Living with ME/CFS

ME/CFS is a disabling illness estimated to affect up to 250,000 Australians (DoHaAC 2024).

What is ME/CFS?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), also known as myalgic encephalomyelitis (ME), is a complex, chronic neurological condition affecting the brain, muscles, digestive system, immune system, cardiac system and other areas of the body (Emerge Australia n.d.a).

ME/CFS is characterised by post-exertional malaise (PEM), which describes the worsening of symptoms after physical or mental activity. Some people might experience PEM after going on a walk, while those with a more severe illness might trigger it by simply brushing their teeth or reading a sentence. Once triggered, PEM may persist for days, weeks or months (Emerge Australia n.d.a).

PEM may not occur immediately after exertion and can start 24 to 48 hours later in some cases (Better Health Channel 2022).

The cause of ME/CFS is not yet understood, and there is no cure (Healthdirect 2024).

What Causes ME/CFS?

While the exact cause of ME/CFS is unknown, it appears to be associated with:

• Infection
• Toxins in the environment
• Physical trauma (e.g. surgery or a car accident)
• Genetics (although the specific genes related to ME/CFS are unknown, the condition appears to run in families)
• Physical, mental or emotional stress
• Certain biological abnormalities:
  • An abnormal physiological reaction to exercise
  • Altered immune function
  • Changes to bacteria in the gut
  • Impaired energy production.

(Emerge Australia n.d.a)

Between 75 and 80% of people living with ME/CFS are female, and most people with the condition are between their 20s and 40s. However, the condition can affect people of any sex, age, ethnicity and socioeconomic background (Better Health Channel 2022; Healthdirect 2024).

There appears to be a significant overlap between ME/CFS and Long COVID, as some people with Long COVID experience PEM and present similarly to those with ME/CFS (Emerge Australia 2021; Better Health Channel 2022).

Symptoms of ME/CFS

ME/CFS is more than just ‘chronic fatigue’, which is a symptom associated with many conditions but not an illness itself (Emerge Australia n.d.a).

In reality, ME/CFS is a multi-systemic illness that can involve a variety of symptoms, including:

• Persistent and severe fatigue
• Sleep issues
• Widespread muscle, joint and head pain
• Changes in blood pressure
• Heart palpitations, rapid heart rate or shortness of breath caused by exertion or standing up
• Neurocognitive issues (e.g. confusion, concentration or memory problems, clumsiness, muscle twitching or tingling)
• Noise or light sensitivity
• Difficulty being upright
• Gastrointestinal issues (e.g. nausea, abdominal pain, bloating, irritable bowel syndrome, constipation, diarrhoea)
• Urinary issues
• Sore throat and tender lymph nodes
• Flu-like symptoms
• Extreme weight gain or loss
• Temperature regulation issues
• Food, medicine or chemical sensitivities.

(Emerge Australia n.d.a; Better Health Channel 2022; Healthdirect 2024)

These symptoms may fluctuate from hour to hour (Better Health Channel 2022).

Consequences of ME/CFS

At least 25% of people living with ME/CFS are housebound or bed-bound due to severe symptoms (Emerge Australia n.d.a).

Depending on the severity of their illness, people with ME/CFS may have difficulty:

• Performing daily tasks (e.g. having a shower or cooking)
• Keeping a job, attending school and participating in family and social life
• Functioning the way they used to
• Leaving the house.

(CDC 2024a; Better Health Channel 2022)

How is ME/CFS Diagnosed?

Diagnosing ME/CFS often involves excluding other illnesses, as there is no single diagnostic test available (Better Health Channel 2022).

Emerge Australia recommends using the US National Academy of Medicine (NAM)’s diagnostic criteria, which stipulate that:

The patient must be experiencing all three of the following symptoms:

1. A significantly impaired ability to participate in occupational, educational, social or personal activities compared to the patient’s pre-illness state that:
   • Has been persisting continually for over six months
   • Is accompanied by fatigue that is:
     • Often severe
     • New-onset (i.e. not lifelong)
     • Cannot be explained by exertion during exercise
     • Cannot be satisfactorily alleviated through rest
2. Post-exertional malaise (PEM)
3. Unrefreshing sleep.

The patient must also be experiencing either:

• Cognitive impairment, or
• Orthostatic intolerance (the worsening of symptoms upon adopting and staying in an upright position).

(CDC 2024b)

Treating ME/CFS

As there is no cure for ME/CFS, treatment focuses on managing symptoms and optimising quality of life (Healthdirect 2024).

Pacing is a strategy used to optimise a patient’s ‘energy envelope’ (i.e. the amount of energy that they can safely exert every day without triggering PEM). It involves breaking down activities into smaller tasks and taking a rest break (i.e. no stimulation and very little activity) between each ‘section’ of the activity. The goal is for the patient to end each activity with some ‘fuel in the tank’. In some cases, patients will be advised to only perform 50 to 60% of their energy envelope (Emerge Australia n.d.b).

For example, someone living with ME/CFS may pace themselves by taking a shower, resting, brushing their teeth and then resting again instead of showering, brushing their hair and combing their hair all at once (Emerge Australia n.d.b).

Clinicians can assist patients to use stepwise symptom management, which involves ranking symptoms from most to least problematic and exploring management options, starting with the symptoms that are most problematic (Emerge Australia n.d.b).

Health professionals including psychologists, occupational therapists and physiotherapists may also be able to assist in treatment (Healthdirect 2024).

People living with ME/CFS should never be pushed past their limits, as this can be harmful to their health (Better Health Channel 2022).