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Coining a term for being limited in your interrelated energy and time.

Discussion in 'General Advocacy Discussions' started by Arvo, Feb 11, 2022.

  1. Arvo

    Arvo Senior Member (Voting Rights)

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    Just one of these things I have tumbling around in the back of my head for a while now, and I was curious about your opinion.


    One of the key characteristics of ME/CFS is that you are limited in what you can do, there is an "energy envelope" that is markedly smaller than pre-illness. You can cheat it a bit, at times (especially when you're younger/earlier in the illness) but if you ask your body to go into the orange or red zone, there will be an unevitable crash with typical characteristics, PEM. (How big and intense it is depends on several variables.) It means making continuous choices about what you do, and if some circumstance/event/activity takes up more then it is removed from the ability to do something else (or the other activity sends you into the orange/red while it usually mostly doesn't.). (I've also seen a Long COVID patient describe this.)

    PEM/PESE/PENE has been known and accepted by ME experts since at least the 80s, but more general acceptance and knowledge about it as a key symptom in this illness is only growing in recent years.

    The phenomenon that patients are working with a limited budget of interrelated energy and time for activity however doesn't have a term or name that you can use as far as I'm aware of. And I think it needs one.

    In content spoon theory illustrates the phenomenon quite well. However, as someone on Twitter, (that I can regrettably not credit because I can't recall who it was) said, it is too colloquial and cutesy for serious or academic use. I can't remember what she said exactly (if I find it again I will post it), but if I remember right, she made a good point that the key thing is the interrelation of energy and time being limited, and in a research paper you don't say "patients are limited in spoons".
    (I liked that she added the "time" factor: if they are able, showering and getting dressed for example can take a ME patient significantly longer than a healthy person, being slow and needing to sit or lie down during the process. It's not just the energy that has a budget, time as a consequence has it as well. Even if patients didn't crash and could keep going at their lowered energy level, they'd still get significantly less done in a day.)

    One could think about "battery time", but that is not completely accurate and because of the pre-present knowledge of batteries in non-ill people it might lead to distortion of understanding what it's about.

    Another possibility might be an acronym, like ETB, or ETBudget. (Energy-Time-Budget).

    It's about expressing that a patient doesn't have any more energy and therefore time, or time because of limited energy in their budget to do X. They're either out of it, or have no room for that additional choice because their 'ETB' has already been assigned to something else.

    I personally come across this lack of term in casual talk (at the moment I usually say "my plate/day planning is full" or "I have too limited energy-time to do this"), and it is also important to have a term for it when for example describing the problems with CBT trials (that don't seem to take energy-time reroutes into account), or writing about ME/CFS needs or treatment effect.


    I was just wondering if you have ever given this any thought, or if you have suggestions on terms or names that could work.



    I wasn't sure where this topic should go, as it's a general topic that is about illness communication, official terming of a typical factor of ME/CFS in papers and research, and advocacy.
    I put in under avocacy because earlier this week I read Rebecca Solnit's "Men explain things to me", and in one of her essays she discusses how important it has been for the improvement of women's rights, and feminist advocacy, to have language and terms that capture the things that were happening to women.
     
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  2. Wonko

    Wonko Senior Member (Voting Rights)

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    Not helpful, being probably less scientific than spoons, but I use the word oomph to describe what you're describing.
     
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  3. Arvo

    Arvo Senior Member (Voting Rights)

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    I do too at times! :rofl:
    (It is a good description, though does it capture the time factor properly?:emoji_thinking:)


    But indeed unfortunately not fit for academic use in referring to the phenomenon.

    "Patients are limited in their oomph, and will experience PEM when not being able to distribute the oomph in a way that their energy envelope can handle. [7] [8]"

    References 7 and 8 being of course those famous papers "Influence of daily self care and basic household maintenance on oomph." and "Oomph and its prediction through measuring inflammation of vascular endothelium."
     
    Last edited: Feb 11, 2022
  4. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Energy-impairment. And it's meant to refer to: low capacity to sustain exertion, slow recovery from exertion.
     
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  5. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    I think your idea is a good one @Arvo.

