ME/CFS (myalgic encephalopathy/chronic fatigue syndrome)

With an estimated 20,000 sufferers in New Zealand, ME/CFS (myalgic encephalopathy/chronic fatigue syndrome) affects more people than breast cancer or multiple sclerosis.

Characterised by incapacitating fatigue, ME/CFS is a complex illness that affects many systems of the body, particularly the nervous and immune systems. It can be severely debilitating and cause significant disruption to work, recreation, social and family life. It is classified by the World Health Organization as a neurological disorder

ME/CFS is also known as:

• Tapanui flu
• post-viral fatigue syndrome (PVS)
• chronic fatigue immune dysfunction syndrome (CFIDS) 
• myalgic encephalomyelitis (also ME).

For simplicity, in this article we refer to the condition as ME.

Symptoms of ME

The effects of ME vary widely. Some people continue to function at a reduced level. Others are severely disabled and can not perform many routine activities of daily living.

The most distinctive characteristic of ME is the onset of fatigue and malaise that significantly reduces daily activity in a previously healthy person. This overwhelming physical and mental exhaustion is different to the tiredness that well people experience after strenuous exercise or a day's work and to the chronic fatigue associated with many long term illnesses. ME-associated fatigue is not readily improved by rest.

Other characteristic symptoms include:

• impaired memory or concentration
• sore throat
• tender lymph nodes
• muscle pain
• multiple joint pain without joint swelling or redness
• headaches of a new type, pattern or severity
• unrefreshing sleep
• malaise following exertion that lasts more than 24 hours.

All symptoms can worsen with excessive mental or physical exertion. This makes it distinct from depression; the symptoms of which tend to improve with exercise.

Diagnosis can be difficult

Diagnosis can be made only by a qualified medical professional and can be difficult because the symptoms are similar to those of a number of other medical conditions.

There are currently no specific tests that can confirm the diagnosis, although one is predicted to become available in the USA in 2009. Meanwhile a diagnosis of ME begins by eliminating other conditions from the list of suspects.

For a diagnosis of ME, the symptoms must match both of the following criteria:

Severe chronic fatigue lasting six consecutive months or longer with other known medical conditions excluded by clinical diagnosis
and
Four or more of the other symptoms listed above, which they have not experienced before onset of the fatigue.

Who gets ME and why?

ME can affect people of all ages, ethnic and socio-economic groups. It affects more women than men.

It is likely that a number of factors contribute to the development of ME, including genetic predisposition. For many people, ME begins after an acute infection such as flu, bronchitis, hepatitis or an intestinal bug, and for some it may follow a bout of glandular fever. In others it appears to develop gradually with no clear precipitating event.

Treatment targets symptoms

Currently there is no proven effective treatment ME although several drugs are in therapeutic trials. The Associated New Zealand ME Society (ANZMES) warns people with ME to approach with caution any unproven treatments that carry claims of a cure. 

Some prescription and over-the-counter medications may relieve specific ME symptoms, such as 

• sleep disorders
• pain
• gastrointestinal difficulties
• allergies  
• depression.

People with ME may have unusual responses to medications, so extremely low dosages should be tried first and gradually increased as appropriate, with medical advice. 

Lifestyle changes are also often recommended. These may include:

• increased rest
• reduced stress 
• dietary restrictions 
• nutritional supplementation 
• minimal aerobic exercise.  

Recovering from ME

The course of this illness varies widely; many people improve over time (over months and years rather than weeks) and some recover well. Remissions and relapses are common, and a considerable number remain severely affected. Some people’s conditions even deteriorate. Less than 10% of people with ME regain their previous level of health.

The important thing to remember is that this is not a progressive or life threatening disease. Early diagnosis and treatment may lessen the severity of the illness and, with careful management, full recovery is possible.

Research continues

According to ANZMES, research into ME is yielding some useful findings that it hopes will benefit those living with the condition. A blood test is anticipated in the near future and several studies are looking into causes and treatments.

Original material provided by Colin Robinson of ANZMES. Edited by everybody. Reviewed by Dr Ros Vallings MNZM. May 2009.