Hello! Fitness tracker recommendations?

[Trish]

@SunnyK, please don’t assume my BP rates tell you anything useful about ME generally. I just gave a couple of figures for me that may or may not apply to anyone else. The idea of heart rate monitoring to help with pacing comes down to each individual tracking their own data and working out whether there is a relationship between activity that might trigger PEM and heart rate. It's just part of the picture.

 

[Ebb Tide]

This paper does have a list of some commonly used monitors by pwME:

https://www.s4me.info/threads/an-in...le-with-me-cfs-2023-clague-baker-et-al.32434/

Have you thought about buying an older model on ebay, to see how you get on and if it is useful for you.

 

[SunnyK]

In my experience the tachycardia has a cadence through the day as the resting HR wanders slowly up and down, with superimposed spikes with standing, moving, eating etc. PEM would likely up both the resting and maximum HR. In the moment, I don't think overdoing it cognitively would likely reflect an early change in HR, though may well show as a delayed effect. Others' experience may be different however.





Not unreasonable given what we've learned with Cambridge Analytica, Snowden etc. He might favour Linux or similar open source platforms in general, as they put control in the users' hands. But while Android itself is Linux-based, I would regard the app ecosystem as a bit of a "Wild West".

While certainly not open source in the majority, counter-intuitively you might be better with the Apple platform. Technically it's high quality, although you do pay extra for that; but most importantly Apple takes protection of user data very seriously and it's a point of distinction. See their legal fights with the FBI/DOJ for example. This isn't always to their advantage, eg Siri is technically very behind other voice assistants, partly because Apple keeps user voice data on-device where Google et al have it all on their servers.

They take particular care with personal health and location data. Although it's backed up in iCloud by default, Apple themselves do not have the keys to read it.* Individual apps can of course sync the data you give them access to to their own servers should they wish, but many iOS app makers follow Apple's lead and keep your data on-device and under your control as much as possible.

This difference is part of the cost differential - as many see it you're paying full price to Apple, as opposed to half price to another manufacturer with you and your data making up the residual. Or the oft-spoke Facebook/Twitter line: "if you're not paying for the product, you are the product."

---
* Even if the FBI asks nicely. See the table at https://support.apple.com/en-au/HT202303

Thank you, SNT. It sounds like the relationship between HR and activity with ME is more complex than I'd thought (but why did I think something health-related wouldn't be complex??). What you say about the monitor devices vis-a-vis security makes sense also, from what I know of Apple, although since we are a Linux household, I don't think it'd be practical for me to have an Apple watch, even if it were just for HR monitoring. But from what @Trish said, it sounds like I could possibly get an inexpensive wearable and check it regularly rather than sync it to an app, at least initially.

 

[SunnyK]

@SunnyK, please don’t assume my BP rates tell you anything useful about ME generally. I just gave a couple of figures for me that may or may not apply to anyone else. The idea of heart rate monitoring to help with pacing comes down to each individual tracking their own data and working out whether there is a relationship between activity that might trigger PEM and heart rate. It's just part of the picture.

Of course you are right, Trish, and it did occur to me after I'd written that that each individual with ME will have a different baseline HR and threshold for what triggers PEM. I think I am just grasping for some way of figuring out how to better pace myself, and I was really hoping a heart-rate monitor would do a lot of the work for me. So I'm a bit panicky that maybe I'm an exception to the rule and don't have the sort of HR increase that would help me figure out what my threshold may be. (If that made any sense--brain fog is bad today after a 50-mn telehealth for something unrelated.) But you also said that it's just part of the picture--so of course, HR measurements aren't going to be a silver bullet. Just trying to figure out if it's even relevant for me.
What @SNT Gatchaman said about "superimposed spikes with standing, moving, eating etc. PEM would likely up both the resting and maximum HR"--I've found that my HR doesn't rise very much (if at all) with physical activity, except first thing in the morning when I stand up, but I DO experience significant symptoms with those activities, esp as I'm in PEM. And given that I'm sure I'm in PEM, it doesn't seem to be true for me that PEM ups my HR resting and maximum, because I've never in my life had a lower resting HR than about 65, and right now it's around 68. And my maximum seems to be 88.

