“Systemic” means that it affects the entire body.
“Exertion intolerance” refers to the hallmark symptom of ME/CFS, which is called post-exertional malaise. It causes people to suffer a major upturn in symptoms after even mild exertion. Some people are able to tolerate mild or moderate levels of activity, while others are unable to even take care of their most basic needs without consequences to their health.
The use of “disease” in the new name marks the first time this illness has been recognized as a disease (as opposed to a syndrome) in an official capacity.
Advocating for a Different Name
Chronic fatigue syndrome advocates have long called for a new name because the old one trivializes the condition and makes it sound like people with it are just sleepy instead of severely ill.
This new name shrugs off the stigma of and misunderstandings about “chronic fatigue syndrome” by:
- Letting people know it’s a body-wide affliction,
- Putting forth the defining symptom,
- And, at long last, recognizing it as a disease.
Still, this is a name that’s not likely to catch on.
Over the last several years, many people in the patient, advocate, and research community have adopted some version of myalgic encephalomyelitis: ME, ME/CFS, or CFS/ME. The panel behind the report, though, says there’s not enough scientific evidence to support that name. Much of the medical community agrees. Meanwhile, a lot of people using ME have a strong emotional attachment to it and are unlikely to give it up.
An older name that’s still used by some patients is CFIDS, which stands for “chronic fatigue and immune dysfunction syndrome.”