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Jill Brook: 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 novel platform that she and her colleagues have created, using artificial intelligence, specifically to address the needs and to improve care for complex chronic illness patients like our cluster of conditions, i.e. POTS, MCAS, hypermobility, ME/CFS, long COVID, all that stuff. And if you have been struggling to figure out what you have, which tests or treatments might make sense for you, what the research says about your situation, if there is any research, or what your next best move is to try to get more answers or better relief, then that's exactly the kind of thing that this free platform can help with. So I've been using it for about six weeks now, and I'll share my experience with Dr. Curtin. And you may recall that Dr. Jennifer Curtin is the founder and medical director of the RTHM Clinic.

She's a former complex chronic [00:01:00] illness patient herself. She was our guest on episode 263 and we discussed her past as a patient, how that guided her work creating some novel services to serve patients better at her clinic. And I recommend that you listen to that also. But today she is back to discuss their latest and biggest project, the RTHM Intelligence Platform.

Dr. Curtin, thank you so much for being here today.

Dr. Jennifer Curtin: Yeah, of course. Happy to be here. Thank you so much for having me.

Jill Brook: So, I've been using this platform for six weeks now and you know, I'm not new to AI, I'm married to somebody who's so into AI. We use AI for, you know, ChatGPT Pro, probably like 10 times per hour for all kinds of things. And so I, I am used to kind of like the amazing stuff it could do and I wasn't sure if, you know, I would really find that this platform could do anything extra for me, given that I already had access to the Deep Research, to the agent mode, to all that stuff.[00:02:00]

But I gotta say, I think this is genius. I think it's amazing. I think it's a game changer several times over. I wish I had had it 20 years ago, but even now at my later stage of the game in managing my medical care, I have probably had a half dozen times where I was just absolutely blown away at how it either saved me so many hours of time, or it got me some answers that I really needed, or it found something, like it found the needle in the haystack that I had not been able to find myself. Or like it offered to write my doctor a letter at one point based on some of my daily check-ins and then some new test results.

Like it's just been amazing and I, I really think that every complex patient could benefit so much. So I just wanna put that out there, but let's help everyone else just even figure out what this even is. Like, maybe you could just explain the basics of what is the RTHM Intelligence platform.

Dr. Jennifer Curtin: Yeah, sure. No, and I'm so excited and happy you've been using it, and you've been getting benefit from it. [00:03:00] That's, that's what it's all about right there. And you know, so having been in this myself, you know, I, I have a history of I think thankfully in remission from ME/CFS. I had it for nine years active.

I've got POTS, I'm hypermobile, I got the whole shebang. So, you know, really I think, and a lot of our co-founders are. We've all had infection associated, chronic condition, experience lived. And so we really wanted to build like, what's the system we wish existed when we got sick? Because you know, it is this hunt, right?

You're trying to figure out and piece together all these things. And if you're lucky enough to have a specialist who's really up to date in one area, they may not always be up to date in all of the other overlapping areas.

Jill Brook: And they only have so much time they can give you and you have to wait like six months to see them again.

Dr. Jennifer Curtin: Exactly. And then, you know, it's just, you're sitting there and you're like, okay, let me cram all this in. And the poor person's just like, but I need to ask you these critical questions so I can prescribe for you. And it's like, ah. So [00:04:00] yeah, it's, it's, it's just tough, and so, you know, really, I know like, you know, AI, there's a lot of, you know, folks who are very concerned about the, the environmental impact, about the impact on people's jobs and everything like that.

And so it was like, what can we do? Like this technology is amazing, has some good uses, but like what can we do, what's a use that can actually help people right now in their lives and really make people's lives better? And I really think that just healthcare and in these kind of conditions that are, you know, underfunded, understudied, neglected, this is where this can make a huge difference.

I think you know, in terms of the expertise for these conditions is growing, it's great. More and more providers are learning about them and getting better and better at managing them. However, you know, it's still, did you learn about it in your medical training? And a lot of these conditions still aren't taught yet in medical training, or they're still so [00:05:00] new that it's hard to even know what to teach, right. So it's, you still have most of the clinician workforce is kind of learning this on the go or learning it through experience, or maybe they did a little bit of CME. So it's like, how do you get this expertise out there into the hands of the patients so that they can kind of help bring this to their clinician and help guide the visit a little bit and just, hey, here's like an a summary of what we should talk about next. Here's the data behind it. Here's some research papers that are summarized to really just help shortcut that, that diagnostic odyssey that people go through, those like years and years and years of trying and jumping around and this test, that test. You know, I went through that myself. I probably, you know, I, gosh, I don't even know how much money spent on, on testing and then trying probably over 50 treatments in my treatment course and, and you know, still, there's still a lot of that guess and check today because the diseases are to some degree heterogeneous. And so you'll [00:06:00] have something that works beautifully for one person with say long COVID and POTS. Then you've got another person who actually has a bad reaction to the same treatment and they have long COVID and POTS.

So it's like, how do we figure out why person A responded really well to the same treatment that person B reacted badly to? And so that's another piece of this platform is how do we figure out what those factors are that predict who's gonna respond well to something and who's gonna respond not at all or poorly.

