Resource An Overview of Pacing and the Energy Envelope Hypothesis

[Cort]

The "doing too little" thing to me smacks of the deconditioning/exercise phobia hypothesis. We have a hard enough time holding ourselves back from doing too much even when we're really sick. I really can't imagine someone that is doing better holding themselves back too much.

My experience has been that my activity level dynamically expands or contracts to fit my capacity for it. The limitations I impose on myself are constantly calculated by watching symptoms. If I was asymptomatic, I would impose no limitations.

I think it was Ken Friedman who said that he thought that 75% of us were doing too much and 25% were doing too little. I guess that means that no one is doing the right amount (lol).

 

[CathK]

I *finally* gave up on finding a PT who knows anything about this, read some of the papers, and wrote up a summary of the exercise recommendations I found in them. In case anyone finds them useful, here they are: (if anyone wants, I can post the article references)
Staci Stevens, Case Study
* Use HR monitor, stay under AT (pacing)
* Exercise lying down
* Diaphragmatic breathing exercises
* Gentle Stretches; increase to
* Flexibility, resistance, & short-term endurance exercises

Staci Stevens, "A Realistic Approach to Exercise for CFS Patients"
* Start slow
* Gradually increase intensity
* Allow adequate time for recovery between sessions (important!)
* Very brief periods of activity (30 sec. or less) followed by at least 1 min. of rest
* Single session not over 20 min.

Staci Stevens et al, "Conceptual Model for PT Management of CFS/ME"
Pacing
* Stay below AT during daily activities
Frequent breaks w/ diaphragmatic breathing
alternate positions
use adaptive equipment
* Keep an activity log
Exercise
* Prevent excessive use of aerobic system
* Start w/ stretching and active range of motion exercises
* Advance to strength training: short duration, low intensity strengthening w/ adequate rest intervals
* Finally, advance to short duration, low intensity interval training. Limit activities to under 2 minutes, 10% below HR at AT

Betsy Keller, email
* keep HR below 100 [or AT]
* 30-45 sec. bouts of light resistance exercise, followed by 3-4x that amount of rest (e.g., 3x30, or 90 sec. rest)
* limit total workout to 20 min.; then
* Rest for 30 min. or more

Estimate AT - from Jenny Spotila's blog, occupycfs.com/exercise-testing-and-results/
Klimas & Sol: (220-age)*0.6 = AT
Staci Stevens: (220-age)*0.5 = AT

 

[madie]

I started stretching exercises a few weeks ago, and it got to be too much. I've switched to stretching on my bed before getting up, always lying flat. This
is working very well.
There are no HR issues with gentle slow stretching, and it doesn't feel like I'm stressing anything. I can work a lot on my very tight neck and spine by hanging my head off the side of the bed - no effort at all.

 

[Joanna]

@Seven
I was glad to read this in the thread while deliberating about which HR monitor/fitness tracker to buy. They are too expensive to risk making a mistake. I bought the Mio Fuse a few weeks ago, and have found it to be really difficult to understand. I am finally working it out how to get it to do what I want with the MIO GO app. I had to watch at least 10 YouTube videos of other people demonstrating it, as the instructions were vague and incomplete, I thought. Still, it's a really good monitor, and I like that I can wear it when I have a bath.

But I wonder if you found a way to get the graphs printed. I would like to show my doctors a picture of how often I am actually 'exercising' as I keep getting lectured about 'not lying in bed all the time'. I have OI and was on Midodrine for several months to raise my blood pressure, but I found the side effects were not worth it and it didn't seem to help me be able to remain upright longer either sitting or standing. I honestly think that the energy is just not sufficient to sustain sitting and standing, when I have so much pain a lot of the time, and when I must get myself to and from the toilet several times a day which raises my HR to above the AT for a few minutes minimum. (I have IBS plus drinking a lot of water as instructed means more trips to the toilet.)

