See M.E. Ainsley’s Story - 28 Years to Diagnosis.

What is

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

(ME/CFS)?

Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a multifaceted and disabling condition that impacts various systems in the body, such as the brain, muscles, immune system, digestive system, and heart. The World Health Organization recognizes ME as a neurological disorder.

Who is Affected by ME/CFS?

ME/CFS can affect individuals of any age, background, or socioeconomic status.

  • Gender: About 75-80% of those affected are female.

  • Severity: Around 25% of individuals experience severe forms of the disease, which may confine them to their homes or beds.

  • Prevalence: It is estimated that between 0.4-1% of the population is affected by ME/CFS. In Australia, this could mean up to 250,000 individuals are living with the condition.

What Triggers ME/CFS?

The exact cause of ME/CFS remains unknown, though multiple factors may contribute to its onset, including:

  • Viral or bacterial infections (often cited as the most common trigger, but not always the case)

  • Environmental toxins

  • Physical trauma (such as surgery or accidents)

  • Genetics (while some families may see a higher occurrence of ME/CFS, specific genes have not yet been identified)

  • Stress (mental, emotional, or physical)

Some people may develop ME/CFS suddenly, while others notice gradual symptoms over a span of months or years. The reasons for these differences are not yet clear.

Although there are no specific tests or biomarkers for ME/CFS at this time, studies have identified a number of abnormalities in affected individuals, including:

  • Abnormal reactions to physical exertion

  • Altered immune function

  • Changes in gut microbiota

  • Disrupted energy production in cells

How is ME/CFS Diagnosed?

As no single biomarker currently exists, diagnosing ME/CFS relies on specific diagnostic criteria, which must include the presence of post-exertional malaise (PEM)—a worsening of symptoms following any physical or mental exertion. The National Academy of Medicine (NAM) criteria are widely recommended. It's also important to rule out other potential causes for the symptoms.

For healthcare professionals seeking additional guidance on diagnosing ME/CFS, a free online education module from the Royal Australian College of General Practitioners (RACGP) is available.

Common Symptoms of ME/CFS

Symptoms vary greatly from person to person, but common complaints include:

  • Post-exertional malaise (PEM): A worsening of symptoms following physical or mental activity

  • Sleep disturbances

  • Widespread pain in muscles and joints

  • Cognitive difficulties: Such as memory problems, confusion, and trouble concentrating

  • Sensitivity to light and/or noise

  • Dizziness and light-headedness

  • Orthostatic intolerance: Difficulty standing upright for extended periods

  • Gastrointestinal issues: Including nausea, bloating, and irritable bowel syndrome

  • Flu-like symptoms

  • Temperature regulation problems

  • Heightened sensitivity to certain foods, medications, or chemicals

Managing ME/CFS

There is currently no cure or definitive treatment for ME/CFS. However, symptom management is possible, with a focus on alleviating the severity of the condition.

  • Pacing and Rest: The primary strategy for managing symptoms is balancing activity with rest, avoiding overexertion. Pushing past physical limits can exacerbate symptoms and may lead to lasting setbacks.

Levels of Severity

ME/CFS can be classified into four categories based on symptom severity and how much it affects daily life:

  • Mild: A reduction of about 50% in normal activity levels

  • Moderate: Primarily housebound due to symptoms

  • Severe: Often bedridden and unable to perform basic daily functions

  • Very Severe: Totally bedridden, requiring assistance for even basic needs

Patients may experience shifts in severity over time, and in some cases, symptoms may fluctuate, with periods of improvement followed by setbacks. The reasons for this unpredictability are not fully understood.

Recovery Outlook

For most individuals with ME/CFS, the condition is long-term. Full recovery, meaning a complete return to pre-illness levels of function, is considered rare, with estimates suggesting less than 10% of individuals fully recover.