    The words "inordinate" and "deficit" come to mind.

    As in energy and time deficit. How about ETD? Energy Time Deficit. ( To take your suggestion and modify it a bit.)

    The Canadian Disability Tax Credit notes, and I paraphrase: an inordinate amount of time to do a task, eg., a basic activity of daily living. For example, walking.

    As you have said, we can't add tasks without something falling off the back. It is terrible that many see it acceptable, and indeed agreeable to add more tasks to their day, and ask, or tell others to do the same.
     
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    Maybe the best term could come from mechanical engineering. There are many ways an engine or mechanical system can be structurally OK but simply fail to work because of, say, timing issues. An example of this is engine knock, which is all about the timing of explosions, when some are out-of-sync it's like a rowboat with rowers who don't coordinate their effort.

    Technically everything works, if the engine is checked all the parts are OK, all the tests show it works perfectly well, but if it's too out of sync it just doesn't produce enough power. It is underpowered for the same amount of energy used.

    It's not perfect since an engine is a single system with an external input of fuel, the body works in a distributed way that relies on locally-available sources, but I'm sure there are terms to that effect. The best would probably choking but it has too much psychological leg room and would be guaranteed to be misused.
     
  7. Kitty

    Kitty Senior Member (Voting Rights)

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    I tend to use the word capacity in formal contexts, as it seems to help with the problem that it's not describing something quite as straightforward as energy, power, or endurance.

    Whatever term we use needs to allow for the fact that it can mean different things in different bodies, at different times, and in different circumstances—yet it's the same thing. Capacity, like oomph, is imprecise yet understandable; it sometimes need a modifier (are we talking about physical or mental capacity, or both?), but that might mean it's slightly more flexible. You can talk about mental oomph, of course, but most people understand it as describing a physical phenomenon.

    I still use oomph most often, though. Unless I'm at home in Yorkshire, where go is equally understandable ("I amp't enough guh ferrit ter-day", which translates as "I haven't enough go to do it today").
     
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  8. NelliePledge

    NelliePledge Moderator Staff Member

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  9. bobbler

    bobbler Senior Member (Voting Rights)

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    Get exactly what you are saying. I think it was certainly taken on by the business literature to describe people as 'time poor' (convenience mattering) as well as money poor or whatever. I don't think other people can get their head around what 'energy poor' means though. I think it needs to include the cognitive/whole stuff rather than just physical.

    It's needing to stepping it out of the 'fatigue' (you'll be tired and slow doing this) into the eggtimer that I almost have to envisage in my head e.g. when you end up in a conversation with someone who you realise isn't keen on making it an 'efficient' communication by listening and then answering (and instead wants to change the subject to something else). I use that example because it is the most commonly uncontrollable situation - seems to be becoming worse since lockdowns. Awful when you are in something that matters and you realise the timer isn't going to let you get to what you need before your 'good brain' is used up.

    Would love to have something clever to offer now, but my better ideas come from incubation anyway so will check back in with interest
     
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  10. bobbler

    bobbler Senior Member (Voting Rights)

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    I like that idea as a place to look for inspiration. Second the power bit being as important as the energy bit.

    Also feel the part that eludes people is continuing to 'function' (although you wonder how they don't see it in you when you catch yourself in the mirror) when you are way past your limit but just building up a massive debt with a huge APR. That's probably making it more complicated, but if the term 'fits' into the paradigm all the better!

    A bit like getting our equivalent of 'running on vapours' when you're way beyond your petrol tank empty button coming on would be good to add too (and apparently, though not sure if it is true, you end up with all the sediment from the tank going through the engine). My poor car that I had when I was first driving...
     
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  11. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    Activity quota.
     
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  12. yME

    yME Established Member (Voting Rights)

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    Apologies but I wanted add this somewhere for months and as this is about communication….

    Using the saying a picture is worth a 1000 words I have long been mulling over if using multiple hysteresis envelopeS could graphically represent a way of combining time and energy state in ME when leading to or recovering from PEM.

