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CFS Sufferers: Living Corpses left for Dead

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Toula Mantis
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Toula Mantis

Getting your story into the public domain.

posted by Toula Mantis at Wednesday, October 13, 2010

Journalists abide by a code of ethics that endorses honesty, fairness and independence. And yet, there are many instances where other factors come into play such as advertising and commercial considerations that require the endorsement of stakeholder interests. All too often we read stories that are skewed towards pro political persuasions, shareholder interests and profit margins. In the end, it is not news stories that we read but rather advertorials.

However, an intitiative such as the Swinburne University of Technology's "YouCommNews" provides the opportunity for journalists to get back to the basics. They can get stories that are relevant to everyday readers without having to jump hoops to meet stakeholder interests before getting published. This is refreshing and gives hope for the many stories that have never seen the light of day due to such hindrances. It also gives the chance for everyday readers to make a choice of which story they value. Ultimately, it offers a practical user-pays readership arrangement that is a "win-win" for both the journalist and the reader. There is no pressure. There is only choice.

It is this choice that makes it so exciting to pitch a story such as "CFS Sufferers: Living Corpses left for Dead". Since 1998, I have had the opportunity of understanding what it means to be living with a chronic illness that leaves our modern scientists and physicians baffled, perplexed and without any answers. Theory after theory after theory is proposed but as yet there still remains no definitive identification for the cause and cure of Chronic Fatigue Syndrome (CFS). Clinical trials are under way and there have been signs of hope with claims of some sort of discovery e.g. the Xenotropic Murine Leukemia Virus-related virus dubbed, XMRV, identified in 2006. But even such whispers of hope are marred by black clouds of conflicting reports, e.g. the November 15 issue of The Journal of Infectious Diseases reported that there was no link between XMRV and CFS. Its report stated that "the evidence supports a possible link between XMRV and prostate cancer but not other links involving chronic fatigue syndrome, HIV infection, or hepatitis C virus (HCV) infection". This was reported on October 12, 2010. For many CFS sufferers, this less promising news will come as another blow to their hopes of finally getting a cure. Some may even slip further into depression as all hope seems to be lost.

This is why such a story highlighting the plight of CFS sufferers is so important. By getting their story into the public domain means that CFS sufferers will not be anonymous anymore but real people with real stories. For the rest of us, it means that we can learn from their plight and can act upon it by offering whatever assistance we can to these sufferers. For the politicians, it means that they cannot no longer not do anything for these people...they might be very ill but they are still valid voters and have a voice. For the doctors, it means that they have to increase their attention to the research that is taking place on CFS and to at least keep their patients posted with developments so that they do not lose hope. For the scientists, it should motivate them to work even more diligently to get more grants for more research and to be effective in doing so. And, for the lawyers, to keep abreast of all of these developments so that they may be equipped to adequately process claims of neurological disorder, total and permanent disability and medical negligence for medical professionals, superannuation and insurance companies.

All in all, this is a story that needs to be in the public domain because you might be the next person diagnosed with a chronic illness and then how are you to survive and make ends meet?

For more on what it is like living with CFS among other things, please see my company's blog at Mobiles Australia for:

  • How can you help with a solution for Chronic Fatigue Sufferers?
  • Why does my memory fail me?
  • Find out what the big boys are not covering?
  • The loudest cry is the silent scream...can you hear it?

And please feel free to write to me with your comments: toula_mantis@hotmail.com.