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HealthInfo Waitaha Canterbury

Overview of ME/CFS

Tirohanga whānui ki te ME/CFS

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a debilitating, long-term illness that affects multiple systems of the body.

In New Zealand, there are an estimated 16,000 to 20,000 people with ME/CFS. It can affect people of all ages and ethnic and socio-economic groups, although women are more likely than men to be diagnosed with it.

Typically, ME/CFS starts after an infection, such as glandular fever, influenza or COVID-19, but it may also seem to begin gradually. We do not yet understand what causes ME/CFS, but research suggest that the immune system is involved. There is some evidence that the illness may run in families.

If you have ME/CFS, you become much less able to do things that used to be normal for you. You can have flu-like symptoms, pain, disturbed sleep and trouble concentrating. Your symptoms can get worse during and after physical or mental exertion and when you stand or sit upright.

ME/CFS can be difficult to diagnose, and other conditions have to be ruled out before a diagnosis is made. There is no specific test to diagnose ME/CFS.

Currently, there is no proven treatment or cure for this condition. But there are self-care steps you can take to help you manage the symptoms of ME/CFS and improve your quality of life.

Symptoms of ME/CFS

The key symptom of ME/CFS is post-exertional malaise (PEM). This is when your symptoms get worse after doing some physical or mental activity that wouldn't have caused a problem before you got ill. You may feel like you have the flu, with body pain and fatigue, and need to lie down to rest. PEM is often delayed, happening 12 to 48 hours after the activity.

You might also have some of these symptoms.

Some people also report other symptoms such as tender lymph nodes, nausea (feeling sick), loss of appetite, irritable bowel syndrome, bloating, diarrhoea, irregular heartbeat, chills and night sweats, increased sensitivity to foods, alcohol or medication and sensitivity to chemicals, odours, light and noise.

The severity of your symptoms can vary from day to day, or even within a day. Symptoms can also vary from person to person.

Outlook for ME/CFS

There is no good information available yet about recovery from ME/CFS.

Many people improve over the first two years. Children and young people seem to be more likely to recover fully.

After two years, rates of recovery are low but support and careful management can often increase quality of life. Most people's symptoms fluctuate in severity over time, but a minority get progressively worse.

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On the next page: Diagnosing & self-care for ME/CFS

Written by HealthInfo clinical advisers and MECFS Canterbury. Last reviewed June 2022.


Page reference: 229514

Review key: HICFS-70801