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CFS anaerobic exercise protocol (Staci Stevens): Can anyone explain it?

Discussion in 'Lifestyle Management' started by Sasha, Mar 23, 2010.

  1. kerrilyn

    kerrilyn Senior Member

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    That sounds like a great idea. I've seen in other areas of the forum where people mention her in high regard (the only 'positive or approved' exercise discussion for example) and newbies (like me) would benefit from learning more about it.
  2. Sasha

    Sasha Fine, thank you

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    Oooh, great idea, Lesley! Apparently people can submit questions (not sure if it's live during the webinar or if you can do it in advance).
  3. Mithriel

    Mithriel Senior Member

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    I think some of the confusion comes from sports terminology as opposed to biological terminology

    Cellular respiration - to get energy for the cells to work - can be aerobic or anaerobic.

    Very simplified it works like this.

    Aerobic respiration happens in the mitochondria and uses glucose and oxygen with end products of water, carbon dioxide and ATP (which cells use for energy.)

    If there is not enough oxygen available, such as when you make demands on your muscles by running for a bus or doing heavy exercise, the cells have to switch to anaerobic respiration which has an end product of lactic acid and much less ATP. You then need oxygen to metabolise the lactic acid away.

    This oxygen debt is why you pant and the lactic acid causes the stitch in your side.

    In ME the mitochondria, which is where respiration occurs, don't work properly so we switch to anaerobic respiration much sooner than healthy people. We build up lactic acid which causes muscle pain and we don't produce so much of the ATP we need.

    It's probably a gross over simplification, but I have always thought of it this way. If we stay within the limits of our mitochondrial capacity to keep doing aerobic respiration we don't do ourselves any damage. When we make demands that can't be met then anaerobic respiration starts. It is a vicious circle because we don't have the capacity to burn up the lactic acid - not enough oxygen - so we poison our cells.

    I am not sure how this all helps with regaining fitness and strength.

    I tried exercising for 1 minute then laying on the bed for twenty but I put myself into a relapse!

    What worked quite well for me was to gradually do a little bit more around the house. I would walk to the kitchen, that sort of thing. I am so limited that doing exercises rather than something useful seemed an awful waste.:Retro smile:

    At the time my grandson was small and my daughter and my mother were with me most days. I gradually managed to take a few steps into the garden. By the next Summer I managed to sit at the table and pot out some hanging baskets. It was wonderful.

    But I was no better, just stronger. When my mother died and my daughter started at university I had no one to help me so I lost all the fitness again.

    Mithriel
  4. fingers

    fingers Senior Member

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    Great post Mithriel, I was going to quote it selectively, but it's all good.

    I really don't understand how high intensity can help anyone with ME, and that's the only way to do anaerobic instead of aerobic.

    De-conditioning may be a factor in lowering AT, so I think it's a constant balance trying to stay reasonably fit vs. PEM.

    I also agree, we need to ration our energy to doing productive things, and if we're smart this can constitute equivalent exercise as well.

    F
  5. Mithriel

    Mithriel Senior Member

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    OK, I have got curious about this. (I was a biologist in another lifetime)

    It is probably best if you could find out from Staci Stevens what she means about exercise and strengthening for CFS but I looked up wikipedia.

    http://en.wikipedia.org/wiki/Aerobic_exercise

    In the same way that respiration means cellular metabolism but also means the breathing system aerobic in the exercise sense means ones which strengthen the aerobic system while anaerobic means ones that make the anaerobic system more efficient.

    I think it is saying that aerobic exercise tries to keep the body using glucose and oxygen for as long as possible but anaerobic exercise is very intense so it quickly goes past the threshold where there is oxygen available to anaerobic metabolism.

    Every time you do aerobic exercise the body produces more mitochondria. This is what they are trying to do with GET. They believe that any disease has long left us but lack of exercise means we have few mitochondria and flabby muscles. This is where some of the confusion comes in because there is nothing wrong with trying to get as many mitochondria as you can or trying to improve your muscle strength or range of movement. But we have damaged mitochondria so exercise can actually kill off the ones we have so it must be done very, very gradually.

    The other problem we face is that our fitness, or lack of it is a side effect of some other process wrong in our bodies. Personally, I mistook an increase in fitness for an upturn in my health. I felt better and could do more but I didn't realise that it just meant that the cues I used to tell me to stop were gone. The underlying damage continued even though I did not FEEL as if I was doing too much.
    One day my legs stopped and I have had limited walking ability since.

    Exercise and CSF is so emotive with it being subverted to the psyche cause, that I hope Staci Stevens may be the one to look at it while knowing how damaged we are. It is knowledge we could do with having.