But I guess I need to stop panicking/being anxious and just continue to collect data.

 

[SunnyK]

One further question (or maybe saying differently what I was trying to articulate above): when one is in PEM, can one's symptoms not be tied to HR increase at all?

Rehashing hopefully more succinctly what I've been trying to say. What I'm trying to figure out, and perhaps I can't without more monitoring, is whether my HR really is reflective of my getting close to or going into the anaerobic threshold. So far, I get symptomatic without much of any change in HR, even with some physical activity like standing up to get lunch (although I do feel worse when I do that).

 

[SNT Gatchaman]

I've found that my HR doesn't rise very much (if at all) with physical activity, except first thing in the morning when I stand up, but I DO experience significant symptoms with those activities, esp as I'm in PEM.

I think this nicely captures the problem clinicians have had in understanding the problem. They fixate on an easily observable physiological abnormality, in this case increased heart rate and diagnose "POTS". No HR rise = "not POTS", "all tests are normal." The reality is the problem is symptom exacerbation on sitting/standing, ie orthostatic intolerance. Van Campen et al showed that the vast majority of patients had reduction in cerebral blood flow but many showed no significant change in HR or BP.

I think you might be in the group that doesn't really put their HR up very high, so wearable monitoring won't be helpful to catch things before you're more symptomatic. If there was a wearable that tracked cerebral blood flow, that might help but by the time that future is here for us, I hope we've already solved the disease!!

 

[Hutan]

And given that I'm sure I'm in PEM, it doesn't seem to be true for me that PEM ups my HR resting and maximum, because I've never in my life had a lower resting HR than about 65, and right now it's around 68. And my maximum seems to be 88.

Have you tracked your blood pressure at all? Given that is part of the cardiovascular system's response to the stress of being upright, it might tell you something. I found that my pulse pressure narrowed drastically on some days, typically while standing on one spot, such as doing the dishes. Pulse pressure is the difference between the two BP numbers, systolic and diastolic. There may be something else odd going on that you can measure. I was glad that I bought a blood pressure monitor and used it for a bit, to see the odd very high spikes and the narrow pulse pressure, it was validating.

For what it is worth, I don't use a heart rate monitor to pace. If I don't feel well, I sit down if I can, and if I feel very unwell, I lie down if I can. I did find that the morning resting heart rate was a good indication of what sort of day it would be (a high resting heart rate suggested I'd probably be lying down by lunch time and of little use for the rest of the day), but I don't even track that now. I have thought about getting an Apple Watch, but it is mostly to explore some of the other features.

I'm not convinced that not going over a certain threshold heart rate stops PEM, at least not for me.

 

[SunnyK]

Have you tracked your blood pressure at all? Given that is part of the cardiovascular system's response to the stress of being upright, it might tell you something. I found that my pulse pressure narrowed drastically on some days, typically while standing on one spot, such as doing the dishes. Pulse pressure is the difference between the two BP numbers, systolic and diastolic. There may be something else odd going on that you can measure. I was glad that I bought a blood pressure monitor and used it for a bit, to see the odd very high spikes and the narrow pulse pressure, it was validating.

For what it is worth, I don't use a heart rate monitor to pace. If I don't feel well, I sit down if I can, and if I feel very unwell, I lie down if I can. I did find that the morning resting heart rate was a good indication of what sort of day it would be (a high resting heart rate suggested I'd probably be lying down by lunch time and of little use for the rest of the day), but I don't even track that now. I have thought about getting an Apple Watch, but it is mostly to explore some of the other features.

I'm not convinced that not going over a certain threshold heart rate stops PEM, at least not for me.

