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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

SOC

Senior Member
Messages
7,849
I have been as active as I can be using heart rate monitoring. I think it's a great tool for knowing my limitations and staying within them while getting the most out of my life. Having the CPET testing is critical to that. Unfortunately, most PWME don't have that information and are stuck guessing what is the right amount of activity.

I am entirely in support of PWME being as active as is safe for them and avoiding deconditioning when possible. I think this group can help people who are well enough and have the resources/information they need to exercise safely.

Please understand that I am very much in support of appropriate activity management and exercise for those PWME who can tolerate it. I think a support group is a great idea. I'm merely suggesting that the attitude expressed here about people who genuinely can't exercise (or don't have the resources or information to do proper HR monitoring) may be putting off more people than just me.
 
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lartista

Senior Member
Messages
139
Could you post the safe way to exercise here as I dont want to join facebook.

Or alternatively, could other PR members highlight the important bits.

I may try buying a heart rate Monitor...i dont know.
I am sorry but no....
 

Artstu

Senior Member
Messages
279
Location
UK
I wonder how the percentages compare between healthy individuals and CFS/ME sufferers who exercise. Perhaps the percentages mirror the general population?
 

SOC

Senior Member
Messages
7,849
Could you post the safe way to exercise here as I dont want to join facebook.

Or alternatively, could other PR members highlight the important bits.

I may try buying a heart rate Monitor...i dont know.
I am sorry but no....

I'm not sure why lartista doesn't want to share information, but you can find some of it by reading up on the work of the folks at Workwell Institute and Connie Sol at Dr Klimas' Institute of Neuroimmune Medicine.

First and foremost, you need to know your anaerobic threshold. This is something that needs to be tested. Standard formulas that apply to healthy people DO NOT apply to us and can be dangerous. You need to have a CPET test, preferably one done by someone familiar with ME/CFS so they don't massively crash you. There's some question as to whether a 2-day CPET gives a more appropriate AT than a single CPET.

Once you know the heart rate at which you enter the higher anaerobic metabolism (your anaerobic threshold or AT), you keep your everyday activity some amount below that and your limited exercise (1-3 minutes at a time) just below your AT.

By exercising in 1-2 minute sessions followed by 5-10 minutes of supine rest several times a day (the appropriate length of exercise varies somewhat from person to person), it is thought that you can improve your lower level anaerobic metabolism (to a degree) so it can compensate for some of the failure of aerobic metabolism.

I have heard that one (or more) of the exercise physiologists has provided a rough guess formula for estimating a safe AT for PWME who don't have access to CPET testing. My vague memory is that it was something like (220-age) x 0.60, but I wouldn't rely on my memory. ;) You could probably search PR for it. Be cautious if you use it, though, because it is a very broad generalization that may not apply to all PWME, especially those at the more severe end of the spectrum.
 
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15,786
I think safe exercise is an interesting idea for those who have the energy to spare. Limiting the attempt to people with at least a score of 6 on an activity scale is a good start, because it acknowledges that some of us are to ill to attempt exercise while struggling with basic daily functioning.

Seeing an expert does not make you an expert. And even the expert is aware that she is exploring a theory, not something which has objectively been shown to be effective in a research setting.
 
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Messages
15,786
My vague memory is that it was something like (220-age) x 0.60, but I wouldn't rely on my memory.
That's what I remember too, and it works out to the value I got when calculating it previously. I think it's a pretty good starting point, though of course it's very helpful to track heart rate and see what your threshold is to start feeling crappy. Then stay a good bit under that :p

From what I recall from a lecture by one of the experts, a reasonable goal for a moderate-to-severe patient was working up to being able to walk up and down a flight of stairs without crashing, after a year of training for it. And that training required the patient to forgo other daily activities to focus on that one activity.
 

