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What Is ME/CFS?  More Detail

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a complex illness affecting multiple systems of the body and, in particular, the nervous and immune systems. ME/CFS has many symptoms, made worse by physical and mental activity and recuperation after exertion is prolonged. ME/CFS can be severely debilitating, causing significant disruption to normal patterns of work and study, recreation, socialising and family life.

Myalgic Encephalomyelitis is classified by the World Health Organisation as a neurological disease.

ME/CFS most frequently follows an acute infection but it may also develop after exposure to chemicals, heavy metals and environmental pollutants; physical trauma; anaesthetics and immunisation. It may also develop gradually without an identifiable trigger. In any individual it is likely that a number of factors contribute to the development of ME/CFS, including a genetic predisposition.

There is extensive evidence of physiological and bio-chemical abnormalities involving multiple body systems, confirming ME/CFS as a distinct, biological, clinical disorder. Nervous and immune system dysfunction (in particular an abnormal response to infection) are thought to play major parts in what is a complex disease process.

The symptoms of ME/CFS include:

• post-exertional malaise

  This is the term used for the most distinctive characteristic. Post-exertional malaise includes a disproportionate loss of mental and physical stamina, rapid muscle and cognitive fatiguing and/or pain and a worsening of other symptoms following physical or mental activity. It can be delayed 24 hours or more and recuperation is prolonged, generally taking at least a day and sometimes weeks or months. The level of activity that worsens symptoms varies from person to person, hour to hour and day to day and can be minimal.

• persistent or relapsing, new, unexplained fatigue sufficient to substantially reduce activity (at least 50%)

  The "fatigue” of ME/CFS is an overwhelming physical and mental exhaustion, unlike the tiredness that well-people experience after strenous exercise or a day's work or the "chronic fatigue" associated with many chronic illnesses. The fatigue is not readily improved by rest.

• neurological/cognitive problems (e.g. "brain fog"; concentration and short-term memory problems, difficulty finding words and with information processing; disorientation)
  
  
• sleep problems (e.g. unrefreshing sleep, inability to fall asleeep, excessive sleep)
  
  
• pain (e.g. new headaches and/or muscle/joint pain)
  
  
• symptoms related to autonomic nervous system dysfunction(e.g. light-headedness on standing; extreme pallor; irritable bowel; nausea; palpitations)
  
  
• symptoms related to neuroendocrine system dysfunction (e.g. cold extremities; intolerance of extremes of temperature; recurrent feverishness)
  
  
• symptoms related to immune system activation/dysfunction (e.g. tender lymph glands; recurrent sore throat and flu-like symptoms; new sensitivities to foods and/or chemicals).

The specific cluster and severity of symptoms varies from person to person and over time.

ME/CFS reduces normal levels of activity by at least 50%.

Many people with ME/CFS are too unwell to work or study (or can only do so part-time) and may need help with daily living. The severely affected are house-bound much of the time and may require a wheelchair for mobility. Some are bedridden and experience additional symptoms, such as seizures, temporary, partial paralysis and gastroparesis - they are totally dependent on others and may be tube-fed.

There is, as yet, no universally successful treatment or cure. Everyone is different. Flexible, individualised management programmes are generally recommended and may include:

• the self-management of activity (e.g. through pacing). There is evidence that living within one's fluctuating activity limits may lead to an improvement. Going beyond personal activity limits too much and too often can delay recovery and lead to a long-term increase in illness severity.
  
  
• coping strategies, including lifestyle and environmental changes to remove known aggravators and optimise healing
  
  
• physical and pharmaceutical therapies to alleviate specific symptoms
  
  
• therapies directed at treating possible causes of ME/CFS (e.g. antibiotics, antivirals, essential fatty acids, Ampligen) - most of these are still in the research and investigation stage.

Many improve over time (over months and years rather than weeks) and some recover well but less than 10% regain their previous level of health. Remissions and relapses are common. A considerable number remain severely affected and some deteriorate. Early diagnosis and treatment may lessen illness severity.

Research is identifying sub-groups of ME/CFS, which may assist in the develpment of effective treatments based on the individual's unique illness profile.

ME/CFS can affect all ages, including very young children. It affects people from different ethnic and socio-economic groups and more women than men.

Major references:

"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Guidelines A Consensus Document" Carruthers et al., Journal of Chronic Fatigue Syndrome, 2003, 11 (1): 7 - 115. ©2003 Haworth Medical Press Inc. Available from The Haworth Document Delivery Service 1-800-722-5857, docdelivery@haworthpress.com http://www.HaworthPress.com;

"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners, An Overview of the Canadian Consensus Document" Carruthers and van de Sande (2005). ©2005 Carruthers B.M and van de Sande M.I.

ME/CFS Australia (the ME/Chronic Fatigue Syndrome Association of Australia Ltd. ABN 23 088 896 299; ACN 088 896 299). Email: mecfs@mecfs.org.au