And so that's some of the data work we're doing in the background here is trying to figure out what those patterns are. And the more people who use the platform and tell us how they did on certain treatments, the more of that data we can amalgamate from different sources and pull together and then start to try and see if we can predict 'cause that's our ultimate dream.

Jill Brook: Yeah. I'm so happy [00:07:00] that you are doing that because, so, you know, I'm, I'm part of a nonprofit that is involved with a lot of research and my concern is that if we start doing just conventional one-off like randomized control trials for a lot of these treatments, even if they work amazing for 10% of the patients, they're gonna fail because their mean might not look good.

It might not be significantly better than a placebo. And it's like everything in our area is so individualized. Like you said, it might only help 5% of people and it might be a miracle for those people, but if it's, if it's measured in the conventional ways, it's gonna look like a flop. And that could lose us access to things.

And I worry about that. So I'm, I'm really excited that you guys are looking with more nuance into that.

Dr. Jennifer Curtin: Yeah, no, exactly. And you know, you are, you're very much on point there. I know there's a lot of people in this space who are very concerned about exactly that. That just, you know, these [00:08:00] trials, the way they're designed, it's not for a heterogeneous type condition. And so yes, we're gonna see, and we've already seen that, right?

There's in long COVID and various different conditions, there's been a, there have been a lot of trials that have failed on very, like, promising therapies that we know work in a certain subsection of patients. We just don't have a great way yet of figuring out who that subsection is right now.

And there are research projects and setups being done to try and help clarify that. I think that, you know, even if we start doing more adaptive trials and multi-prong trials, things of that nature, I do still think that, and, you know, I, I mean, gosh, I would be so excited and hopeful if, if there was a trial and it just turned out that it just cured everyone, I'd be so happy.

Like, that's amazing. I mean, everyone is like, I hope that happens. That is the goal. I think. I think everyone is secretly just like, oh my God, [00:09:00] please, please let this be the outcome. But if that does not happen, and having been in the ME/CFS world for so long, you know, I've seen this kind of where different things work for different people.

And so essentially what we're doing is kind of anticipating that if this is the case and how the trials have gone so far with things like long COVID, even with POTS, it's like, okay, we're gonna need to be able to figure out what's gonna work for whom on an individualized basis. And we're gonna need to be able to do that more efficiently and more quickly.

And so that's the approach we're taking. And like the trials, those are amazing and they need to happen. Those still do need to happen. And really brilliant people are working on those. And just, you know, hats off and props to them for the incredible work they're doing. And it's like, that data is so key.

But I think also in parallel what we're hoping to do is like, hey, can we, can we gather and amalgamate as much raw data and work backwards? Let's work backwards from what's worked for people, if we can start identifying different patterns [00:10:00] of features and biomarkers and symptoms that may actually predict who's gonna be able to respond to which treatment.

So that's that, you know, that way if we end up with a bunch of trials that it kind of works in maybe 30% of people. How do we predict if you're gonna be in the 30% for treatment A, treatment B, or treatment C? And that's kind of where we're, we're going.

Jill Brook: And that's great. My understanding is that would be sort of like the bigger long-term goal, but the good news is that while patients use this in the short term, they get all kinds of like selfish benefits in the meantime, while they wait for hopefully the groups larger you know, bigger data sets to, to show some other findings.

Dr. Jennifer Curtin: For sure. We wanted there to be something that people could benefit from right now. And so that's where the platform itself, so you go through a HIPAA compliant, encrypted in transit and in storage, and so basically it keeps your, your data secure. We're not selling any data to third parties at all.

And [00:11:00] so, you know, I put my own data in there personally, like our whole team has. So, we, we, we trust it with our own data. And so, you know, the thing is really what you can get out of it is it helps you get all your records into one place. So it can pull electronically your records from usually larger health systems and it can do it automatically.

So if you have some providers who are at kind of smaller private clinics, those records may not automatically pull in. Those you would have to upload. We are looking at building a feature that would, you know, similar to how you fill out a release of information that gets faxed to a doctor's office and then that doctor's office faxes the records back in.

We're working on looking at building a feature like that in as well. So that way the the offices that are not on the HIE exchanges where we can pull records electronically, we could still get them as an e-fax, have that be easier than, you know, you're trying to upload a bunch of files that you've had to download from each of your individual patient portals.

That's, that's still kind of a [00:12:00] pain. So we're working on that. We're also working on, it's something that's been requested is having the ability to add like a caregiver to your login. So someone can help you fill this out or get it all done for you. So let's say a family member, a friend, a caregiver, you know, an advocate can kind of go in on your behalf and help fill this out for you.

So that's another thing we're working on there. And then, you know, the other components of it is that once you kind of get all those records in and you answer a series of questions it feeds into the AI. And this AI has a curated set of, we're probably close to 900 papers on these conditions that we've curated as a team.

So we don't have things like, for instance you know, I was on OpenEvidence and I was asking it what's the, the recommended treatment for ME/CFS right now? And I was surprised it actually told me gradated exercise therapy and CBT. And I, I'm like, that's not correct. And so I was kinda like, ooh, but if you look, [00:13:00] there's a lot of papers that have been published on CBT and GET for ME/CFS even though a lot of those studies are extraordinarily flawed and they used old and outdated definitions of, of basically get more CFS rather than ME. And so they're, they're not applicable and that's not actually even what the CDC recommends.

