Pacing for PEM/PESE

Patients who have post-exertional malaise (PEM/PESE) generally benefit more from pacing and energy conservation than exercise-focused treatments. Pacing for PEM/PESE involves managing exertion to stay under the threshold that causes increased symptoms or post-exertional malaise. While pacing is not a cure for PEM/PESE, it is an effective management strategy. Pacing and energy conservation approaches need to be individualized for each patient.
This video covers how therapy providers can use biofeedback pacing, task analysis, activity logs, and heart rate variability tracking to assist patients with pacing to reduce their symptoms.
Note to community members: We advise viewers to always speak with their medical care team prior to making any adjustments or changes to their current regimen.
This video was made possible by the OMF-funded Medical Education Resource Center (MERC) at BHC, our generous donors, and viewers like you.

[@lhol3342]

Thank you. Very helpful.

[@gcarr5355]

Being a caregiver with PEM is so hard

[@Gina-dn6xm]

Very important

[@FMulholland]

This can be helpful, but I do not have PEM until around 24 hrs after an activity, so do not get the dizziness, nausea, etc, until then.

[@OrganisedPauper]

Same. I often get a crash up to 48 hours after too much activity. I'm currently enduring a nasty crash I can't even figure out what caused this one.

[@FionaEm]

We're all different. I get immediate and delayed PEM.

[@OrganisedPauper]

@@FionaEm Yes, I get an immediate kind of "I can't do this any more at all, must lie down" kind of thing, but full on crashes are usually delayed. No idea what happened to cause this one unfortunately.

[@cwebbwash3]

Maybe one day there will be enough research into ME CFS and other post viral syndrome so we can have better therapeutics than just being recommended to: "don't do anything with you life!" 🙄

[@surfskatemedicine]

This is exactly how I feel

[@nickdriver8337]

This is exactly it - the best I can hope for is to lessen symptoms somewhat, and in order to achieve this only marginally better outcome I need to live in such a way that I may as well be in a coma, or dead.

[@wandajune008]

If anyone has a recommendation for a heart monitoring device that gives information in real time, whether it’s watch watch plus chest monitor or whatever, I would be grateful. All the ones I have tried, have a set number below, which you can’t set your high rate alert. Such as, not below 120, or not below 100. It is not helpful if you’re alert heart rate is 85.

[@OrganisedPauper]

Just standing up puts my heart rate 30 beats above my resting heart rate.
My current crash followed a sudden increase in heart rate variability of 6 on one day followed immediately by a decrease of 10 the next day! No idea what that means.

[@BeepBopBoop735]

Have you been tested for POTS?

[@OrganisedPauper]

@@BeepBopBoop735 Thanks. No, I don't have POTS as far as I'm aware as it's not usually standing up from sitting/lying down that causes my pulse elevation. Rather it's standing for any length of time. The more fatigued I am the shorter the period of standing I can go. Edit. Sorry, I meant to add I wasn't very clear before. When I said standing up I meant keeping on standing. My error.

[@sarahturnbull7610]

@@OrganisedPauper POTS relating to moving from supine to sitting to standing, but it also relates to standing still, and sometimes to walking slowly. And POTS is just one kind of orthostatic intolerance. Have a look at the Bateman Horne Center’s resources on orthostatic intolerance, including the NASA Lean Test.

[@rancholocotv6097]

Are there good apps for Apple Watch to monitor HR changes and get alerts?