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

I am doubting the accuracy of HRV as a predictor but then I am also doubting I’m getting good readings since I switched the the arm band. That’s why I’m wondering how he would vet the accuracy.

 

Nice idea, but still needs washing every day!

 

https://www.youtube.com/live/zWOLxwwp75I?si=MtFr1MeQC7bSLoGY

i’m not sure if I did this correctly. Interview with Harry Leeming. He talks about on going changes to the software and how research data is being used. Interesting to me is how they are finding HRV is working differently for people with chronic illness then they expected.

 

I think it’s great they are looking at publishing imminently. One in the eye for BPS and a massive step forward for patients.

 

Last time I checked, Visible was just a fancy HR/HRV app with no evidence of efficacy. Only thing that appears to have changed is that they accrued testimonials, presumably for marketing.

 

It has the self-reported activity tags, daily symptoms by severity and the monthly FUNCAP.
They’re at the point they can predict HRV days ahead. David Putrino is using the data for a research project.

 

Good question. What is the data on the use of HR/HRV monitoring for pacing?

 

https://workwellfoundation.org/wp-content/uploads/2023/01/HRM-Factsheet.pdf

 

I’ve seen a lot of guidelines and listened to various people talking about using monitoring to help with pacing and I have been and will continue to use the Visible app but my question is has there been data showing that this kind of monitoring does in fact increase the effectiveness of pacing? Cause I am long past the ability to simply stop and recover or trade activities and this does seem to be low risk as an attempted intervention.

 

Pacing has always been about resting. This is just a scientific way to see what your body counts as rest or exertion.

 

I was thinking of it as a way to figure out that magical baseline and learn ways to stay under it.

 

That’s what you do - reduce your overexertion. Stay under your pace points.

 

Hi all. Reading through this, I feel like I'm late to the party, and many of the guests have already gone home!

I've been using Visible Plus, with the Polar armband for around three weeks now. I feel like I learned a fair bit about myself in the first few weeks. Firstly, I was amazed at which activities send me into "Over Exertion" most rapidly. My morning rituals (probably more like midday most days) of shower or bath, shaving, brushing my teeth and dressing seem to wipe me out more than almost anything else. Which kind of explains why I find the rest of the day so hard, and why it's so easy to trigger PEM. Being able to compare activities like a short walk or short drive (I'm only mild to moderate at present fortunately) against a shower has been a real eye opener.

I feel that there are (at least) two limitations however:

1) Regarding cognitive energy monitoring and associated malaise, which it clearly can't monitor directly. If I am writing an email or filling out a form that's emotional, that often raises my heartbeat, but if I'm trying to work something out involving numbers, that can just as easily send me into brain fog without any rise in heart rate, so I need to bear that in mind.

2) I confess to being totally confused about how "Pace Points" are supposed to reflect the amount of exertion! I've looked at the Workwell HRM Factsheet, which basically seems to advise keeping your heartrate below a threshold is called the ventilatory/anaerobic threshold, or V/AT for short, which is generally calculated as you resting heart rate plus 15 bpm, and suggests stopping an activity completely if you exceed this for 2 minutes. Looking at the Visible App approach, the thresholds are set to "Activity" which is a little higher (maybe 8-10bpm) than your resting heart rate, and an "Over Exertion" threshold which is 15 higher than that. Now comes the odd bit - You seem to run up "Pace Points" based on simply the time spent (per minute) in "Activity" and 4 x time spent when in "Over Exertion". But once in over exertion, it doesn't seem to matter how high you send your heart rate, you don't run up Pace Points any faster. So in theory if I enter "Over Exertion" when walking slowly, but also when walking rapidly, if I'll run up the same number of points walking slowly as I would walking rapidly, but I know that the second wears me out MUCH more, and I would prefer that to be reflected in the points. If not, it would appear that the best way to keep my pace points down is to run everywhere, because I'll spend less time running than I would walking because I would get there quicker!

