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Champion swimmer fights for understanding of 'the most misunderstood' disease
Thursday 3 May 2012
If you've never heard of Myalgic Encephalomyelitis, think Chronic Fatigue Syndrome instead. Former world champion swimmer, Linley Frame, is determined to help educate the community about an illness whose sufferers are often stigmatised by people telling them it's 'not real'.
She said: 'I just thought it was time someone stood up for the 180,000 sufferers of ME/CFS in this country. It's very common for people to have difficulty getting a diagnosis and to receive conflicting advice about what the best treatment might be. I think it's terrible that many patients suffering pain and illness can't afford to pay for diagnostic tests, let alone the treatment they need. Most people don't realise the illness can be fatal or that it affects kids as young as 5. And it's a disease without a cure, so for many sufferers it's a lifelong condition. If people don't even recognise the name Myalgic Encephalomyelitis, how can we hope they will understand the seriousness of the illness?'
She was hospitalised in 1996 but was "bounced from doctor to doctor" until 1997 when she was diagnosed with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome).
Linley rarely discusses her illness. She says she has learned from long experience to manage her disease and has largely "suffered in silence" although the illness is extremely debilitating at times and causes her some cognitive dysfunction. She is speaking out about it now in the hope that her experience will help others.
Linley will be encouraging sufferers, their carers and the wider community to get involved during ME/CFS International Awareness week. She is opening the one-day Awareness Week Education Seminar hosted by ME/CFS Australia (Victoria) which aims to broaden knowledge of diagnostic and treatment protocols and best practice, being held at Darebin Arts Centre at Preston on Saturday 5th May. Linley will welcome an audience of GPs and other medical practitioners and invite them to support the campaign. Special guest speakers at the Education Seminar include Associate Professor Sonya Marshall Gradisnik from Bond University who is also a keynote speaker at the upcoming 'Invest in M.E.' Conference in London.
ME/CFS Australia (Victoria) is an organisation dedicated to assisting sufferers and carers with information, advice and support. CEO Alison Copley said:
'Myalgic Encephalomyelitis is a neurological disease first identified by the World Health Organisation in 1969. Over 40 years later, it seems that many in the community do not understand the severity of the illness and that it is so debilitating, sometimes with life-threatening symptoms. Our first responsibility is to all sufferers, many of whom are often bedbound and very socially isolated. Many are unable to return to the workforce and suffer financial hardship and family breakdown as a result. Our helplines and facebook page are an invaluable link to the outside world for sufferers and their carers. Our other role is to lobby governments for a fair share of health budgets and research funding. Linley is a courageous spokesperson for this devastating illness and we thank her for her involvement during this year's ME/CFS International Awareness Week, the 20th anniversary of the event".
For further information, contact Alison Copley, CEO, ME/CFS Australia (Victoria).
The above originally appeared here.
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