So it's like, okay, you know, if, if the AI just has access to the papers that are out there, it may not actually spit out the best thing. So you really need curated research and you need specific kind of prompting that's like from people who know, hey, you gotta watch out for this, this, this, this, and this.

So that there's been a lot of kind of engineering on our part to, to make it as good as possible. And the more feedback we get from people, we continually are making updates and adjustment to make it better and better. And we're incorporating a lot of different data sources in. So for instance, outcomes data from, various different like surveys, papers, [00:14:00] our own things from our RTHM Direct service, where people asynchronously access like medications with a remote clinician visit that's optional. They give us, you know, hey, how are you doing, what symptoms are improving? So we can kind of include that too, to just say, all right, you know what, this, this is how many people are improving on this one. And we pool all that data together anonymously, and then people who use the platform can see that data and start to search through it and filter for people who are like them. So let's say you have MCAS and hypermobile Ehlers-Danlos Syndrome, and you have POTS. You could filter for those conditions and you could say, all right, let me look at Ivabradine. Okay. How many people who have those three conditions have benefited, and what side effects did they have? Now, obviously the more filters you add, the, the lower the N becomes. But so that's why having a lot more volume and, and more and more people reporting and, and adding more and more to it helps [00:15:00] everybody.

And so this is something that we're, we're trying to work on. Some folks may have seen that there was an announcement from the Mayo Clinic Accelerate program that they put out on LinkedIn. It was a press release where they were releasing their their fall cohort for the Accelerate program.

And we are a part of that. And so this is another avenue that we're going down to try and improve the data quality and get more data into this platform to benefit everybody. And this is just one of things that we're looking to, to add. It's like, where can we add more data, get this out to the community, get this out to practitioners, you know, so that people can really kind of hone in on what's gonna work for them sooner.

Jill Brook: Fantastic. Yeah. And maybe we should talk a little bit more about like what the features are. If there's patients out there listening, contemplating it, so that they kind of know what to expect. And, and I would say, you know, you had mentioned about your getting your medical records in, I found that process to be very slick and easy.

I was surprised at how easy it was. I had to upload yeah, some of my nichier things, but what I really think [00:16:00] is so amazing about that is, you know, a lot of patients will have like their binder full of medical records and okay, even if you did have to like page by page scan and upload, which hopefully people don't have to do that. Hopefully people already have a lot of electronic records or you have copies and it's real slick and easy to just upload everything. But now with your system, you can just chat with it and say, hey, was I ever tested for X, Y, Z? Or hey, how many times were my white blood cells low versus high?

Or you know, hey, what looks important to you in my history? And I was able to put 30 years of test results in there. And it was great because it found some things that nobody ever mentioned, like results that had been off that I never noticed, my doctor never brought up. And I was like, huh, okay. Time to like think about that again.

But even just like that one feature of having all of your medical records in one place and then like this virtual assistant [00:17:00] to, I mean, do anything you want. I, I had a test result come up that suggested that maybe I should be tested for something, and so I was able to say, well, can you just look through my whole history and tell me, tell me everything that either looks like it would be consistent with this or that it would rule it out and two seconds later, holy moly. Amazing.

Dr. Jennifer Curtin: Yeah, no, that's, it's a great thing to bring up. So, 'cause we usually focus on like the, the outcomes, the roadmap that it gives you. But the chat, you're right, that is the, that is really kind of like, that's where most of the value I've, you're, that people get out of it right now is, is it's essentially like having your own AI that's, that knows your case, that you can talk to at any time and ask it questions and it can dig through, yeah, 30 years of history and bring up all of your abnormal labs. And you're, oh my gosh, yeah, there is this pattern over 30 years that no one really caught onto because you may have seen different doctors or [00:18:00] practitioners throughout that period of time. And it may have been at different labs. It may have been, you know, different things.

So you're right, it's, it's essentially creating like this almost like super brain assistant that's secure, HIPAA compliant, that knows your case, and now you can brainstorm. It can bring up things and surface hypotheses for you. It can talk about what might be going, what are some other treatments, what caveats?

It can also graph your labs. So if you ask it, hey, what have my white blood cells been doing over the past like couple years? It'll look it up. And if it's not called white blood cell, it'll look for other terms and it'll figure it out and then graph it for you and then write an assessment of it. You can brainstorm, hey, what treatments, or, you know what, what should I watch out for if my white blood cell count's kind of low, what should I watch out for if I wanna start low dose rapamycin? Things like that. It can help you draft questions about your case before an [00:19:00] upcoming doctor's visit, so you know what to ask to make the most of the time. Can help you draft even like a disability letter.

So let's say your doc is not super familiar with what post exertional malaise is, and they're having trouble describing it. You can ask it to draft, like, can you write a paragraph about what post exertional malaise is, here's how it impacts me, here's my, you know, my last like, FUNCAP 27 score, et cetera.

And then it can kind of write a paragraph for you that you can share with your doctor. Because, you know, post exertional malaise, it's not really a symptom that a lot of docs are trained on, and so they may have trouble, you know, if you ever look at the disability forms that you have to fill out for different conditions, a lot of them are more designed for kind of musculoskeletal type conditions.

