervous system, your, your fight or flight system is not quite working, right. So, both of those are the fight or flight system. Your symptoms are gonna look so similar to anxiety. We need to really train clinicians to think, oh, is it just anxiety or is it like, is it dysautonomia?
Is it MCAS? There's Mast Cells in your brain and the lining around your brain. If those things are going off, what is that doing? So it's, there's a lot there. And, you know, we kind of tend to think of like, oh, there's psychological anxiety and things, and then there's like, you know, [00:47:00] that, that's just up in your head is like detached from your body somehow.
No, our bodies are all connected. Everything influences everything else. So it's just like, how do we dig a bit deeper there? And, um, you know, I, I do think it's, it's unfortunate when people just get lumped into the anxiety bin with when like no further workup has been done. It's just, you know, because oftentimes it's like, man, there's, there's a lot you could do here,
you know? And I do think that just really comes down to training, just getting that into the training more. And unfortunately if you, uh, you know, I think Dysautonomia International puts something out saying, I think there's only something like 56, uh, autonomic neurologists in the United States.
Something around that. I don't know if I, I may be off on that, but it was just shocking that it's so few. Um, and it's like, man, you know, no wonder we don't do well with dysautonomia in medicine in general. It's just so few people [00:48:00] are, are trained in it. A lot of it isn't taught in, you know, your, your training programs and, and so you don't really think of, that's not what comes to mind when someone presents with certain symptoms.
It's like, you know, we think of it in, in catastrophic cases, like someone is really, really, really terrible diabetes. And their blood pressure's all over, it's like, ooh, that may have hit their autonomic system. But we don't really think of it outside of those kind of contexts that we were taught about it.
So, you know, it's really just, if you haven't seen it, it's just unfamiliar territory. And so I really think one of the biggest things is, is medical education. And unfortunately we're not really in that area, but I, there are some people who are, and it's like they're doing such important work and I'm just so grateful to them for doing it,
'cause that's where it starts.
Jill Brook: Well, I love that you are using technology to scale the number of people that you can help.
And I [00:49:00] don't know, maybe you can franchise this at some point because if just we, you know, we don't have very many people like you, and so if the people who are like you can, can help more people, that will, that'll be fine too. I mean, you're just
doing amazing cool things just on the medical front and on the, the tech front and thank you. Is there any kind of like final words you have for people? Um, and oh, also, um, where can people find you online?
Dr. Jen Curtin: You can follow RTHM on on social media. So we're on Instagram and, uh, and um, x and also um, on Blue Sky as well. And, um, and then obviously like check out our, our website and, um, obvious they can email us too.
So
[email protected]. If you've got questions or comments or just like you're interested or you can't find something that I talked about today, um, just email us and, and we'll help you find what you're looking for. Um, so yeah, I mean, honestly, I just, [00:50:00] I'm so excited with the technology changes and I know there's a lot of scary things about AI and what it may do that's negative for the world, and it's like, Hey, let's do some stuff that's positive.
Let's go out there and let's, let's put the positive in and make sure that that is being done and being represented, 'cause it really does have some potential to, to really help the, the folks like us. We're, we're complicated. It's tough. It's sort of, you know, you can, the human brain is amazing, but it even has limits, right?
So what can we do to really start to crack the, the underlying cause, some of these conditions? Can AI actually help bring up what may be things that we should be researching? Can it put together connections, if it has enough data, that we may never have thought of. And I think I'm just so excited about that because this is kind of a new era of, of technology and how it's gonna influence medicine.
And the thing is just let's do it in a positive way.
Jill Brook: [00:51:00] Awesome. Well, thank you for your time today. Thank you for taking the lead on this and we hope you'll check back in with us occasionally and let us know how things are going and what you are learning and 'cause I know AI progresses fast.
Dr. Jen Curtin: Very fast.
Jill Brook: We may be shocked how quickly there's something new. So
Dr. Curtin, you're amazing. Thank you for coming today. We'll be back soon with another episode everybody, but until then, thank you for listening. Remember, you're not alone, and please join us again soon.
