What is ME/CFS?
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 (ICD 10 G93.3) since 1969.
Download our brochure here, containing a concise overview of ME/CFS and services provided by ME/CFS Australia (Victoria).
What are the symptoms of ME/CFS?
Overwhelming post-exertional fatigue from mental or physical activity is a highly recognisable indicator of ME/CFS, but it is by no means the only symptom for most people with the condition. Other symptoms may also include 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 (Carruthers et al, 2003).
The manifestation of symptoms is highly individualised often making diagnosis difficult. Until recently, diagnosis often occurred as the result of elimination tests for other conditions and disease states. 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 and 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.
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 in Victoria is up to 38,000 people (based on 2008 ABS population estimates, accessed March 2010).
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 oft 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 promising much but often delivering little except frustration, disappointment and empty wallets.
ME/CFS Australia (Victoria) provides a number of critical services to the community. We provide information and support to people with ME/CFS; we provide key resources and support on ME/CFS to GPs and other health practitioners; and we participate in awareness raising activities in the community to promote understanding of ME/CFS. These activities contribute significantly to supporting the ME/CFS community in Victoria. Call us on (03) 9791 3100 to see how we can support you.
References
Arthritis Victoria (2009) ‘Fibromyalgia’, <http://www.arthritisvic.org.au/pages.asp?d=5A4C5A717251477C7008060A070103>, accessed 13/1/10.
Allergy and Environmental Sensitivity Support and Research Agency (AESSRA) (2009) <http://www.aessra.org/>, accessed 13/1/2010.
Carruthers, B; Kumar Jain, A; De Meirleir, K; Peterson, D; Klimas, N; Lerner, M; Bested, A; Flor-Henry, P; Joshi, P; Powles, P; Sherkey, J; and van de Sande, M (2003) 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical case working definition, diagnostic and treatment guidelines, A consensus document', Journal of Chronic Fatigue Syndrome, vol. 11, no. 1, pp. 7 - 115, Haworth Medical Press Inc.
Jason, L (2007) ‘Problems with the New CDC CFS Prevalence Estimates’, <http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionPrev/tabid/105/Default.aspx>, accessed 13/01/10.
Royal Australian College of Physicians (2002) ‘Chronic Fatigue Syndrome Clinical Practice Guidelines’, Medical Journal of Australia, vol. 176, supplement.
A proposed brief history of ME/CFS is available on the UK's 'Support ME' website, including its appearance in Australia. Click here to access the article.
