GET V HIIT



  • Hi all.
    I’ve gone through months of trying Graded Exercise Therapy with no real change. I would seem like I was improving only to have it all catch up to me and be struck down with PEM (Post exertional malaise) days later.
    I was doing 20 min to 1 hr sessions managing my heart rate and effort.
    Just wondering if High Intensity Interval Training would be better?
    Any advice or experiences would be interesting to read.
    Thanks team
    Chris


  • Global Moderator

    Hi Chris 🙂

    In terms of exercise, as best I understand it the latest science on ME/CFS supports the idea of exercise using the concept of pacing - so trying to exercise without triggering PEM (keeping diaries of how you're travelling after exercise can be good for this, particularly if brain fog plays merry havoc with your memory).

    GET, in its traditional form (some practitioners have been more-or-less relabelling pacing as GET which has muddied the water somewhat, but it sounds like you might have been doing traditional GET) has been found to be far more likely to trigger PEM and cause harm for people with ME/CFS, and so should be approached with a high degree of caution - depending on its severity and frequency, PEM can lead to a longer-term deterioration in symptoms, which is most definitely worth avoiding!

    I've just had a quick Google of HIIT, and it looks like something that would be quite difficult to assess in terms of PEM management, and quite risky, but the key to pacing is understanding and listening to your own body. If it were me trying HIIT, and I was well enough to be trying that kind of thing, I would start (noting this is just my 2 cents, and in no way scientific) with very short sessions, with a couple of days between them, to make it very easy to assess any PEM. If I was getting away with it, I'd then build up very slowly, and dial-down how much I did on days when I was a bit rougher. I'd keep a careful record of how much exercise I did, and how I travelled after each session. My PEM tends to come on no later than a day afterwards (it doesn't always peak then, but I know the day after if I've misbehaved) so a two-day gap between workouts would work for me, but you may need to adjust the time period depending on how you're affected by PEM.

    Personally (and this is just "what I do when health allows" - it's not particularly scientific), when I go through patches where I can exercise (unfortunately far less frequently than I'd like - two decent patches in the last decade), I start with stretches (3-5 minutes a day, building up to about 15), and then if I'm still alright, start adding very small quantities of 'traditional' exercises, usually anaerobic (for whatever reason - and I think there is a scientific reason but I can't recall it right now, we tolerate anaerobic exercise better), like sit-ups or push-ups, and then build up as far as the health will allow. If I'm having a rough day, I dial back what I'm doing, all the way to nothing as appropriate (I catch every bug under the sun, so I get plenty of rough days from that, as well as from PEM from real-world things that are hard/impossible to avoid). I have to be careful - usually at some point during the good patch I'll throw caution to the wind, and try and jog or something, and get hammered by PEM - during the last patch, a 2.5 minute light (not much more than an enthusiastic shuffle) jog set me back for over a week, and that was when I'd worked up to two sets of ten push-ups and two sets of about 20 sit-ups.

    I do find that if I can get to a level of health where I can exercise, that the exercise does seem to build in some resilience as well, but to-date other developments (eg. viral or bacterial illness, emergencies requiring PEM-inducing activity) have always triggered enough PEM to knock me back to ground zero. At the moment, I'm not even at the regular stretching stage, and haven't been there since mid-2019. Prior to my good patch in 2018-2019, I hadn't been able to do anything other than patchy short stretching since a nasty bug in very early 2013. At the moment, I do the household cooking, which I pace out (so I don't do a recipe all at once, but do some chopping in the morning say, then have a rest, then some more chopping at lunch, then the actual cooking in the evening) and that's about as intense a physical activity as I can handle (and I've had patches years-long where that was beyond me) without serious PEM.

    Best of luck with your exercise - if you're happy sharing, it would be good to hear what approach you go with, and how it goes 🙂



  • Hi Chris, this doesn't answer your question specifically, but I'm just wondering if you are familiar with the work of the Workwell Foundation? Here's one link. I had hoped to link you to few more articles of theirs but the links appear broken at the moment. https://www.healthrising.org/blog/2017/10/10/physical-therapy-workwell-chronic-fatigue-syndrome/. While it doesn't specifically address your question, their work on aerobic/anaerobic issues in ME/CFS might be helpful in working out what a safe approach for you might be.


  • Global Moderator

    @Chris said in GET V HIIT:

    I’ve gone through months of trying Graded Exercise Therapy with no real change. I would seem like I was improving only to have it all catch up to me and be struck down with PEM (Post exertional malaise) days later.
    I was doing 20 min to 1 hr sessions managing my heart rate and effort.
    Just wondering if High Intensity Interval Training would be better?
    Any advice or experiences would be interesting to read.

    I’m not sure if you’re familiar with the concept of the energy envelope? It basically says that, in order to avoid triggering PEM, we need to keep our activity within the energy available (the envelope) to us on any given day. @KateH_Em_Aus mentioned the Workwell Foundation. They (and others, like Nancy Klimas) say that exercise to be safe for us, it shouldn’t trigger PEM at all.

