MikeO Posted June 23, 2023 Report Share Posted June 23, 2023 well i did get a response from stat. It was honest. We believe STAT should capture orthostatic changes in BP Trend in people with nOH. Preliminary data does show STAT capturing BPT drops in tilt patients who are experiencing hypotensive episodes, as compared to more obtrusive clinical Continuous BP monitors (working on data analysis for a publication now). But I looked through the diagnoses of the participants in the study I'm analyzing now, and nobody had a nOH diagnosis. Based on how our BPT algorithm works, I don't see why STAT would not detect BPT changes in those with nOH, but until we have the data verifying that our BPT algo works on nOH patients, I'm hesitant to make a definitive statement. Totally get it on your desire for the alerting functionality. I initially designed/envisioned STAT being used for this as the primary feature/functionality - my dad has recurrent syncope without a prodrome so he doesn't see the faint coming. This was also what we had some promising data on in our Johns Hopkins / JACC study. However, for a few reasons we are de-prioritizing the real-time syncope alert for later. It's an extremely valuable feature for sure for some people, but with our limited engineering resources and the difficulty of making/getting approval for a reliable real-time alerting system, we are first prioritizing our efforts toward ensuring our Up Score and Flow Score work reliably across people, as well as some of the retrospective analytical tools to help people better understand how lifestyle choices are affecting their metrics. Creating a function for real-time alerting is a lot more of a technical/regulatory challenge that we will get to, but will likely not be ready in STAT's initial release. We may however provide a smartphone "notification" (not "alert" because that's a loaded regulated word) that we could send if we're seeing your BPT is abnormally low at some point in the day that might be useful to know before you stand up, but it may not be responsive enough in our initial low-power bluetooth behavior to be useful in-the-moment during a specific stand event. In addition, in the initial app, you will be able to see BPT trends over the course of the day that might prove useful to helping you understand your BPT patterns over the course of the day to help empower more preemptive planning. Lots more learning to do, but we're on it! There's a lot of people with nOH so we really should specifically seek out getting some nOH people into our next test cohort. Please sign up when we open up our next testing opportunity!! Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 24, 2023 Report Share Posted June 24, 2023 @Sushimore chatter on the STAT facebook page. Daniel Ewok Lee This is helpful; thanks! Customizable smart phone alerts for each data point you are tracking (HR, BPT, and cerebral blood flow trend) would significantly broaden the utility of the device. Some example use cases: for OH patients, a decreasing BPT will be critical information, whereas for a user with hyperadrenergic POTS, being able to get notifications of an increasing BPT will be most helpful. For other POTS patients, getting an alert when HR crosses a user-defined threshold will be invaluable to preventing a syncope episode. Other POTS patients could use the device to help with energy pacing: setting an alert for when HR has been elevated above x for y amount of time. As for the cerebral blood flow trend: this is the data point I'm most excited about, and I can already imagine several applications in my own life. The aspects of POTS and OI that are most life-limiting differs so much from patient to patient--and the lifestyle hacks we've all come up with to learn to live with these conditions are often so idiosyncratic--that I can see this device being most broadly useful insofar as it allows us to customize those notifications. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted June 25, 2023 Report Share Posted June 25, 2023 Quote we are de-prioritizing the real-time syncope alert for later That’s a shame. I think this would have been a selling point for many people. Still, it may get added later. And wouldn’t it be cool if it could “learn” when you are likely to faint as well. Or learn when you need to take a pre-emptive rest because your signs are heading in the wrong direction. I think it would be so handy for people who faint with little or no warning, for people who “freeze” mentally and can’t act or ask for help, and for parents monitoring youngsters or carers monitoring people who have trouble communicating. It is interesting that it was inspired by the person’s father having fainting episodes with no warning. Thanks for the investigatory work, MikeO! Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 25, 2023 Report Share Posted June 25, 2023 @Sarah Teethis is a start up concept. so worth following. i do hope it pans out. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted July 11, 2023 Report Share Posted July 11, 2023 In case anyone is interested, I see that Solve ME is doing a webinar with the CEO of the company that developed the device: https://solvecfs.org/event/the-future-of-symptom-tracking-exploring-stat-healths-revolutionary-in-ear-device-that-measures-blood-flow-to-head/ Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 11, 2023 Report Share Posted July 11, 2023 49 minutes ago, Jyoti said: In case anyone is interested, I see that Solve ME is doing a webinar with the CEO of the company that developed the device: https://solvecfs.org/event/the-future-of-symptom-tracking-exploring-stat-healths-revolutionary-in-ear-device-that-measures-blood-flow-to-head/ Get the word out... Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 12, 2023 Report Share Posted July 12, 2023 Thanks, @Jyoti. I am checking with the organisation to see whether it will be viewable later, for those that can’t make the timeslot. My computer is too old to run Zoom, so I’m hoping it will be published on Vimeo or YouTube as well. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 21, 2023 Report Share Posted September 21, 2023 FYI: Stat is gearing up for pre-orders and beta testers. @everyone Just sent an email for this, but posting here as well. We have selected a date for our pre-order launch! We’ll start taking formal pre-orders on October 19th at 9am Eastern Time. Early adopter specials will only be offered for 30 days, so make sure you reserve between October 19th to November 19th to secure a special offer! However as a STAT VIP, you get a 24-hour head start! On October 18th at 9am Eastern Time, all STAT VIPs will be emailed a special link to claim early bird offers before anyone else. Spots are limited, so don’t forget to take advantage of this window. Note that pre-orders are limited to US customers at this time. In addition, we’re starting to recruit for more prototype testers, as well as “User Advisors” to be more deeply involved in shaping our product development process. Please fill out this Intake Survey if you’d like to be considered as either a prototype tester or a User Advisor! Also, we will be sending out a pricing survey to finalize our pricing model next week. For those wondering how much it’ll cost, look out for that email! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted September 22, 2023 Report Share Posted September 22, 2023 @MikeO, will you apply to be a prototype tester? Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 22, 2023 Report Share Posted September 22, 2023 8 hours ago, Sarah Tee said: @MikeO, will you apply to be a prototype tester? yes i filled out the survey. guess we will see if i get picked. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted September 29, 2023 Report Share Posted September 29, 2023 They just emailed out a pricing survey so we get a chance to see what they are thinking about financially: https://www.stat-health.com/pricing-survey The accompanying email suggests that they have not decided on pricing that they will end up using, but are seeking feedback at this point. I share it here in case anyone wants to comment/vote, and particularly because I think some of us have been waiting for more info on the cost. At very least, this gives us an idea of what they are currently contemplating. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 30, 2023 Report Share Posted September 30, 2023 @Jyotiwill be interesting were the pricing ends up. Not sure if i am comfortable paying a upfront for preorder cost without knowing if the device works yet or what the app really includes. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted October 1, 2023 Report Share Posted October 1, 2023 On 9/30/2023 at 7:49 AM, MikeO said: . Not sure if i am comfortable paying a upfront for preorder cost without knowing if the device works yet or what the app really includes. Yeah....it is a lot. And there are so many potentially helpful things to spend money on. It is hard to know which investments will be well worth it and which will end up in the back of the closet. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted October 2, 2023 Report Share Posted October 2, 2023 I was reading a thread about the cost on a CFS forum. The folks there were not happy at all about the subscription model. I do think some of them were a bit too harsh, but there were some good points as well. For instance, one person pointed out that people on a low or fluctuating income can save up for a one-off purchase, even if it takes them a while, but would find it very hard to commit to periodic payments for an indefinite amount of time. Also the usual problems of something that only works if you pay a subscription. If you can’t pay, you are left with a useless earpiece, and you can’t even sell it or give it away. Do any other wearables have this model? I don’t have a smartphone and avoid apps. I don’t even like buying PDFs of knitting patterns because, unlike printed booklets, you can’t sell them or give them away. *** On a separate note, I saw mention of a base station. @MikeO, is that just for charging? Quote Link to comment Share on other sites More sharing options...
MikeO Posted October 2, 2023 Report Share Posted October 2, 2023 @Sarah TeeI agree that the pricing is less than desirable given it is only going to be a health wellness device and not a FDA approved one. My blood pressure monitor, heart monitor, and both my blood glucose meters were all just a one time cost and not even near what STAT is asking. only item i pay for is the BGM software that i use $30 a year and that is a reasonable cost for what i get in return. I also do not like that fact that final pricing won't be known until the actual day they open up and take preorders and then i would have to pay in advance for something that even has not been beta tested yet. for this i am out. Not sure what the base station mentioned is. i thought the device recharged with solar. maybe just a holder when not in use? @Jyoti? Quote Link to comment Share on other sites More sharing options...
