rvallee
Senior Member (Voting Rights)
Recently, a few discussions over terms have caught my attention on two terms that I think can make discussions of ME/CFS make more sense. Obviously terminology is a fraught issue, we are still tainted by the 'chronic fatigue' label after all this time, and this is mainly because to retire terminology, it needs to be replaced, unless that change is imposed by saboteurs, as what happened with chronic fatigue, and this hasn't happened.
Mainly, as the title says, this is about using alternative terms for two of the main concepts: fatigability, as a replacement to fatigue, and rationing, as a replacement to pacing.
Fatigue is obviously an issue in ME/CFS, but pretty much all discussions and comments made suggest to me that fatigability, a rapid increase in fatigue after minimal exertion, makes 100x more sense than fatigue. It also removes much of the nonsense about non-existent 'baselines', since no matter how well-rested someone is, with ME/CFS the issue is that it can be made significantly worse way too easily.
Especially, not all of this is PEM, and it's causing problems. The fatigability, more than fatigue, is why rest is so important. There is even a solid analogy in rocket science, where it's not velocity that matters, so much as it's acceleration, and ultimately "delta-v", the amount of acceleration that is needed to reach an orbit. We can coast through life fatigue, but we can barely ever accelerate to where it needs to be. There is the disproportionate loss of function relative to the exertion, something that is critical to understanding and managing the illness but is almost entirely missing from all discussions, and this can't be reconciled with fatigue.
Which brings me to the other term that is problematic: pacing. Pacing isn't a good enough analogy, and it's been misused so much that I don't think it can be repaired. Lots of ideologues even use the term pacing to mean GET, and we're not fixing that any time soon. If a term requires this much over-explanation, it's bad.
What I think makes much more sense as a term is, instead: rationing. Pacing in our context is usually used in as in the context of a race, where a runner can't simply sprint the whole way, have to slow down enough to make it to the end. But it can also be used the other way: pace up, increase the pace, or you will lose the race. And this has caused so many issues, especially when you consider that the best way for someone to manage a 'baseline' increase in ability to pace up is to exercise. I think this is something that breaks the minds of rehabilitation enthusiasts, because their misunderstanding of the issue is framed in the term's limits.
Rationing makes a lot of sense to me. It evokes the limited quantity of what is needed, exertion, in a way that can't be twisted to mean the opposite. It's also dynamic, as unlike the number of spoons in a house, which doesn't vary much without going to the store and purchasing (but also offers the misleading idea that one can simply just do that, buy more energy), rationing is strictly about limiting usage and making 'refilling' actions critical to the whole thing.
Rationing is not strictly restricting. When stocks are plenty, they can be used. When they are low, their use must rapidly decrease. It's also not limited to the context of a race, which pacing sort of forces to think about, and rather makes it about normal usage. To me it's just a much better analogy.
It also works very well with video game language, which most people are familiar with by now, to some degree. You may have a number of potions/bonuses/buffs, whatever, but that number may vary, it may drop almost down to zero after a rough encounter, and you may replenish as the game moves on, except life isn't designed in a way to make the game winnable, so there is no guarantee of that. It's also just as critical to inventory management to not over-use things that are in limited quantities as it's important to make use of them when needed. Life isn't a video game with easy mode turned on, we don't finish the game with an over-flowing inventory. We have to use it as needed simply to continue playing the game of life.
I think I can make better arguments for this, but it doesn't matter much what I think, I'm more interested in what others think. Right now I think we are limited by this language, more than most understand, and one way out of it is to take control of the discussion by improving on the basics of how we talk about it.
Mainly, as the title says, this is about using alternative terms for two of the main concepts: fatigability, as a replacement to fatigue, and rationing, as a replacement to pacing.
Fatigue is obviously an issue in ME/CFS, but pretty much all discussions and comments made suggest to me that fatigability, a rapid increase in fatigue after minimal exertion, makes 100x more sense than fatigue. It also removes much of the nonsense about non-existent 'baselines', since no matter how well-rested someone is, with ME/CFS the issue is that it can be made significantly worse way too easily.
Especially, not all of this is PEM, and it's causing problems. The fatigability, more than fatigue, is why rest is so important. There is even a solid analogy in rocket science, where it's not velocity that matters, so much as it's acceleration, and ultimately "delta-v", the amount of acceleration that is needed to reach an orbit. We can coast through life fatigue, but we can barely ever accelerate to where it needs to be. There is the disproportionate loss of function relative to the exertion, something that is critical to understanding and managing the illness but is almost entirely missing from all discussions, and this can't be reconciled with fatigue.
Which brings me to the other term that is problematic: pacing. Pacing isn't a good enough analogy, and it's been misused so much that I don't think it can be repaired. Lots of ideologues even use the term pacing to mean GET, and we're not fixing that any time soon. If a term requires this much over-explanation, it's bad.
What I think makes much more sense as a term is, instead: rationing. Pacing in our context is usually used in as in the context of a race, where a runner can't simply sprint the whole way, have to slow down enough to make it to the end. But it can also be used the other way: pace up, increase the pace, or you will lose the race. And this has caused so many issues, especially when you consider that the best way for someone to manage a 'baseline' increase in ability to pace up is to exercise. I think this is something that breaks the minds of rehabilitation enthusiasts, because their misunderstanding of the issue is framed in the term's limits.
Rationing makes a lot of sense to me. It evokes the limited quantity of what is needed, exertion, in a way that can't be twisted to mean the opposite. It's also dynamic, as unlike the number of spoons in a house, which doesn't vary much without going to the store and purchasing (but also offers the misleading idea that one can simply just do that, buy more energy), rationing is strictly about limiting usage and making 'refilling' actions critical to the whole thing.
Rationing is not strictly restricting. When stocks are plenty, they can be used. When they are low, their use must rapidly decrease. It's also not limited to the context of a race, which pacing sort of forces to think about, and rather makes it about normal usage. To me it's just a much better analogy.
It also works very well with video game language, which most people are familiar with by now, to some degree. You may have a number of potions/bonuses/buffs, whatever, but that number may vary, it may drop almost down to zero after a rough encounter, and you may replenish as the game moves on, except life isn't designed in a way to make the game winnable, so there is no guarantee of that. It's also just as critical to inventory management to not over-use things that are in limited quantities as it's important to make use of them when needed. Life isn't a video game with easy mode turned on, we don't finish the game with an over-flowing inventory. We have to use it as needed simply to continue playing the game of life.
I think I can make better arguments for this, but it doesn't matter much what I think, I'm more interested in what others think. Right now I think we are limited by this language, more than most understand, and one way out of it is to take control of the discussion by improving on the basics of how we talk about it.
