Chronic Fatigue Syndrome - the facts
chronic; fatigue; syndrome; myalgic; encephalopathy; encephalomyelitis; CFS; ME; depression; tiredness;
Contents
What is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome (CFS) is an illness which causes severe, disabling tiredness (fatigue) after physical and mental effort, 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. The symptoms last for many months and sometimes years. (The word 'chronic' means long lasting).
This illness can cause a lot of frustration because it is not well understood, so people who have CFS may not get the support and help they need. Sometimes the illness may be called Myalgic Encephalomyelitis, Myalgic Encephalopathy or ME.
Who gets Chronic Fatigue Syndrome?
- Chronic Fatigue Syndrome is quite rare, but it is difficult to know exactly how many people suffer from CFS, because it is often not recognised or people may not seek any help for it.
- It seems that about 2 to 4 in a thousand people may have CFS.
- Two age groups seem more likely to get it, people aged 15 to 20 years, and people 33 to 45 years, but you can get it at other ages. It is rare for anyone to get it if they are under 12 years old.
- About two thirds of people who get it are women.
- It has been claimed that CFS occurs most in white, middle-class, well educated women - but research has shown that this stereotype is not true. Perhaps middle-class women are more likely to seek help, or more likely to have their story about their experience believed.
- Anyone from any race or ethnic group can get CFS. Some studies have shown that it happens more often in people from lower socio-economic groups, but they often do not have their illness diagnosed.
- Most people who have CFS will be well again within 3 to 5 years, but some may have much longer lasting difficulties, and for a few people, the fatigue steadily gets worse.
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, but none of the viruses checked so far have been found to be the trigger.
Symptoms
The main symptom of CFS is a excessive tiredness after normal amounts of physical or mental activity. This tiredness comes back even if the person rests or sleeps, and lasts for many months or even years.
- The person is not able to do things that he or she was able to do easily before they became ill.
- This illness often comes on quite quickly (the person is able to remember pretty clearly when it was that he or 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 other chemicals), bright lights, cigarette smoke, and they may not be able to drink alcohol.
These effects of CFS are very variable.
Diagnosis
There is no test which can diagnose CFS.
- No specific change in the body has been found (apart from some very small changes in the way that the brain works - which can only be found by very sophisticated and expensive scans).
- The diagnosis is therefore based on a 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.
Feeling unusually tired is a very common symptom. Up to 25% of people who go to see their doctor complain of feeling very tired. CFS is rare, so most people who feel tired, even if the tiredness lasts for several weeks, do not have CFS.
- 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 scans of the brain) are rarely needed.
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'.
Josh says:
"It's bad enough feeling really lousy and tired all the time, but when you don't know why you feel like that, it's even worse. At least by the time you find out what you've got, you know that a whole heap of 'nasties' have been ruled out. You'll now have a 'label' for feeling so bad and you can concentrate on getting better. Have a look at our topic 'Chronic Fatigue Syndrome – living with it'."
Resources
South Australia
Websites
References
MedlinePlus (National Library of Medicine, US). Chronic Fatigue Syndrome topics:
http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html
Centers for Disease Control and Prevention (US). Chronic Fatigue Syndrome:
http://www.cdc.gov/ncidod/diseases/cfs/
Myalgic Encephalomyelitis Syndrome Society Inc. (information used with permission).
http://www.sacfs.asn.au/
Royal Australasian College of Physicians. 'Chronic Fatigue Syndrome: clinical practice guidelines' Medical Journal of Australia, 6 May 2002, Vol 176, Supplement.
http://www.mja.com.au/public/guides/cfs/cfs2.html
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).