    Mithriel
  6. PoetInSF

    PoetInSF Senior Member

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    I've never heard of such a mitochondrial theory of GET. The link, please?
  7. Wonko

    Wonko Senior Member

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    neither have I and I'd be interested in further info

    edit - I was under the impression the point of aerobic exercise was to improve fitness of the gross system - not at a celullar level - eg endurance not strength persay
  8. Mithriel

    Mithriel Senior Member

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    It isn't a mitochondrial theory of GET, it is standard physiotherapy for people who have had enforced inactivity. You gradually re build muscle mass, which also involves getting more mitochondria in the muscle fibres. You can read it in a physiotherapy text book.

    If you read Orla's thead with the leaflet from the Liverpool clinic, they talk about deconditoning as the reason for all our symptoms so you do gradually increasing exercise to build up condition in the muscles.

    Because the ills we feel are a result of exercising when deconditioned they say you must ignore any symptoms, they are not a sign of a disease process just normal consequence of exercising with so few mitochondria that the lactic acid production of anaerobic exercise comes on quickly.

    Mithriel
  9. Wonko

    Wonko Senior Member

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    ah - yes - that old chesnut - like so many things in leaflets it depends on your defintions - but the end result is 100% lie

    nearly as good as the old favourite - it's a dead/inactive virus - it cant make you ill - your imagining it
  10. Mithriel

    Mithriel Senior Member

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    Wonko said
    The wikipedia link http://en.wikipedia.org/wiki/Aerobic_exercise has more information on what exercise does at the cellular level than you ever wanted to know :Retro smile:

    Mithriel
  11. Wonko

    Wonko Senior Member

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    odd - I've read that before and didnt remember anything along the lines your suggesting - on re-reading I find specific refrence to aerobic exercise being critised
    no mention of mitochondria creation - no strength gains - just endurance - apart from maybe incidentally - nothings purely aerobic or anaerobic - not as far as the whole bodies concerned

    I note that I'm not disagreeing with you - just the theory as you've described it re GET - I'll do a little more digging but tbh it sounds like ill concieved rubbish to me - the point of a GET program is to increase endurance - thats obvious by the exercises/techniques they use - yes a little strength may be gained but thats more in the neuroprogramming (if thats the correct term) area than in muscle (ie it increases your ability to use the muscle you have effectively)

    the benefits of exercising this way in someone with damaged cellular energy production systems and toxin cleanup are at best questionable IMO - and with the advice (at least in the UK) to ignore all symptoms and continue regardless - inevitably doomed to failure - and possibly serious long lasting damage to the cells - which have after all just drowned in their own toxic products

    so whilst I have philosophical objections to the concept of a GET program for anyone - I question it's value in other words - in the case of someone with M.E. I'd have to question either the intellegence or the sanity of anyone recommending it

    of course all the above is just my opinion - based on my very limited understanding of such things - not at all biased by any of the reports I've heard of GET doing seriously nasty things to people with ME - or on my own experiences - there may even be a nice GET program somewhere which doesnt believe that working a damaged system to failure is a good thing - bound to be - I just havent seen it yet - clearly my fault - I'm not trying hard enough

    none of this should be taken as a comment on Staci Stevens program as I havent seriously looked at it yet - I dont even know if it is a GET style program or not - cant remember would be more truthfull - so I'm not commenting on that - just on the GET theory of exercise as described by Mithriel
  12. Mithriel

    Mithriel Senior Member

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    I don't know much about exercise physiology and I think more may be being read into my posts than I meant.

    Usage makes muscles stronger, as you increase muscle mass you also increase the number of mitochondria in those muscles. People with flabby unused muscles, very unfit, see the most benefit quickly because the difference is marked. When we moved into a house with stairs everyone's legs ached for the first few weeks then our muscles got stronger.

    I can't get at my text book, it's actually an Occupational Therapy one, it is where I can't reach it but from memory they talk about gentle movements to recondition muscles. I assume that the GET people are using this sort of simple advice.

    Encouraging people to move a bit more, to get them walking is all it is about. In hospital, I was made to walk between rails. I was expected to be able to do more every day but I couldn't. A woman who had been paralysed with MS for months was able to regain muscle power and improved in a way I couldn't.

    I very much doubt the GET people have considered any exercise physiology questions before they made up their regime. I doubt if they are trying to increase mitochondria they seem to have no interest in biology or biochemistry. I meant that this is biologically part of what they are aiming for only in as far as this is what happens with any reconditioning of muscle.

    Athletes already have very good muscle mass as far as the body is concerned as opposed to the withered leg after a broken leg, say, so they have to work very hard and chose what they do very carefully to get an increase which is probably why it has to be all worked out in so much detail.

    Exercise also makes the mitochondria more efficient as it helps at the biochemical level.