    Going by what you’re saying, it sounds like however much exercise you’re doing is too much for your body right now, and you would be better to do less, rather than more. The community is littered with people who did too much and then became worse and lost functioning (I’m one. I was mild, and later became bedbound because I did too much). I know that you’re able to work, so every part of me is wanting to protect that for you. I’d hate for you to push yourself too hard and end up becoming more restricted in what you can do.

    The Workwell Foundation believe (and the metabolomics research supports this) that our aerobic energy production system is faulty. When we use our energy up, we essentially go into a deficit, which is how we end up in PEM.

    Leonard Jason’s research suggests that people do better when they stay within the energy envelope which, in terms of exercise, means keeping the amount you do below the threshold where it triggers PEM.

    I know reducing the exercise you’re doing sounds counterintuitive, but your body is telling you it isn’t coping with it. It might be that you will be able to increase your exercise amount down the track as you find that safe level, or it might be that you hit a ceiling, and can’t go beyond that. Everyone is different.

    Keep in mind that many activities use energy, especially work. PEM is triggered when we go into energy deficit, regardless of whether or not that’s from exercise. And it’s possible that on busier weeks you might be more likely to experience PEM after exercise. Though if you’re triggering PEM everything time you exercise, that suggests that you’re exceeding your limit everything time.

    It’s hard and frustrating to find a safe limit for activity, especially exercise. It’s even harder when our condition fluctuates so much. It really becomes a huge lesson in lesson to our bodies, and being willing to let go of what we think we should or even want to be doing, and finding what our body can cope with instead. I hope you can find your safe limit! 😊



  • @Chris, I thought I'd add my thoughts too, based on 30 years experience dealing with challenges and opportunities of exercise. It's an interesting question you raise, one I've thought about.

    I really like @Daffy_Dave's account of GET not being a great option in CFS (ironically, given the attention it got as "the" management option a while's back);
    and him saying that if you do trial HIIT, which he notes could be risky but where pacing is an important layer to sit over the top of it, then it would be good for you to track how you go, to really do your best to review fine details of activities and what your body is 'saying", and if you can, share with someone / us if that sounds ok.

    Then there was @KateH_Em_Aus's linking, followed by @Simone_Em_Aus's presentation of ideas of energy envelopes and even reducing the exercise you're doing. My sense of what has worked for me, and what hasn't, really fits in with these ideas.

    If the options are A) GET or B) HIIT,
    then my answer, for me, is C) neither.

    Sorry that it is not a hoped for answer.

    There are discussions elsewhere about recalibration of expectations for ourselves, and what can be grieving for the potential we lost.

    But there is joy in stringing days together with no PEM. Then weeks. Then months. I like to focus on the achievements, not the "what could have beens". The whole "don't dis my ability" campaign of a few years ago, if you remember it.

    My experience is that when there are runs on the board - not of "normal people's fitness", but of periods of time of no PEM - then some good enjoyable exercise is possible. But crucially that exercise needs to be done being keenly alert to what our bodies are saying. And being a bit of a scientist of what different symptoms feel like, talking with health care professionals, and having a sensible go at trying things in managing the symptoms.

    I can tell you stories about what hasn't worked for me, of what has worked for me, and more besides. There's a lot across 30 years, e.g. with lots of different symptom sets, and flavours of health care, etc. in that time.
    But this post is long enough already.

    All the best!
    Paul.



  • A little addition - one of the reasons why any program, be it GET or HIIT or other, can be problematic.

    If the program says on Tuesday you should do x, y and z, that is too rigid.

    If on Tuesday morning you're feeling a little ginger, then any of x, y or z can be a problem.

    Having a good sense of the state of our bodies is far more important than following some external program.

    The horse has to lead the cart, not the other way round.



  • Thanks for your insights. On reflection I think I’m using up my energy envelope with work so there’s nothing left for exercise. I even get PEM after strenuous days at work without any exercise.
    I’m a bit stuck as I feel I need to work to make ends $ meet and that leaves me with nothing left.
    I know people say just leave and get another job. Easy to say but hard to do at my age.
    Thanks. Chris



  • @KateH_Em_Aus
    Thanks heaps



  • @Chris said in GET V HIIT:

    Thanks for your insights. On reflection I think I’m using up my energy envelope with work so there’s nothing left for exercise. I even get PEM after strenuous days at work without any exercise.
    I’m a bit stuck as I feel I need to work to make ends $ meet and that leaves me with nothing left.
    I know people say just leave and get another job. Easy to say but hard to do at my age.
    Thanks. Chris

    Not easy mate. That's for sure.
    All the best with it.



  • @Chris I would be careful of any activity that raises the heart rate. But that's just me - having suffered relapses. Maybe spend lots of time lying down afterwards.


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