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ME/CFS – what’s in a name?

Published November 2022 

Statement  

Emerge Australia uses the name ME/CFS as an umbrella term to encompass the varied diagnoses for which PEM is the core feature. Emerge Australia will continue to use this term until the science has definitively concluded whether the illness is one or more separate conditions, and there is consensus on a more appropriate name. 

Research has not confirmed whether the illness is one condition, two conditions (ME and CFS), several different conditions or a condition with several subgroups. ME/CFS includes all diagnoses of myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), and ME/CFS.   

The defining feature of ME/CFS is post-exertional malaise (PEM). Please click here for more information about PEM.  

 

Background / What is the issue? 

ME/CFS has had many names. These names include post-viral fatigue syndrome, Royal Free disease, Icelandic disease, epidemic neuromyasthenia, systemic exertion intolerance disease (SEID) and, most recently, Long COVID. Debate remains as to the most appropriate name. This lack of consensus has contributed to confusion and skepticism about ME/CFS within the broader community. 

Emerge Australia does not endorse the use of the term ‘chronic fatigue’ as this is not an illness. Chronic fatigue is a symptom of many medical conditions, like cancer or multiple sclerosis. Chronic fatigue should not be used as a name for ME/CFS because it suggests the illness is primarily tiredness. People with ME/CFS experience a wide range of symptoms. These symptoms include, but are not limited to, profound fatigue. 

 

Emerge Australia’s Position 

Emerge Australia uses the name ME/CFS as an umbrella term to encompass the varied diagnoses for which PEM is the core feature. Emerge Australia will continue to use this term until the science has definitively concluded whether the illness is one or more separate conditions, and there is consensus on a more appropriate name.  

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