Like they ask you, oh, how long can you stand for? How long can you like, bend your wrist for? Can you lift five pounds, whatever. It's like, well, that's not exactly super relevant to people where their most disabling symptom [00:20:00] is being upright or having post exertional malaise. So you have to be able to describe it in the very tiny little text box that they give you.

So this system can really help with that. I just kind of like, hey, like what is PEM and here's my flavor of it. How can you describe this in this number of words and share it with my doc? And so. There's, you're right, there's the, the chat is really, really powerful and it's just, its uses are endless. It's really kind of the, you know, your imagination is the, is the limiting factor there.

It's just what do you want to have it help you with?

Jill Brook: I, I have found that it has become the first place I go to when I just have some tests prescribed 'cause I first go and say, okay, how do I make sure to get the, the most accurate results? Like, do I need to eat anything special or avoid anything special, or what am I gonna do? Then once I get the results, I come back and I feed it to 'em and say, okay, what was this testing for and what does this mean?

And yeah, especially, you know, I don't know if, if somebody's like me where they always have a million [00:21:00] questions, well, how accurate is that test? You know, what, you know, you can just go on and on and on with this nice, very friendly, very patient expert who will answer all your questions so that I, I think of it as like getting away, getting all of the questions out of the way that the doctor doesn't need to answer.

Like so that there are some questions that really only the doctor can answer, like you know about, about me and maybe you know what I should do, but there's so many other questions I have and especially embarrassing questions are great to get outta the way with this. And yeah, I feel like that is just amazing and having the context of your full medical history. So that was one thing where I had been to testing a little bit against ChatGPT Pro and ChatGPT Deep Research versus the RTHM Intelligence platform. And you know, the ChatGPT Deep Research is quite impressive. It, you know, goes and it basically does like PhD level, PhD thesis level research on every question.

[00:22:00] But it doesn't have your history. So I had a particular experience with it where I had had a test result, and when I showed it to, to the RTHM Intelligence platform I said, okay, I got this test result and I'm wondering could it be because of this, and I had done this and I was like, oh yeah, that makes perfect sense, and so you should probably keep doing, you know, like basically it, it gave me lifestyle ideas on how to, how to handle it. And I felt really good about it. And I went to ChatGPT Pro and I asked the exact same thing. I, you know, I just got this test result and I wonder if it could have, you know, been high because I had done this a few days before and it said, oh no, I wouldn't even listen to that test result.

It's probably not even accurate because they probably didn't do the blood draw correctly. And I said, well, no, I watched 'em. I, I had known what to look for because I had gone to the AI intelligence platform. So I knew that if they did the blood draw too slowly or if they had to stick me three times that it wouldn't [00:23:00] be accurate.

So I'd made sure all that was accurate. I said, no, no, I, I watched and they did it accurately and it still, I could not convince ChatGPT Pro. That the test had been done correctly. It just wanted me to do it again. And I just thought that was so interesting. And I had, I went back to your intelligence platform and said, okay, here's what ChatGPT Pro says.

And your platform said, well, yeah, but we talked about that. And I, we told, you know, you went, you looked for that and you confirmed that they got your blood on the first draw that wasn't, and I, I felt like having the context was so valuable and so important. And I really would've been annoyed had I not had your platform, and where I would've thought, okay, well now I gotta go waste six, six weeks, wait till my next doctor appointment, ask to do the test again, because apparently we are gonna trust this one, you know? And and it was just so, so valuable to have the context there.

Dr. Jennifer Curtin: Oh, that's, that is so awesome to hear. When [00:24:00] you build something and you put it out there, it's like you're always kinda like, okay, I really, really hope this helps people and people are loving it. And then hearing stories like that, it's just like, it's so amazing to hear that okay, you got that kind of benefit. It saved you time, it saved you angst, it saved you frustration. You know, it's like, that's what it's all about right there. So, no, thank you so much for sharing that. I think, you know, it's, there's so many things that the platform really can help with and we're continuously improving it.

We're continuously adding new features and kind of reworking what we're doing and, you know, with the ultimate goal of we would really love for this platform to be able to you know, be kind of like a, like a guide that goes with you through your entire journey. You know, this is a tough enough road to walk and it's just like, can you have something, can we utilize this technology for something that's gonna benefit folks, walk with them through this whole process and then benefit everyone in the community. So that we're not all in these [00:25:00] individual silos. The data is like amalgamated. We understand across everyone what are these patterns that are starting to emerge, so that people don't have to go through so much guess and check.

The diagnostic delays are not multi-year. You know, that's like, how can we reduce human suffering? And I think there's, there's kind of like, just for me, I'm like, that to me is such a, a wonderful use of this powerful tool that is AI, reducing human suffering. You know, it's, I, I think. Definitely just, you know, I, I understand that some folks may be hesitant to use AI 'cause they know how much energy it uses.

But you know, if you think about how many you know, kilograms of of CO2 are generated from just like one in-person doctor's visit. There was an interesting study out of Stanford where they looked at just kind of across all their outpatient and I think that the average was was 20 kgs of CO2. And a lot of it had to do with the driving, but so if this even saves you one doctor's visit, [00:26:00] it's like it's more than making up for the amount of CO2 that's being used to generate the queries.

