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ME/CFS Australia Ltd
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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.


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'I Was In Denial And Ashamed By My CFS'

Monday 26 November 2018


From SBS's Insight:


Professor Davis, left, and Simon Del Favero
Professor Davis, left, and Simon when they met in the US.
(Photo: Supplied)

'I was in denial and ashamed by my CFS'

When Simon realised that treatment options in Australia for his chronic fatigue syndrome were limited he looked overseas for answers.

By Simon Del Favero
Source: SBS Insight
24 November 2018
© Copyright SBS

I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in early 2011 after a severe bout of glandular fever. In the years prior to my diagnosis I was studying architecture at the University of Sydney and working part time as an architectural model maker. I was 21, healthy, and physically very fit. I had plans to complete a masters degree in Berlin while working in the studio of an artist I greatly admired. I was initially shocked by my diagnosis. In many ways I was in denial, and so ashamed that I rarely spoke about it to friends or family. Over the next few years I tried a variety of treatments administered by various Australian specialists, none of which were successful. Years later I discovered there is no effective treatment for ME/CFS and that the best option for its management lay overseas.

In 2014 I was also diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), an autonomic condition which greatly affects the regulation of my cardiovascular system. Shortly after developing POTS my condition began to deteriorate significantly, forcing me to severely curtail physical and social activities. Later that year I applied to the Stanford University Medical Centre’s CFS Clinic in Palo Alto, California. I was placed on a waiting list and was accepted in 2015. I was excited to receive my acceptance confirmation. Finally I had the opportunity to be treated at a world renowned medical centre by a team of ME/CFS specialists.


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