How would you react if you were left to deal with a chronic disease that medical professionals are at a loss to explain its causes and more importantly its cure?
What effect do you think it would have on your life if one day you began to cough and continued to cough and then began to lose weight - only to finally find that you had somehow lost your comprehension faculties? How do you think you would fare with your boss, your friends, your family? And then to be told: "It's all in your mind...you need some cognitive therapy..."?
By now, most Chronic Fatigue Syndrome sufferers have lost their job, lost their friends and are occasionally visited by family. The question they are left with is "Why should I live...why not end it all?" Theirs is a life of monotonous painful days lived in bed and riddled with guilt and misunderstandings. Some have ended up sleeping in their cars, others are living in tents and then there are those who have ended it all. It seems that no-one cares and everyone judges.
This is a series of 10 personal stories that looks into the lives of Chronic Fatigue Syndrome sufferers and their plight for survival. It considers the individual stories, the diagnosis, the support level and the government response. It follows on from a Community Cabinet Presentation made to the Victorian Health Minister, Daniel Andrews, in October 2007, titled, "The Plight of CFS Sufferers in Victoria".
The first story covers the survival of Katherine McIntosh who lives between a tent and a caravan in country Victoria.
If you were ever left for dead from the world, would you not want to know how to survive?
I have worked as a journalist since the late 1980s specialising in science, information technologies and telecommunications. By 1994, I was privileged to be the media manager for the Australian Telecommunications User's Group and responsible for the public launch of the Internet in Australia. Shortly afterwards, I was fortunate to be the value added services product manager for Vodafone Australia where I was responsible for the management of the development and launch of the world's first GSM mobile Internet service. These two events catapulted my career until I returned from a business trip to the Philippines. My health began to deteriorate and I found myself fighting for my life. I was diagnosed with Chronic Fatigue Syndrome (CFS).
From this experience, I became acquainted with the Chronic Fatigue Syndrome Society of Australia (Victoria) and its many members and have been astounded at the stories they had to tell - stories that resembled those from underprivileged third world countries rather than those associated with our lucky country, Australia.
Further, as a CFS sufferer, I was able to experience the medical health system and the medical legal system first hand. It left me aghast.
In 2007, I was privileged to make a request for a CFS specialist medical and recovery centre on behalf of sufferers to the Victorian Health Minister, Daniel Andrews. Several months later, it resulted in a house being given to one of the sufferers due to their appalling individual circumstances. The request for the centre remains.
Finally, I have the support of ME/CFS Australia (Victoria) Chief Executive Officer, Penny Abrahams, and many of the CFS sufferers themselves to embark on this project given my skillset and, in particular, my understanding of their plight.
Each of the ten (10) individual stories will be produced as soon as funding becomes available on a per story basis (@ $878 per story) in the form agreed to by the CFS sufferer (due to the sensitivity of the subject matter). The selection will be made based on the ten (10) most common plights faced by CFS sufferers on a daily basis.
That is, stories will be provided in four styles comprising of the following:
(1) Text only - 800 words
(2) Text and pic - 800 words and 1 pic
(3) Text and audio - 600 words and 3 minutes of audio plus 1 pic
(4) Text and video - 600 words and 2 minutes of video