Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

[Trish]

Thanks for the quick response. I think maybe wait until they have further information rather than palguing them with more questions unless you particularly want answers. I was asking more out of curiosity than a need to know. It sounds like they are busy with getting the new study up and running and there will be more answers after that.

On the first question, you could simply ask whether both HR and HRV are used to calculate pace points.

I hope they will have healthy controls in the study too. It would be interesting to understand better whether the variations in HR and HRV happen to everyone, but with different results in symptoms, or whether pwME and pwLC have different patterns.

 

[wabi-sabi]

From what you say it seems like heart rate is contributing more to how quickly you use up your pace points rather than heart rate variability. Is that correct?

Yes. Pace points are calculated using data from the Workwell Foundation. The app calculates whether you are at rest, in exertion, or overexertion based on your resting heartrate and the Workwell research. So it's sort of like getting to see the people at Workwell without being able to go there. I don't know the ins and outs of how heartrate is translated into points. That's the benefit of having the app do it for me and it's a big benefit. The whole point, I would say!

Do they use the HRV data for the morning stability score

Yes, along with resting heartrate and your symptom scores. This is more of a gestalt number from all the data the app gathers. I find it to be slightly less accurate than pace points. I think this is because I am relatively severe, my symptom scores are already maxed out.

How do these relate to each other?

This is the really interesting point and where I think the app needs to be fine tuned a bit. For my situation, the daily pace points are a much more accurate reflection of my status. I can see I've gone over budget 3 out of 4 days this week and think, "Oh that's why I'm still in a crash", when my brain just can't figure this out on its own. It's also been showing me I crash on a consistent basis, which is data I need, even if I don't really want to know. They daily morning score can overestimate my reserves when I have been in a crash for a long time.

 

[wabi-sabi]

I'm not sure if the Verity Sense armband is also a step-counter.

It doesn't have this functionality in the Visible app, but may with other apps.

Have made an account and started trying to connect my armband to the Polar Flow app but it's not really working.

Visible asks us not to use this armband with other apps for just this reason. It doesn't work. You would have to buy another polar armband if you want to connect with another app. I use the garmin body battery as a nice compliment to the visible, because it has a step counter- which isn't all that accurate when you are mostly bedridden, but it does give me another window into activity levels.

 

[NelliePledge]

I’m using the basic visible I’m struggling a little bit with working out how best to do it when my sleeping pattern is haywire. Sometimes the morning reading is before I’ve had any sleep. My hrv doesn’t seem to be predictive of worsening so far although my resting heart rate is noticeably higher when I’ve not slept.

 

[wabi-sabi]

I’m using the basic visible I’m struggling a little bit with working out how best to do it when my sleeping pattern is haywire.

That definitely makes it challenging!
Sometimes if I want to know how badly I am doing I would do a morning score on no sleep. Other times I do it when I really wake up. For example, if I don't fall asleep until 8 am, then I would do my morning score at 1300 when I did wake up for the day. It's morning for me then.

You'll have to decide which of these pieces of info is more useful for you at any given time. Measure based on that. It's certainly frustrating,

My hrv doesn’t seem to be predictive of worsening so far although my resting heart rate is noticeably higher when I’ve not slept.

This is really interesting! My HRV is much more predictive than how I am doing than my resting heartrate. If resting heartrate seems to be key for you, then try tracking that as much as you track the morning score to see how you are doing.

This is where I find using the garmin body battery together with the visible to be helpful. I've found my body battery only recharges when I've had enough sleep. Obvious, right? But seeing whether I'm fully charged or only in the 80s gives me a good idea of how I should look after myself that day. Also, seeing how quickly I charged overnight (or didn't) is indicative of how I'm doing. It's nice to see I charge faster when I've been pacing well and charge more slowly when I'm not.

 

[Amw66]

 

[Trish]

The article on the Visible website linked in the above Tweet:

Introducing: David Putrino’s Research Study

Launching a new in-app research study
From today, you can opt-in to share your anonymized data directly with David and his data science team via just a few taps of a button. There’s no need to attend any research in person, simply enroll via the app and continue tracking your illness as normal.

By opting in, your data can be used to generate population-level insights into Long Covid and ME.

more at link.

 

[NelliePledge]

I’m using the basic visible I’m struggling a little bit with working out how best to do it when my sleeping pattern is haywire. Sometimes the morning reading is before I’ve had any sleep. My hrv doesn’t seem to be predictive of worsening so far although my resting heart rate is noticeably higher when I’ve not slept.

I’m finding the apps judgment on my state as shown in the scores and accompanying comments pretty unhelpful eg for 48 hours I’ve had symptoms at my high end and hrv at the lowest point of my range it scored me as 4 you are at a stable baseline….. which is second highest level

I think part of the difficulty is possibly how I’m scoring. I’m not sure if I’m supposed to be scoring on mild moderate high for me whereas I tend to limit most scores to moderate because I don’t have severe ME. I only really score insomnia and sleep timing as high.

 

[Andy]

Text from tweet,
"Today, Visible is launching a research collaboration with neuroscientist David Putrino (@PutrinoLab) David + the team at Mt Sinai have been relentless in pursuing answers for people with #LongCovid and #MECFS. You can help them on this mission"

So relentless that he has indicated that he frequently doesn't diagnose people with ME/CFS, even when they meet ME/CFS diagnosis. Not sure how that is going to help ME/CFS research.

