Living With Chronic Fatigue Syndrome (ME/CFS)

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Published: 26 April 2021

Chronic fatigue syndrome (ME/CFS) is a disabling illness estimated to affect up to 250 000 Australians (Emerge Australia 2020a).

What is Chronic Fatigue Syndrome?

Chronic fatigue syndrome (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 2020a).

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 2020a).

Note that PEM may not occur immediately after exertion and can start 24 hours later in some cases (Better Health Channel 2017).

The cause of ME/CFS is not yet understood and there is no cure (Healthdirect 2021).

Levels of Chronic Fatigue Syndrome

ME/CFS varies in severity and can be categorised into three levels:

  1. Mild ME/CFS: Activity is reduced by 50% or more
  2. Moderate ME/CFS: The patient is mostly housebound
  3. Severe ME/CFS: The patient is mostly bed-bound
  4. Very severe ME/CFS: The patient is bed-bound and requires help for all daily living activities.

(Emerge Australia 2020c)

chronic fatigue syndrome bed-bound

Causes of Chronic Fatigue Symptom

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 2020a)

Interestingly, between 75 and 80% of people living with ME/CFS are female, although the condition can affect men, women and children of any age, ethnicity and socioeconomic background (Emerge Australia 2020a).

Symptoms of Chronic Fatigue Syndrome

ME/CFS is more than just ‘chronic fatigue’, which is a symptom associated with many conditions but not an illness itself (Emerge Australia 2020a).

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

  • Persistent and severe fatigue
  • Sleep issues
  • Muscle, joint or head pain
  • Hypotension
  • 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 staying 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 sensitivity.

(Emerge Australia 2020a; Better Health Channel 2017; Healthdirect 2021)

These symptoms may fluctuate from hour to hour (Better Health Channel 2017).

chronic fatigue syndrome symptoms muscle pain
People living with ME/CFS may experience muscle, joint or head pain.

Consequences of Chronic Fatigue Syndrome

At least 25% of people living with ME/CFS are housebound or bed-bound due to severe symptoms (Emerge Australia 2020a).

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
  • Managing their family or personal affairs.

(CDC 2021; Better Health Channel 2017)

Some people may also encounter financial difficulties due to ME/CFS (Better Health Channel 2017).

How is Chronic Fatigue Syndrome Diagnosed?

Diagnosing ME/CFS often involves excluding other illnesses, as there is no single diagnostic test available (Better Health Channel 2017).

Emerge Australia recommends using the US National Academy of Medicine (NAM)’s proposed diagnostic criteria, which stipulates 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).

(NAM 2015; CDC 2019)

Treating Chronic Fatigue Syndrome

chronic fatigue syndrome treatment regular bedtime routine
Maintaining a regular bedtime routine may be helpful in managing the symptoms of ME/CFS.

As there is no cure for ME/CFS, treatment focuses on managing symptoms and optimising quality of life (Healthdirect 2021).

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 2020b).

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 2020b).

Clinicians are able to assist patients using 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 2020b).

Health professionals including psychologists, occupational therapists and physiotherapists may also be able to assist in treatment (Healthdirect 2021).

Other potentially helpful strategies for patients include:

  • Keeping a diary of symptoms in order to determine whether PEM is being triggered by particular activities or levels of exertion
  • Relaxing often
  • Maintaining a regular bedtime routine
  • Avoiding daytime naps
  • Avoiding caffeine, alcohol and nicotine
  • Avoiding watching tv, browsing social media, reading or listening to music when resting, as these activities stimulate the body.

(Healthdirect 2021; Emerge Australia 2020b)

It is essential that patients living with ME/CFS are never pushed past their limits, as this can be harmful to their health (Better Health Channel 2017).

Additional Resources


References

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