And so what we're actually kind of hoping is that this will actually not only be like a valuable and really useful use of this tech technology, but one that actually may end up saving energy, not just patient's energy in terms of like, hey, I've got limited energy, I have post exertional malaise, but also, you know, ultimately overall benefiting the planet.

Jill Brook: I thought about that too, and I actually did the calculations in terms of flights because during my time, you know, I had a 17 year diagnostic delay and then three more years to get something that worked. And during that time I had eight flights to the Mayo Clinic, some from Alaska, some from other places.

And so I learned that for that I could use this system, I think it was like, it was, it was hours a day for the rest of my life and it would be less than one of those flights. So that kind of put my mind at ease [00:27:00] about, about the, the energy usage.

Dr. Jennifer Curtin: Definitely. And I think we started calculating out too, just I had no idea how much energy a hot shower eats up, in terms of just like the energy to heat the water. It's, it's actually quite a bit. And then plus you add the water usage on top of that. And so it's even like, you know, even just like one or two less hot showers per year is kind of like covering, you know, like the query costs and stuff. So it's sort of like, okay. And a lot of our folks, you know, people with POTS and dysautonomia don't tolerate super hot showers anyway. They're already taking kind of lukewarm showers. And then folks with PEM, you're like, Hey, I can't shower. That's, that's gonna eat up all my spoons.

Jill Brook: Well and like some of us, especially I think with Mast Cell Activation Syndrome, we move looking for places where we feel better. I know I moved six times 'cause of heat intolerance. Yes, I wasted a lot of energy moving and then flying, but it was out of desperation.

Dr. Jennifer Curtin: Yeah, no, it's, it's [00:28:00] amazing. Like, we just don't think of all of the, the components of being part of a healthcare system. The, the flying, the moving, the also, let's say, you know, you have getting like medications delivered to you, right? Like someone's driving that or shipping that to your door or whatnot.

So it's like, it's, there's carbon in that component. There's so many parts of the chain that it's almost hard to calculate out all of the components. And it's like, ultimately, I think just if folks are able to shorten diagnostic odysseys, if they're able to, you know, have less healthcare utilization overall and feel better, then it's like, I, I see that it's just a win-win situation all around for, you know, just like human beings, society, the planet, everything.

Jill Brook: Yeah. Do you wanna talk about a couple more things that the, that the system does for patients? Like, it makes that roadmap and it has that daily check-in and just so the people kind of know what to expect if they use it.

Dr. Jennifer Curtin: [00:29:00] Yeah. So, okay, so I'll talk, so the roadmap, so that's really like when you first come into the platform for the first time what it's gonna do is it's going to have you either sync or upload medical records, ask you some questions about what your existing diagnoses are, symptoms that you have. It'll have you rate the effectiveness of different treatments.

If you've got like a treatment list in a PDF, you can upload that and it'll pull the names out of all the treatments. If all you can do is screenshot in your patient portal, your medication list, that it'll also use. And so all it's doing there is it's, it's basically getting your information, kind of getting a sense of what your case is, and then it asks you a set of, it goes through a few analysis steps and asks you some strategic questions, and then it generates something we call the health roadmap.

So it'll have kind of like a one paragraph, it's about a third of a page, summary of your case, at least what you've given to it. And obviously the more information you provide to it, the better it gets. And then it'll go through and it'll suggest some treatments to you that you can [00:30:00] investigate.

And it breaks them down by prescription, non-prescription over the counter, and then lifestyle and diet. Those are separate categories. And then it also then will suggest things like various different workups or labs. So it may include things like orthostatic vitals if you've never had that done, but you've got some symptoms consistent with like POTS or orthostatic hypotension. It may suggest a tilt table or it may suggest, let's say you've never had your you've never been checked for like EBV antibody levels. Like, oh, is that reactivated, et cetera. And then that entire roadmap gets saved to your case.

You can always access it. You can also download it as a PDF, and you can share it with, let's say a caregiver, your clinician, whomever you wish. And and then once you have that roadmap you can kind of use that as an interesting like guide.

But then you can go into the chat. You can reference the roadmap and dig deeper into the components. So like, let's say low-dose rapamycin was suggested to you, but [00:31:00] you're like, hey, I wanna learn more about this. You can ask the chat and it'll reference, there's a study for ME/CFS looking at low-dose rapamycin. It'll also look into what are the kind of safety labs that you should have checked before you were to start it?

And how often would you need those rechecked as you're on it? And what are the kind of things you should watch out for? And what questions should you ask your clinician about this drug? And then are there any things, just in my case, given you see all my records, is there anything I should particularly be worried about that I need to specifically ask?

And then it'll kind of dig in and, and give you notes on that. And so the other component there is, let's say you're like, hey, this thing is suggesting, let's say ketotifen for me, but I don't have a prescriber who's willing to write ketotifen or who's familiar with it. We offer ketotifen through RTHM Direct, which is now just merged into the RTHM Intelligence platform.