I haven't tracked BP, in part because for a while (this was well before my ME diagnosis), my cardiologist (whom I began seeing because I was having bad chest pain with exercise--in retrospect, it was ME, since TONS of cardiac testing, incl cardiac MRI and CT scans, showed that my heart was in great shape) freaked out because my BP was up to 138/90 in her office. She wanted me to start monitoring my BP daily, and I got so worried that it would be high that, of course, it was always elevated. I still get anxious when my BP is taken. So it might not be an accurate monitor for me.

But it's really helpful to know that you use general symptoms--how you're feeling--and possibly morning resting HR as ways to gauge what your activity level should be. That may work better for me. Thank you!

 

[SunnyK]

I think this nicely captures the problem clinicians have had in understanding the problem. They fixate on an easily observable physiological abnormality, in this case increased heart rate and diagnose "POTS". No HR rise = "not POTS", "all tests are normal." The reality is the problem is symptom exacerbation on sitting/standing, ie orthostatic intolerance. Van Campen et al showed that the vast majority of patients had reduction in cerebral blood flow but many showed no significant change in HR or BP.

I think you might be in the group that doesn't really put their HR up very high, so wearable monitoring won't be helpful to catch things before you're more symptomatic. If there was a wearable that tracked cerebral blood flow, that might help but by the time that future is here for us, I hope we've already solved the disease!!

If I were a doctor, I fear I'd be one of those who fixated on a certain thing--I'm sort of OCD that way, exemplified by how I've been obsessing about my HR over the past few days! But I wasn't aware that a reduction in cerebral blood flow is the real issue. Very interesting.

My ME specialist told me that the illness is most likely caused by neuroinflammation in the brain. Do you know if this is related to decreased cerebral blood flow?

 

[SNT Gatchaman]

I wasn't aware that a reduction in cerebral blood flow is the real issue. Very interesting.

See the thread Cerebral blood flow remains reduced after tilt testing in myalgic encephalomyelitis/chronic fatigue syndrome patients (2021).

My ME specialist told me that the illness is most likely caused by neuroinflammation in the brain. Do you know if this is related to decreased cerebral blood flow?

I don't think we have solid evidence for neuroinflammation yet, but some imaging studies and things like the phosphorylated ATG13 findings are pointing in its direction. Even if proven, I would doubt that the illness is caused by this; rather I would expect it to be a downstream effect that can add to miserable symptoms, eg sound and light hypersensitivity. But that might be due to energy depletion or something else entirely.

It's possible that reduced cerebral blood flow could compound neuroinflammation. I recall one pilot study Children with orthostatic intolerance exhibit elevated markers of inflammation in the dorsal medulla (2019) but I don't know if there's anything newer —

magnetic resonance spectroscopy detected elevated markers of neuroinflammation in the dorsal medulla in children with impaired autonomic responses to head upright tilt.

Neuroinflammation as an underlying cause or consequence of autonomic dysfunction is an intriguing possibility requiring further study.

 

[Ebb Tide]

I've been using a polar watch & separate HR monitor chest strap for about 5 years.
I fitted POTS criteria in 2018 and because of that was never able to use HR monitoring with suggested limits, as I'd never have been able to do anything that involved sitting or standing. I just used to observe what happened to my HR on different activities and tried to break up my upright time and sit rather than stand for kitchen activities. I still have a degree of upright tachycardia, although it is more lower and more stable.

Now I tend to only wear the chest strap until about mid morning, unless I know I'll be doing something physically active later in the day. I think if you're trying it out to see if it useful for you, a wrist HR monitor is more helpful.

What is useful for me is tracking morning resting heart rate, as it is now fairly stable between 55 & 64 bpm, if it goes over that I'm overdoing it. But for the first 2 years I was monitoring it, it ranged from 60-104 bpm and it was hard to glean much beyond the higher it was corresponded with how awful I felt.

