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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

Discussion in 'Lifestyle Management' started by lartista, May 3, 2014.

  1. golden

    golden Senior Member

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    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.
  2. SOC

    SOC Moderator and Senior Member

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    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.
    Last edited by a moderator: May 15, 2014
  3. lartista

    lartista Senior Member

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    I am sorry but no....
  4. Valentijn

    Valentijn Activity Level: 3

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    Why not?
  5. Artstu

    Artstu Senior Member

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    I wonder how the percentages compare between healthy individuals and CFS/ME sufferers who exercise. Perhaps the percentages mirror the general population?
  6. SOC

    SOC Moderator and Senior Member

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    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.
    golden, justy and Valentijn like this.
  7. Valentijn

    Valentijn Activity Level: 3

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    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.
    Last edited by a moderator: May 15, 2014
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  8. Valentijn

    Valentijn Activity Level: 3

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    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.
    golden and justy like this.
  9. Mij

    Mij Senior Member

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    I can power walk x3 week when I'm having good days. I'm not "frozen" into negatively on days I can't exercise. @lartista I also think that "movement" is a good term to use instead of exercise on days for those who can't.
    Last edited: May 4, 2014
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  10. Artstu

    Artstu Senior Member

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  11. SOC

    SOC Moderator and Senior Member

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    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.

    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.
  12. SOC

    SOC Moderator and Senior Member

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  13. Artstu

    Artstu Senior Member

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    It tells you in the article.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    To quote:
    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
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  15. SOC

    SOC Moderator and Senior Member

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    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.
    beaker, Sushi and Valentijn like this.
  16. justy

    justy Senior Member

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    @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
    golden and Kina like this.
  17. SOC

    SOC Moderator and Senior Member

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    @justy
    This is from the original post in this thread --
    [my bolding]
    justy likes this.
  18. Kina

    Kina Moderation Team Lead

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    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.
  19. TigerLilea

    TigerLilea Senior Member

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    To reduce the risk of developing heart disease, diabetes, cancers, and keeping your body strong enough to enjoy your 60s, 70s, 80s, and 90s instead of being decrepit and having to live in a long-term care home.
    Artstu likes this.
  20. SOC

    SOC Moderator and Senior Member

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    @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?
    golden and Valentijn like this.

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