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'
https://t.co/4tiwrSVGAX
@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?
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 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
@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.
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?
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