HealthInfo Aoraki South 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.
- Much less ability to do activities that were normal before the illness.
- Overwhelming physical and mental fatigue. This is different to the fatigue that well people experience after strenuous exercise or a day's work.
- Sleep disturbance. People with ME/CFS usually do not feel rested even after a full night's sleep. You might sleep much longer than normal or have trouble falling and staying asleep.
- Problems concentrating. Thinking quickly and concentrating becomes very hard, especially when you're experiencing PEM. This is often called brain fog.
- Orthostatic intolerance. This is when your symptoms get worse when standing or sitting upright. It includes feeling weak, dizzy and nauseous (sick) and having blurred vision and numbness or pins and needles in your hands.
- Pain. This is common and can include muscle and joint pain, headaches, nerve pain and frequent sore throats. Some people may also get fibromyalgia.
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.
- Mild – you can move about and can care for yourself. You can do light housework but it's hard. You may be well enough to work or attend school or study if you have plenty of help with other aspects of your life.
- Moderate – you're restricted in most activities of daily living. You've probably stopped work or education.
- Severe – you probably cannot do very much for yourself, spend most of your time in bed and may depend on a wheelchair. You're also likely to have severe problems thinking, communicating and be sensitive to light and noise.
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.
HealthInfo recommends the following videos
- Bateman Horne Center – What is ME/CFS?
An overview of the symptoms of ME/CFS.
- Broken Battery – What is ME/CFS?
This is a good overview of the illness, conveying a lot of the key ideas. It includes information on the most severe ME/CFS.
- Listening to Families – Chronic fatigue syndrome
A series of short videos providing answers to families' questions about ME/CFS. The videos include information about causes, diagnosis, management and living with ME/CFS.
HealthInfo recommends the following pages
- Centers for Disease Control and Prevention – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
More detailed information about ME/CFS, symptoms, diagnosis and treatment.
- Emerge Australia
Australia’s national support and advocacy organisation for people living with ME/CFS. Provides well considered information.
- M.E. Awareness NZ
National advocacy organisation. They provide a list of GP education and other information suitable for sharing with your health team.
- ME/CFS Canterbury
Regional support and advocacy organisation for people with ME/CFS in Canterbury.
On the next page: Diagnosing & self-care for ME/CFS
Written by HealthInfo clinical advisers and MECFS Canterbury. Last reviewed June 2022.
SourcesReview key: HICFS-70801
