Diagnosis

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can affect anyone of any age and background.  

While there is currently no diagnostic test for ME/CFS, an accurate diagnosis can be made by a doctor using accepted diagnostic criteria. 

Diagnosis should also involve the exclusion of other possible causes of your symptoms. It is also common for people with ME/CFS to have other associated conditions.  

Healthcare practitioners can access a Royal Australian College of General Practitioners (RACGP) accredited online education module that includes information on how to accurately diagnose ME/CFS.

Diagnostic criteria for ME/CFS 

“Diagnostic criteria” is the name given to a guide created for doctors to diagnose a specific condition. Diagnostic criteria list the signs and symptoms which are features of a condition and present for everyone who lives with that condition. 

There have been many different diagnostic criteria developed for ME/CFS over several decades. However, as most of these do not list post-exertional malaise (PEM) as a core feature of the condition, they are no longer recommended. 

US National Academy of Medicine (NAM) criteria 

In its 2015 report, NAM noted that an estimated 90% of people living with ME/CFS are undiagnosed. The NAM criteria were designed to simplify the diagnostic process, to make it easier for doctors to diagnose ME/CFS when it is present in their patients.  

Early diagnosis helps ensure people living with ME/CFS get advice to live within their energy limits and minimise the risk of their condition worsening.  

Emerge Australia advocates the use of the US National Academy of Medicine (NAM) criteria for doctors to diagnose ME/CFS.  

Symptoms required for a diagnosis of ME/CFS using the NAM criteria 

  • substantial reduction in the ability to engage in pre-illness activity. This must have persisted for six months or more, and be accompanied by profound fatigue that isn’t substantially improved with rest 
  • post-exertional malaise (PEM), which is the worsening of symptoms following physical or mental exertion 
  • unrefreshing sleep

Plus, either: 

  • problems with memory, thinking or concentration 
  • difficulty being upright (dizziness, sweating, nausea or other symptoms when standing that are reduced when lying down) 

These are not the only symptoms that people with ME/CFS experience, nor are they the only common symptoms. They are the minimum symptoms required to meet the diagnosis of ME/CFS using the NAM criteria. To provide your doctor with a complete picture of your health it is important to tell them all the symptoms you experience. 

Exclusion of other possible causes for your symptoms  

To exclude other potential causes for your symptoms, your doctor may need to run additional tests or refer you to a specialist.  

For example, people with abnormal thyroid levels, low levels of iron or coeliac disease may have some of the symptoms outlined in the NAM criteria.  

Once all other potential causes of your symptoms are eliminated, a clear diagnosis of ME/CFS using the NAM criteria can be made. 

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