So if you're in one of the states that we serve, you can even just request through the platform, learn more about ketotifen, and then request [00:32:00] it. Go through a safety assessment, make sure it's a good fit for you, and you can request it. And if it gets approved by our clinicians, we can send it to a pharmacy that ships to your door.

Something else we're adding, so there's a services section. That's where all the, the different RTHM direct medications are that you can request. We're also looking at adding a bunch of different laboratory testing, 'cause we know certain tests are kind of hard to get. Some of them are in the research phase still, but people are very interested in the early results coming out of those.

So we're actually in talks with like several different groups about really interesting emerging testing that we wanna try and bring to more people through the platform. So, right now it's not available yet, but we're working on it. And so if, if there's any testing on the platform that you really, really want basically you can kind of sign up for a wait list. And what that tells us is if there's a bunch of people on the wait list for a particular test, we're gonna prioritize that one first to make sure we get that out first. So, so that kind of feedback's super helpful for us.

And you know, we're also looking at expanding into offering consultations through the [00:33:00] platform potentially as well. We're just working on the logistics, all the behind the scenes stuff on that. Yeah, and then, you know, the the chat we already kind of talked about there's a couple other things that we're looking on adding.

So we do have some questionnaires, like medically related questionnaires, and we're working on adding additional ones that you can fill out over time to kind of track your progress. And right now you can upload wearable data. So let's say you have like an Oura Ring, you can download your data into a file and then you can upload it and it'll kind of analyze the data from the file. But we are looking into actually just directly connecting with the wearables and having it integrate into your clinical history and your timeline so that you can start having your wearable data included in your chat analysis, included in the roadmap, all of that. So that's on the docket.

And you know, if, if anyone's like, hey, you know, we're, we're looking at what are the most common wearables, so we can start with those for the [00:34:00] connection. And then there's the, the daily check-in. So that we're gonna be merging with the chat coming up, but right now they're separate. And so you can, you can journal into this and what it'll do is you can either type or you can speak, there's a microphone button and you can just talk into it.

So let's say you're trying a new medication and you're kinda like, hey, you know what, I am starting this new medication today, this is the dose I'm starting at. Then you wanna track how your symptoms are doing as you start that new medication. You can journal throughout the day, you can journal every day, you can journal every three days, and it adds it to the chat, your roadmap, and it'll add it to it's like, timeline for your case. So what's really cool is let's say you add these journaling notes over time. You can basically then ask the chat, hey, do you think this medication's actually working or not?

Do you think this is just a flare up of my underlying condition? Look at the patterns and it'll start to pick up [00:35:00] patterns from not just your case history, but also those daily check-ins over time. So it becomes a really powerful tool and I can't wait until we get wearables at it. I think that's gonna be really amazing.

But that's another really just cool feature in terms of trying to just figure out what's doing what, or even trying to identify triggers in your daily life. Like for instance, hey, you know, like it's coming into fall, I know I usually flare up in fall, basically here's the weather today.

Like, let's see if there's a, an issue with barometric pressure shifts. You know, things like that. So you can kind of start to just explore and use it for whatever it is you want and get creative with it. And you know, I think, we've had some folks where it was picking up that, hey, because you responded so strongly in a positive way to this medication, A, you're nowhere near the max dose on that medication, you may wanna discuss maybe going up on it with your clinician. But it may also mean that if this is [00:36:00] helping you, perhaps this is the underlying mechanism for what's causing your post exertional malaise. You may wanna look into these labs. So it starts to reason in both directions, which is really cool.

Jill Brook: And the fact that it has infinite time to do that with you. So I have to admit that there was something a little bit like that that happened with me, where based on a daily check-in, it was kind of picking up on something that it felt like was really meaningful and meant that I should, you know, get some of this other testing it.

You know, it, I said, oh yeah, you know, well that thing does run in my family. And then it was like, okay, now you really need to talk to your doctor right now. Can you, you know, contact them this week? Do you want me to write a letter? It was very, very, it was, it was very friendly, but very, very nudging. And I thought, well, first of all, wow, it's only because like we have been interacting so much and I've been doing these daily check-ins that, that even got picked up.

But then I have to admit, I did worry like, okay, I, I will go tell my doctor about this, but [00:37:00] did I just suck all the fun of it out of, for my doctor? Like if I come with it sort of like, it has already put all these pieces together, it already went into my past and it already found some relevant old labs, and it already found out, you know, it, it listed what, what tests ought to be done.

And I, I did kind of worry that, like, that my doctor would think, well, this isn't fun.

Dr. Jennifer Curtin: I think, you know, depending on how busy your doctor is, they might just be like, oh my gosh, I'm glad it caught this, you know? Or hey, like, you know, I've only got 10 minutes to talk to you today if it's like your primary care doctor, like maybe 15 minutes if they're lucky. And they're like, oh yeah, this saves me time. Like I can order this. This just saved me having to, you know, go into like various different, like UpToDate or Medscape or whatnot to, to look this up and relearn it, especially if it's something that's maybe a little bit more rare you know, that they wouldn't just have on the tip of their tongue or, or, you know, in the front of their mind.