The only thing I have done to improve my condition was to lie down flat more often, and to take more frequent rests with my eyes closed. However, I find that I can't manage to do that for long unless I drift off to sleep, as the pain is so prominent in my mind that I am literally driven to reading or doing a puzzle or turning on YouTube just to distract from the pain I am always in. I am in bed most of the time, and most of that is lying almost flat with my knees slightly raised.

I would really like to hear how you use your MIO wristband to track and monitor. I need a little help to get the best usage for our needs as opposed to sports training and step counting. It can't count my steps anyway because I have to walk leaning on a 4-wheel trolley or I would be even more bed bound and fall frequently.

 

[waiting]

I'm posting here in response to a comment on Cort's recent article on Dr. Lapp's retirement in which Dr. Lapp stated that "the most important aspect of management is pacing (balancing rest with activity)..." and "That’s when we started working with Staci Stevens, Chris Snell, Mark VanNess, etc., to discover that the anaerobic threshold (AT) was key. Thereafter, we learned to keep PWCs within their AT to prevent flares and relapses."

An HR commenter asked if someone could explain “anaerobic avoidance strategy” vs. "aerobic threshold". I think this is the relevant thread in which to post a response. Here's my 2 cents.

It is common to get confused re: anaerobic vs. aerobic. This is my (non-physiologist!) understanding:

First, definitions: ANAEROBIC means 'without oxygen', whereas AEROBIC means 'with oxygen'.

There are actually TWO different types of ANAEROBIC energy that come into play when one engages in an activity. The first type of ANAEROBIC activity is when we initially engage in an activity. It is normal to use this type of anaerobic system. It is ONLY used for up to the first 2 minutes of an activity, at which point AEROBIC energy kicks in. This is normal for people who are healthy or who have other diseases, who can then go on to use their aerobic systems all day long. However, for PWME's (people with ME/CFS), the aerobic system is broken. Instead of using AEROBIC energy (even for what would be low-exertion, minor activities for a healthy person - or a person with another disease), our bodies go into ANAEROBIC metabolism, sometimes after only a few minutes!

No-one can stay in ANAEROBIC metabolism for very long -- nor without physical cost (e.g. witness a healthy marathon runner at the finish line) -- and PWME's have a severe, lengthy, prolonged cost - in the form of PEM (post-exertional malaise). PWME's want to avoid PEM as much as possible, of course (even though it's often unavoidable -- like going to a doctor appointment, or making a meal, taking a shower, etc.).

The point at which we go into ANAEROBIC metabolism can be measured using the heart rate. It's called HR at the ANAEROBIC THRESHOLD (HR @ AT). This can ONLY be definitively measured if you undergo a cardiopulmonary exercise test (CPET). Importantly, if you are a PWME, your HR @ AT can ONLY be definitely measured by a 2-day CPET (2 tests on consecutive days, not just one test on one day). Staci Stevens, the founder of Workwell Foundation, who discovered PWME's inability to reproduce physiologic measures on the 2nd day of a CPET, can do this test for you, as can Betsy Keller (Ithaca, NY). The HR @ AT measure for PWME's can drop - sometimes by a LOT - on the Day 2 test, so you want to know your Day 2 measure.

Without the benefit of a 2-day CPET, I have read Mark VanNess (also of Workwell Foundation) state that a general guideline for PWME's is to at least stay under a heart rate of 110 BPM. PWME's can have a HR @ AT much lower than that. To know what your heart rate is, PWME's should wear a heart rate monitor (one that continuously measures your heart rate, plus has an alarm that sounds when you reach your HR @ AT -- that you pre-set).

An additional way to monitor your level of exertion is to use the Borg Scale for Rate of Perceived Exertion -- PWME's want to stay under 13 on this scale (which feels like "somewhat light" exertion).

If this is about as clear as mud, I recommend you check out the Resources section on the Workwell Foundation website.

