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New wearable that tracks blood flow to the brain

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10
Not sure if this is the wrong place to put this, so apologies if it is.

I just stumbled upon this new wearable, STAT, that says it tracks blood flow to your brain via an earpiece connected to an app. They're targeting POTS/dysautonamia but also ME/CFS and long COVID. I went ahead and reserved a pre-order spot (launching this fall) and it asked me if I had any qualifying conditions, including if I had ME/CFS.

I'm a data geek, so I'm all about new wearables and data tracking. Currently still geeking out about Visible and waiting impatiently to try the polar wearable that goes with it...
 

hapl808

Senior Member
Messages
2,130
Does Visible show much useful info? Shame it doesn't seem to interface with any other wearables - I'd love for my Garmin to interface with a data analysis app that's more focused on chronic health issues. The Garmin Stress and Battery isn't bad, but it's still more activity focused rather than health focused.
 

wabi-sabi

Senior Member
Messages
1,493
Location
small town midwest
Visible gives you a daily pacing score. It gives you a general idea of how you are doing on the push-crash roller coaster. I find it helpful, but I think i really need more fine grained data than only a once a day measure. On the up side, it allows me to see trends over time. I find the heartrate variability measurement to be the most helpful since it does follow my push-crash cycle fairly well. It feels to me like a round of PEM lasts about 4 days, but visible suggests it's more like 10 days, which I hadn't realized on my own. Now if I could only figure out how not to crash myself....
 

Judee

Psalm 46:1-3
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4,503
Location
Great Lakes
It feels to me like a round of PEM lasts about 4 days, but visible suggests it's more like 10 days
I did wonder about that because now it seems like I'm in a sort of perpetual crash no matter how much I rest. I liked how someone called it "Rolling PEM."

To me it's like a loan shark credit card where we can never manage to pay down the balance on the principal. All our rest seems to go towards the mountain of interest we've accrued so we never seem to catch up. :(
 

Jyoti

Senior Member
Messages
3,385
could you post a link to where it has been discussed on PR?
https://forums.phoenixrising.me/threads/visible-symptom-tracker-app.89005/

It gives you a general idea of how you are doing on the push-crash roller coaster. I find it helpful, but I think i really need more fine grained data than only a once a day measure.
I have found it quite helpful in terms of seeing patterns and correlations between various things I do and don't do and then...how I actually feel. And there are times when I wake up feeling pretty good and Visible tells me--nope, you need to lie low today. I have learned that I ignore that advice at my peril. It seems pretty savvy to me.

In addition, I use the Garmin to monitor the more granular state of affairs. Between the two of them, I have been able to avert a lot of crashes--or at least I believe that is the case!
 

Mary

Moderator Resource
Messages
17,416
Location
Southern California
Thanks so much @Jyoti ! I seem to have the attention span of a flea, I'll read about something and get excited and then promptly forget about it!

Really glad it's helping you though - It definitely sounds worth to try and paired with your Garmin, quite a tool set you have for navigating the treacherous waters of ME/CFS and PEM!

I just made an interesting dish from a video I saw on YouTube and it looked quite easy but ended up taking about twice as much energy as I thought it would (I'm really optimistic!) And I want to clean up my mess but a small still voice is saying don't. Just sit and don't move. You'll be okay tomorrow. So afraid I have to leave messy kitchen, at least I'll have a delicious dinner - at least it looked delicious on the video! 😁
 

Jyoti

Senior Member
Messages
3,385
I want to clean up my mess but a small still voice is saying don't. Just sit and don't move.

Small still wise voice, I would guess! Hope your creation was worth it all.

It definitely sounds worth to try and paired with your Garmin, quite a tool set you have for navigating the treacherous waters of ME/CFS and PEM!
Yes...it does seem to be very helpful for me.
 

wabi-sabi

Senior Member
Messages
1,493
Location
small town midwest
I have found it quite helpful in terms of seeing patterns and correlations between various things I do and don't do and then...how I actually feel.
That's the thing... I still can't always figure out the pattern.

So often it takes a few days (or as I've discovered even longer) for a pattern to show, that I've no idea what it was three weeks ago that started a downward spiral. I try keeping notes on what I did, but I don't always remember (well, I never remember) and my notes don't turn out to be helpful.
 

Jyoti

Senior Member
Messages
3,385
That's the thing... I still can't always figure out the pattern.
Excellent point @wabi-sabi. Let me revise or refine a little in the hopes of greater accuracy. I don't end up with durable experiential learning: e.g. if I walk six miles I will always crash for six days. That'd be really nice. A manual for living safely.

Rather, I get feedback that helps me stay with and attend to what is going on in the moment regardless. Three weeks is a really long time to track things. Extremely daunting. I can see why you still feel confused about the cause and effect. I do too, of course, but these things do help me manage some of that equation.

Sometimes I can take a walk and while it uses my allotment of energy for the day, it does not crash me. I make the calculation (as we all do about energy expenditures)--this is worth today's portion of energy in order to be outside, to see the ducklings by the river, to smell some roses. And it works out. Both the Body Battery and Visible will tell me--before and after--if that was a good idea. Other times, I think I can take a walk without big consequences, the numbers look ok, and then I get out there and see the BB draining like crazy. I know to come home and curtail all activity for the day, do the things that help me avert PEM. The next day's Visible reading will tell me if I got down in time, as it were, or if I triggered something bigger.

