Pacing in the context of myalgic encephalomyelitis is the management of activities and the body’s resources in such a way that post-exertional malaise (PEM) is prevented. The concept is also used in other energy-limiting illnesses such as POTS, MS, cancer-related fatigue etc.
Recently, there was a discussion on social media among patients and researchers about whether pacing should be called a treatment. Some argued yes, because it meets the medical definition of treatment. Others argued no because, among the general population, treatment comes with the expectation of improvement. However, that is not the goal of pacing, and it is not guaranteed.
Pacing is a management tool with the goals of stabilizing a patient’s condition and preventing further decline. Sometimes, improvement happens. But deterioration can also still happen, despite pacing. Pacing isn’t a guarantee of anything but, in the absence of causative treatments, it is the best we have.
And it may as well be called an art. For good pacing, one needs imagination, creativity, willingness to experiment, iron discipline, and support (financial, social, mobility aids, and so on). The latter is why many people cannot pace as they should. For example, a person who has small children but lacks support in caring for them cannot just lock themselves in a dark room for the 20 hours per day that would be necessary. So, they overexert constantly.
But how does pacing work, in theory? People use many different analogies to explain it. I will use that of a faulty smartphone battery.
Imagine you have an old smartphone whose battery only charges to 10%. Further, you can only charge it at home, during the night, and you cannot use the phone while it is charging. And, if the battery is completely drained before you manage to get home and charge it, it will be damaged further, and its capacity will be reduced to 7% permanently. Those are the rules of this Gedankenexperiment.
So, in the morning, you leave the house with your phone battery at 10%, knowing this must last until the evening. What do you do? Most likely, you only use the phone when absolutely necessary. No random scrolling, no listening to music, no watching videos, nothing fun.
Despite this, at noon your battery is at 5%. During your lunch break, a friend calls. You haven’t seen this friend for a while, are happy they called, and really want to catch up with them right then. But phone calls drain the battery so fast. What do you do?
Your battery is now down to 1% and you are on your way home when you run into your neighbor. They seem very stressed and desperate, so you ask what’s the matter. They tell you: “My phone just died, but I have to make an important call. Can I borrow yours? It will be a really quick call, promise!” What do you do? (Remember, you cannot use the phone while it’s charging, so taking the neighbor to your place and plugging the phone in is not an option and if, as is likely, the battery drains completely during the neighbor’s call, its capacity will be permanently reduced to 7% )
This is what people with myalgic encephalomyelitis have to do all day, every day. They have to keep an eye on their energy expenditure but without a display that tells them exactly how much they have left. They have to say no to fun things. They have to say no to activities they really want to do. They have to choose between being “rude” or “arrogant” and protecting their baseline. And my example uses a person who has some remaining function. For people with severe and extremely severe myalgic encephalomyelitis, pacing becomes a survival strategy with no room for error because just existing can exceed their physical capacity.
But, while the person with the faulty smartphone can just buy a new one, provided they have enough money, a person with myalgic encephalomyelitis is stuck in their body.
So, next time someone with myalgic encephalomyelitis says “No” to you, don’t be angry or disappointed. Think about what saying “Yes” would cost them. And be reassured that they are just as angry and just as disappointed as you are – and they likely feel guilty on top.