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Chronic Fatigue Syndrome

CFS; chronic; fatigue; ME; tired; youth; myalgic; encephalopathy; exhaustion; depression; syndrome; ;

Chronic fatigue syndrome is an illness which causes severe, disabling fatigue (tiredness) after physical and mental activity, far beyond what is usually felt. Resting and sleeping will help for a while, but even when people get 'enough' sleep, they still feel tired and get exhausted quickly.

Contents

Chronic fatigue syndrome (CFS) is something we have heard a lot about over the last few years, particularly in the media, but not many people actually understand what it is.

A person with CFS also often has muscle aches and pains, headaches, difficulties with concentrating and remembering, and tummy pains.

The symptoms persist for many months and sometimes years. (The word 'chronic' means long lasting and 'fatigue' means tiredness). There can be much frustration with this illness because it is not well understood by many people and so people who have CFS may not get the support and help they need. Sometimes the illness may be called Myalgic Encephalopathy (ME).

Who gets chronic fatigue syndrome?

It is difficult to know exactly how many people suffer from chronic fatigue syndrome, because it is often not recognised, or people may not seek any help. It seems that about 2 in a thousand people may have CFS. It is most common in people between 15 and 20 years old, and between 33 and 45 years old, but it can happen at any age, although it is rare for anyone to get it if they are under 12 years old. About 2 in 3 people who get it are women.

It has been claimed that CFS occurs most in white, middle class, well educated women, however better studies have shown that this stereotype is not true. It can occur in any group in any society, but perhaps middle class women are more likely to seek help, or more likely to have their story about their experience believed.

Most people who have CFS will be fairly well again within 3 to 5 years, but some may have much longer lasting difficulties.

What causes CFS?

The causes of CFS have not been worked out yet, despite a lot of research being done. It is possible that a viral infection could be the trigger for it.

Symptoms

The main symptom of CFS is becoming very tired (fatigued) after quite small amounts of physical or mental activity. The person is not able to do things that she was able to do easily before she became ill. Resting or sleeping does not stop this happening.

The illness often comes on quite quickly (the person is able to remember pretty clearly when it was that she started to feel so tired).

People with CFS also have other signs of being unwell including:

  • Difficulty with concentration and memory
  • Sore throat,
  • Tender lymph nodes ('glands'),
  • Muscle and joint tenderness and pain,
  • Headaches
  • Not feeling refreshed by sleep,
  • Feeling unwell (maybe feeling sick, loss of appetite).

People with CFS may feel dizzy when they stand up quickly. They may notice that they are sensitive to some foods, smells (such as paint thinners and many other chemicals), bright lights, cigarette smoke and they may not be able to drink alcohol. These effects of CFS are very variable.

Some people with CFS find that they become unwell with infections such as colds more often than they did before they developed CFS and that it can take a long time before they feel well again.

Diagnosis

There is no test which can diagnose CFS. No specific change in the body has been found apart from some small changes in brain function that can only be found with very specialised (and expensive) brain scans. The diagnosis is therefore based on the story of how the illness has affected the person, the set of symptoms, plus ruling out other illnesses which cause similar symptoms.

To be diagnosed with Chronic Fatigue Syndrome, the tiredness and other symptoms need to have been present for 6 months or longer, and the many other possible causes of chronic fatigue need to be ruled out. It might be recognised that the person is unwell and has severe fatigue well before 6 months has passed. This may be later recognised to be CFS, but before 6 months has passed, the illness might be called 'prolonged fatigue' or 'chronic fatigue'.

There are many other illnesses which cause feelings of fatigue, such as some viral infections, low levels of thyroid hormone, depression, sleep apnoea (obstruction of breathing while asleep), kidney disease, severe anaemia, cancer, eating disorders, alcohol or other drug abuse and extreme obesity. These will need to be ruled out before a diagnosis of prolonged or chronic fatigue can be made. Blood tests will usually be done, and sometimes other tests such as tests of ability to concentrate, think and remember. Other more complicated and expensive tests (such as MRI scans of the brain) are rarely needed.

