Activity Levels

Some people are more limited than others. The sickest are bedbound, while some people are self-reliant, and some are able to work or attend school. Some people with CFS/ME can push themselves to do extraordinary things but feel much worse afterward. One notable CFS/ME sufferer is soccer legend Michelle Akers, who reported struggling with the illness for much of the later years of her career. However, extreme sufferers like those confined to bed felt that an active professional athlete "poster child" like Akers only helped to trivialize the syndrome in the eyes of the public (the infamous "Michelle Akers has it and she plays soccer, so why are you complaining?" reaction), and thereby made it much more difficult for those who are highly incapacitated to be taken seriously.

Payback Effect

One of the most common and recognizable aspects of CFS/ME is what is called "post-exertional malaise," or, more colloquially, the "Payback Effect." When people with CFS/ME exert themselves, their symptoms get worse afterward. Exertion could be physical or mental exercise, doing routine tasks, such as driving, cleaning, or eating, or handling a stressful situation. The harder the exertion and the longer it lasts, the worse the symptoms will be afterward. The payback effect leads to a few typical patterns, sometimes called "The Yo-Yo Pattern" and "The Downward Spiral."

The Yo-Yo Pattern

The Yo-Yo Pattern happens when people work very hard at some activity, but only on good days. This leads to worse symptoms which prevents them from working for the next few days. When they feel better, they work extra hard to make up for the bad days - or just because they're so excited to feel good - but this leads to them feeling bad again.

The Downward Spiral

The Downward Spiral happens whenever feeling bad puts a patient in a situation that makes them feel worse. This is similar to the yo-yo, but in the downward spriral, people don't have time to recover on bad days. Here are some examples:

• A person works very hard one day at work. This makes them feel worse, which leads to them not working as effectively. In order to catch up, they work harder, which leads to them feeling worse.


• A person loses their appetite when they don't sleep well because they're so tired, they don't realize they're hungry. Then, they don't sleep well at night because they wake up very hungry.


• A person does not feel well, and therefore cancels a date with a friend. This leads to them feeling depressed and sleeping poorly, which leads to them cancelling more dates.