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Chronic Fatigue Syndrome (CFS) is a poorly understood illness. Many people suffer from it, but there's no definitive cure.
It's prolonged severe fatigue that isn't improved by rest or sleep and isn't attributable to another cause.
No-one really knows the underlying reasons for CFS. There are many theories including bacterial infections, or viral infections, imbalanced hormones, psychiatric problems and immune system malfunctions. Often CFS will follow a bout of glandular fever or a similar infection. Sometimes it's triggered by a period of high anxiety.
CFS tends to run in families so there may be a genetic link. Sadly it's just not understood and is diagnosed when other known illness are ruled out.
Chronic Fatigue has several names including myalgic encephalomyelitis (ME) and a newer suggestion of systemic exertion intolerance disease (SEID). Many people don't like the name CFS as it implies they are just simply tired.
Fibromyalgia is an illness sharing many symptoms but one in which the overriding symptom is pain rather than exhaustion.
It is thought around 250,000 people in the UK suffers from CFS and around one million Americans.
Young adults in their early twenties through to mid-40 year olds suffer most frequently but it can strike any age including children, most notably 13-15 year olds.
Tiredness is the overriding symptom, but that's not 'lack of sleep' tiredness. Sufferers say the tiredness is an exhausting haze, like running through mud or swimming against a tide. Some sufferers can only stand for half an hour at a time and even brushing their teeth leads to exhaustion for the rest of the day.
Other symptoms include:
CFS can affect people mildly or severely. The NHS define cases as follows:
Many in the medical field have treated CFS as a psychological illness.
Some historical research refers to an outbreak of CFS at the Royal Free Hospital in London. In 1955, 300 people were affected and the hospital closed for three weeks. Pathology samples suggested inflammation triggers in the spinal cord and brain, but no actual cause was found. Investigating officers concluded it was due to 'mass hysteria' two decades later.
Then in the 1980s, psychiatrists in the US and UK investigated an outbreak in Nevada, USA and concluded it was due to psychological illness. They believed the patients had convinced themselves they were ill. Modern researchers, such as Garth Nicolson, founder of the Institute for Molecular Medicine in California, have investigated CFS soldiers returning from the Gulf War in the 1990s. He believes that CFS might be triggered by infection, which is why it may run in families.
Nicolson goes on to say that he understands CFS as a term for many different diseases all due to different causes from psychological to neurological impairment to auto immune dysfunction.
So it may be that CFS is a whole collection of illnesses that produce overwhelming fatigue as a symptom. For example, breathlessness is a symptom of asthma, anxiety and heart failure - all very distinct illnesses with a similar symptom.
There is no blanket treatment for CFS because the cause is not known. Individuals must be treated in different ways.
Currently treatment consists of managing the symptoms. A tailored treatment plan will include:
People can improve over time as periods of feeling well co-exist with symptom flare-ups, but some people remain ill for years without any sign of improvement.
Sufferers report that disbelief is one of the most distressing aspects of CFS, so it's important to be aware of your mental health. If you have CFS join a support group, online groups are numerous, or there may be a local group that meets in person. Your doctor can point you in the right direction.
Give up smoking, and keep your weight at a healthy level by eating well. Include plenty of fruit and vegetables and cut out sugar, fat and salt. This is particularly important if exercise is too much.
Do try to move about each day and stretch your muscles. A sedentary lifestyle contributes to other illnesses such as heart disease, diabetes, cancer and backache. It isn't easy, but movement may help to prevent deterioration of your health in other areas. It's important not to overdo it though; a structured exercise program from your doctor can support awareness of your abilities and help to keep you moving.
When you're so tired you can't hold a conversation, socialising takes a backseat but keeping in touch with others is vital because social exclusion is unhealthy.
Try to talk to someone each day. Online support groups are a lifeline for seriously ill folk and you'll get a chance to talk about your illness without the worry of boring or taking advantage of friends and family.
CFS is not a 'pretend' illness. It's a very real set of symptoms that simply haven't been properly decoded yet. Keep in regular touch with your doctor and stay as healthy as you can.