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Activity baseline vs activity ceiling, why concepts and language matter

Discussion in 'General ME/CFS News' started by Andy, Aug 1, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    So, I'm sure many of us are familiar with the idea of establishing an activity baseline, which is where the activity that you are able to manage doesn't trigger PEM.

    I would argue though that the concept of a baseline is inherently dangerous for PwME as it implies a position that can then be improved on, even if that isn't the intention of anyone suggesting it. And when this language is used in UK's fatigue clinics, it explicitly is something that the therapists, typically physios, then want the patient to progress away from.

    Far better, I would suggest, to use the concept of an exertion ceiling. This then has the advantage of implying something that shouldn't be gone above, given the potential harm to PwME I think this is extremely valuable. Alternatively I've used the phrase Sustainable Exertion Limit before, which, while being the same concept and more descriptive, doesn't quite roll off the tongue so well.

    It's still not the perfect description of course, our ceiling can move, both up and down, and for the most severe it's likely they are in PEM constantly, but I think that something that will lessen potential harm in the way that I think this would is important.

    Thoughts and comments welcome.

    P.S. @PhysiosforME , you may be interested in this idea.
     
  2. ProudActivist

    ProudActivist Established Member (Voting Rights)

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    Oh good thing to consider!
    A baseline sounds very fixed as well, when as you say, different factors can make it unpredictable or change over time.

    Ceiling and limit at least suggest the upper limit without you having to hit it and be up there all the time, where baseline feels like this is the level you operate on and it’s healthy to stay there, keep doing. Obviously we need to move when we can and like to “do” but I like the flexibility of being somewhere below a ceiling.
     
  3. Aslaug

    Aslaug Established Member (Voting Rights)

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    I like this idea of thinking. I don't feel like I have a baseline level of activity, it changes a lot. The ceiling does too of course, but as you say the implications are different. I can be below a ceiling a function more or less ok.
     
  4. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    That is SUCH a good point!
     
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  5. Medfeb

    Medfeb Senior Member (Voting Rights)

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    @Andy Does the idea of an "energy envelope" achieve that? Focuses on the limits
     
  6. Ravn

    Ravn Senior Member (Voting Rights)

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    Exertion ceiling? Sustainable Exertion Limit? Yes, both have merit I think.

    On reflection I only use the word baseline in the context of symptom burden, never in connection with activity levels. As you say, how much we can do without triggering PEM fluctuates quite a bit, even with the best of pacing, so really there is no such thing as a stable activity baseline as some of the GET proponents seem to believe.

    Of course there's no stable exertion ceiling/limit either. But at least ceiling or limit have the sense of a point that cannot be passed. As opposed to baseline which implies a starting point.
     
  7. Andy

    Andy Committee Member & Outreach

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    Of course, but I would argue that exertion ceiling/sustainable exertion limit are more immediately descriptive/understandable, especially to the lay person.

    Envelope, as used in energy envelope, is of course used to describe a limitation but most of the public are unlikely to immediately understand it that way, and avoiding the initial confusion of "an envelope made of energy? for energy letters??" is valuable I think.
     
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  8. ProudActivist

    ProudActivist Established Member (Voting Rights)

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    Oh to be enveloped in energy!!!
     
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  9. Trish

    Trish Moderator Staff Member

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    Great idea @Andy.

    Definitely worth pursuing. If we could get clinics to actually acknowledge that we have a ceiling that limits activity, rather than a baseline to work up from, that would be a major step forward.

    I like 'energy envelope' as a concept, but it needs explaining.

    It feels a bit like a cage with bars.

    Though the trouble with all those visual images is they don't take into account time. I can walk 10 metres. That is within my energy envelope, or under my ceiling. But how long do I need to rest before I can walk 10 metres again, and how many times can I do it in a day. And walking 10 metres 5 times with a hour rest in between has a different effect to walking 50 metres all in one go.

    That's why I prefer the battery analogy. We have batteries that have limited charge and need time to recharge between uses. My battery allows me to walk 10 metres, but then goes flat and needs to recharge for an hour before I can repeat it. And just existing with a bit of brain activity drains the energy away too. And it needs longer charges overnight and if I drain it completely it becomes faulty and needs a much longer recharge etc etc.
     
  10. lansbergen

    lansbergen Senior Member (Voting Rights)

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    I call it stay within my limits. Easier said than done. Figure out the limits is difficult but it pays. I can do more when I stop in time than when I push.
     
  11. Mij

    Mij Senior Member (Voting Rights)

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    I started explaining the battery analogy many years ago, people get it. Keep it simple. I've only used the 'energy envelop" explanation here on the forum.

