Friday, 4 December 2015

Starting Heart Rate Monitoring for ME

 Recent developments in wearable technology for the fitness industry mean that ME patients, like me, can now easily monitor heart rate throughout the day.

Doing so is no magic cure.  However I think heart rate (HR) monitoring really helps me to recognize when I am in danger of doing more than my body can manage.

As Prof VanNess explained when he spoke in N.Ireland, the aerobic respiration pathways are broken in ME patients. So the general aim for us is to avoid all aerobic exercise. He suggested keeping HR below 110 beats per minute (bpm) as a useful starting point.

Put simply, “aerobic exercise” is any activity that raises breathing rate, and causes the heart to beat faster.  It is also the type of exercise that is recommended for the general population in order to optimize their health!

However as many people with ME know even small exertions can take a disproportionate toll on our body systems.  “Exercise”, in the conventional sense, is unhelpful at best and potentially harmful at worst.

So what can we do? On the one hand we want to keep as fit and well as we can, and on the other we want to prevent further harm caused by over-exertion.

Prof VanNess suggested that using a HR monitor would enable us to recognise when an activity was becoming a problem.  He suggested stopping mid-activity if necessary, and only continuing once HR had come back down again.

In practice this is much more difficult than it sounds!

Some monitors, like my Mio Alpha, have an alarm feature that alerts the wearer when HR goes up.  I found this helpful to learn how my body feels when HR is high, but I disliked the intrusion so intensely, that I now rarely turn the alarm on. I prefer to keep an eye on my HR by simply glancing at the read out.

At it’s simplest HR monitoring means watching for the activities that overly raise HR and then either working out how to modify the activity, or taking a decision to avoid it.  There are many little changes that can be made to activities to help keep HR low and experimenting, whilst wearing a monitor, can help you to find these tweaks.

Yet, starting with a monitor can be a bit scary, because suddenly you will now “see” all those high HR figures, that previously you didn’t ever record.

So it is worth taking a bit of time to find out what is “normal” for you.

In my experience I can get some very high HR spikes, but these fall again fairly quickly when I rest. My doctor has reassured me that so long as they fall quickly then I should not be too concerned with the momentary spikes.

More of a concern are activities that cause a sustained raised HR. Sadly for me any activity that involves any sort of excitement causes this drawn-out effect.  I’m guessing it is the effect of adrenalin.

And this is where good resting and relaxation habits can help.  Currently my favourite calming activity is listening to David Attenborough’s autobiography on Audible.  Going somewhere quiet, lying down, and just listening helps me to quiet my mind and body - and my heart rate gradually reduces as a result.

I have lots more to say on my experiences using a HR monitor, but for today I’ll end with just a couple more thoughts:

If you are just starting with a HR monitor, then I suggest that you continue to manage your activities in the manner that you already know works for you.  Don’t make any radical changes.

Treat your HR monitor as a friend to help you make adjustments to what you do, but forgive yourself when you can’t keep HR entirely within the desired parameters.  Being totally honest here - I can’t do it! However it is possible to minimize the duration of those higher HR periods and I think, maybe that is good enough.

Good luck!  


PS I’m happy to answer questions about how I use HR monitoring, however I am not able to look at other people’s data and express an opinion, so please don’t ask me, ask your doctor.  Thank you for understanding. xx

You may also find these posts interesting:

Heart Rate Monitoring Posts:
Heart Rate Monitoring: Numbers Dec 2015
Heart Rate Monitoring & NICE Guideline for ME Nov 2015
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
A few notes on using a HR Monitor for Pacing Feb 2014

Thoughts on "Exercise" and ME:
Graded Exercise Therapy? No Thank You! Sept 2015
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014
The Dilemmas of Exercise and M.E.  Dec 2013

General Pacing Posts:
"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
Circles of Influence & ME Aug 2015
Do you STOP soon enough? March 2015
POST Emptive Rest June 2015

Useful Links elsewhere: 
Pacing By Numbers by Bruce Campbell
Exercise Testing and Using a Heart Rate Monitor by Jennifer Spotila


  1. practical, accessible, encouraging and useful as always Sally. Without having been able to try the big guns like ampligen rituximab, anitvirals and immune modulators, IVig or saline or meyers or..............using my HR monitor is the most useful "treatment" for maximizing health I've found in Canada.

    1. Thanks Leela. I appreciate your ongoing support of my writing.

    2. Well done sally xx from Ellen Paterson.

  2. please read and be aware that arobic exercise can be fatal if you have genuine m.e.

    1. It is frightening how harmful aerobic exercise can be for ME patients. I would be interested in finding a reference to fatalities ascribed to aerobic exercise in ME. I don't doubt that it is possible of course. Thank you for pointing out how serious aerobic exercise can be potentially.

    2. I would like to try this technique and have looked at HR monitors on Amazon. The sheer number of products is a bit daunting. It obviously needs to be idiot proof and comfortable to wear .. have you any advice on the best one

    3. My advice is probably a year old now. I have the Mio Alpha and although it is slightly large (for a female wrist anyway) it seems to me to be very good. Certainly it has run without fault for over a year - I just charge it up each night.

      There now seems to be a huge choice out there, and I'm sure there may now be cheaper alternatives that are just as good. Maybe ask on the FB group linked at the bottom of this article?

  3. I read everywhere about how bad the wrist monitors are for keeping track of spikes in the one area we really need, and how inaccurate some are. I'm using the chest strap thingy until I'm used to the idea of monitoring, and have identified the problem areas.

    If I go to the wrist kind eventually, the chest strap one should help identify whether the other is working properly.

    1. Sounds a good plan. Personally I found the chest strap too uncomfortable to use long term. Also my chest band kept loosing signal. The wrist one is more comfortable, doesn't seem to loose signal, and consequently I use it more.

  4. Does monitoring your heart rate help if you're doing something sedentary such as working on a computer? I find mine is quite stable when doing such things although I know that kind if activity has an affect on ME too.

    1. Somedays even typing or interacting on Facebook is more of an activity than you think. I agree though it is likely to be more stable than when you get up and move about. However in my experience you are unlikely to keep turning the monitor on and off, so best to leave it running all day, even when doing things that don't generally cause you bother.

    2. Ah but using computer does cause bother. Brain 'muscles' being used. Not reflected in my heart rate.

    3. I think we are all individual. In my experience brain activities can cause relapse, and I agree it doesn't show up as much on the monitor.... but for me HR did gradually increase over time as I was concentrating.

      I think no monitoring is an absolutely fail safe way of avoiding PEM. Simply each is a tool that you can use to help you. xx

  5. Thanks Sally. Really interesting. Am going to try it. It's the only pacing idea I've come across that I can relate to. Best wishes.

  6. Thanks Sally. Really interesting. Am going to try it. It's the only pacing idea I've come across that I can relate to. Best wishes.