ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
ME/CFS Australia (SA) 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.
ME/CFS Australia (SA) 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.
WHAT ABOUT ME? documentary
Thursday 15 August 2013
WHAT ABOUT ME? Documentary
Secret blood draws, controversy, no diagnosis, no cure, little funding yet 20 million people suffer with Myalgic Encephalomyelitis. WHAT ABOUT ME? investigates.
WHAT ABOUT ME? is a 90 minute feature documentary that takes the audience on a journey to investigate the debilitating condition of ME/CFS. There is a battle to find the cure and we have captured the revelations and research in our documentary to produce a story of intrigue, heartbreak and hope.
Commonly referred to as a mystery illness, it utterly debilitates lives of previously healthy, active, vibrant individuals, leaves them bedbound, racked with pain and suffering from devastating memory loss and confusion. Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) has left medical professionals and leading scientists perplexed as they have yet to find a known cause and cure.
WHY AM I TELLING THIS STORY?
How extraordinary life can be when just one event can trigger off a quest that will last for years? As a documentary filmmaker I was intrigued to hear of an illness called M.E Myalgic Encephomyleitis also known as C.F.S. Chronic Fatigue Syndrome when I sat next to a woman whose son was very ill with this illness. She told me there was no real acceptance in Britain of his condition being biomedical and I then discovered that this theory permeated throughout the world. This piqued my curiosity further, and so began to gather the facts on ME. It appeared that 20 million people were suffering worldwide, and yet there was little government funding into research on it. Some sufferers were even being ignored and treated as degenerates. How could that be? I was determined to find out, so started WHAT ABOUT ME?
I have raised funds for children’s charities in Africa and Asia and now it is time to raise funds for a film that will gain recognition of the 20 million ME/CFS sufferers’ right to be heard worldwide.
THE JOURNEY CONTINUES...
Picking up this film where we left it will highlight the controversy and conflict that surrounds this illness. WHAT ABOUT ME? will follow the aftermath of the XMRV announcement as it unleashed a surge of inquiry and scrutiny previously never levelled at ME.
The retrovirus link was eventually discredited in 2011, and whilst some argue it deterred scientists from working in the field others believe it opened doors to new research. Amidst the battle between research labs and Governmental bodies, is a lost ME community waiting for answers. There needs to be awareness brought to the Governments of the world, many of who continue to ignore the needs of sufferers in their country. We have heard this in conversations with ME patients from Australia, Mexico, Germany, Canada, Holland, Spain, Sweden, Britain and America. There is no doubt that this prevails across the globe. The aim is to release this documentary on a worldwide basis distributed via online platforms, theatrical screenings, TV channel commissions and on DVD.
Our collection of footage captures key elements of this story from the past four years. It includes interviews at the time of the XMRV discovery with British and US patients and ME experts in the UK and Sweden such as Dr John Gow at Glasgow University, Dr Charles Shepherd, Medical Advisor to the ME Association and Dr Jonas Blomberg, University of Malmo to name a few. We now also hold exclusive footage from recent events featuring a selection of revered scientists in the USA such as Professor Jose Montoya from Stanford School of Medicine, Dr Derek Enlander at Mount Sinai Clinic and Dr Lucinda Bateman from the Fatigue Consultation Clinic, Salt Lake City.
During this time, we have learnt how case definitions and treatments continue to vary and remain ambiguous but what certainly exists is the passion for the pursuit of a cure. The amazingly resourceful online ME community, many who have been left homebound by the illness, are committed advocates for ME/CFS that strive to be heard.
You most probably know of someone in your family or friendship group who is suffering from ME/CFS but have never identified how you can help until now. Help us complete this film that will tackle the stigma attached to ME and create enough of a noise so that Governments can’t avoid to the obstacles and turmoil the ME community faces on a daily basis.
PICK A PERK AND MAKE A DIFFERENCE TO M.E...
Your dollars of support, will deliver perks ranging from a social media acknowledgement package to first edition DVDs and even an exclusive opportunity to feature in the closing titles of the film! We are also offering two lucky supporters who can dig a little deeper a unique chance of joining us as Associate Producers and one exceptional donation will gain Executive Producer credit!
We are keen to progress with filming and pursue the answers to the questions sought after by the ME/CFS community and which are vital for the public to be aware of. The story yet to be filmed continues in the UK and largely in the US where we will review the options that are available to patients and seek out what opportunities are on the horizon.
Putting your money behind the documentary will allow us to do the following:
Overall, the footage captured will expose the continuing controversies that exist in the field and contribute significantly to an investigation which had already engaged over 200,000 people on first glimpse and could benefit millions once completed.
If we do not reach our goal of $165,000, any funds raised will still go towards filming as it is essential that we capture the remainder of the narrative. With footage in hand we would then apply to alternative funding institutes to support the costs of post production and distribution.
Throughout the whole process, we would keep our supporters updated with our developments so they are aware of how their contribution has helped the documentary progress.
We are not looking to make a profit on this documentary but simply want to open eyes, ears, minds and hearts to how destructive ME/CFS is by stealing the freedom from those who contract it and threatening the reputations of those who are working to cure it. A better global understanding will hopefully lead to a bigger and better collective effort in tackling the disease. Any profits made will go towards supporting ME/CFS research.
SPREAD THE WORD!
In order to make your contribution count, we need to ensure that everyone gets behind the project so after picking a perk, spread the word! Share the link online by choosing from the following Tweets and Facebook statuses to post on your social media pages:
I Made a Difference to ME and you can too. Support the documentary WHAT ABOUT ME? at http://igg.me/at/whataboutme-doc/x/3692438
Help bring the debate on ME/CFS to the screen. Support documentary WHAT ABOUT ME? at http://igg.me/at/whataboutme-doc/x/3692438
I Made A Difference To ME @WHAT_ABOUT_M_E #MEcfs #indiegogo http://igg.me/at/whataboutme-doc/x/3692438
Spread the word on ME @WHAT_ABOUT_M_E?#meawareness. Support the documentary at indiegogo #fundraising http://igg.me/at/whataboutme-doc/x/3692438
QUILT OF SUPPORT
In addition to tweeting and posting our slogans, you can send us your photo to be added to our quilt of photo supporters on our website! Just email us at email@example.com.
The above originally appeared here.
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