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CFS Sufferers: Living Corpses left for Dead

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Toula Mantis
Created 08.23.10
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Toula Mantis

Budget Blues for CFS Awareness Week 8-15 May 2011

posted by Toula Mantis at Wednesday, May 11, 2011

Melbourne. - It is a week at odds with two main events competing for attention following the launch of the 2011-12 Federal Budget and of International Awareness Week for Chronic Fatigue Syndrome (CFS). In Australia, the Federal Government, in its wisdom, is "nudging" those with disabilities to get back to work. However, worldwide, those disabled with CFS find that their best productive years are lost to it, thereby becoming disqualified from the workforce. It is a dilemma that carries with it a great burden of hopelessness for the sufferer and their loved ones. Hence, to raise awareness, organisers are asking people to wear a blue ribbon this week.


Overseas, "CFS" is termed as "ME" which stands for Myalgic Encephalomyelitis. It describes a condition where the sufferer endures overwhelming fatigue that feels like a never-ending flu with all of its associated symptoms. According to ME/CFS (Australia)'s medical advisor, Dr Nicole Phillips, the sufferer is left with being unable to think clearly because of a "cognitive fog", they are unable to sleep and are constantly living with pain in their muscles and joints. Other symptoms include dizziness, headaches, temperature fluctuations and so on. "People with ME/CFS will experience overwhelming fatigue that, importantly, is not made better by resting and gets worse with physical or mental exertion, like constantly having the flu," she said.


Such an observation begs the question, how is one able to get back to work with such a disability when exerting one's self either physically or mentally makes the disability worse? This is where the Federal Government's 2011-12 Budget is at odds with the reality of living with a disability such as CFS. To put it into perspective, US research has identified that CFS sufferers are living with a far greater disability than having to live with cardiac disease, HIV, MS, chronic lung disease or depression. "It is not just chronic fatigue, it is not a psychological condition, it is a real physical and neurological condition," Dr. Phillips said. She added, "The big difference with ME/CFS sufferers is that they are desperate to get help, get better and regain their previously full and active lives".


From the annals of history, Florence Nightingale is a great example of a productive individual which made a positive difference to her world but due to a sudden illness, thought to be CFS, was laid low and confined to her bed long-term. She became ill after having suffered an infection during her time in Crimea. This is the way it is for CFS sufferers and it comes at a cost to the community at large as well as to the individual and their families. Thus, to remember their plight, International ME/CFS Awareness Day is celebrated on May 12 given that is was Florence Nightingale's birthday.


Locally, the number of CFS sufferers is estimated to be around 180,000 of which only 16 per cent have actually been correctly diagnosed as suffering from CFS. Interestingly, the number of women affected by CFS is three times more than that of men suffering from it. The cost to our community is believed to be around $3 billion annually, according to the National CEO ME/CFS (Australia), Penny Abrahams. She is calling for further investment into early intervention support services and education. Simon Molesworth AM QC has been an advocate for CFS sufferers for many years and he too believes that education is the key. "It can take up to seven years for some to be diagnosed. Doctors, health professionals and the community need to become much more aware of ME/CFS so that we can target early intervention and support," he said.


In an effort to raise awareness about CFS/ME in the general community I have begun a documentary process using YouCommNews. The first story in this online documentary series interviews CFS sufferer, Katherine McIntosh, and looks at what it is like living with this disability from her perspective. She has had to resort to living in the bush and sleeping in a tent in order to get some relief from her symptoms. She is dependent on the disability pension and tutors by giving music lessons whenever her symptoms are such that she is able to participate in everyday life. She also receives assistance from friends. Her particular problem is her extreme sensitivity to toxicity in the environment. She has found that living in a mud-brick house as opposed to a modern home minimises her levels of sensitivity to chemical toxicity. For this reason she is currently seeking assistance in raising funds in an effort to either buy a mud-brick house or to get one built.


Further, I am collaborating with the ME/CFS (Australia) in an effort to get other CFS sufferers to tell their stories of their plight with this disability. To that end, we have agreed on the following list of issues to consider:

1. Denial of Government Services e.g. Independent Living Plan similar for Multiple Sclerosis sufferers
2. Unable to get a proper diagnosis from the Australian Medical Association
3. Confusion by psychologists minimising CFS as simply "psychosomatic"
4. What it is like to live with an invisible illness ("I look well but...")
5. Problem of no biological marker i.e. "must be in your head"
6. Access to benefits for new treatments from clinical research e.g. brain scans
7. Problem of a housebound life i.e. social isolation
8. Mixed messages e.g. XMRV? Blood bank denial of donations from CFS sufferers i.e. viral problem or not?
9. Underfunding for research i.e. lobbying like MS is necessary
10. Community myths e.g. "You'll get over it" - it is a chronic illness



This week I will be attending a half-day conference covering the latest on CFS and will be able to give an update.