May 14, 2001
With a name that suggests simple tiredness, Chronic Fatigue Syndrome (CFS) is one of the world's most misunderstood, and controversial illnesses. Jennifer Paterson investigates.
The American Chronic Fatigue and Immune Dysfunction (CFIDS) Association classifies it as being characterized by: "incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat, and headache."
Symptoms of the disease differ widely from person to person, making diagnosis of the disease incredibly difficult. CFS affects persons of every age, racial, ethnic, and socio-economic background and research has shown that CFIDS is about three times as common in women (522/100,000) as men, a rate similar to that of many autoimmune diseases, such as multiple sclerosis and lupus.
Sam Keen has suffered from CFS for the past four years:
"Being hit by a truck sometimes feels like a great description for what I call an 'attack' of Chronic Fatigue Syndrome (CFS). Over the last four years, every few weeks, I have spent three days to a few weeks suffering typical CFS symptoms of a splitting migraine-type headache, diarrhoea, painful nausea, aching joints and bones and difficulty sleeping or difficulty waking up.
But the hardest thing about these attacks has not been the pain or the inability to eat a wide variety of 'normal' foods; it was the loss of control over my mental functioning and emotions.
A CFS attack brings with it a fog, clouding my thoughts and emotions, leaving me grasping to remember names, facts and ideas that were previously perfectly clear and struggling with my emotional wellbeing and self-esteem.
CFS, defined as unexplained exhaustion for more than six months, has no real cure or even clear diagnosis among traditional medical doctors. The first doctor I saw gave me a round of tests and then told me I had irritable bowel syndrome, handing me a pamphlet as she waved me out the door.
For almost four years I followed advice of numerous practitioners on rest, diet, supplements of many colours and flavours and patience."
At the moment there is no one test which can clearly identify the disorder. Doctors generally arrive at a diagnosis by excluding other illnesses with similar symptoms and comparing a patient's symptoms with the 1994 International Case Definition.
Complicating matters is the fact that overlapping symptoms can occur with a wide range of diseases such as fibromyalgia, Gulf War Illnesses, and multiple chemical sensitivities, Lupus, hypothyroidism, and Lyme disease.
Doctors will generally take a complete medical history, and complete blood tests to exclude alternative diagnoses. Other tests that are designed to identify central nervous system problems or viral syndromes may be ordered as well, depending on patient symptoms.
Doctors will also often use the case definition for CFS to assist diagnosis. The 1994 case definition criteria calls for four of eight symptoms to be present along with fatigue that interferes with physical, mental, social and educational activities. Both the fatigue and symptoms must have occurred for (at least) a six-month period.
As the disease is so difficult to diagnose, treatment is similarly challenging. There is no known universal treatment for CFS, a wide range of complementary strategies available, based on the patient's symptoms.
Medical Treatments for the disease include medications for pain; sleep disturbances; digestive problems such as nausea; depression and anxiety; and flu-like symptoms.
Supportive treatments are often used to complement medical treatment and may include counselling, cognitive behavioural therapy, sleep management therapy, and massage. Alternative therapies, such as acupuncture, tai chi, and alternative food and herbal supplements have been shown to be helpful for some individuals, as have lifestyle alterations, such as changes to diet and exercise.
Like many suffers of CFS, Sam has not found the past few years easy, but is managing her disease with a combination of therapies:
"About four times a day I use a 10-minute practice to lift the energy above my head.
After about two months of practice, I am generally experiencing clearer mind states and an increased ability to handle stressful situations, although I have had a couple of short attacks during this time.
I support my physical body with the help of my general practitioner, who is also a western herbalist, along with treatments from an acupuncturist. My GP prescribes a high protein, low irritant diet, as well as herbs and supplements to improve my liver, immune and adrenaline functioning.
In the three years I suffered from CFS before being diagnosed, I travelled to Europe and Africa, worked in London and Sydney and saw numerous alternative and traditional practitioners.
I also spent a lot of time in bed, in pain and depressed."
As CFS I such a misunderstood disease, what will work for one individual, may not necessarily apply to another:
"One of the best things to come out of this time was learning to find what I need, instead of other people's needs, the needs I should have, or the things I wish I could do.
All that time not knowing what was wrong made me fight through the fog to find what was happening through listening to my body and seeking the help of trained professionals who understand that CFS is not an emotional disease, despite the massive impact it has on emotional wellbeing."
Chronic fatigue syndrome (CFS) was first defined in 1988 by the US Centres for Disease Control as an illness of at least six months duration which begins suddenly with flu-like symptoms, causes a minimum of 50 percent reduction in activity, and cannot be explained by alternate medical or psychiatric diagnoses.
Since that time, research has tried to solve the mysteries of CFS - such as what causes it, how many people have it and how it can be treated. At the moment there is still a long way to go - no laboratory marker or universal treatment for CFS - but progress is being made.
May 9th - 15th is Chronic Fatigue Syndrome (CFS) and Immune Dysfunction Awareness Week.
By Jennifer Paterson
Reprinted with permission from Editforce