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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.
Disclaimer
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
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'I Was In Denial And Ashamed By My CFS'
Monday 26 November 2018
 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.
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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Registered Charity 3104
Email:
sacfs@sacfs.asn.au
Mailing address:
PO Box 322,
Modbury North,
South Australia 5092
Phone:
1300 128 339
Office Hours:
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(phone)