Chronic Fatigue Syndrome (CFS) is a serious and complex illness characterised by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina), neurological problems and certain other symptoms.  By definition the condition does not improve with rest and persists for a minimum of 6 months.  In many cases it lasts for years and severely impairs a person's ability to function.

CFS is also known as Tapanui Flu, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalopathy(ME).

What are the main symptoms of CFS?

The hallmark of the disorder is the onset of fatigue that significantly reduces daily activity in a previously healthy person.

Other characteristic symptoms include: - impaired memory or concentration; sore throat, tender lymph nodes, muscle pain, multi joint pain without joint swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep and post-extertional malaise lasting more than 24 hours. [Ref: The Chronic Fatigue Syndrome: A Comprehensive Approach to its Definition; Fukuda et al; Annals of Internal Medicine, 15/12/94 pag 953-959].

Some people with CFS have symptoms that are always present but vary in intensity.  Others alternate between episodes of illness and wellbeing, and recurrences may either be random or in cycles.  All symptoms can worsen with excessive mental or physical exertion.  The degree to which CFS patients are disabled varies widely.  Some patients continue to function at home and at work, although at a reduced level of activity, while others are severely disabled and can not perform many routine activities of daily living.  CFS patients are among the invisibly disabled.

How Does CFS Begin?

For many people, CFS begins after an acute infection such as flu, bronchitis, hepatitis or an intestinal bug.  For some it may follow a bout of glandular fever. In others it appears to develop gradually with no clear precipitating event.

How Many people have CFS?

In New Zealand there is an estimated 20,000 sufferers. The prevalence is higher than MS and Breast Cancer in New Zealand.

Who Gets CFS?

CFS strikes people of all ages, all ethnic and all socioeconomic groups.

Is there a diagnostic test in New Zealand available to my doctor?

Unfortunately not.  Currently diagnosis is made by clinical presentation and by ruling out all other possible causes of fatigue.   Routine blood tests typically return "normal".

Is "Chronic Tiredness" the Same as CFS?

No, there are many reasons why a person may feel continually tired and these need excluding before a diagnosis of CFS can be made (eg anaemia, hypothyroidism, etc).  CFS has a highly distinct pattern of signs and symptoms.  The fatigue experienced by a CFS sufferer is nothing like the fatigue a healthy person may feel after strenuous exercise or work.

What is the Difference Between Chronic Fatigue and Chronic Fatigue Syndrome?

Chronic Fatigue & Chronic Fatigue Syndrome are two distinctly different illnesses. Chronic Fatigue is a condition which may follow many health stressors e.g. surgery, viruses, stress. Chronic Fatigue can be associated with medications & treatments for other illnesses. 

Chronic Fatigue Syndrome however is a recognized syndrome with a collection of many symptoms and is a disorder in and of itself. While there is no specific biomedical test, there is a clear set of criteria that one must have had for at least 6 months, after exhaustive testing to eliminate any other causes. Chronic Fatigue Syndrome, otherwise know as Myalgic Encephalopathy or Myalgic Encephalomyelitis, affects the Neurological, Endocrine & Immune Systems and is a serious debilitating disorder with many effects on the sufferer's health. 

How is CFS different from depression?

CFS sufferers are highly motivated and would do anything to get better, whereas people with depression suffer low motivation.  Exercise worsens symptoms for CFS sufferers, whereas it alleviates symptoms for people with depression.

How is CFS treated?

Currently there is no specific treatment that cures the underlying immune system dysfunction which appears to be at the heart of the condition.   Several treatments are in therapeutic trials at present.

Treatment for CFS is therefore intended primarily to relieve specific symptoms.  Sleep disorders, pain, gastrointestinal difficulties, allergies and depression are symptoms which can be relieved through the use of prescription and over the counter medications.

People with CFS may have unusual responses to medications, so extremely low dosages should be tried first and gradually increased as appropriate.   For example the sleep disorder is often best treated with tricylic antidepressants e.g. Amitriptyline, Doxepin, but only at doses of about 10-20 mg.

Lifestyle changes, including increased rest, reduced stress, dietary restrictions, nutritional supplementation and minimal aerobic exercise also are frequently recommended.  Although anecdotal reports of successful treatments are frequently heard, people with CFS need to approach claims of such 'cures' with caution.  There is no proven effective treatment that cures CFS at this time.

Do people with CFS Recover?

The course of this illness varies greatly.  Some people recover, some cycle between periods of relatively good health and illness and a minority gradually worsen over time.  Others neither get worse nor better, while some improve gradually but never fully recover.

Further Information

Normally when an infection activates your immune system, it rises up and you produce cytokines. These are natural chemicals involved in the fight against the initial infection. After an infection such as glandular fever 90% of people recover after a month. 9% recover after 6 months and the other 1% can remain chronically unwell for a long time. ME sufferers start to recover and if there is a major physical or emotional stress in their life, this stirs up the cytokines and symptoms recur. The illness often goes in a wave like pattern of recovering/flare-ups.

There is potential for everyone to recover eventually. Every person is different and his or her ME is individualized. It is often busy achieving people who get ME/CFS.

Diagnosis research is continually progressing, adding to our understanding of the underlying causes of the syndrome. Changes have been shown in the immune, neurological and endocrine systems and it is thought that a complex altered interaction occurring within these systems results in the illness. These is however no specific diagnostic test although throughout the world it is at least now accepted as a serious physical illness which may have a severe impact on the life of the sufferer. The additional burdens of further social, financial, and psychological problems can result. Diagnosis is made by a thorough history and examination, preferably by a doctor experienced in this kind of disorder. Other serious illnesses have to be ruled out, which may mean that the patient is subjected to multiple tests. It can be disappointing to be told all tests have returned normal, when a person feels and knows that they are really ill. However it is an important step in making the final diagnosis as many other medical conditions have similar symptoms, such as lupus, depression, diabeties, haemochromatosis, anaemia, multiple sclerosis, hormonal disorders, AIDS etc. The diagnosis cannot be made until the symptoms have persisted for a period of at least six months.

At this time there is no specific "curative" treatment for this illness. The current aim of treatment is to look at lifestyle changes and to relieve specific symptoms, thus enhancing a person's chance of making a recovery. Lifestyle changes include stress management, learning to 'pace' oneself, maintaining a balance between rest and gentle exercise, eating sensibly and attending to sleep difficulties.

Although there is no total cure known at present, research is providing promising results. 

A person with CFS may find it very difficult to live a normal functional life. They are adviced to pace themselves (slow down) and reduce both physically and psychologically stressful situations or they will find symptoms may worsen under pressure. Emotional or physical stress like being very busy, an operation, new baby, etc often trigger ME in 90% of people.

The degree of disability varies. Some ME sufferers can continue to perform almost normally at home and work but others find that work becomes too much to cope with and the sufferer needs to give up their job at that stage, as they need more rest to cope. There are degrees of this illness and the illness seems to go in cycles.

Click here to read a story of an ME sufferer.