    I don't believe in GET, I don't think we should do more than is comfortable but I am a great fan of pacing where you do as much as you can but only that amount. I think I kept going as well as I did for so many years because my lifestyle included a lot of walking. I preferred walking to standing waiting for a bus which made me ill. I only wish I could get some of the muscle tone back I've lost after all these years I htink that I would have less lactic acid pain if I had more and more efficient mitochondria to use oxygen respiration.

    I don't think exercise can make you less sick, it only improves what you can do while you are ill and going beyond the efficiency and number of your mitochondria will make you sicker.

    I leave how that can be achieved to people who know about sports physiology.

    You obviously know about that side so your thoughts could be useful

    Mithriel
  13. Wonko

    Wonko Senior Member

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    Hi Mithriel

    I'm sorry - my post wasnt intended to be a rant or a dig at you - it was supposed to be a lightweight, even humourous critique of the whole GET approach - not in opposition to but to give a slightly different slant to the more normal hostile rants regarding it

    apparently I failed miserably - I'm sorry

    Dave
  14. Mithriel

    Mithriel Senior Member

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    No problem, Dave. I was just trying to explain. I can't always get things to come out as I mean. It's so much easier talking than writing :Retro smile:

    The whole subject fascinates me. Being ill since I was fourteen, sport has never been my thing, even watching. ( Interestingly I recently realised that my ME brain can't see fast moving objects easily so I wonder if that is why things like football bore me so much. I can't make out what is happening and it is tiring to try. I just thought I was born with a gene defect :Retro smile:)

    I have often thought that the expertise of those working to get an extra second off the time of a runner could help people with CSF. Working with exercise WITHIN our disease limitations and problems could be beneficial to us all and give people something to work with. We are all in the dark.

    This is a useful discussion.

    Mithriel
  15. kerrilyn

    kerrilyn Senior Member

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    Have you been peeking in my windows?

    I wonder about testosterone too, it helps with muscle strength. I was very very low in testosterone and a doc put me on bio-identical cream. At first I had more energy, but I think that was just a coincidence. I increased the dosage, became irritable, and soon blood work showed I was twice the normal range. ((Maybe I should have been trying to really strengthen my muscles then)). I lowered the dosage again and stopped being so irritable. I didn't notice a difference in my strength or endurance so I stop using it. I just did a saliva test and I'm on the low edge of normal now, I suspect without using it I'll quickly return to being low again. There are a lot of things involved with how crappy we feel and how little we can do.

    I was involved with a GET program (for FM) and they did try to make me stop when I have reached my limit. I was not encouraged to push past it or ignore how I was feeling, which was good. I needed that. So really it was more like the APT that you mentioned Mithriel.

    However, I was given the impression that I would be able to do more and get past that hurdle, so to speak, with time. That never happened. And I think I continued to push past my limit too much because I didn't really how really dangerous it was if I did. The word deconditioned was used a lot. Now I know I have POTS/OI problems and part of my difficulty was that the exercises involved walking, just being upright is a big struggle for me.
  16. ahimsa

    ahimsa Senior Member

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    Link to video - Therapeutic Exercise and Activity in CFS/ME, Staci R Stevens, et al

    I haven't seen anyone post a link to this video in this thread (sorry if it is in there somewhere and I missed it) but here is a video presentation that talks about this issue:

    http://podcast.med.ucalgary.ca/grou...rapeutic_Exercise_and_Activity_in_CFS_ME.html

    The title page for the presentation shows three authors, Staci R. Stevens, MA, J. Mark Van Ness, PhD, and Kylie Kumasaka, BA, from Pacific Fatigue Laboratory, University of the Pacific, Stockton CA (for those who want to search for further studies).

    I don't know whether all data from their research has been validated in follow-up studies but it sure looked interesting to me. This presentation is easy to follow without overly confusing medical jargon.

    A brief description of my favorite two slides:

    Question #9 My doctor told me I need to walk at least 20 minutes every day. I can do it but I feel horrible later. Is this good for me?

    [answer on next slide] No! Use the right energy system. [slide also shows a graph, with the horizontal axis representing elapsed time, showing three different colored lines that represent three different energy systems]

    The video is about 30 minutes long (I think? It's been a while since I looked at it) but well worth watching if you're interested in this theory.

    Marjorie
  17. fingers

    fingers Senior Member

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    I think this link has been posted before Marjorie. You are obviously far more intelligent than I (doesn't take much) as I just didn't GET (geddit?) this at all.

    I asked Staci for further explanation of anaerobic exercise and received the two attachments here.

    Unfortunately, I'm so thick that these didn't make any sense to me either.

    As someone else asked somewhere else, is there anyone with a scientific mind who can explain this to us all in simple terms? I think I have a problem with "anaerobic", possibly due to autism.