But yeah, I think it, like, it [00:38:00] kind of depends on the clinician, right? Either one, it's like, okay, maybe it took a little the fun out of it, but at the same time, you know, if someone hasn't kind of picked it up, it, it's also hard if it came out of a very specific conversation you also have to think of, would that conversation have ever happened with your clinician? Because so much of medicine is timing, what you happen to remember, what you happen to ask about, if the clinician happened to have like, oh, you know, I actually saw like I actually did a little training on this like last week, just randomly. Like so many things have to line up for this. Oh, you know what, this, this symptom came up, but this symptom plus this other symptom, and the family history, like, oh, okay.

But, you know, sometimes there's, there's patients who are like, you know, we'll have talked and like years later they're like, you know what, I know I never told you this, I actually have had this symptom. I just didn't really think it was important because it was so [00:39:00] mild and I just, you know, all my other things were just so much more critical that I focused on those. And I was like, oh, but if, even though that was a mild symptom, it actually kind of changes how I interpret these other two things.

And so I think like, you know, having this sort of, kind of like your own little like chat buddy in your, in your pocket all the time that you can sort of brainstorm with, and that's kind of got infinite memory, so to speak. It can pull back and like, oh, what about this pattern? You know, that's something where computers do a better job at certain things than humans do, just because you know, humans, we definitely have fallible memory. We've got kind of more limited memory. Computers can kinda look back at massive amounts of data more quickly and pull together patterns. And you know, of course AI is not perfect. It can make mistakes, but it's like having it as just like a brainstorming tool to more kind of augment or support your existing thought process or your existing [00:40:00] clinician relationship.

I think it's just like, it's kind of the, it's a great use for this, for this kind of technology. And I think especially in complicated cases that have been going on for many years, it's like having something that can reread and reassess and do like a reassessment periodically, and just look for new patterns that may be emerging. I'm like, oh, man, I, I wish I, I wish I had this too when I first got sick.

Jill Brook: And it's also good to remember that, yeah, so I've had, I've had, you know, an experience where it did seemingly find something really important, but I've also had like, hours and hours of back and forth where I'm like, is this important? It's like, nah. Is this important? Nah. You know, like, so getting all of that stuff out of the way is also really valuable, and it's nice not to waste time with your, you know, your precious few moments with your specialist with that stuff.

Dr. Jennifer Curtin: Yeah, because that time is so precious and, and limited. It's like, yeah, how do you make the most of it. And, you know, I [00:41:00] think, oh, one other feature that I, I forgot to mention is we do have the research corner. And so, basically we're constantly, so like in our clinic we have a a Slack channel where we dump like all the research we're finding on these conditions and we share it with our whole team.

And so we actually, you know, we make sure that we add a lot of the, the updated research as we go to the platform as well. So it'll basically like have, studies that are very recent that have come out related to your conditions. And so it helps you kind of stay up on the research as well. And I know sometimes the papers can be extremely complicated and there are some patients who are, they can, you know, they're, they're like PhD level at this point in their understanding of, of all of this.

But then there's also folks who are like, hey, the last time I took a biology class was like in 12th grade. And it's like, you know, okay, help me break this paper down. And the AI can actually go summarize the paper for you and then in the chat, like tell you how it's relevant or not relevant to your case.

And so [00:42:00] that's something also that it just helps kind of save that time and all that digging and effort and you know, being able to, to really benefit from like, hey, what's, what's the latest research related to what I have? Staying up on that.

Jill Brook: And what I have found is it's not, it's not like it has these borders around just the POTS, MCAS, ME/CFS, long COVID world. Like it does fine also outside of that. So if you, I don't know, I've talked to it about a couple random autoimmune conditions that are not normally in this cluster, and it seems very competent on that too.

So, I mean, it seems like it has like all the normal AI capability to talk about other stuff. It's not like you have to stay within just this little cluster of disorders, right.

Dr. Jennifer Curtin: No, that's true. It does. It has like the, the kind of like baseline functionality that's across everything it's been trained on. And so we have, you know, augmentation for these [00:43:00] sets of conditions, so it'll, you know, maybe be a bit better and more knowledgeable on them, especially also just these conditions tend to have a lot of smaller studies and a lot of studies that maybe weren't the best. Like for instance, the GET studies for ME/CFS. So it's kind of like, all right, how do we make it better at these specific conditions? But it still does, yes, work for a lot of others. And we know, and we're, we're continuously adding more and more research to adjacent conditions. We know autoimmunity shows up a lot. So, you know, have we been adding a bunch about Sjogren's disease?

Yes. Are we adding about like IBS and also you know, various different, there's certain genetic conditions as well that seem to be popping up more frequently in these patient populations. And so it's like adding in that information, expanding out and just painting a wider and wider, with a wider and wider brush.

But yeah, it can be used for other things too. So that's absolutely correct. Yeah. It's, it's not limited to [00:44:00] these conditions, it's just kind of got more meat behind it and is really like for these conditions.

Jill Brook: Cool. Well, is there anything else we should say about this or I should definitely tell people how they can find it. We'll put it in the show notes. We'll put a link.

Dr. Jennifer Curtin: Yeah, so if you just go to rthm.com the link is right there. This platform is free to use. So that's the thing we wanted.

