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:
- Much less ability to do activities that were normal before the illness.
- 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. It is often delayed, happening 12 to 24 hours after the activity.
- Sleep disturbance. People with ME/CFS usually don't feel rested even after a full night's sleep.You might sleep much longer than is normal, or have trouble falling and staying asleep.
- Problems concentrating.Thinking quickly and concentrating becomes very hard, especially when you are experiencing PEM. This is often called brain fog.
- Orthostatic intolerance. This is when symptoms get worse when standing or sitting upright. It includes feeling weak, dizzy, 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 can't 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, remembering or concentrating, 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 do get progressively worse.
