1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

Why NOT exercise?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Keela Too, May 13, 2014.

  1. Keela Too

    Keela Too Senior Member

    Messages:
    209
    Likes:
    423
    N.Ireland
    Wildcat, SDSue, rosie26 and 3 others like this.
  2. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

    Messages:
    2,250
    Likes:
    1,437
    Left Coast
    @Keela Too So I guess reaching for the remote is also not exercise? Obviously these people don't have ME since even that gets my heart rate up as does washing dishes or drying off after a shower (If I have the energy to take one that is).
    Thanks for the rebut.
    SDSue and Keela Too like this.
  3. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    It needs exorcised!:p
    SDSue, Cheesus, rosie26 and 4 others like this.
  4. vamah

    vamah Senior Member

    Messages:
    582
    Likes:
    660
    Washington , DC area
    This was a really good piece. Thanks!
    rosie26 and Keela Too like this.
  5. Artstu

    Artstu Senior Member

    Messages:
    184
    Likes:
    73
    UK
  6. Keela Too

    Keela Too Senior Member

    Messages:
    209
    Likes:
    423
    N.Ireland
    That's interesting. Dr VanNess talks about the aerobic system being broken and that we therefore should NOT be raising our heart rates into the aerobic zone.

    Dr Klimas in the article linked in the post above seems to suggest it is only when exertion exceeds the aerobic capacity that we hit problems... and she seems to think we can exercise aerobically...

    I suppose it's the same thing - sort of - if our aerobic system doesn't work right, then we will quickly exceed what little aerobic capacity we have.

    Personally I still feel that the word "exercise" is WRONG WRONG WRONG! This because it encourages physios etc. to apply the term in the conventional sense of cardio workouts and building up a bit of a sweat.

    Activities of daily living should never be described as "exercise". In the conventional sense they are NOT. They may be an exertion to an ME patient, but they are not conventional exercise.

    Helping individuals to maximise their abilities, by helping them find ways to pace appropriately, is not the same as an exercise programme!

    Just my views of course.
    ahimsa, justy, Valentijn and 3 others like this.
  7. alex3619

    alex3619 Senior Member

    Messages:
    7,222
    Likes:
    11,337
    Logan, Queensland, Australia
    This is about special meanings of words. The word "recovery" used in the PACE trial describes a state in which many patients will still be highly disabled. The word "exercise" used by exercise physiologists covers a wide range of things. I agree that specialist definitions that can be confused with the common definition should not be used. For example, rather than use "exercise" we need a word that means "sub-aerobic sub-anaerobic exercise", indicating the aerobic anaerobic threshold is not crossed.

    PS Thanks go to someone who pointed out my error with aerobic and anaerobic.
    Last edited: May 13, 2014
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,971
    Likes:
    4,951
    Sth Australia
    I completely agree and I guess we should try to crack down on comments in media etc which call activities of daily living- "exercise" as such as it does add to the confusion out there.
    ahimsa and Wildcat like this.
  9. Keela Too

    Keela Too Senior Member

    Messages:
    209
    Likes:
    423
    N.Ireland
    This is interesting. When Dr VanNess spoke in N.Ireland he talked of not doing AEROBIC exercise. Obviously normal acitivity uses oxygen, but "aerobics" and "aerobic exercise" is when you increase your heart rate etc. by doing more than the normal. He was clear that our "aerobic" mechanism was not working properly and we should NOT be doing aerobic exercise.

    My previous understanding was that we had a much lowered ANaerobic threshold and that we therefore couldn't exercise so hard as to cross that threshold. Perhaps this IS what he means, but I found the way he talked about aerobic/anaerobic a bit confusing.

    One message he did give was keeping HR low, and if that meant resting half way up a flight of stairs to avoid going over 110 bpm (or individual threshold) then that is what we must do!
    Valentijn likes this.
  10. SDSue

    SDSue Florida

    Messages:
    459
    Likes:
    969
    Florida
    This is so very aggravating and confusing to me - partly because I loved exercise and manual labor, and partly because I can't begin to follow the recommendations of Klimas, et al.

    I literally cannot walk to the restroom without sweating and my HR going over 120, which seems to be my "magical" number for aggravating my symptoms. I can't even get "upset" by anything or my heart rate can soar over 150 while I'm reclining.

    Clearly, my body IS exercising quite hard just to exist. I don't know how to stop that.

    I would have to lie in a dark room, never get upset, never do anything, in order to have a shot at recovery? I don't get it. I really don't.

    Can anybody clarify all this or offer suggestions?
    Wildcat and rosie26 like this.
  11. Mij

    Mij Senior Member

    Messages:
    665
    Likes:
    702
    How long have you been ill? I did exactly what you are doing now during the first 10yrs of this illness. I did NOTHING, literally. Looking back, I am very glad I stayed lying down most of my existence because I feel it was a big part of my own personal improvement. I really don't get the word "exercise" either, I'm also not sure whether Dr. Klimas is recommending it, she might be referring to just some of her patients who have reached a level of improvement and are closely monitored, example HR etc.

    I gradually started to improve with no treatments, so for some of us (hopefully you too) we can improve. Unfortunately I overdid it with aerobic exercise initially and that was a mistake- I learned the hard way. I can now power walk x3/week as long as I space rest time in between and plan it around other activities such as
    grocery shopping (I have a friend drive me), appointments etc and as long as I don't have anything viral/immunological affecting my system.