There is no consistent line I can draw between what I have done and not done AND either a successful walk or one that tanks me most of the time, but I can catch things before they escalate.

A couple of weeks ago I had a really terrible eight days. Way out of the ordinary. At first, I thought--I haven't done anything physically out of the ordinary, I haven't changed supplements or diet, I am not under any crazy stress....it's just a bad day and I can mostly just slide on through it. But Visible was telling me that I was at a 'one' and my Garmin was showing me a body battery that would not charge up from the mid-30s no matter how much I rested.

Lacking these 'data', I would likely have rested a tiny bit more--but mostly tried to plow through-- and ended up in multi-week or even multi-month crash. The 'rolling PEM' @Judee mentioned and which I lived with for years. I would have looked back (and at my notes, also not that helpful in the end)--and thought--I changed nothing, so this is likely pretty much nothing. But I could see that something was really wrong in the numbers and that helped me be much more conservative about everything I did until those numbers started to rise again.

I still have no idea what it was that laid me so low. It could have been a virus or something like that?
That is just an example of something I did NOT do, could not find a trigger for the crash. But I could have made it so much worse if I had relied on that my memory or mental analysis to tell me that there was no 'cause.'

For anyone who is better than I am (probably everyone) at attending to what their body is saying, this may not be necessary. But I have a really hard time believing what my body tells me. I guess I spent a lifetime (pre-ME) pushing through things and that imprint is in my cells. I need all the help I can get to listen. And both of these --Garmin and Visible--help me do that. Some patterns and correlations become clearer, some do not. But I know that since I have had these tools, crashes are shorter and less constant.

 

Mary

Moderator Resource
Messages
17,416
Location
Southern California
@Jyoti - I found the visible app already on my phone (!) Apparently I downloaded it several months ago and then promptly forgot about it.

Anyways, I just signed up and did my first morning reading. It's really interesting how it measures heart rate and HRV from my phone's camera (Pixel). My HRV was higher than the last time I recall measuring it - 49 or so. Before I think it was always in the 30's (this was over a year ago). I'm supposed to input more info in the evening, so 2 x day you do something with the app.

And it's free for whoever wants to give it a try. The app said that after 4 days it will start interpreting the data it's getting from me.

I also emailed STAT to let them know there's a problem with their launch invite - will post if I hear back from them.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
Not sure if this is the wrong place to put this, so apologies if it is.

I just stumbled upon this new wearable, STAT, that says it tracks blood flow to your brain via an earpiece connected to an app. They're targeting POTS/dysautonamia but also ME/CFS and long COVID. I went ahead and reserved a pre-order spot (launching this fall) and it asked me if I had any qualifying conditions, including if I had ME/CFS.

I'm a data geek, so I'm all about new wearables and data tracking. Currently still geeking out about Visible and waiting impatiently to try the polar wearable that goes with it...
Some of this might be slightly off topic. I've wondered about these but have not investigated much into them. I would think the obvious things such as glucose, heart rate, bp, temp, ox levels, all the various sensors used in sleep studies should be continuously monitored in a device or maybe series of devices like this and compared to controls.

The stat website alludes to doing some of this which is cool. I would need more information on what the device does and doesn't do before I would purchase one. Not real clear on this.

The blood flow monitor sounds interesting. I would think hands and feet would be a good place for this also if the goal was to find anomalies. I know my hands and feet get cold real easy and sometimes feet have an unusual tingling or burning sensation I have always attributed to poor circulation. Sometimes when I wake up from a death nap my arms feel funny also. Probably similar to when I was young and worked out a day or two after the workout. Used to get pins and needles on my face when I was in a moldy house.

I would think more emphasis on blood analysis. I always have one parameter having to do with globin or something like that that is just outside of normal every single time I get tested. Dr's always ignore these things unless they are way out of wack but their might actually be some vital clues to what is driving my symptoms. Also might be patterns that can be observed unique to people with CFS. Also have just outside of range (every time) protein I think it was in urine.

Also I strongly suspect heavy metals, I don't even ask my dr cause I am afraid he will start thinking hypochondria. I need to think of some BS line I could give him that sounds believable that would warrant him doing a battery of these kinds of tests.

I do occasionally get weird headaches migrating pain in my scalp, eyes, ears, throat, neck, back, sores on the roof of my mouth all of these seem somewhat treatable with plain old aspirin that seems to me to allude to some type of immune disorder or maybe some type of inflammation caused by viral or bacterial pathogen.

It would seem to me "epidemiology 101" investigating these things, things like these and then trying to find the cause and treatments and preventions. It's hard to believe this has been done and those who have done this found nothing out of the ordinary.

And why virtually all the researchers refuse to talk about or investigate into the correlation of water damaged buildings and CFS I don't know. Uncovering a correlation like this would be an indisputable biomarker.

Also if they could search for correlation's between other similar diseases like MS, Lupus, ALS, Parkinson's, Muscular dystrophie. For instance researchers found a correlation between EBV and MS, we know there is a correlation between long covid and sars2, long been hypothesized the correlation between CFS and EBV. HPV and Cervical cancer.
 
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