The sequence is almost always the same: A person recently diagnosed with or suspecting they have myalgic encephalomyelitis finds the relevant groups and bubbles online, describes how they feel terrible all the time, and asks what they can do.
The experienced patients tell them to pace, to cut back on all activities as much as possible for a while. To not do anything they don’t absolutely have to—or even less, if possible.
And without fail, the answer is: “But I am already doing nothing.”
When asked, that “nothing” often consists of hours online, watching TV, baking a cake, taking a bath, maybe even a short walk or working on that craft they had started before getting sick. That is what a healthy person does on a cozy weekend of doing nothing at home. And when one was used to a full workday, followed by the gym and a quick trip to the grocery store, it feels like nothing.
But with myalgic encephalomyelitis, there are people so sick that any one of these activities alone would be enough to cause PEM and, in the beginning, one has no idea what one’s baseline is.
Screens, especially with lots of movement and noise, like during a movie, use a lot of cognitive energy. That short walk might feel like nothing when one has run marathons, but it can be a huge orthostatic strain on the body, and even 20 minutes can be too much. Working on a craft might feel relaxing, but the combination of orthostatic stress and cognitive demands must not be underestimated.
Nothing, for a person with myalgic encephalomyelitis, really is nothing. No orthostatic stress (i.e. lying down), no sensory stimuli (i.e. no light, no screens, no music), no movement. For the most severely affected, that is their default. Everybody else sometimes calls it “radical rest” because it minimizes energy expenditure as much as practically possible.
But doing nothing is hard, and when the baseline allows for more and one wants to do things it often feels impossible. I have always thought of myself as a very disciplined person because I did things that society thinks require a lot of discipline: studying a “tough” subject at university, doing a PhD, training for a marathon. But those things I loved. They were my passion. The long runs on Sunday mornings through the city where I did my postdoc were like little adventures. Astrophysics had always been my dream, so living it was exciting and made me happy, even during times when I struggled.
But doing nothing—I hate that. Resting is boring. And the worst is, it’s never-ending. Marathon training is limited to 12 to 16 weeks, and at the end you have the satisfaction of having run 42.2 km and a medal and a T-shirt to show off.
The reward for diligent resting is no PEM—if you are lucky. There are no medals, no feeling of achievement, no societal admiration, and no end.
So, next time you wonder whether people with myalgic encephalomyelitis are maybe just a little lazy?Go lie in your bed with a sleep mask and noise-cancelling headphones (no music, no podcasts!). See how long you manage to just lie there in sensory deprivation. Then maybe you will find that people with myalgic encephalomyelitis are some of the most disciplined, resilient, and strong people there are. They deserve the same admiration as that ultramarathon runner, not scorn.