I find the daily activity time on my watch (which while not perfect broadly reflects time standing and moving around) more useful than the step count. Over time I've learned what overall upright time seems to keep me in a reasonable place and I use it during the day to check how much I've still got in hand, allowing for what essentials I still need to do.

What I do find is that when I'm doing too much, initially my upright tachycardia will worsen, but when I get to a point that my RHR has gone up to 70ish, sometimes then my HR during the day doesn't rise as much as usual but I feel worse.

I think using HR/activity monitoring starts with observing what is happening with you, how it corresponds with how you feel and how it is over time. Remembering the limitations of technology- mine keeps telling me I've had a super active week because it thinks upright tachycardia is aerobic exercise.

 

[Hutan]

I still get anxious when my BP is taken. So it might not be an accurate monitor for me.

If you had your own monitor, you could use it at home in relaxed settings. You might find that the anxiety goes with repeated use.

I'm sort of OCD that way, exemplified by how I've been obsessing about my HR over the past few days!

I haven't seen what you have posted here as obsessing. When there is something, a tool, that might help us gain some control over our illness, I think it's reasonable, even responsible, to want to find out more about it.

 

[Kitty]

One further question (or maybe saying differently what I was trying to articulate above): when one is in PEM, can one's symptoms not be tied to HR increase at all?

I tracked mine for a long while, first on a Fitbit and then on an Apple Watch (you're right about the latter possibly not being right for you, as you also need an iPhone), and all I've concluded is that the trend of my resting heart rate on waking goes up noticeably when I'm not well. It doesn't always happen, but often enough that it seems to be an indicator.

It's not PEM-specific, it just means I'm off-colour. I might have a cold or be stressed, but for some folk that could still be a useful thing to have flagged because they might be more vulnerable to PEM.

I stopped doing it because it wasn't telling me anything I didn't know. I'm reasonably good at pacing myself so that I don't land up in awful PEM, unless something's gone horribly wrong or I get an opportunity that I decide is worth the consequences.

Actual HR increases during activity mean nothing much. Some days I can swim 1500 metres at 85% of notional maximum heart rate once warmed up, and get no significant PEM as long as I rest completely the next day. Another time, I'll feel terrible for two days after going round a supermarket in my wheelchair, when my HR went up a bit for half a minute when I climbed in and out of the chair.

I've pored over spreadsheets of records, and there's no signal clear enough to be even vaguely useful. It depends much more on how rested I was when I did an activity, how much of the time I had to stand upright, and how controlled the activity was (my freestyle stroke is smooth and efficient and has far lower PEM potential than, say, my hilariously unsteady gait across 10 metres of bumpy grass in a field).

 

[SunnyK]

See the thread Cerebral blood flow remains reduced after tilt testing in myalgic encephalomyelitis/chronic fatigue syndrome patients (2021).


—

Thanks for this, SNT. I'll check it out.

I don't think we have solid evidence for neuroinflammation yet, but some imaging studies and things like the phosphorylated ATG13 findings are pointing in its direction. Even if proven, I would doubt that the illness is caused by this; rather I would expect it to be a downstream effect that can add to miserable symptoms, eg sound and light hypersensitivity. But that might be due to energy depletion or something else entirely.

It's possible that reduced cerebral blood flow could compound neuroinflammation. I recall one pilot study Children with orthostatic intolerance exhibit elevated markers of inflammation in the dorsal medulla (2019) but I don't know if there's anything newer —

Hmm, interesting that neuroinflammation, if evident, would be more an effect than a cause. So much yet to learn.

 

[SunnyK]

I tracked mine for a long while, first on a Fitbit and then on an Apple Watch (you're right about the latter possibly not being right for you, as you also need an iPhone), and all I've concluded is that the trend of my resting heart rate on waking goes up noticeably when I'm not well. It doesn't always happen, but often enough that it seems to be an indicator.

It's not PEM-specific, it just means I'm off-colour. I might have a cold or be stressed, but for some folk that could still be a useful thing to have flagged because they might be more vulnerable to PEM.

I stopped doing it because it wasn't telling me anything I didn't know. I'm reasonably good at pacing myself so that I don't land up in awful PEM, unless something's gone horribly wrong or I get an opportunity that I decide is worth the consequences.

Actual HR increases during activity mean nothing much. Some days I can swim 1500 metres at 85% of notional maximum heart rate once warmed up, and get no significant PEM as long as I rest completely the next day. Another time, I'll feel terrible for two days after going round a supermarket in my wheelchair, when my HR went up a bit for half a minute when I climbed in and out of the chair.

I've pored over spreadsheets of records, and there's no signal clear enough to be even vaguely useful. It depends much more on how rested I was when I did an activity, how much of the time I had to stand upright, and how controlled the activity was (my freestyle stroke is smooth and efficient and has far lower PEM potential than, say, my hilariously unsteady gait across 10 metres of bumpy grass in a field).

Kitty, sorry you did so much work to come to the conclusion that HR tracking just wasn't useful for you. But great that you've learned to pace yourself. Do you have any tips for how to do that without a reliable and easy gauge like HR change? Because I am really struggling--if I start to feel unwell, it's usually too late. (Although admittedly there are far too many times when I do activity even when feeling rotten--like going to an eye exam appt this a.m.)

Thanks so much!!

 

[SNT Gatchaman]

Hmm, interesting that neuroinflammation, if evident, would be more an effect than a cause. So much yet to learn.

Probably getting well off-topic now, but for more overview on the brain imaging findings, have a look at this thread and the linked tweet which summarised their findings: Neuroimaging characteristics of ME/CFS: a systematic review (2020).

In that review they looked at neuroimaging studies from 1988 - 2018 and summarised the various consistent and inconsistent findings. The consistent findings related to metabolism and in particular to impaired neurovascular coupling.

Neurovascular coupling is the concept that the brain needs a lot of energy and this is required just-in-time. So if a particular region of the brain is more active it needs more blood flow to bring nutrients (glucose) / oxgygen and clear waste products. This is the basis of functional MRI (fMRI) which typically uses BOLD imaging to show the increased blood flow via Blood Oxygen Levels.

Perhaps in ME/CFS, a general impairment in metabolism is reflected as mismatch in neural demand and metabolic supply, or there may be a specific brain inability to correctly match through derangement of some aspect of the neurovascular coupling mechanism.

See Neurovascular Coupling in Development and Disease (2021, Frontiers in Cell and Developmental Biology) for a recent review article and I've linked some others in a post in that thread.

 

[Kitty]

Do you have any tips for how to do that without a reliable and easy gauge like HR change? Because I am really struggling--if I start to feel unwell, it's usually too late.

Yes, it is hard. I've been ill since 1976, though, and that long experience is part of it.

It's also the case that I'm retired, live alone, and am not severely affected. The absence of ongoing, difficult-to-calculate energy consumption that's required in a shared home must make it more straightforward to get a sense of my own capacity for activity, and that's what I base decisions on. Also, if I hear alarm bells, I can just stop. I don't have to share meals, so if tonight's dinner is a slice of toast and a scone because I haven't the oomph to prepare or eat anything else, I won't have to fend off concerns about unhealthy food. And except for occasional medical appointments or home safety checks by the landlord, I can also cancel the rest of the week if I need to.

Screeching to a halt has probably been a good chunk of my management strategy for a long while, to be honest. I can predict roughly how I'm likely to be affected if I go out on a two-hour wildlife survey tomorrow, and of course I diligently schedule in the recovery time, but sometimes I'm taken by surprise that a five-minute shower leaves me just as floored. In that case, I can at least not make it worse! Pulling back from the brink doesn't stop me getting some PEM, but it can make the recovery a bit faster. The strategy might be completely ineffective for people with a lower activity threshold or other non-negotiable demands on their energy, though.

 

[SunnyK]

I find the daily activity time on my watch (which while not perfect broadly reflects time standing and moving around) more useful than the step count. Over time I've learned what overall upright time seems to keep me in a reasonable place and I use it during the day to check how much I've still got in hand, allowing for what essentials I still need to do.
.

Thanks, Ebb Tide. I think that paying attention to amount of activity, whether physical or mental (or both), may be what I need to do. I keep a daily monitoring journal of symptoms and activity, but it honestly hasn't been helpful because, I think, it's poorly designed. I list a 1-10 number for fatigue, brain fog, and pain for each day, then do a laundry list of symptoms I experienced, then a laundry list of my activities. But I *don't* do any sort of correlation between activity and symptoms--for instance, what symptoms did I experience after driving 5 mn to an eye appt that took 45 mn? Although I'm not sure that would work, since usually my symptomatic reaction to activity is delayed. Sigh.

 

[SunnyK]

Yes, it is hard. I've been ill since 1976, though, and that long experience is part of it.

It's also the case that I'm retired, live alone, and am not severely affected. The absence of ongoing, difficult-to-calculate energy consumption that's required in a shared home must make it more straightforward to get a sense of my own capacity for activity, and that's what I base decisions on. Also, if I hear alarm bells, I can just stop. I don't have to share meals, so if tonight's dinner is a slice of toast and a scone because I haven't the oomph to prepare or eat anything else, I won't have to fend off concerns about unhealthy food. And except for occasional medical appointments or home safety checks by the landlord, I can also cancel the rest of the week if I need to.

Screeching to a halt has probably been a good chunk of my management strategy for a long while, to be honest. I can predict roughly how I'm likely to be affected if I go out on a two-hour wildlife survey tomorrow, and of course I diligently schedule in the recovery time, but sometimes I'm taken by surprise that a five-minute shower leaves me just as floored. In that case, I can at least not make it worse! Pulling back from the brink doesn't stop me getting some PEM, but it can make the recovery a bit faster. The strategy might be completely ineffective for people with a lower activity threshold or other non-negotiable demands on their energy, though.

Actually, I think this is a great strategy--the idea of "just stopping" when alarm bells are going off, and also diligently scheduling in recovery time for activity that you do. I fail to do those things much of the time. It's not entirely my fault; having had chronic illness since 1976 (when I was 8) and having developed all sorts of comorbidities related to that means that I have at least one medical appt per week, often as many as 3. Recently, I have had a few weeks where I have had to postpone those and reschedule, but that can cause issues with other aspects of my health, and it also means that the rescheduled appointments end up giving me busier weeks down the road.

But I can do a much better job of stopping when I'm not feeling OK, especially doing stuff around the house. Like sitting here at my computer, feeling entirely winded, when I should be getting ready for bed! My husband is going to start yelling at me (to go to bed) any minute now...

 

[Kitty]

I keep a daily monitoring journal of symptoms and activity, but it honestly hasn't been helpful because, I think, it's poorly designed. I list a 1-10 number for fatigue, brain fog, and pain for each day, then do a laundry list of symptoms I experienced, then a laundry list of my activities.

That sounds like quite hard work?

I think my strategy is the opposite, in that most of the time I don't think about it. I'm too taken up with other things. It's more the little feedback signals: did sitting down for a rest half an hour ago help? If it did, my back brain might prompt me to get up and do something else. If it didn't, it knows more sitting down is needed.

The decision-making isn't completely unconscious, but I don't spend much time focused on it. It'll come to the forefront when it strikes me that I felt really rough yesterday and today isn't any better, meaning I ought to check I've got enough slack in the schedule.

I'm also immensely skilled at not doing housework. It's probably one of my crowning achievements, in fact. I insist on my clothes and bedding, kitchen and bathroom being clean, but everything else can be postponed for as long as necessary. My late mum was an obsessive cleaner and my sister still is, and it was hard to get out of the mindset that somehow housework is a moral issue. Not only is it not, it can be a harmful habit; I was relieved when I managed to quit!