SOC

Senior Member
Messages
7,849
That's what I remember too, and it works out to the value I got when calculating it previously. I think it's a pretty good starting point, though of course it's very helpful to track heart rate and see what your threshold is to start feeling crappy. Then stay a good bit under that :p
For me, and this may not be true for other people, my threshold for feeling crappy was way above my AT. So staying a good bit under that is a good idea. :thumbsup: An indicator I've noticed is how fast my HR is climbing as I go about my daily activities. If it's generally constant, or climbing slowly, I'm okay. As soon as I see it starting to climb rapidly, I'm approaching my AT and need to quickly go to supine rest mode.

From what I recall from a lecture by one of the experts, a reasonable goal for a moderate-to-severe patient was working up to being able to walk up and down a flight of stairs without crashing, after a year of training for it. And that training required the patient to forgo other daily activities to focus on that one activity.
Sounds like what I heard, too. Truth be told, though, my ability to climb a flight of stairs didn't come as a result of any exercise program. For me it came from 1) treating pathogens, and 2) staying below my AT all the time so I didn't have crashes.

My personal preference is to increase my activities of daily living when I can while staying below my AT, rather than "exercise" at the expense of function. The end place is still the same. I think this is usually the advice of exercise physiologists knowledgeable about ME/CFS. I don't think they recommend exercise at the expense of function as a general rule.

That said, a person with mild ME who can work full-time, do housework, and engage in social activities probably doesn't have to sacrifice function to do light exercise and would probably benefit from deliberate exercise for the sake of exercise in order to improve physical conditioning.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
As high as 80% don't do enough exercise, not much hope for CFS/ME sufferers then.

http://www.cbsnews.com/news/cdc-80-percent-of-american-adults-dont-get-recommended-exercise/

To quote:
The U.S. government recommends adults get at least 2.5 hours of moderate-intensity aerobic exercise each week or one hour and 15 minutes of vigorous-intensity activity, or a combination of both. Adults should also engage in muscle-strengthening activities like lifting weights or doing push-ups at least twice per week.

This is a recommendation for average adults--not adults with ME/CFS! As any ME/CFS specialist will tell you, this level of exertion for their patients is contraindicated.

Our aerobic system is "broken" and we almost immediately switch to anaerobic. However, some ME/CFS specialists will suggest that (if you have improved and are functioning at a quite high level) that you experiment with exercising with a heart rate monitor for short periods, as long as you stay below your anaerobic threshold--which is extremely low for most of us.

Sushi
 

SOC

Senior Member
Messages
7,849
It tells you in the article.
No, it doesn't. It talks about standard generalized exercise recommendations for healthy people, and obesity. It doesn't specify what the goal of the "enough exercise" is -- aerobic fitness, specific level of muscle strength for given activities. Totally not applicable to people with ME/CFS.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@larista, thanks for the info about the group. I have joined, but see now from this thread that it is only suitable for those with a certain level of functioning -level 6 on the Lerner scale has been suggested, can you please confirm or refute this for me?

Many thanks,
Justine
 

SOC

Senior Member
Messages
7,849
@larista, thanks for the info about the group. I have joined, but see now from this thread that it is only suitable for those with a certain level of functioning -level 6 on the Lerner scale has been suggested, can you please confirm or refute this for me?

Many thanks,
Justine
@justy
This is from the original post in this thread --
Are you an ex-athlete living in lust of one day... maybe one day I can do something?
Do you have or use a cardio chest belt with a watch to record your heart rate?
Do you walk but want to step it up?
Are you at least a 6 on Dr. Martin Lerner's Energy Point Index Scale?
[my bolding]
 
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10,157
Please note, we have removed quite a few posts on this thread because they were rule breaches (personal attacks, provocative, inflammatory). Some posts were removed because they were no longer applicable because they were quoting material that has been removed.

Please stay to the topic at hand and avoid personal attacks.

Thank you.

Kina.
 

SOC

Senior Member
Messages
7,849
@Artstu
Is this info from your profile still true?
Activity level: 3
Most effective treatment: High intensity exercise at or above 80% of max tested heart rate.

Or has high intensity exercise improved your condition above activity level 3 since you've been doing it? What symptoms has high intensity exercise improved for you since you've been doing it? What can you do in your life you couldn't do before high intensity exercise -- showering, cooking, housework, stair climbing, grocery shopping, working at a paying job?