What is chronic fatigue syndrome?

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a chronic and disabling illness which causes extreme fatigue that cannot be explained by any other medical condition. If you have ME/CFS you are likely to feel very tired, very often, even if you have not been active. You may also have a host of other symptoms.

Doctors do not yet understand the cause or causes of ME/CFS, and there is no simple cure. But if you or your child has ME/CFS, your doctor can suggest treatments you may find helpful.

What are the symptoms of ME/CFS?

The most common symptom is ongoing, unexplained overwhelming tiredness or fatigue (often described as flu-like symptoms) which worsens after exercise or mental effort. This is known as post-exertional malaise (PEM). The level of activity that triggers PEM will vary from person to person and can depend on how severe their condition is. PEM is sometimes delayed and can last for a few days. A more serious relapse can last for weeks or months.

A common misconception is that people with ME/CFS have 'chronic fatigue’ and are just very tired. Persistent and profound fatigue is just one symptom of ME/CFS.

Other symptoms may include:

• headaches
• muscle pain
• joint pain
• sore throat
• loss of memory or poor concentration
• not feeling refreshed after being asleep
• enlarged lymph nodes
• light-headedness or dizziness
• gastrointestinal changes such as nausea, constipation or diarrhoea
• sensitivities to light or noise, food, medications or chemicals
• problems with temperature regulation

Some people may experience only mild symptoms, but others may develop more severe symptoms.

What causes ME/CFS?

The cause of ME/CFS is not known, but factors that may be involved include:

• infection (a common trigger)
• environmental toxins
• physical trauma, such as surgery
• genetics — ME/CFS can run in families
• physical or emotional stress

How is ME/CFS diagnosed?

There is no single test to diagnose ME/CFS. Your doctor will diagnose ME/CFS based on your symptoms and how long you have had them. Your doctor may do some tests to rule out other possible causes of your symptoms.

Patients can be diagnosed with ME/CFS only after they have had symptoms for 6 months or more.

Check your symptoms with the healthdirect Symptom Checker to get advice on when to seek medical attention.

How is ME/CFS treated?

There is no cure for ME/CFS, but there is still a lot your doctor can do to help you relieve symptoms and improve quality of life.

Any commercially available product or treatment promoted as a cure for ME/CFS should be treated with caution.

Current treatments have 2 key aspects:

• Pacing and rest: pacing is a strategy designed to help people with ME/CFS live within their energy envelope — this is the amount of energy they can safely use without triggering PEM. It breaks down activity into short bursts, interspersed with rest, and aims to leave some energy in the tank at the end of the day. For more information about pacing, see the Emerge Australia fact sheet.
• Stepwise symptom management: this involves ranking symptoms and exploring ways to reduce symptoms, starting with the most problematic.

Your doctor may also suggest working with other healthcare professionals such as a psychologist, occupational therapist or a physiotherapist.

You may want to talk to your doctor about how to manage work or school commitments while you are sick and when you feel you might be ready to return.

It may also help if you:

• keep a diary to see whether certain activities or levels of exercise tend to trigger PEM
• relax as much as possible
• try to go to bed at the same time each night and limit daytime napping
• avoid caffeine, alcohol, nicotine and anything else that could affect your sleep

Where can I find more resources and support?

• Call Emerge Australia info line — 1800 865 321
• Join a peer support group
• Find resources at Bridges & Pathways