Post-exertional malaise, or “payback,” is one of the key diagnostic criteria for myalic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It is also one of the symptoms that is hardest for people who haven’t experienced the condition to understand.
I often think of it as being similar to a hangover, which is something I think most people have experienced. As a healthy person, one night you might go out and have too much to drink. During the night you generally feel fine, unless you take it too far, but the next day you experience payback in the form of a hangover. You will feel tired, nauseous, headachy and maybe feel generally unwell. For healthy people this will normally last a day, unless you’re very luck or unlucky.
With ME/CFS, any activity can cause this “hangover” or payback. For some people it might be simply getting out of bed to use the bathroom, or even just sitting up in bed. For others, it could be going for a short walk, doing cleaning, or seeing friends. Sometimes it can be caused by a bad night’s sleep, or emotional trauma. It’s not always easy to predict what will cause payback, and sometimes this can last days, weeks or even months.
Many people who live with ME/CFS experience symptoms all the time. Common symptoms include: debilitating fatigue, muscle pain, headaches, cognitive difficulties, flu-like symptoms, sensitivity to light and noise, and many more. When in payback these symptoms are intensified, and sometimes people will feel “poisoned,” not unlike the poisoned feeling one gets from a hangover.
I think it is hard for healthy people to fully grasp what it is like for those with ME/CFS to live with post-exertional malaise. I also think it is easy for people to forget that we always feel ill, especially as often we don’t look it. Most people living with ME/CFS are incredibly brave and strong people who tend to put a brave face on. People around them can’t fully see what it is they’re going through.
I hope this has helped you to understand a bit better what it is like for people living with ME/CFS. There are many different ways that people have attempted to explain the concept of payback, and this is just the one I feel is the most relatable for many. There are also explanations such as the spoon theory, and the bank balance analogy, and the phone battery analogy, which I urge to you look into if you feel like you still want to know more.