'I was in denial and ashamed by my CFS'

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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.

In early January 2016 I arrived in San Francisco exhausted and considerably nervous as I had waited so long and my expectations were high. The initial consultation was quite extensive, my medical history was thoroughly reviewed in order to develop a tailored management plan. The clinic also undertook a barrage of blood tests for diagnostic purposes. I then met the clinic director, Dr Jose Montoya. He was extremely reassuring and I felt that I was in good hands. I learnt that the clinic had helped hundreds of patients, some much more severe than I. He explained that there was no magic bullet and that I needed to be patient. It would take time to clarify the best management strategy.

In July 2016 I returned to Stanford to meet with other members of the multidisciplinary team and conduct further testing. I found a great sense of relief in being treated by specialists whose sole focus was ME/CFS. It had been a long journey to find a clinic with the expertise and resources to support me. These initial consults were very comforting as my concerns about coping long term with an incurable condition had been overwhelming. ME/CFS is an incredibly complex disease and as such the process has been slow. Living in a different country and travelling to the clinic once per year is another challenge. However there have been some improvements in my symptoms over the past year thanks to the Stanford team.

During my latest trip, in December 2017, my father and I were lucky enough to meet with Professor Ron Davis, whose research work laid the foundation for the Human Genome Project. He is the director of the Stanford Genome Technology Center and leads the End ME/CFS Project at both Stanford University and Harvard University, with a research team which includes 3 Nobel Laureates. This project represents one of the best chances ME/CFS patients have for a cure. Meeting Professor Davis and hearing him talk about recent advances was truly inspiring.

Davis’ son, Whitney, also suffers from ME/CFS. However his condition is much more severe than mine, leaving him in a state of near paralysis. Davis and my father spoke at length about the difficulties of being a parent and watching their child succumb to a debilitating disease with no cure or recognised treatment protocol. They spoke frankly about the high rate of suicide amongst ME/CFS patients and it was the first time I heard my father talk with concern about this topic.

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

I feel it’s important that I point out just how unusual my situation is. Thanks to the persistence of my parents I was diagnosed 6-12 months after developing symptoms. I cannot stress just how rare this is. I’ve spoken to countless patients who had to wait years, even decades before being diagnosed. National ME/CFS support and advocacy group Emerge Australia recently released a survey which showed that 80% of patients remain undiagnosed for more than a year. I’ve also heard from patients whose families and doctors never believed them, as well as patients who can barely afford to live, let alone cover the cost of the medical care they so sorely need. I would not be where I am today without the love & unconditional support of my incredible parents, Dennis and Fiona. They never questioned the legitimacy of my disease and support my travel to Stanford every year. There is one other person who has been an immeasurable source of love and support, my dear friend Katie. I cannot thank her enough.

Looking to the future I am heartened by the rapidly accelerating research breakthroughs that are happening internationally. Since I was first diagnosed in 2011 there has been a ground swell of discoveries and while none of these have been translated into treatment, it is clear that the increasing global collaboration amongst scientists, researchers, and doctors provides real grounds for hope. I have suffered many disappointments over the years, thinking that a cure was at hand, but I have learnt to keep my focus on the horizon. Some of the world’s best minds are tackling ME/CFS with increasing recognition and resources. I believe that it is only a matter of time before researchers develop diagnostic tools and effective treatments.

Source SBS Insight