Explaining Payback In ME/CFS

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 non-sufferers to understand.

I often think of it as being similar to a hangover, which is something I think most people will have experience of. As a healthy person, one night you might go out and have too much to drink. On the night you generally feel fine, unless you take it too far, but the next day you suffer ‘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 lucky 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 (a particular one for me) 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 ME/CFS sufferers 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 besides. 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 non-sufferers to fully grasp what it is like for ME/CFS sufferers 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 ME/CFS sufferers are incredibly brave and strong people who tend to put a brave face on things to those 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 sufferers of 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. I have shared some links below.

Thank you

Spoon Theory (this is used to help explain other Chronic Illnesses as well as ME/CFS): https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Bank Balance Analogy: This analogy likens post-exertional malaise and energy to a building society account. The amount of energy you have is the ‘money’ in your account. The more money you have the faster your interest builds. Regular withdrawals lessen the amount, and if you go overdrawn, you have to pay back what you used plus interest.

Phone Battery Analogy (included in a broader article): https://themighty.com/2017/06/explaining-chronic-fatigue-syndrome-cfs/