Chronic Fatigue Syndrome has a number of different names, these being:
- Myalgic Encephalopathy or “ME”
- Chronic Fatigue Syndrome or “CFS”
- Post-Viral Fatigue Syndrome or “PVFS”
- Chronic Fatigue Immune Dysfunction Syndrome or “CFIDS”
Despite the confusion about names it is estimated that it currently affects some 250,000 people in Britain, yet there is still uncertainty about its cause. It seems to affect a range of different type of people and across all ages. It is about three times as common in women as in men.
Sufferers experience widespread symptoms which vary from person to person. Whilst the most common symptom is persistent severe tiredness (fatigue), other symptoms range from painful muscles and joints, disturbed sleep patterns, gastric disturbances, poor memory and concentration.
For some the effects may be minimal but in a large number, lives are changed dramatically: in the young, schooling and higher education can be severely disrupted; in the working population, employment becomes either very difficult or impossible. Social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years.
The cause of CFS is not known. There are various theories - but none has been proved. In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, inherited genetic susceptibility (it is more common in some families), exhaustion and mental stress, depression, or traumatic event such as bereavement, divorce or redundancy.
How is CFS diagnosed?
There is no test that proves that you have CFS. A doctor will usually diagnose CFS based on your symptoms. Some tests are usually done to rule out other causes of your tiredness or other symptoms. The medical definition of CFS states that symptoms should have lasted for at least four months in adults and three months in children and young adults.
Managing the symptoms
Painkillers may help if muscle or joint pains are troublesome symptoms. Eating little and often may help any feeling of sickness (nausea).
Depression can occur in people with CFS (as it can in many other chronic diseases). Depression can make many symptoms worse. Antidepressants may be prescribed if depression develops.
Management of quality of life and function
- Managing sleep - any changes to your sleep pattern (for example, having too little, or even too much sleep) may actually make your tiredness (fatigue) worse. This includes sleeping in the daytime, which should ideally be avoided. Any changes to your sleep pattern should be done gradually.
- Managing rest - rest (rather than actual sleep) is very beneficial. You should introduce rest periods into your daily routine. These should ideally be limited to 30 minutes at a time and be a period of relaxation.
- Time based Pacing - learn how much you can cope with and moderate your activities. Don’t fall into the Boom or bust cycle. Instead of reaching burn out where you overdo things and are then unable function for several days, take breaks before the fatigue begins (not after fatigue gets bad), you will be able to return to activity sooner and will actually get more done.
- Relaxation – this can help to improve pain, sleep problems and any stress or anxiety. There are various relaxation techniques (such as guided visualisation or breathing techniques and even meditation techniques) which you may find useful when there are built into your rest periods.
- Diet - it is very important that you have a well-balanced diet. You should try to avoid any foods and drinks to which you are sensitive. Eating small, regular meals which contain some starchy foods is often beneficial.
There is currently no accepted cure and no universally effective treatment. An early diagnosis together with adequate rest during the acute phase and during any relapse appear to bring the most significant improvement.
Treatments available are:
- Graded exercise therapy (GET) - GET is a gradual, progressive increase in exercise or physical activity, such as walking or swimming. The level of exercise recommended will depend upon the sufferer’s symptoms and current level of activity. Graded exercise is a structured treatment during which people are closely monitored. It is not the same as going to the gym or doing more exercise by yourself. It should be tailored to suit each individual case.
- Cognitive behavioural therapy (CBT) - Cognitive therapy is based on the idea that certain ways of thinking can fuel certain health problems. Behavioural therapy aims to change any behaviours that are harmful or not helpful. It is not a cure but may help to manage the condition.
- General support - Depending on the severity of illness, other support may be needed. For example, carers, nursing support, equipment and adaptations to the home to help overcome disability. Your doctor will be able to advise you on these.
What is the outlook (prognosis)?
In most cases, the condition has a fluctuating course. There may be times when symptoms are not too bad, and times when symptoms flare up and become worse (a setback). The long-term outlook is variable:
- Most people with CFS will show some improvement over time, especially with symptoms.
- In some cases, the condition is severe and/or goes on for many years. Those who have been affected for several years seem less likely to recover.
- The outlook in children and young people is usually better.
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