Pat

I'm a developer with #POTS building a next-gen iOS app for #chronicillness management. I am combining the best aspects of TachyMon HR monitoring + Bearable symptom tracking + Visible pacing, all in one. No outrageous, insane subscription fees. Demos coming soon

FYI, "Postural orthostatic tachycardia syndrome (POTS), a type of dysautonomia, has been an enigma to many healthcare providers. As many as 80% of COVID-19 long-hauler patients meet the diagnostic criteria for POTS.. we reported that POTS patients have a bleeding diathesis with platelet dense granule storage pool deficiency.. [In this study of 252 patients,] The most common bleeding symptom was easy bruising in POTS patients naïve to COVID-19 (79.7%) and POTS post-COVID-19 patients (90.5%)." Bruising.. 'Postural orthostatic tachycardia syndrome in post-COVID-19 long-hauler patients is associated with platelet storage pool deficiency' frontiersin.org/journals/medic…

@useless_priest anime is peak everyone should watch it

Is 35 too old to get into anime? I think it’s too old. I’m asking for me.

@Dimillian new chat, git diff

You have a 400K context window. You're deep into a complex vibe coding problem that is 95% solved but not quoted. Your context is 98% full. What do you do?

@sunsopeningband Is it a bad outcome measure? Is FUNCAP27 a good one in your opinion (could be unrelated), or are there better measures specifically for PEM?

Long Covid researchers’ use of the DSQ-PEM as an outcome measure is proof of a vengeful and angry God.

@DrInfoSec Sure of course, I’m curious as well

@SickPatato Interesting hypothesis. Would you mind if I amplified this to try to get more folks to look at this?

For years with post-viral dysautonomia/LC, I've been trapped in the exhausting cycle of "is this a reinfection or just a flare?" Every crash felt flu-like, but rapid tests came back negative. I had no fucking clue what it was, until

@Danokusu @DavidJoffe64 @atranscendedman @TachieApp thanks, really appreciate that! would love to have more testers on board.

@SickPatato @DavidJoffe64 @atranscendedman @TachieApp I posted your project in my local group :)

I suggest all my Long C-19 sufferers have wearable technology. The most useful, and this is NOT a paid advert, @atranscendedman are the Garmin and Apple series. It's about sensor accuracy and the software algorithms.

@Danokusu @DavidJoffe64 @atranscendedman @TachieApp One way to do this could be to use other metrics to detect when the user is at relative rest, and then take the reading periodically. I know apple watch doesn't even expose an HRV endpoint for developers - just black-box processing. The reason could be related to data quality

@SickPatato @DavidJoffe64 @atranscendedman @TachieApp Not really, but I see it is a thing in the community, many use the Garmin watch for that purpose or some third-party applications with apple watch. But I wonder how they manage the noise, I think the data is not that accurate?

@Danokusu @DavidJoffe64 @atranscendedman @TachieApp Thats cool! I'm not familiar with pixel watch and health connect but I hope you figure it out. With iOS Bluetooth connections allow background processing as long as the device is connected, but I'm not sure with Android - haven't looked into it.

@SickPatato @DavidJoffe64 @atranscendedman @TachieApp I use a pixel watch and I programmed a little app that reads the data from health connect and processes it similar to visible. But I would like to have a Live-Tracking option to get live notifications, if my "pace" (calculated from HR) is to fast e.g. in a 15 minutes window.

@Fighting_LC @DavidJoffe64 @atranscendedman @TachieApp No, most of the features require the Polar armband. There is an Apple watch app to monitor only HR in a separate mode, mainly for POTS

@SickPatato @DavidJoffe64 @atranscendedman @TachieApp Do you need an Apple Watch?

All day HR monitoring, not HRV (only on demand readings). There is a slight HRV hardware limitation with most polar devices, and furthermore HRV data is highly sensitive to noise and user movement, thus most apps don’t offer it due to this problem. Although theoretically its possible, the usefulness is limited. Are you looking for an all day HRV monitor?

@SickPatato @DavidJoffe64 @atranscendedman @TachieApp 24h HRV?

We're building our own iOS app @TachieApp designed for conditions like LC. It connects with the Polar/visible armband, capable of all day HR monitoring, HRV, energy pacing, orthostatic testing, biofeedback, and more. 100% private w/ everything processed on device. Currently in beta testing - lmk if you'd like to test

It's very possible that many people with chronic symptoms and dysregulated immune systems are experiencing low-level exposures from asymptomatic people that don't show up on rapid tests, but still trigger cytokine storms and crashes. Just wanted to share, maybe this could help someone.

So why do rapid tests stay negative for me? My theory: I'm exposed to extremely low viral loads (hence others don't get sick, and my illness isnt severe), but after the initial infection my immune system is dysregulated and hypersensitive. Even tiny exposures trigger massive cytokine storms and flu-like crashes. 6/7

@Naomi_D_Harvey lol does grok actually know this or

I fell for it, I am human, I used Grok to ask about the most famous person to visit my profile 🫣 I know I shouldn’t have but I did. And I am sad to say I am not sure it was right as it didn’t pick up that I’m mutuals with TV’s Victoria Stillwell (celebrity dog trainer).