What is ME/CFS
Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a severe, complex, acquired illness with numerous symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. ME has been classified as a neurological disorder in the World Health Organisation's International Classification of Diseases since 1969 (ICD 10 G93.3).
Symptoms of ME/CFS
Symptoms include overwhelming post-exertional fatigue from mental or physical activity; dysfunctional sleep; pain; problems with memory; sensitivity to light, touch and sound; problems with standing and balance; problems with body temperature and weight; and recurrent flu-like symptoms; that persist for at least six months in adults; or three months in children (Carruthers et al, 2003).
The key document for diagnosing ME/CFS is the Canadian Guidelines for Medical Practitioners, which was written by a consortium of worldwide renowned ME/CFS researchers and medical practitioners, published in 2003. This document provides a comprehensive analysis of symptoms, guidelines and a checklist for medical practitioners to make an accurate diagnosis. It is the accepted standard for diagnosis of ME/CFS in Australia and across the world.
What causes ME/CFS?
The cause of ME/CFS is a topic of much research and debate. Multiple factors may be simultaneously involved. ME/CFS can follow acute infection, such as glandular fever and upper respiratory infections; a flu-like illness; exposure to chemicals, environmental pollutants or heavy metals; immunisation; and severe physical trauma such as major surgery or a serious accident. Recent research is finding strong links with food malabsorption, food intolerance and gut dysbiosis.
ME/CFS frequently appears with other medical conditions, the most common being Fibromyalgia, a name given to a group of symptoms marked by generalised pain and muscle stiffness felt in any area of the body (Arthritis Victoria, 2009); and Multiple Chemical Sensitivity, a name given to those whose low-level exposure to everyday chemicals (like perfumes and deodorants, cigarette smoke, car exhaust) cause headaches or trigger asthma (AESSRA, 2009). These conditions contribute to the deterioration of the quality of life for people with ME/CFS, and contribute to severity of ME/CFS symptoms.
Who gets ME/CFS?
ME/CFS affects men, women and children of all ages, cultures and socioeconomic backgrounds. The prevalence of ME/CFS is also a contentious topic. In the year 2002, the Royal Australasian College of Physicians (RACP) attributed the prevalence of ME/CFS between 0.2% and 0.7% of the Australian population (RACP, 2002) which is over 180,000 people.
International studies conducted in recent years have put the prevalence of ME/CFS between 0.4% to 2.6% of the population (Jason, 2007) however varying definitions and classifications of ME/CFS have impacted on reporting and diagnosis of the condition. As awareness about ME/CFS among researchers, patients and health practitioners increases, prevalence statistics are also likely to be affected.
Support for ME/CFS
For many years, ME/CFS has been a misunderstood and often misdiagnosed condition. Dismissal of people with the condition as malingers or hypochondriac, having depression or other fatigue-related conditions has resulted in a culture of scepticism among the medical community, and inspired discontent to outright rejection of the medical system among patients. Poor understanding of the condition has resulted in many patients spending large amounts of money in desperation on drugs, specialists, programs and natural therapies that often promise much but deliver very little.
ME/CFS Australia is the peak body for ME/CFS in Australia. Its role is to communicate with medical and health professionals, federal politicians, service organisations and the media to improve awareness and knowledge of ME/CFS; support research into ME/CFS and co-ordinate national ME/CFS awareness projects.
Arthritis Victoria (2010) Fibromyalgia
Carruthers et al (2003) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical case working definition, diagnostic and treatment guidelines, A consensus document (Canadian Guidelines, Full Version)
Jason, L (2007) Problems with the New CDC CFS Prevalence Estimates
Royal Australian College of Physicians (2002) Chronic Fatigue Syndrome Clinical Practice Guidelines
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Did you know?
As many as 180,000 Australians are directly affected by ME/CFS
Research into ME/CFS is occuring across the globe. Follow the links below for research resources.
Support Organisations by State
ME/CFS Australia directs enquiries from members of the community about frontline support for people with ME/CFS to independently run state organisations.
Nutrition and ME/CFS: Download a PDF, available in the following languages: