PEM without heart rate change?

SunnyK said:
was that ME was due to BOTH mitochondrial dysfunction and neural inflammation in the brain.
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My ME has never seemed to involve limited physical energy production. I might be very brainfogged, achy, and lethargic, but my legs would still be able to pedal my bike up a steep hill, so I just don't accept that mitochondrial dysfunction is an inherent part of ME. I consider it a common--but not mandatory--downstream symptom.
 
SunnyK said:
Curious: what HR/HRV monitor did you get?
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I have an Apple Watch which measures many Health metrics, some of course not normalised to ME (there have been a few studies on HRV in ME).

It is also useful to monitor health conditions eg Atrial Fibrillation alerts, data around Falls and hearing risk and you can enter BP or if have a BP monitor that connects, it will record your BP etc. Then there is a lot of lifestyle things like weight, menstrual cycle etc

Many third party apps work with the Health feature and input via the Activity feature and Heart Rate feature on the Apple Watch.

The Health feature also has HRV recording (I think it takes a measurement every hour).

The two third party apps I use the most are

1) WatchME which is a pacing app for Apple Users. It is very good and has many parameters and settings to customise your pace. It has a watch face that will have your Pace progress and warning colours, your HRV from the Health feature, and your current heart rates, resting, current and maximum.

2)Welltory - this is a pure HRV monitor, you can do an HRV recording via the camera of your iPhone (fingertip reading) or by activating the Breathe function for the Mindfulness section for 3 mins and both are very accurate HRV recordings. I use this a lot to give me feedback on the main way I manage troublesome symptoms of ME, getting horizontal and doing deep abdominal breathing, which lowers the Heart Rate and improves HRV metrics when in PEM, as well as when I have PESE (basically broken out of the pace for some reason within or out of my control) and need to try to get back to my baseline. Welltory has exercise prompts each morning based on yesterday’s activities, which I totally ignore!, and lots of wellness things like meditation, breathwork, etc, I usually just flick past that, sort of interesting neuropsychological stuff but the research is weak around it
 
It's M.E. Linda said:
Hi @SunnyK
I hope something here is of help to you.

I have worn a FitBit Charge 4 (recommended to me by a friend in the local support group) since March 2021. I use the free FB app together with a free app called Cardiogram which has an area for notes, so I can record what I am doing during any high readings.

My FB displays HR if I scroll through my watch. So if I have palpitations when sitting on sofa with my legs up, I can easily see what my HR is.

I also use the Visible app but all my recordings are taken by my mobile

My problem (under new investigation at POTS clinic) is that I suffer with very high heart rate on exertion, rather than syncope - which would be more classic POTS. I have suffered with Orthostatic Intolerance & dysautonomia for more than 6 years and was referred for a Tilt Table Test in 2017. Following a shortened TTT, I was just discharged by the consultant. Since then I have continued to suffer PEM/worsened symptoms, especially on standing.

After requesting another referral, I am now due to have a HR monitor attached for a 7 day reading. But I waited 7 months for my 1st appointment at POtS clinic (NHS), so I am not expecting my referral to Cardiology to arrive any time soon.
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M.E. Linda,
Thanks--this is very helpful. I'm really sorry that you have to deal with POTS--that is a really nasty condition (I know a friend who was diagnosed with it a few years ago, and she absolutely hates having to do the TTT). And worse that you have to wait so long to get an appointment. I hope that the NHS comes through for you much more quickly to see a cardiologist. This is perhaps the only way that healthcare in the US is better--IF you have decent insurance (and I do), you can usually find some doctor in the specialty you need who can see you in a shorter time frame than several months.
Take good care.
 
hibiscuswahine said:
I have an Apple Watch which measures many Health metrics, some of course not normalised to ME (there have been a few studies on HRV in ME).

It is also useful to monitor health conditions eg Atrial Fibrillation alerts, data around Falls and hearing risk and you can enter BP or if have a BP monitor that connects, it will record your BP etc. Then there is a lot of lifestyle things like weight, menstrual cycle etc

Many third party apps work with the Health feature and input via the Activity feature and Heart Rate feature on the Apple Watch.

The Health feature also has HRV recording (I think it takes a measurement every hour).

The two third party apps I use the most are

1) WatchME which is a pacing app for Apple Users. It is very good and has many parameters and settings to customise your pace. It has a watch face that will have your Pace progress and warning colours, your HRV from the Health feature, and your current heart rates, resting, current and maximum.

2)Welltory - this is a pure HRV monitor, you can do an HRV recording via the camera of your iPhone (fingertip reading) or by activating the Breathe function for the Mindfulness section for 3 mins and both are very accurate HRV recordings. I use this a lot to give me feedback on the main way I manage troublesome symptoms of ME, getting horizontal and doing deep abdominal breathing, which lowers the Heart Rate and improves HRV metrics when in PEM, as well as when I have PESE (basically broken out of the pace for some reason within or out of my control) and need to try to get back to my baseline. Welltory has exercise prompts each morning based on yesterday’s activities, which I totally ignore!, and lots of wellness things like meditation, breathwork, etc, I usually just flick past that, sort of interesting neuropsychological stuff but the research is weak around it
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Well, I don't have any Apple products (my husband, a computational cosmology systems engineer, is Linux all the way and Android when necessary), but the Apple Watch does sound tempting! Thanks for the info!
 
SunnyK said:
Thanks--this is very helpful. I'm really sorry that you have to deal with POTS--that is a really nasty condition (I know a friend who was diagnosed with it a few years ago, and she absolutely hates having to do the TTT). And worse that you have to wait so long to get an appointment. I hope that the NHS comes through for you much more quickly to see a cardiologist. This is perhaps the only way that healthcare in the US is better--IF you have decent insurance (and I do), you can usually find some doctor in the specialty you need who can see you in a shorter time frame than several months.
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But God spare us from the hubris of US cardiologists. ;)
 
Creekside said:
I've never heard of that career before. What pops into mind is someone maintaining the cosmic computer that keeps the celestial bodies moving properly. Yay engineers!

Just think the the mess if the cosmos was running Windows.
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Oh yes, Rob would flame out if he had to use windows. Basically, he's an astrophysicist with lots of programming skills/background, and when teaching in higher ed finally killed his soul, he came back to the national laboratory where he did his post-doc and helps build databases to allow other astronomers to process more easily the vast amounts of data coming from telescopes like the LSST.
 
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