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HealthInfo Canterbury

Overview of 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, 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 or influenza, but it may also begin gradually. We don't yet understand what causes ME/CFS, but research is starting to suggest that people with ME/CFS may have changes at a cellular level. 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 get worse 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

People with ME/CFS experience overwhelming physical and mental fatigue. This is different to the fatigue that well people experience after strenuous exercise or a day's work. ME/CFS-associated fatigue can be disabling and does not readily get better with rest.

Other symptoms include:

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 do get progressively worse.

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

Written by HealthInfo clinical advisers. Endorsed by MECFS Canterbury advisors. Page created May 2019. Last updated September 2020.


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