    In the 1970s hysteresis envelopes represented the amount of magnetic energy and rate of change on vcr tape, memory and coils. So very fast and small changes compared to our situation.
    My best illustration being a closed wonky parallelogram superimposed on to an x y axis. X being time, -y energy level and + /- slope being rate of change between states.

    So in our case short burst of -energy with little change of actual level, short ability to sustain x progression, inordinate hours of recovery back to a weakened state being + energy on the y axis.

    Comparison between controls and multiple days stressors such as CPET would be very clearly visible. So often we lack the succinct words to describe our illness or where we are today on our yo-yo journey.

    Drawing this out has helped me realise there is a way of visually communicating where I am at a particular moment and from experience how long recovery might take often in days.

    There again perhaps Wonko was involved with this idea.
     
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  13. Creekside

    Creekside Senior Member (Voting Rights)

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    I think you're on the wrong pathway. I never experienced that sort of 'energy limitation'. My physically-induced PEM was triggered by what I believe was muscle microtears (caused by using muscles in ways other than usual daily activities), not by general exertion*time. My cognitively-induced PEM felt more like an accumulation of neurochemical waste than a deficit of energy. Using the term 'energy' implies ATP levels, which isn't proven to be the cause of ME symptoms. What we perceive as limited energy may be neurological, caused by malfunctioning neurons, neuroglia, or whatever else is involved with turning 'want to do' into actual action. I don't have any offhand suggestions for better terms, but I disagree with the misuse of the word "energy".
     
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  14. Sean

    Sean Moderator Staff Member

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    I also have issues with the word/concept energy, in part because of its close association with fatigue.

    Capacity is getting closer.
     
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  15. NelliePledge

    NelliePledge Moderator Staff Member

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    I think capacity could get confusing as it’s already used in the sense of having mental capacity to make decisions for yourself.
     
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  16. Trish

    Trish Moderator Staff Member

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    That was the phrase that came to mind for me too when I read the introductory post. I would expand it to add the time factor:

    Daily and hourly activity quotas.

    I think this covers the need to spread activity over the day, not compress it all into a single long activity then rest for the rest of the day. Quota is a recognised serious term that doesn't rely on metaphors like envelopes or spoons or batteries. Activity rather than energy makes no assumptions about biological processes.
    An alternative might be:

    Time contingent activity quotas.
     
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  17. bobbler

    bobbler Senior Member (Voting Rights)

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    That, given our situation, is a very important point to make and warning to bear in mind
     
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  18. Trish

    Trish Moderator Staff Member

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    Further thoughts. When we were discussing options to suggest instead of energy envelope in our NICE guideline submission, we suggested symptom contingent pacing. And made the point thar this was more appropriate than time or schedule contingent pacing. The took the pint about not using confusing metaphors like envelopes, and went with activity limit, if I remember correctly.

    My suggestion here of time contingent activity quotas has the sane flaw of not allowing for symptom variation affecting the quota too.

    Time is also jot the only factor. For example I can usually walk continuously for 20 steps on level ground before urgently needing to sit down, and repeat it an hour later. But ask me to climb a 20 step staircase and I'll need to stop and rest several times and probably not be able to repeat it for at least a day, depending what else I do. It's not just time, it's effort as well that calls a halt.

    How about

    Time and symptom contingent effort and activity quotas (or limits).
     
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  19. Ukmum

    Ukmum Established Member

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    An enervation equation needs devising.
     
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  20. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Hi @Arvo

    This is not what you're looking for, but I think it's related and might be helpful.

    One measure of the ability to function that the Bateman Horne Center has used is Hours of Upright Activity (HUA).

    I've seen it used in a few places but the one I remember is this video about Orthostatic Intolerance:
    (set to start just after the 2 minute mark)

    https://www.youtube.com/watch?v=X3Ym8rnYk_4



    Link for those who have trouble with embedded media:
    Code:
    https://www.youtube.com/watch?v=X3Ym8rnYk_4&t=219s
    A couple of screen shots:
    EDIT: I meant to add that I think that the HUA measure might be useful for people who need to lie down and rest for reasons other than orthostatic intolerance -- due to weakness, exhaustion, balance problems, or whatever. But I don't know if that's true.
     
    Last edited: Feb 19, 2022
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