Jyoti Posted October 2, 2023 Report Share Posted October 2, 2023 16 minutes ago, MikeO said: Not sure what the base station mentioned is. I wondered about that as well. And not being of a tech-oriented mind, I thought--some sort of linkage to the software. Don't laugh too much. Still...I can't imagine why. @MikeO--you are probably correct that it is a holder of some sort. 9 hours ago, Sarah Tee said: only works if you pay a subscription. If you can’t pay, you are left with a useless earpiece, and you can’t even sell it or give it away. This is particularly bothersome to me as well. The earpiece is only of value when paired with the subscription, so overall, it asks a lot of us financially in order for it to be of any use. If we do not find it of help....then it's a totally wasted investment? 9 hours ago, Sarah Tee said: Do any other wearables have this model? My circle of knowledge on this is small, but I do know of two other wearables with this model that might be applicable to us. I believe there are others for athletes or would-be athletes... Visible has a free app with which measures all sorts of things over the course of a day--sleep, activity, stress, steps, energy expended and remaining. They have recently launched a subscription service which includes--like this model--a device, in this case a Polar arm band. You buy the armband (for $70--which isn't too bad) and then the enhanced service offers lots more data sent to your phone all day, including alarms and such. They are working on dysautonomia measures, including being able to measure 'up time.' I believe the monthly cost is $15, just for comparison. Also--Apollo Neuro, which I use daily, has had a wearable you buy for about $350 and then free programming on a phone app. It does no tracking, but rather provides interventions, sleep and stress support through sound vibrations. They recently started an enhanced subscription program which offers a couple new 'modes' the device can be put in, like 'stay asleep.' I can't recall how much, but I passed. I'll manually select 'sleep' in the night rather than fork over more money each month. I believe that there are a lot of people working on how to help those of us with complex illnesses whose motivations are good. But there is no denying that particularly with the sharp increase of those who have dysautonomia (from long COVID) we present as a pretty deep and as of yet untapped market. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted October 3, 2023 Report Share Posted October 3, 2023 @Jyoti, you can send it back within a certain period if you decide you don’t want to keep it, but the company retains $US100 as a “restocking fee”. I think it was a month. But after that, as you say, it becomes worthless if you can’t or don’t want to continue to pay. I think you are right about the base station – you probably “dock” the earpiece in the base station and the base station uploads the data to your phone. Or maybe you put your phone and the earpiece on the base station together. Interesting to read about those other “health wearables”. Maybe if the technology in the STAT device isn’t patented, or if it is patented and another company wants to pay to use it, rival wearables that measure blood flow to the brain could come out with different pricing models. And maybe one brand could even come all the way to Australia – I’m testing out medications right now to increase blood flow to my head and having something to measure that would be so handy! Quote Link to comment Share on other sites More sharing options...
MikeO Posted October 5, 2023 Report Share Posted October 5, 2023 @Jyotinot sure if you made the STAT facebook web presentation. i do have reservations as to this start up. not even sure what the base station thing is about but if one is that disabled why would you need it. My take is this is a crowd funded start. pricing is still fuzzy and not set with no clear expectations or proof of viability. I would do the beta testing but will not be willing to pay a dime to do so even my PCP suggested for testing one should be paid. I am out for now. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted October 23, 2023 Report Share Posted October 23, 2023 The talk on this gadget from the Dysautonomia International 2023 conference has been released: https://vimeo.com/859062357 I haven’t watched it yet, so I don’t know how much it differs from the talk done for Solve ME that came out a little while ago. Edit: Unfortunately the audio is a bit echo-ey. Still understandable but a bit of a strain to listen to. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted October 24, 2023 Report Share Posted October 24, 2023 Looked at the website today and finally there is content! https://www.stat-health.com Unfortunately the text is reversed out, white on black, proven to be less legible to normal people, let alone us folks with brain fog. I read it with the “Reader View” on my iPad. The exciting news for me is that the company is planning to make a medical device version in the future. Hurrah! Quote Link to comment Share on other sites More sharing options...
albertspa Posted November 6, 2023 Report Share Posted November 6, 2023 Is there a reason why this isn't available for purchase from overseas? Quote Link to comment Share on other sites More sharing options...
MikeO Posted November 6, 2023 Report Share Posted November 6, 2023 1 hour ago, albertspa said: Is there a reason why this isn't available for purchase from overseas? Yes the product has not been fully developed as of yet and the company is in a crowdfunding mode (campaign to raise money). I bowed out of the early pre-order. i do hope the product does make it to market but i am just not waiting for it to get there. Just as a side note if or when it is available it will just be a health wellness device and still i can't see paying a substantial cost for that. A DME like a CGM i could see but they are not close to that. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted November 7, 2023 Report Share Posted November 7, 2023 @albertspa, I’m guessing it’s because the product would have to be registered in other countries before the company could sell it there. Even though it is registered as a health device rather than a medical device, the registration is still required and each country would have different requirements. This would take time and money, and the potential sales in the other countries might not justify that expense right now. Having said that, I am desperate to have one and wish it was a worldwide release. I am trialling medications to reverse the abnormal vasoconstriction to my brain at the moment and it is so hard to know whether they are working or not because of all the side effects and other stuff going on. Quote Link to comment Share on other sites More sharing options...
albertspa Posted November 7, 2023 Report Share Posted November 7, 2023 @MikeO@Sarah Tee Thanks for the answers guys! So I asked STAT Health directly via facebook and this was their response. Seems like you were right, Sarah, it appears they didn't yet get the regulatory approval to operate from outside the United States in regard to personal data collection and the like. This somewhat implies that you may be able to use it from outside the United States, so I bet you could have a relative or friend purchase and send you one. Quote Link to comment Share on other sites More sharing options...
MikeO Posted November 7, 2023 Report Share Posted November 7, 2023 4 hours ago, albertspa said: @MikeO@Sarah Tee Thanks for the answers guys! So I asked STAT Health directly via facebook and this was their response. Seems like you were right, Sarah, it appears they didn't yet get the regulatory approval to operate from outside the United States in regard to personal data collection and the like. This somewhat implies that you may be able to use it from outside the United States, so I bet you could have a relative or friend purchase and send you one. Wow the question was posted on the VIP STAT facebook and went unanswered. "Can you give me an idea of when this will be available in Australia? I have severe POTS it would help so much." Quote Link to comment Share on other sites More sharing options...
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