    I explain that their battery recharges to 100%, but mine only recharges to 60%, so that I run out of mental and physical stamina much quicker and need to stop every activity. Our batteries take much longer to recharge. It also varies from person to person.
     
  12. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Yes there are some good graphics I’ve used on social media to get the battery message over. Occasionally post it if I’ve got bad PEM to highlight that to social contacts in a more accessible way.
     
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  13. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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  14. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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  15. Medfeb

    Medfeb Senior Member (Voting Rights)

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    The New York State Department of Health's website for ME uses the battery analogy

    Imagine the body's energy level as a battery on a cell phone. Usually, when you plug in a cell phone overnight, the battery is fully charged in the morning, much like the way most people feel after a good night's sleep – fully recharged. The body of a person with ME is like a cell phone with an old battery that can never be fully recharged. Even after hours of sleeping, they still may not have enough energy to do their daily activities.
     
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  16. Mithriel

    Mithriel Senior Member (Voting Rights)

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    The idea of a ceiling effect was used about ME before CFS. It meant that people could sometimes get some improvement, with exercise or a treatment, whatever but there was a point that could not be crossed.

    This could explain some of the clinic things. you can maybe get a bit better and they get excited and think their GET works but then you stop and they don't believe you are trying anymore.

    It is such a useful concept as an upper limit that people might get on a good day or in a slight remission I do not think it should be wasted for a lower limit.

    For many of us I do not think I could ever have said what was my baseline even in my much more active stages. ME was characterised by its variability so what I could manage easily without payback varied all the time.

    The concept of a baseline is maybe not useful at all no matter what it is called. The level at which you will never ever have any symptoms is so low it is difficult to stick to it. Learning what it feels like when you do too much or using a heart rate monitor is a better plan than establishing a baseline. It is much more important to feel allowed to stop as soon as you feel you have too, so that would be a better thing to tell new patients.

    Keeping to our limits is a much more useful concept and not open to misinterpretation.

    Unfortunately, calling the baseline an activity ceiling would only encourage the BPS to say we were advocating bed rest and making people deconditioned.
     
  17. Wonko

    Wonko Senior Member (Voting Rights)

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    Baselines move, sometimes with cause, most often for no obvious reason.

    Even with 34 years of this I cannot reliably predict it, up or down, assuming it's defined as it seems to be common as a 'safe' activity level which will not provoke symptoms.

    So I'd agree, it's not a particularly useful concept, unless you're 'stable'.

    I, and I suspect a lot of pwME who are 'well' enough to do so, work on a more adaptive system these days, assessing task by task, goal by goal, moment by moment, if continuing is okay, a bad idea, or a really, really bad idea.

    And then proceed accordingly.

    Not what I would advise others to do, the downsides could be 'bad', but it seems to work, better than the alternatives anyway.

    Can't say it's the most pleasant way to live when, as I frequently do, misjudge things or get caught out by circumstance, but that's what painkillers and justeat are for
     
  18. Daisybell

    Daisybell Moderator Staff Member

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    I think of my energy as being in a balloon.....
    I can stretch it so far but if it gets too taut, I have to let some air out quickly by resting. I need to keep the balloon below a certain size - with some flexibility still in it, and the balloon lasts longest if I keep it quite unstretched. If I’ve stretched it too tight, then it pops and it takes me days to get a new balloon. The new balloon is likely to be a slightly smaller size..
     
  19. Trish

    Trish Moderator Staff Member

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    Good points, @Mithriel. Though I've never had a level low enought to not have any symptoms. Even at my mildest and lying in bed doing nothing and when well rested, I was still in pain and felt drained [edit: and nauseous and ill and ...]. I'm not sure the therapists understand that.
     
    Last edited: Aug 1, 2019
  20. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Andy, I like the concept of exertion ceiling much better than activity baseline, but wonder if health pros would still want to move our exertion ceiling upwards.

    Variability and unreliability in activity levels are basic to ME. Not wild swings from feeling well to completely bedridden, but variability in much smaller circles.

    Of course one can say pwME can certainly rely on feeling unwell, and developing PEM at some point. That we can rely on.

    We just don't fit into a rehab structure. What we try to describe, and what rehab exercise pros want to see and plan for are two different languages. They want some assurance we can work up from a stable baseline, and our baseline, as well as our ceiling may frequently vascillate.

    It would be good to have some more descriptive and understandable language for those in the health fields. I do agree exertion ceiling is much better than baseline activity. However, I can envision exercise zealots wanting to move that ceiling.
     

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