    To state my problem less obtusely: If I walk to the bus stop, that's a bad idea, however, if I sprint to the bus stop (as long as it's not too far away), then I'm safe. It seems I just haven't been moving fast enough? Is this right?

    Oh, and if there's a picture of Dr.Yes attached to this delivering therapy to an emminent child psychologist, it's because I can't work the uploads. Sorry Dr.Y, it was more in reverence to you rather than disrespect.

    Attached Files:

  18. ahimsa

    ahimsa Senior Member

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    I'm quite amused at being called more intelligent because I'm pretty sure that I do NOT understand all the terminology or even the basic science behind the theory! But after reading a bit, and watching the video, I thought that I understood at least the general idea of what CFS patients are supposed to do about exercise. It's kind of like knowing how to drive a car without having any understanding of internal combustion engines. :Retro smile:

    So, here's what I got out of the video.

    First, they say that everyone, CFS patients and everyone else, have more than one "energy system." But in CFS patients one (or more?) of these energy producing systems are broken. So, she is advising that CFS patients work only within that energy system that is still working (I'm avoiding naming any of these energy systems to avoid confusion).

    So, what should CFS patients actually do with this information?

    First of all, it seems to reaffirm what most CFS patients already know from trial and error. They know that they cannot use the general exercise guidelines. This is true for both heart rate (e.g., that rule that says take 220, subtract your age, then multiple by some percentage to get the optimal heart rate for your workout) and for length of exercise (e.g., 20-30 minutes per day).

    CFS patients should NOT follow these general rules. Instead, they must start very small - try not to go above a certain heart rate and don't go longer than a certain time. In one of the PDF files you attached they suggested an exercise duration of 30 SECONDS (not minutes) to start. And build in rest periods of 3 to 6 times longer than the exercise periods. That's quite different from 20-30 minutes.

    The problem comes in trying to calculate exact numbers. What is the appropriate heart rate for your workout? How long should you "exercise"? (or do some activity - stretching or whatever) How long to rest? How often?

    Without a fancy testing set up and a personalized trainer I don't know how anyone can really KNOW these variables. So, I think we have to rely on trial and error, start really small, take lots of rest breaks, and do less if there are symptoms the next day.

    The new thing for me is to be aware of my heart rate and sit down and rest when it starts to get too high. My instinct, even though I try to pace myself and to rest a lot, is to finish whatever activity I'm doing (e.g., unloading dishes or something like that, not "exercise") instead of sitting down to rest. I think to myself, "I'll just finish this one last thing and then I'll sit down." But I think that means that at those times I'm probably going over my limits without even realizing it because it doesn't really feel like I'm pushing myself to do something so minor. But I guess my body thinks it is "exercise" whether my mind wants to admit it or not.

    This suggestion above seems wrong to me. I don't think sprinting or doing things faster is the answer. I don't actually know "the answer" but the general idea seems to be that you should do any exercise or activity in small bits, taking lots of rest, and building up slowly.

    This is long and rambling and may not be what you were looking for. I hope you do find someone who can actually explain the whole aerobic/anaerobic thing. I can only focus on the practical "What should I do about it?" questions. :D

    Marjorie
  19. fingers

    fingers Senior Member

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    Hi Marjorie

    Many thanks for that intelligent, balanced and eloquent post. I hope you don't mind me quoting only part of it.

    I've highlighted two of your points as these are the ones I just don't get. If you keep your heart ratre below your anaerobic threshold (which I think is what you're suggesting), you'll be exercising aerobically.

    For me (and anyone actually), if there isn't a certain level of intensity to the activity, then the energy system used is aerobic, not anaerobic as recommended.

    I think this is a very simple question, but one which no-one here has answered, and neither has Staci Stevens.

    ATB
    Steve
  20. Lesley

    Lesley Senior Member

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    I think I may have figured it out. The key is to distinguish between the goals for daily activities and exercise. It is also important that the anaerobic system is used during the first 30 seconds or so of exercise AND if you heart rate exceeds the anaerobic threshold (AT).

    *During everyday activities, we use aerobic energy for most things. Because our aerobic system doesn't work properly, we have to limit our activity to avoid PEM.

    *In CFS, the AT can be low, so we may get into anaerobic exercise during normal daily activities. The body can't handle anaerobic activity for more than a very short time. This is the reason a heart rate monitor is recommended to keep the heart rate below the AT during daily life.

    *If you are trying to exercise, aerobic exercise won't work because the aerobic system isn't working properly.

    *The anaerobic system does work. The first 30 seconds or so of activity is anaerobic. If you are going to exercise you want to use the anaerobic system, which means doing 30 seconds of activity followed by rest.

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