What is myalgic encephalomyelitis/chronic fatigue syndrome?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness that causes extreme fatigue.

ME/CFS is a chronic (long-term) illness that can be disabling. This means it can impact your ability to:

• work
• study
• travel
• do everyday activities
• practice personal hygiene

ME/CFS can affect anyone. It is most common in females and adults between 20 and 50 years of age.

What are the symptoms of myalgic encephalomyelitis/chronic fatigue syndrome?

Different people with ME/CFS will have different symptoms. They can be:

• mild — you may have less energy and do fewer activities
• moderate — you may have less ability to move and need to rest often
• severe — you may be unable to leave your house and need help with self-care and daily activities

If you have very severe ME/CFS, you may be bedridden.

Fatigue caused by ME/CFS can appear suddenly or more slowly over time. It can last for a long period of time.

Other common symptoms of ME/CFS include:

• thinking problems, loss of memory or poor concentration
• headaches
• muscle pain or joint pain
• not feeling refreshed after sleep or sleep disturbance
• a sore throat
• feeling dizzy, lightheaded or sick
• feeling like your heart is beating fast

ME/CFS also causes post-exertional malaise (PEM). This is when your symptoms and fatigue get worse after physical or mental activity. This can happen hours or days after the activity.

PEM symptoms do not improve with rest and usually last for at least 24 hours. Recovery may sometimes take weeks.

What causes myalgic encephalomyelitis/chronic fatigue syndrome?

The cause of ME/CFS is not fully understood.

There are some factors that may contribute to ME/CFS, such as infection with:

• Epstein-Barr virus (glandular fever)
• Ross River virus
• cytomegalovirus (CMV)
• human herpes virus
• human parvovirus (fifth disease)
• rubella
• Q fever (coxiella burnetii)

Other factors may include:

• environmental exposures
• physical trauma
• a family history of ME/CFS

If you have ME/CFS, you may have other conditions, such as:

• fibromyalgia
• postural orthostatic tachycardia syndrome (POTS)
• irritable bowel syndrome
• migraines

When should I see my doctor?

You should see a doctor if you are concerned about your symptoms. They can help diagnose possible causes of your symptoms and help you manage them.

How is ME/CFS diagnosed?

There is no single test to diagnose ME/CFS. To diagnose ME/CFS, your doctor will:

• ask you about the symptoms you have
• ask how long you have had your symptoms
• do tests to rule out other possible causes of your symptoms like long COVID

Your doctor may diagnose ME/CFS if you have had symptoms for:

• 6 months or more as an adult
• 3 months or more as a child or adolescent

How is myalgic encephalomyelitis/chronic fatigue syndrome treated?

There is no cure for ME/CFS, but there are things you can do to help manage your symptoms and live with the condition.

Your doctor can help develop a plan to manage your symptoms. They may focus on whatever is bothering you the most. They can recommend ways to ease your symptoms, such as:

• good sleep hygiene to help with sleep disturbance
• pain relief for headaches and other pain
• healthy eating to help with irritable bowel syndrome

Your doctor may work together with other healthcare professionals. This may include:

• an occupational therapist — to help you make any home adaptations
• a physiotherapist — to help manage your symptoms and physical activities
• a psychologist — to help manage your symptoms through cognitive behaviour therapy or mindfulness

Your healthcare team can help to:

• improve your lifestyle
• improve your self-confidence
• prevent your symptoms

Pacing

Symptom-contingent pacing is a way to manage your energy levels by balancing rest and activity. This can help prevent worsening ME/CFS symptoms.

Pacing is when you carefully plan periods of rest and daily activities. To do this, you may:

• divide tasks and activities into smaller tasks that are easier to manage
• take control of your energy levels rather than following other people's advice when it doesn't feel right
• keep a diary of activities that cause your symptoms
• recognise cues that your symptoms are about to get worse
• take time to rest when these cues happen

An increase in your heart rate can mean that your symptoms may get worse. Monitoring your heart rate can help you keep it in a range that is "safe" for you.

Your symptoms may come and go, so you'll need to plan each day's activities carefully. Try to save your energy for the things that are most important to you.

Symptom-contingent pacing is different to graded exercise therapy. Graded exercise therapy is when you slowly increase your physical activity. It is not recommended for managing ME/CFS and may be harmful.

Living with myalgic encephalomyelitis/chronic fatigue syndrome

If you are diagnosed with ME/CFS, you may feel shocked or hopeless. Your doctor can:

• reassure you
• speak to you about your priorities and plans
• discuss options to help you achieve your goals

ME/CFS can make it harder to function. If you have severe ME/CFS, you may need support. This may include:

• help at home
• home modifications like shower chairs or stairlifts
• aids such as a wheelchair
• disability parking

What are the complications of myalgic encephalomyelitis/chronic fatigue syndrome?

Living with the symptoms of ME/CFS can be difficult and can affect your ability to function. This may place you at risk of depression, especially if you don't have social support.

Can myalgic encephalomyelitis/chronic fatigue syndrome be prevented?

Because the cause of ME/CFS is unclear, it is hard to prevent.

If you have symptoms of ME/CFS, seeing your doctor early can help prevent them from getting worse.

Pacing can help to prevent or lessen symptoms of PEM.

Resources and support

If you are living with ME/CFS, there are organisations that can help. You can visit:

• Emerge Australia for ME/CFS support — you can also call on 1800 865 321
• Bridges & Pathways for ME/CFS resources
• ME/CFS Australia to find resources and local organisations
• the Australian POTS Foundation for information on ME/CFS

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week.