We understand like this is, you know, it's expensive to be sick. And it's like, hey, we understand that there's folks that, you know, don't have access to anything right now. And so we wanted this to, to always have a free tier. Always. And the other thing too, so it is HIPAA complaints, so it's built to like US standards, but if you're okay with it being just like the US grade with the encryption and everything. And right now the data is stored on encrypted US servers. So, but it can be used by anyone in any other country. Like internationally you're able to, [00:45:00] to log in. We have an international option. So if you're abroad, you absolutely can use it.

The, the, there's certain features that won't work. So like you wouldn't be able to order a prescription medication through the platform 'cause we can't prescribe outside of the US. But and then the other thing is we don't have the electronic health records connection, so we wouldn't be able to pull in your records electronically, 'cause like, for instance, if you're in the UK, we we're not connected to like the NHS system. And so that would be the other limitation. But you can still upload your records, ones that you have. So, yeah, so that's kind of, it, it is built for the US but it is it is usable by, by folks abroad as well.

Jill Brook: Yeah, so I guess just to be clear, so like if there's a patient out there who is having difficulty in their part of, you know, the world or the country, getting access to any answers, any tests, any treatments, any care, they can go on this platform, they can answer the surveys, they can update their records, [00:46:00] they can get the roadmap that it suggests, they can interact with the chat, and then if they want to, they can either even access other services that we didn't talk about so much today. We talked about it more in episode 263. But your, your clinic offers some interesting programs that helps people get easier access to medications for this cluster of illnesses.

And you, you can also get telemedicine consults, right? And in order to get the medications, you don't necessarily have to do telemedicine consults. You have a whole program for some of those. And so for people who are kind of like in the healthcare deserts, I see this as being amazing in combination with some of the other stuff that you're, you're offering.

Dr. Jennifer Curtin: Yeah. We can only prescribe right now through the platform to states where we're licensed. And so I think we've expanded, I have to look at the list, I think we just added another state, so we might be at like 14 states now, but we are constantly adding. So [00:47:00] if you don't see your state on the list, please message us in the platform.

Give it either through the feedback or a support ticket. Please let us know what state you're in and that you want us to add it. Because that's also how similar to like, if we get a bunch of requests from a state that we're not in, that helps us prioritize that state to add. And so that's just something like, let us know if it's like, hey, it's not my state, but I really want it.

Let us know. And we're constantly adding states. So that's the other thing too. If you wanna sign up for the newsletter, we usually announce when we've added an additional state so that way you can keep up and like, hey, oh, now it's available in my area. Great. And in the interim, let's say it's not available, the prescribing isn't available in your state, you could also have the chat, try to write up for you, write a letter or an explanation to your clinician about why this medication might be worth investigating, link to some research, how it might be dosed off-label for what you have. And that way you could take it as like a one page summary. And your doc may or may not read it, but at [00:48:00] least it's like a conversation starter and something they could maybe scan through and maybe that would help you after, you know, kind of, if the doc gets comfortable with it or does a little more digging on their own, maybe that could help you get the kind of care through the providers you already have locally to you. You know, can't guarantee that, but at least, you know, maybe it could help.

Jill Brook: Amazing. Well, Dr. Curtin, thank you so much. I can't imagine how much work and time and effort went into this. Kudos to your whole team. But this really does feel like the future of medicine. It feels like we got this big gift. We got this big boost in our little corner that, it's funny, I feel like we're usually the corner of medicine that doesn't get much.

We live on crumbs, but you brought us like this nice big piece of pie.

Dr. Jennifer Curtin: Hey, but sometimes it's the folks who've been live it on the crumbs who are the most motivated to like, no, no, we're gonna get a triple layer cake. Okay. Like it's our turn. It is our [00:49:00] turn.

Jill Brook: Oh my gosh. I, I actually, I hate it when I feel this way, but like, like, we're so lucky that you were in this community. And so I'm so sorry that you had to have ME/CFS, but wow, is it lucky for this community now that you've created this and brought this to us. So thank you for making all your suffering mean so much to other people.

This is really, truly incredible. Like I said, I think it's brilliant. I've been blown away numerous times. I'm sure I would've had like a, you know, a one year diagnostic delay if I'd had this instead of a 17 year diagnostic delay without it. And you know, I think there's gonna be so many people in the future who have nice, short, sweet diagnostic delays and they'll even not even know what it's like to have a long one.

But it's all 'cause of this platform. And there'll be, you know, like so much suffering that they didn't even know that they could have gone through.

Dr. Jennifer Curtin: Yeah. No, that's so true that. I mean, that's the dream, right? Is that hopefully in the future, it's just the [00:50:00] standard is that it only takes you three to six months to get diagnosed rather than seven, eight years, 17 years for your case, right? Like, I just hope that, yeah, that no one ever knows what that feels like ever again.

Jill Brook: Well, gosh. Okay. Well just thank you for spending so much time with us. Thank you for explaining this. Thank you for making it free. Thanks to your team. And just all the best. We'll be excited to see where it goes.

Dr. Jennifer Curtin: Alright. Thank you so much and take care. Have a wonderful week.

Jill Brook: Thank you. Okay, listeners, that's all for today. We'll be back again soon, but until then, thank you for listening, remember you're not alone, and please join us again soon.