Managing chronic fatigue syndrome (myalgic encephalomyelitis)

Written by Dan Rutherford, GP



We don't know why people get chronic fatigue syndrome (CFS/ME), but it happens every day.

One of the problems reported by many CFS/ME sufferers is the lack of specific guidance on how to tackle the condition.

Unfortunately, no one method of treatment stands out as better than any other; a mixture of several approaches works better than one alone.

Individual treatment is essential in CFS/ME, making it difficult to present a set scheme that will work for everyone. Although the points listed below are the main ones you will need to consider, exactly how you do this will be up to you.

Some provisos are necessary. The first is that the diagnosis must be established by a qualified medical practitioner. Second, the role of your own medical adviser should remain central to the management of your illness. Although some doctors remain dismissive of CFS/ME and are therefore incapable of treating it, most are supportive and wish to be as helpful as possible. So long as your doctor's advice is working for you, stick with it.

How to manage CFS

Accept the illness.

Accept the equal importance of mind and body.

Get connected to other people with CFS.

Get a good doctor.

Make sure family and friends understand CFS.

Map out what you could do before CFS; compare it to what you can do now.

Set priorities for improvement.

Make a recovery plan.

Sort out employment issues.

Sort out pain control.

Look at your illness beliefs and reactions.

Allow time for relaxation.

Consider complementary treatments.

Seek specialist advice if progress is slow or disability severe.

Maintain a positive outlook.

1. Accept the illness

The starting point of an illness is when you begin to feel unwell, not when the diagnosis has been made. Because the onset can be abrupt and the amount of disability marked, it can be very hard to accept this illness.

Similarly, family and friends can feel bewildered by such a dramatic change in somebody previously quite well. And the realisation that CFS/ME can last for months or years can itself lead to low thoughts or depression.

CFS/ME is a disruptive illness, but it is not fatal. Most people recover, and everyone can learn to live with the condition. The idea that certain personality types are the only ones who are affected is wrong - anyone can get CFS/ME. However, the reality of the condition means that accepting the illness may be impossible until some recovery is already underway.

2. Accept the equal importance of mind and body

There is some evidence that patients who pursue a purely physical cause for CFS/ME may end up feeling ill for longer. Doctors who can't treat a condition until it has been 'scientifically proven' to exist aren't good at treating conditions like CFS/ME. Both positions may be driven partly by the desire to explain illness fully and partly by the mind/body split thinking that we've been taught to accept as standard.

It's healthier and more accurate to accept that being ill involves both physical and psychological components. To make progress with CFS/ME, you need to work on both your mental and physical wellbeing.

3. Get connected

Although having CFS/ME can be an isolating experience, the reality is the condition affects up to 200,000 people in the UK alone. Talking to other people with CFS/ME can be invaluable in helping you cope with the illness. Local support groups listed in the paper or phone book are a good place to start.

The ME Association has recently expanded their support service ME Connect, which is available by phone, fax or email every day of the year.

Web-based discussion groups can also be a great source of support, allowing you to be frank and anonymous at the same time. Care must be taken when using online forums: never post personal details such as your address, email account or telephone number.

4. Get a good doctor

If you can't get on with your GP and have been unable to resolve the difficulties by discussion, you should consider consulting another doctor. The ME Association has a database of doctors who have a special interest in CFS/ME.

5. Keep friends and family informed

Having CFS/ME changes your life and has an impact on those around you. It may influence your role and relationships at home and alter your working capacity, working relationships and social life. A lot of problems that arise from these changes are the result of inadequate or inaccurate information about CFS/ME. For this reason, key people in your life need to be aware of the facts concerning CFS/ME.

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