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.