Open Recruiting: Stony Brook University, Daily Activity Patterns and Heart Rate Variability in ME/CFS

Andy

Andy

Retired committee member
New NIH-funded Study: Daily Activity Patterns and Heart Rate Variability in ME/CFS
Volunteers with ME/CFS for research study needed

Highlights
  • Find out if activity patterns (such as “push-crash”) and life events are related to heart rate variability (changes in your heart rate)
  • Find out if heart rate variability can be used to predict your relapses and setbacks
  • Discover if improving or worsening illness is related to your activity levels, life events, and heart rate variability

Study specifics
  • Home-based; no face to face visits
  • Participation in study activities over 6 months
  • Study volunteers paid up to $300 for full participation
  • Study tasks for volunteer participants include:
Periodically wearing a small heart monitor
Wearing a daytime activity monitor
Completing a weekly online web diary
Completing questionnaires​

Contact: (US Only) Dr. Patricia Bruckenthal Tel: 631- 444-3268 Email: patricia.bruckenthal@stonybrook.edu

Principal investigator: Fred Friedberg, PhD
​
All text taken from https://solvecfs.org/wp-content/uploads/2019/04/Friedberg_flyer_HRV_Study_revised.pdf-stamped-1.pdf

 
As one of the many that wears a heart rate monitor, I’ve noticed a massive variance in heart rate response to simple tasks ...one day I will be reasonably active and only notch up say an hour of elevated heart rate activity (by elevated I mean the zone above sedentary ..for me between 75 and 100 bpm). Another day I can do the same activities and it’s more than doubled (sometimes quadrupled) the time in the elevated zone.

I hope they encourage a meaningful level of detail in the diaries (activity, symptom and environmental), since for me the variability seems to have little correlation to activities undertaken, but symptoms do give a clue as to when I’m likely to have a bad day.

Good to see it’s over a decent time period.
 
arewenearlythereyet said:
As one of the many that wears a heart rate monitor, I’ve noticed a massive variance in heart rate response to simple tasks ...one day I will be reasonably active and only notch up say an hour of elevated heart rate activity (by elevated I mean the zone above sedentary ..for me between 75 and 100 bpm). Another day I can do the same activities and it’s more than doubled (sometimes quadrupled) the time in the elevated zone.

I hope they encourage a meaningful level of detail in the diaries (activity, symptom and environmental), since for me the variability seems to have little correlation to activities undertaken, but symptoms do give a clue as to when I’m likely to have a bad day.

Good to see it’s over a decent time period.
Click to expand...
Could it be cumulative activity ? We have big variation 2 days after anything significant - it ramps up and down either side of this.
So max heart rate could be on a day where nothing much is being done ( other than PEM)
 
Amw66 said:
Could it be cumulative activity ? We have big variation 2 days after anything significant - it ramps up and down either side of this.
So max heart rate could be on a day where nothing much is being done ( other than PEM)
Click to expand...
Possibly. I definitely used to experience the cumulative effect and my crashes almost followed a pattern.

However over the last year I’ve been pacing very strictly well below my previous baseline (like half of the previous activity) and I’ve noticed that I still get the over reactive heart rate effect outside of PEM...perhaps it is a mild form of PEM without any other symptom exacerbation? My daily routine is pretty monotonous and doesn’t change much (2000-2500 steps a day, shower, go to work, work sat down often with ear plugs in, Climb one set of stairs, eat the same food etc etc). Variations are normally having a cold etc.

Now my PEM episodes are much more spaced apart and less predictable.

I’ve had heart palpitations as a symptom since onset and it previously used to be a reliable signal that a crash was on its way...now not so much?
 
arewenearlythereyet said:
Possibly. I definitely used to experience the cumulative effect and my crashes almost followed a pattern.

However over the last year I’ve been pacing very strictly well below my previous baseline (like half of the previous activity) and I’ve noticed that I still get the over reactive heart rate effect outside of PEM...perhaps it is a mild form of PEM without any other symptom exacerbation? My daily routine is pretty monotonous and doesn’t change much (2000-2500 steps a day, shower, go to work, work sat down often with ear plugs in, Climb one set of stairs, eat the same food etc etc). Variations are normally having a cold etc.

Now my PEM episodes are much more spaced apart and less predictable.

I’ve had heart palpitations as a symptom since onset and it previously used to be a reliable signal that a crash was on its way...now not so much?
Click to expand...
My aunt is severely affrcted, so this may not mean anything for you, but heart palpitations seem to correlate to magnesium status for her. Things have been much better since she dies magnesium via injection
 
Good idea for a study provided it's well executed.
Andy said:
Periodically wearing a small heart monitor
Click to expand...
Why only periodically? That sounds like a recipe for missing important data?
Jonathan Edwards said:
My only question is whether more sophisticated accelerometers are needed to identify key movement patterns that might provide useful information.
Click to expand...
Definitely need some better quality accelerometers than the step counters on your typical wrist heart monitor. Those are worse than useless.
Andy said:
Find out if heart rate variability can be used to predict your relapses and setbacks
Click to expand...
I predict that HR and HRV don't predict but merely track. At least that's how it works for me. By the time HR and HRV change - and they do, significantly - I can feel other symptoms ramping up already, too.
So HR and HRV are useful for documenting something's going on other than self-reported symptoms but not predictive in the sense that they let you know you're overdoing things before it's too late.
 
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