In particular, check out the 2nd YouTube video down: "How to do more with less: Staci Stevens". The entire video is very useful, but if you go to the 32:11 minute mark, Staci explains the ANAEROBIC and AEROBIC energy systems with a great graph (which cleared up the confusion for me!). And if you go to the 42:03 minute mark, Staci explains the "Rate of Perceived Exertion" with an excellent colour-coded chart (which I recommend printing out!).

I hope this helps.

 

[Cort]

I'm posting here in response to a comment on Cort's recent article on Dr. Lapp's retirement in which Dr. Lapp stated that "the most important aspect of management is pacing (balancing rest with activity)..." and "That’s when we started working with Staci Stevens, Chris Snell, Mark VanNess, etc., to discover that the anaerobic threshold (AT) was key. Thereafter, we learned to keep PWCs within their AT to prevent flares and relapses."

An HR commenter asked if someone could explain “anaerobic avoidance strategy” vs. "aerobic threshold". I think this is the relevant thread in which to post a response. Here's my 2 cents.

It is common to get confused re: anaerobic vs. aerobic. This is my (non-physiologist!) understanding:

First, definitions: ANAEROBIC means 'without oxygen', whereas AEROBIC means 'with oxygen'.

There are actually TWO different types of ANAEROBIC energy that come into play when one engages in an activity. The first type of ANAEROBIC activity is when we initially engage in an activity. It is normal to use this type of anaerobic system. It is ONLY used for up to the first 2 minutes of an activity, at which point AEROBIC energy kicks in. This is normal for people who are healthy or who have other diseases, who can then go on to use their aerobic systems all day long. However, for PWME's (people with ME/CFS), the aerobic system is broken. Instead of using AEROBIC energy (even for what would be low-exertion, minor activities for a healthy person - or a person with another disease), our bodies go into ANAEROBIC metabolism, sometimes after only a few minutes!

No-one can stay in ANAEROBIC metabolism for very long -- nor without physical cost (e.g. witness a healthy marathon runner at the finish line) -- and PWME's have a severe, lengthy, prolonged cost - in the form of PEM (post-exertional malaise). PWME's want to avoid PEM as much as possible, of course (even though it's often unavoidable -- like going to a doctor appointment, or making a meal, taking a shower, etc.).

The point at which we go into ANAEROBIC metabolism can be measured using the heart rate. It's called HR at the ANAEROBIC THRESHOLD (HR @ AT). This can ONLY be definitively measured if you undergo a cardiopulmonary exercise test (CPET). Importantly, if you are a PWME, your HR @ AT can ONLY be definitely measured by a 2-day CPET (2 tests on consecutive days, not just one test on one day). Staci Stevens, the founder of Workwell Foundation, who discovered PWME's inability to reproduce physiologic measures on the 2nd day of a CPET, can do this test for you, as can Betsy Keller (Ithaca, NY). The HR @ AT measure for PWME's can drop - sometimes by a LOT - on the Day 2 test, so you want to know your Day 2 measure.

Without the benefit of a 2-day CPET, I have read Mark VanNess (also of Workwell Foundation) state that a general guideline for PWME's is to at least stay under a heart rate of 110 BPM. PWME's can have a HR @ AT much lower than that. To know what your heart rate is, PWME's should wear a heart rate monitor (one that continuously measures your heart rate, plus has an alarm that sounds when you reach your HR @ AT -- that you pre-set).

An additional way to monitor your level of exertion is to use the Borg Scale for Rate of Perceived Exertion -- PWME's want to stay under 13 on this scale (which feels like "somewhat light" exertion).

If this is about as clear as mud, I recommend you check out the Resources section on the Workwell Foundation website.

In particular, check out the 2nd YouTube video down: "How to do more with less: Staci Stevens". The entire video is very useful, but if you go to the 32:11 minute mark, Staci explains the ANAEROBIC and AEROBIC energy systems with a great graph (which cleared up the confusion for me!). And if you go to the 42:03 minute mark, Staci explains the "Rate of Perceived Exertion" with an excellent colour-coded chart (which I recommend printing out!).

I hope this helps.

Very impressive Waiting! Thanks!