    So some of us can exercise but for me I believe what I can manage now is probably where it will stay, I can't increase my activity.
    rosie26, SDSue and Valentijn like this.
  12. SDSue

    SDSue Florida

    Messages:
    459
    Likes:
    969
    Florida
    Ill for 10 years - 7 spent in downward spiral of boom and bust until I became housebound/bedbound almost 3 years ago.

    Unfortunately, every time I felt better during the first 7 years, I launched into extreme exercise regimens. Little did I know then.

    Was yours a sudden or gradual onset? Also, I'm guessing that I'm a lot older than you are? But your story is quite encouraging :)
    Mij likes this.
  13. alex3619

    alex3619 Senior Member

    Messages:
    7,222
    Likes:
    11,337
    Logan, Queensland, Australia
    What we call aerobic exercise, from my understanding, is when we increase demand on the aerobic energy pathways, the mitochondria then increase energy production, and the body mobilizes fat to produce energy. This is what does not happen in us ... the metabolic capacity of the mitochondria has serious limits and does not increase like it does in healthy people, or for that matter in sick people who do not have ME.

    At rest we are operating aerobically. Everything we do at a low demand is aerobic. However I do not know if this is really true of ME patients, and especially not severe ME patients. I think bedbound patients might in many cases be pushing their anaerobic threshold, or at least their aerobic threshold, at rest. This is only a suspicion, not a fact as yet.

    When exercising "aerobically" the body is mainly increasing energy by using stored energy. This burns out and you hit what runners call "the wall'. Then as the body increases cortisol ( I think) and mobilizes fat and acidifies the blood from lactic acid so it dumps more oxygen, the mitochondria starts producing more energy aerobically. This is what most would call aerobic exercise I think. This is what we cannot do well, and do less well the sicker we are.
    rosie26 and Valentijn like this.
  14. SDSue

    SDSue Florida

    Messages:
    459
    Likes:
    969
    Florida
    @alex3619 The only way I can keep it straight is to compare jogging with sprinting: sprinting being an all-out effort of short duration (anaerobic) while jogging is a sustained effort (aerobic).

    Just like the sprinter whose legs wobble, heart races, lungs cry, and brain goes foggy if the sprint is maintained for longer than the body can manage, so are my trips to the restroom. Is this because I, like the sprinter, have gone anaerobic? What if these symptoms persist even after rest? Am I then still in anaerobic territory?

    If so, that means many of us with POTS/dysautonomia spend a significant amount of our time anaerobically, which by definition should be impossible. Hence the collapses.

    If we are indeed anaerobic most of the time, then what? Seems like an endless loop.
    rosie26 likes this.
  15. Mij

    Mij Senior Member

    Messages:
    665
    Likes:
    702
    I had a sudden viral onset, I even remember the time. I'll be 52 on Sunday:woot: Wow it's weird to see that in writting- lol Yeah, I'm afraid a lot of us were eager to start exercising again, I was warned not to though by my ME specialist at the time, so I only have myself to blame. He told me very clearly 22yrs ago, to do nothing, even when I feel better.
    rosie26 and SDSue like this.
  16. SDSue

    SDSue Florida

    Messages:
    459
    Likes:
    969
    Florida
    I was warned, too. But you see, I was much smarter than those who warned me lol. So yeah, I have only myself to blame as well.

    That being said, however, I really don't blame myself much. This disease goes against all wisdom, experience, and convention. I HAVE this disease and I can't explain it to those who don't. So how could I or any of us be expected to really grasp what we were up against?

    PS: 53 here!
    rosie26 and Mij like this.
  17. Mij

    Mij Senior Member

    Messages:
    665
    Likes:
    702
    When I became ill there was no internet, so I wonder if I knew what I know now back then if I would have done less? maybe, but maybe not. When we feel "good", it's very easy to forget those days when we felt bad.
  18. alex3619

    alex3619 Senior Member

    Messages:
    7,222
    Likes:
    11,337
    Logan, Queensland, Australia
    I think we have only so much stored energy, and only so much available via anaerobic production. Our aerobic is flatlined. Once we burn through our stored energy, it takes time to replace. Its why we pace. So any training for us, as in real exercise, has to be low demand, and based on intervals. It makes it so hard.

    When you run out of that stored energy you need aerobic energy ... and we don't have enough. So the body uses glycolysis to make lactic acid for energy. We are very much like that sprinter after an all out run, but the sprinter can get energy from increased aerobic metabolism and recover faster, we can't.
  19. alex3619

    alex3619 Senior Member

    Messages:
    7,222
    Likes:
    11,337
    Logan, Queensland, Australia
    Which is why doctors, family, media and the public are so clueless General intuition and assumptions fail with this illness.
  20. SDSue

    SDSue Florida

    Messages:
    459
    Likes:
    969
    Florida
    This makes sense. I have 30 seconds of stored energy. No more. If I exceed that 30 seconds, I get in real trouble fast. What's amazing is that this 30 seconds has remained very constant. (If I overdo, however, it drops faster than the popularity of PACE trials.)

See more popular forum discussions.

Share This Page