The current position of Emerge Australia is to utilise the term ME/CFS as an umbrella term to reference all diagnoses of myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), and ME/CFS. This is due to our belief that research has not yet confirmed whether the illness is one condition, two conditions (ME and CFS), several different conditions or a condition with several subgroups.

Over the course of time, ME/CFS has been given many different names, including post-viral fatigue syndrome, Royal Free disease and, most recently, systemic exertion intolerance disease (SEID). There is much contention and debate as to the most appropriate name, and this has contributed to confusion and scepticism within the broader community.

‘Chronic fatigue’ is a symptom of many medical conditions, including things like cancer or multiple sclerosis, but it is not an illness in its own right. While profound fatigue is a symptom of ME/CFS, people living with the condition experience a wide range of other symptoms as well. Emerge Australia believes that ‘chronic fatigue’ should not be used as a name for ME/CFS, because it perpetuates the misunderstanding that the illness is primarily tiredness.

We consider that regardless of what name is used, post-exertional malaise (PEM) is the defining feature of this illness. PEM occurs when some or all ME/CFS symptoms are exacerbated after physical or cognitive exertion, leading to a reduction in functional ability.