 

[wabi-sabi]

I’m finding the apps judgment on my state as shown in the scores and accompanying comments pretty unhelpful eg for 48 hours I’ve had symptoms at my high end and hrv at the lowest point of my range it scored me as 4 you are at a stable baseline….. which is second highest level

Yes, the accuracy of the morning stability score is the biggest downfall. I've had similar problems myself.

I think there is a construct analysis issue between stability and good pacing. The point of that morning score is "to measure your pace for the day ahead", no? But it doesn't always...

What I mean is, the app can mistake being stable for doing well (having a high morning score). I've been in a (worse) crash for about a week. At first when my symptom severity increased it gave me a lower score, because it is able to recognize increasing severity as a problem. Now, it's giving me a high morning score because my symptoms have stayed high- I'm still in a crash. Somehow it needs to be programed to recognize stably bad vs stably good. At this point I take the morning score with a grain of salt (although that's more taxing on my brain than I would like and sort of defeats the purpose of the app).

Text from tweet,
"Today, Visible is launching a research collaboration with neuroscientist David Putrino (@PutrinoLab) David + the team at Mt Sinai have been relentless in pursuing answers for people with #LongCovid and #MECFS. You can help them on this mission"

So relentless that he has indicated that he frequently doesn't diagnose people with ME/CFS, even when they meet ME/CFS diagnosis. Not sure how that is going to help ME/CFS research.

I'm worried about this too, but I signed up for it anyway. I just can't understand what he's thinking on that one. Yes, yes, the diagnostic criteria are vaguer than we'd like, but 1)they represent our best understanding so far and 2) what's a diagnostic criteria for but to make a diagnosis. Do we tell MS patients, yeah you have brain lesions on MRI everywhere, but I'm not diagnosing you with MS? Or diabetics, yeah your fasting sugar is 300 on multiple occasions, but that number's just a diagnostic criteria, so I'm not going to tell you you have diabetes? Or the same for high blood pressure? You're over the blood pressure limit to diagnosis hypertension, but, nope that's just a diagnostic criteria? I don't get it. Do PTs not diagnose people the same way MDs do? The best understanding I can put on it is that he thinks he shouldn't be making the diagnosis since he's not an MD.

 

[wabi-sabi]

I think part of the difficulty is possibly how I’m scoring.

Me too. There are some of my symptoms that are always maxed out. It looks like stability, but it's certainly not doing well. It was hard to know what to score things when there's a constant decline. The symptoms I scored as severe months ago now feel moderate in comparison.

I also think it's just hard to quantify a fluctuating illness that worsens over time. How do you separate the crashes from getting worse over all? We all knew that was hard by living it, but trying to program an app to measure it really highlights the problem. Heartrate pacing is the best method anyone has been able to come up with, but it definitely makes me think there is a variable we are missing. Another thing I am noticing is that the garmin body battery captures mental effort better than the visible does. I'm not sure how, since they are both using the same heartrate data. The garmin calls it "stress" which isn't really a helpful interpretation, but it's showing something...

 

[LJord]

I also find the HRV score to be fairly useless. Timing is a problem and the outcomes don’t match my reality.

I’m currently trying to track certain activities. For example, I tend to lie in bed for quite a while before getting up. On a truly awful day I wracked up points. On a good day I didn’t. It may, for me, be a more reliable guide to what I may or may not be able to do that day. That said I can’t seem to return to that wondrous place I used to be where I never got anywhere close to the point limit and I was doing more. Now I’m trying to bring it down. I think I may be seeing in real time a change in my set point.

 

[Keela Too]

I’m curious how folk, who have been using this for a while, are finding it? Any updates?

I’ve downloaded the free App for now. I’ve had ME 12 years and already get steps, heartrate & hrv numbers from my Fitbit.

Does this add more above that?

 

[Yann04]

To be honest apart from a warning sign when I’m doing very poorly and get a very poor morning stability score, the main use of the app is collecting data on symptoms and having a handy way to go and look at past data.

 

[Yann04]

I noticed the app had a reading list where they had some newsletters and stuff about long covid and me. all of which are nice but no where near having as high quality or being as comprehensive as this forum’s news in brief.

I mentioned to creators of the app and they answered:
“Interesting. A bit of a shame that it's presented in quite an outdated fashion as there's some really useful stuff in here.”

 

[Keela Too]

Thanks @yannlk

I might just stick with my current methods. I’m probably not very good at obeying a device over my own instincts anyway!!

I'm a bit confused by their reply. Did they think S4ME was a bit outdated??

 

[Yann04]

Thanks @yannlk

I might just stick with my current methods. I’m probably not very good at obeying a device over my own instincts anyway!!

I'm a bit confused by their reply. Did they think S4ME was a bit outdated??

yeah they liked the content but thought the “style” of the website was outdated… (tells a lot about their priorities)

 

[NelliePledge]

In a positive development the free version of the app has added a shorter version of the Norwegian developed Funcap questionnaire as a monthly review of functional capacity.

 

[Keela Too]

yeah they liked the content but thought the “style” of the website was outdated… (tells a lot about their priorities)

Wow!!

 

[Keela Too]

In a positive development the free version of the app has added a shorter version of the Norwegian developed Funcap questionnaire as a monthly review of functional capacity.

Yes I noticed that was there. Will be interesting to see what it shows

I also like the comparison feature.
I added “steps” & have defined my own boundaries for the scores they offer.