Chronic fatigue syndrome and depression

It is not unusual for people with CFS to feel frustrated, angry and irritable. Most often people feel this way due to

  • missing out on doing things and being with friends,
  • frustration at not being able to do things which used to be so easy, 
  • lack of support for an illness which others cannot 'see' and for which there is no test. Other people often have trouble believing that a person with CFS really cannot do things. They may think that the person with CFS could manage if only she just tried.

Depression is different to CFS. When people with CFS spend time with friends, or do things that they usually enjoy, they still get a lot of enjoyment from them. They still want to do things. People who are depressed generally do not get pleasure from things that they used to enjoy. It is hard work pushing themselves to try things. People with CFS want to try things, but get exhausted afterwards.

Many people with CFS try antidepressant medication. Even if a person with CFS is not clearly depressed, some (but certainly not all) will feel a bit better on antidepressants. This may be because they sleep better or because of other effects that are not yet understood.

Management of CFS

If you have prolonged fatigue, it is essential that you seek medical advice to in case you have some other problem. Most people with long lasting fatigue do not have CFS. In many parts of the world most people live with chronic infections, insufficient nutrition and anaemia, and these all cause chronic fatigue.

There is no specific treatment for CFS. Many things have been tried such as medication which boosts or suppresses the immune system, medication that alters control of blood pressure and antidepressants. Some people may be helped by these treatments, but most are not.

What to do for yourself

Following are some ideas of what you can do to help yourself or to advise someone who has CFS.

  • It is best to maintain some activity each day. Spending a lot of time in bed will by itself make you weaker.
  • Pace yourself carefully and try to avoid unusual physical or emotional stress. A regular daily routine seems better than pushing hard to do something and then 'paying' for it by being even more tired for several days afterwards. Even on 'good days' it seems important not to do too much.
  • Keep to a regular sleep routine, avoid sleeping in late some days and staying up late.
  • Maintain contact with your friends. Sometimes the frustration can make you want to be alone, but keeping in contact with your friends over this time is also important, so that you do not become withdrawn.
  • Make sure you have a balanced and nourishing diet. Elimination diets (cutting out things such as milk products, meat etc) do not seem to make a difference for most people, and it can be hard to maintain good nutrition if you cut out too many things.
  • If your family, friends, school or work do not understand, and are not giving you the support you need, you could ask your doctor to talk to them or get some written information about CFS for them (perhaps off the internet). Remember, you do not look sick, and it will be hard for them to understand just how bad it feels.  
  • Avoid smoking or being around smokers.
  • Some therapies people have tried include acupuncture, homeopathy, naturopathy, chiropractic, tai chi, meditation, massage. They have not shown to be useful for all people with CFS, but some people have found some of them helpful.

School, university, TAFE and CFS

Many school systems now have guidelines about the support they can provide to young people who are unable to attend school full time for many different health reasons, including CFS. You may need fewer classes per day, distance education (working mainly at home) or extra time with assignments. Check with your year coordinator, school counsellor or the principal. Usually you will not be able to get these supports unless you have been seen and diagnosed by a doctor.

Counselling and support groups

Because CFS can have such a profound effect on a person's life, it is usually helpful to make contact with a counsellor who knows about the illness. A counsellor can provide information, ideas that may make a difference, plus support when you are trying to negotiate changes at home, work or school.

There are support groups for young people (Australian support groups can be accessed through the ME/CFS Society website below).

Resources

South Australia

References

Centers for Disease Control USA: Chronic Fatigue home page
http://www.cdc.gov/ncidod/diseases/cfs/index.htm

ME/Chronic Fatigue Syndrome Society SA Inc. information used with permission.
ttp://www.sacfs.asn.au/

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The information on this site should not be used as an alternative to professional care. If you have a particular problem, see a doctor, or ring the Youth Healthline on 1300 13 17 19 (local call cost from anywhere in South Australia).
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