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International ME/CFS Day



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ACT ME/CFS SOCIETY INCORPORATED MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME

SHOUT Office PO Box 717 MAWSON ACT 2605 Phone (06) 290 1984

Fax (06) 286 4475

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Press Release

INTERNATIONAL ME/CFS DAY*

May 12 is International ME/CFS Awareness Day. On this day the wearing of the symbolic blue ribbon across the world is an attempt to promote a greater awareness and understanding of ME/CFS as a very real and for many, a very debilitating illness.

Chronic Fatigue Syndrome (CFS), is the most common label for this illness in Australia, although it is also sometimes referred to as Myalgic Encephalomyelitis. Fibromylagia syndrome (FMS the 'muscle pain disease') is thought to be a related illness.

Although it is estimated as many as 90,000 people in Australia could be affected by CFS, the true number is not known. CFS and FMS are debilitating illnesses which cause general malaise, extreme fatigue and weakness after physical or mental exertion, muscle aches and pains, problems with concentration and memory and other symptoms Every system in the body can be

affected and the symptoms vary in intensity and can be fluctuating in nature.

Although there is a recognisable pattern, not everyone has the same set o f symptoms and this makes diagnosis difficult. Because it is necessary to exclude other possible causes for the symptoms before a formal diagnosis can be made, people who become ill often go through a bewildering period o f having various tests with inconclusive results or have even been told by doctors who do not recognise the symptoms that their illness is 'all in their head'.

The impact on people's lives can be profound. For many, the symptoms become so severe that they can no longer work or study. A proportion o f sufferers become bedridden and need to be cared for by others. Family relationships can also deteriorate due to lack o f understanding and the stresses o f living with a chronic illness. Obtaining invalidity benefits or disability insurance can be an extra burden for many, involving years o f draining legal proceedings and medical examinations.

It is estimated that the annual economic costs to the community due to loss of productivity and medical costs is around $416 million

Despite various hypotheses that have been put forward, the cause of this illness is still not known and there is no single specific test to diagnose CFS. However researchers may be getting closer to unravelling the mysteries o f CFS and Fibromyalgia. An international conference in Sydney earlier this year heard encouraging reports from doctors and scientists from Australia and overseas. Studies have found clear evidence o f immune, nervous system and blood flow pattern abnormalities in the bodies o f sufferers. A research group at Newcastle University have found evidence o f biochemical abnormalities and believe that an ongoing infection may be involved.

Blue ribbon CFS Awareness Day is part o f the effort o f sufferers and their families and concerned health professionals to draw attention to the urgent need for further research funding, as well as ongoing support for both carers and sufferers

ACT ME/CFS Society Inc.can be contacted by phoning the SHOUT office on 6290 1984 or writing c/- SHOUT Office, PO Box 717, Mawson. 2607. The Arthritis Foundation o f the ACT sponsors a Fibromyalgia Self-Help Group and can be contacted on 6257 4842.