So I'm interested in comments on Pace Points, and whether people are persevering and what experience you are having please. I agree with some earlier comments on the measures of HRV seem quite random, and the guidelines on how well my day is likely to progress don't tie in very will with my perceived fatigue and PEM state.

 

The daily score isn’t a guideline on how you’ll feel, it’s a measure of “stability” of your stats and reported sleep. You may feel fine! but behind the scenes things aren’t stable. It tells you so you can take that into account (or not).

Every day will involve “over exertion” and activity. The idea is to stay within your pace points. Rest doesn’t use any points, activity uses some and overexertion uses a lot. It’s based on heart rate zones and the corresponding aerobic/anaerobic threshold, so there’s no reason of the points to be used “faster” tied to your heart rate, because your heart rate is still in the allocated “zone”.

To be fair most people seem to find it difficult to stay within pace points, or to spend enough time truly resting and getting into the white zone. I think the breathing exercise function is brilliant.

I absolutely love Visible, it’s the antithesis of the “check how you feel/ don’t overdo it” pseudo well-being nonsense. Hard facts - brushing my teeth is a major event, eating and digesting food seems to be a major energy burner, too. Looks like I’m really sick, much more than the average person could appreciate.

 

Welcome @SteveFifield

You might find this webpage helpful regarding PacePoints
https://hrm4pacing.wordpress.com/visible/

 

From a personal perspective I really like Visible. The free version is of limited use as it is just a snapshot at one point in time in the day.

But the last couple of weeks I've had the upgraded version with the polar armband. I've been pacing with a Garmin for years, and have a good idea of what my average heart rate should be on a typical day, so I can see when I'm going over. But I hadn't got as much out of it as I could have because I haven't had the cognitive energy to do graphs so I could see more trends.

However Visible makes it so much easier and it does the graphs for you. And I especially like that going through the day it tells you whether or not you are likely to be under or over your pace points allocation.

The initial PacePoints limit is really just a "best estimate" and then the user adjusts up and down according to how symptoms respond to activity.

It's closer to the symptom contingent pacing described by Physios for ME, than the goal orientated pacing which most physiotherapists use.

 

Thanks MrMagoo. I think I did in fact properly understand that, but thank you for clarifying. My confusion is that the daily score seems rather random, and though I guide myself using it, and pace correctly, the outcome for the next day seems just as likely to be worse, equal or the same, when I would hope for equal or the same. It's still confusing. Perhaps it will stabilise a bit.

Yes, that's what was explained to me. You simply consume pace points four times faster when in "over exertion" compared to "activity" and that's what I find counterintuitive. So when I was walking with my son yesterday and I was unable to get out of "over exertion" however slow I walked (as we were on a slight incline), the best thing to do would have been to have speed walked for 5 minutes (or best I could do) rather than walked slowly for 10 minutes which would have used twice as many points. That way, though I would be more exhausted, I would have used half as many Pace Points reaching our destination. Walking slowly by still over the limit is implied to be tougher on me for banked PEM, than hurrying up.

But there is a real flip side which I've noticed which probably compensates for this. When over exerting significantly, I've noticed that it can take an hour or more for me to return to anywhere near the same heart rate I was before pushing myself, and if it really is extreme, I may never enter rest again on that day, so perhaps that's how you do end up consuming the "saved" points (by speeding up) and the argument is academic.

That's brilliant thanks, apart from the enormous guilt and embarrassment I'm now feeling over the 25 Pace point budget I've set for myself (I felt the 20 recommended was unworkable for me to start with), compared to the 3.7 that the person writing that article was constrained to use. I guess that's the difference between mild to moderate ME/CFS and somewhat more severe, which makes me feel very humble.

I personally took the view that in general with any objective feedback, it is better to feel that you are succeeding when you are trying to rather than failing all of the time. I can see many on this chat who just report that they are constantly over budget, and once you accept that being over budget is inevitable, there's probably less motivational incentive to keep within your goal, analogous to sticking with any kind of diet!