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Chronic fatigue syndrome (myalgic encephalomyelitis)

Published by Bupa's health information team, January 2008.

This factsheet is for people who have chronic fatigue syndrome (CFS) - also known as myalgic encephalomyelitis (ME) - or who would like information about it.

Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME), known as CFS/ME, is a condition that causes extreme physical and mental tiredness (fatigue) that seriously interferes with a person's daily life.

About CFS/ME

CFS/ME is now recognised by the Department of Health as a real, long-term disease.

CFS/ME can affect any age group, but most commonly starts in people aged between the early 20s and mid 40s. In children, the most common age of onset is 13 to 15, but it can occur in children as young as five. It's about twice as common in women.

Symptoms

CFS/ME is defined as a condition that involves a severe fatigue that usually has a clear starting point, often after a bout of illness, and that doesn't improve after rest. It makes you less able to cope with levels of activity in your work, school or social life that were previously normal for you. CFS/ME isn't the result of over-exercising. Even normal physical activity may make you feel very tired.

Common symptoms of CFS/ME include:

  • muscle and joint pain, but with no swelling
  • fatigue that lasts more than 24 hours after exercise or exertion at a level that you usually used to be able to manage without feeling tired
  • forgetfulness, memory loss, confusion, or difficulty concentrating
  • sleep disturbances - waking up feeling tired or unrested or having trouble getting to sleep
  • flu-like symptoms

Other symptoms that are sometimes present in CFS/ME include:

  • palpitations
  • sweating
  • feeling faint or problems with balance
  • painful glands in your neck or armpits
  • a sore throat
  • headaches
  • feeling sick
  • mood swings

These symptoms may be caused by problems other than CFS/ME. You should visit your GP for advice.

Your symptoms may vary throughout the day - some days they may be mild and other days more troublesome.

Causes

The cause of CFS/ME is unknown, but it can't be spread from person to person.

Some people develop CFS/ME after an infection, but it's not the same as the normal tiredness that often follows infection with the flu virus. Glandular fever is thought to be a common trigger for CFS/ME. However, many people who develop CFS/ME were previously fit and active.

There are several theories to explain CFS/ME, for example that it's linked to depression or disorders of the immune system (which helps your body fight infection) or the hormonal system. Some research indicates that the nervous system is also involved in CFS/ME. However, more research is needed.

Diagnosis

Your GP will ask about your symptoms and examine you. He or she may also ask you about your medical history. CFS/ME is a difficult condition to diagnose because there aren't usually any physical symptoms that can confirm the presence of the condition. You may need to have blood tests to rule out other illnesses, but there are no tests specifically for CFS/ME.

If your doctor thinks you may have CFS/ME, he or she may give you information about the condition and available treatments aimed at relieving your symptoms.

Management of CFS/ME

Treatment for CFS/ME aims to manage your symptoms. It will depend on your specific symptoms - a treatment that works for one person may not work for everyone. Your doctor may recommend one or more of the following treatment options.

Graded exercise therapy

This means starting with an activity that you can do comfortably, such as walking, and increasing your level of activity every few days. Getting too much exercise or increasing the level of exercise too quickly may make your symptoms worse.

Cognitive behavioural therapy (CBT)

CBT is a psychological treatment that is based on the theory that most unhealthy ways of thinking and behaving have been learned over a long period of time. Using a set of structured techniques, a CBT therapist aims to identify how you are thinking and how this can cause problematic feelings and behaviour. You will then learn to change this way of thinking. This will help you react more positively, which will boost your self esteem and confidence.

Referral to a psychiatrist or therapist for this treatment doesn't mean that your doctor believes your CFS/ME is "all in the mind". However, it isn't currently known why a psychological treatment should bring improvements in physical symptoms.

Pacing

This is a way of managing your lifestyle, so you find a level of physical and mental activity that you are comfortable with. Then you can make gradual increases, making sure you get enough rest after doing physical activity and not doing large bursts of exercise that can set you back. By pacing yourself in this way, you can make the most of your energy. This approach is supported by patient groups such as the ME Association.

Medicines

Pain relievers such as ibuprofen or paracetamol may help relieve muscle and joint pain, headaches, and other physical symptoms. Your doctor may prescribe antidepressants if one of your symptoms is depression. You should always read the patient information leaflet that comes with your medicine and ask your doctor for advice.

Complementary therapies

Complementary treatments such as relaxation therapy, acupuncture, homeopathy, special diets or mineral supplements are often recommended for people with CFS/ME. However, although some people may find them useful, there is very little scientific evidence that these are effective.

Living with CFS/ME

CFS/ME affects different people in different ways, so it's difficult to say how long it will take you to recover. CFS/ME isn't a short-term illness; it can last for months, if not years, so it's worth bearing in mind that although your symptoms are likely to improve, they may last for some time. There are lifestyle changes that you can make to help you live with CFS/ME. These include getting the balance right between your levels of exercise and rest, using treatment programmes such as pacing and graded exercise therapy (see Management of CFS/ME). You could also alter your daily routine so that you are getting enough good quality sleep.

Your needs for managing your symptoms may change over time. So, you may need a review of your treatment every few months by either your GP or a specialist. If the treatments aren't working for you, you may be referred to a multidisciplinary team including a doctor, psychiatrist, psychologist, occupational therapist, physiotherapist and liaison nurse.

Help and support

Having CFS/ME can have a major effect on many aspects of your life. You may find it helpful to talk to other people who are affected by CFS/ME, and your GP may be able to give you contact details of support groups. Please see Further information for some contact details.

Further information

Related topics

Sources

  • The symptoms and diagnosis of ME/CFS. ME Association.
    www.meassociation.org.uk
    accessed 5 January 2007
  • Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of CFS/ME in adults and children. National Institute for Health and Clinical Excellence (NICE), 22 August 2007.
    www.nice.org.uk
  • Prins, JB, van der Meer, JWM, Bleijenberg, G. Chronic fatigue syndrome. The Lancet 2006; 367:346-355
  • Report to the Chief Medical Officer of the CFS/ME Working Group. Department of Health. 2002.
    www.dh.gov.uk

This information was published by Bupa's health information team and is based on reputable sources of medical evidence. It has been peer reviewed by Bupa doctors. The content is intended for general information only and does not replace the need for personal advice from a qualified health professional.

Publication date: January 2008

 

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