Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, August 29, 2012

Video Explains How to Use Heart Rate Monitor to Avoid Post Exertional Malaise in ME/CFS

This excellent recent webinar, which has been uploaded to YouTube, explains how to avoid crashes from post exertional malaise (PEM).  It was hosted by the CFIDS Association of America and includes three panelists from the Pacific Fatigue Lab at the University of the Pacific in Sacramento, California.  All three of the panelists appear to be highly regarded researchers in the field.

The total run time of the video is approximately an hour and 40 minutes.  The first hour features the panel answering 10 frequently asked questions about PEM.  The remainder features questions from the online audience.  For those who don't have the time or mental energy to watch the whole video, I'd like to suggest skipping to a couple key highlights.

Question #6 - 25:30 to 29:30

This brief 4 minute segment explains what kinds of life events typically cause a crash, and emphasizes how the threshold is usually much lower than patients expect it to be.  This might be a good segment to show to family and friends who have a hard time understanding why you need to avoid even relatively low key activities.  

Question #7 - 30:24 to 42:30

This 12 minute segment explains how to use a heart rate monitor (HRM) to avoid crashing and to get off of the push/crash cycle.  The best advice was to set your heart rate monitor's alarm to sound when your heart rate reaches 10 bpms below your anaerobic threshold (AT). When you hear the alarm go off, you're supposed to stop what you're doing until your heart rate goes down.  The panelists say that one can control the frequency of crashes if they remain disciplined with this approach.   

Somewhat frustratingly, the panelists make every effort to avoid suggesting a formula for determining one's AT.  (Such formulas, however, are widely available in other places, such as here in Sue Jackson's blog).  Rather, they emphasize that one can only determine his/her AT through careful trial and error with a HRM.  They also state that a person's AT varies from day to day depending on whether the person is crashed.  While that may be true, it's nice to use an AT formula as a starting point.

When pressed for a more specific answer later in the presentation, one of the panelists stated that most PWMEs have an AT between 90 and 115.  She said it is rare for a PWME to have an AT above 115, but a few are in the 115 to 120 range.  (See video at 128:00)

Other Notable Segments    

44:40 - Patients can raise their AT over time if they are careful and avoid the push/crash cycle.  

45:00 - How to prepare an exercise plan that stays within your limits.

47:50 - Standing requires 25% more energy than sitting.  Any activity that can be done sitting should be done sitting.  PWMEs need to save whatever energy they can and bank it for later. 

49:30 - One panelists suggests that PWMEs should "use the power of blue" and obtain a handicapped parking pass.  Even the evergy saved by walking 20 or 30 fewer yards is critical for PWMEs.  The panelist notes that many PWMEs don't like to think of themselves as handicapped, but the objective data from exercise fitness tests shows that they are functioning at a lower level than people with severe heart conditions.

106:00 - There are no reliable studies that show that CoQ10 supplementation helps avoid or recover from PEM crashes.

132:00 - The only "treatment" the panelists believe may aid recovery from PEM, besides rest, is drinking water, particularly with small amounts of salt.  


  1. It's nice to have something objective like this to go by for crashes. Nice find:)

    For avoiding non-exercise related crashes, I've noticed a few key factors for me to focus on, like
    1) Don't force wakeup times. Let the body wake up naturally. This is HUGE for me.
    2) Solid, deep, refreshing sleep 90% of the time at least. I know high quality sleep is a challenge for most PWCs, but figuring out the sleep conundrum is crucial.
    3) Watch stress levels. If stress is rising (long drives in bad traffic do this to me), find a way to avoid that type of situation.

    1. I'm glad you brought up #3 Greyson. There's an interesting segment in the video where they talk about how it's not always physical activities that make one crash, but stress can have the same effect. (It's in the Question #6 section). One of the panelists says that for PWME's, it doesn't matter if it's good or bad stress. He talks about how the clinical definition of stress is simply major changes in one's routine or lifestyle, and that clinically speaking, positive events are still considered "stressful." He went on to explain that studies have shown that even positive stress events cause crashes for PWMEs.

  2. I've been using a heart rate monitor for almost a year now with great success. Initially I did wear it all day & it was good to learn what normal everyday activities put my heart rate up. But as you say it is uncomfortable & unfortunately I find that my HRM can be a bit faulty and looses contact with my heart when I wear it for longer periods of time. So now I use it mostly for exercise & activities like shopping. Its great to be able to see when its safe enough to do these things & when I need to rest. And wonderful to be able to do a small bit of exercise like going for a walk with less of a chance of a crash. Its not perfect but definitely one of the more useful tools I've found for pacing. I couldn't do without it now!

    1. Thanks for sharing your experiences with a HRM Miriam. I am slowly starting to discover the same benefits that you described. It is a great to know that other PWME's have found them useful in the same ways.

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