Intenational CFS Awareness Week 2001

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International Chronic Fatigue Syndrome/ Myalgic Encephalopathy Awareness Week
May 7-13 2001

International CFS/ME Awareness Day - May 12 2001

[Media Stories] [Seminar] [Blue Ribbons]

Media Stories

We had excellent coverage of CFS/ME and individuals affected by CFS/ME throughout Victoria during Awareness Week 2001. Over 40 stories appeared in local papers and many thanks go to the individuals who told their stories and had their photos taken. We also had coverage in Victorian and national newspapers and magazines (Herald/Sun, Age, Australian, That's Life, Take 5, Woman's Day, New Idea). Many radio stations also covered CFS/ME issues and did interviews on sufferers (ABC, 3UZ, 3AK, 3AW, 3LO, 3PBS, 96.5FM COMRADIO, PLENTYVALLEY FM). TV coverage was also positive with 'The Jennifer Kyte Program' Channel 9 and 'A Current Affair' Channel 9 doing stories.

We would appreciate any copies of CFS/ME articles you appeared in or saw during Awareness Week 2001 and throughout the year. Please contact the office.
NAME MEDIA – LOCAL NEWSPAPERS
Dr Michael Azari Waverley Gazette
Dr Bogusha Paks Brimbank Messenger
Dr Bogusha Paks The Advocate
Sacha Harris Moorabbin Standard
Sacha Harris Mordialloc- Chelsea News
General Medical health facts Woman's Day
Judy so White Horse Gazette
Janet Torrance Sunbury Regional News
Janet Torrance Macedon/Gisborne Telegraph
Imogen White Progress Press
Olive Elliot Monash Journal
Zoe Elrick Wangarratta Chronicle
Marcus Bird
Karen Parkinson Melbourne Times
Marcus Bird Emerald Hill Times
Emma & Mary Jahne Diamond Valley Leader
Kate Bonney Maroondah Mail
Kate Bonney Maroondah Journal
Community Service Announcement Maroondah Leader
Community Service Announcement Maroondah Mail
Jesse Stratford Moreland Sentinnel
Stuart Torrens Metro News
Stuart Torrens Melbourne Leader
Caleb Ryan Community News
Faye Longmore Hobson's Bay Times
Faye Longmore Altona/Laverton Mail
Lesley-Ann Elbourne Warrigal & Drouin Gazette
Kim Stevenson Diamond Valley Leader
Tracey Lewis Dandenong Journal
Tracey Lewis Dandenong Examiner
Jacinta Commins Brimbank Messenger
Jacinta Commins Stonningnton Leader
Jacinta Commins Whitehorse Gazette
Louise Bibby Ballarat Courier
Shayna Gavin Moonee Ponds Gazette
Leigh Wood Melton Leader
NAME MEDIA – NEWSPAPERS & MAGAZINES
Sacha Harris New Idea
Tottie Goldsmith Woman's Day
The Australian
The Age
Tracey Lewis That's Life
Judy So Herald/Sun
Simon Molesworth Herald/Sun
Karen Parkinson Take 5
Take 5 magazine has also kindly offered to include a story on a person with CFS/ME each 2 months.
NAME MEDIA – RADIO
Marcus Bird Plenty Valley 88.6 FM
Community Announcement 3PBS
Fred Place ComRadio 96.5
Christine Oakleigh Radio interview – 3UZ
Dr Nicole Phillips 3AK Evenings with Muriel Cooper
Simon Molesworth, Christine Hunter ABC Queensland
NAME MEDIA – TV
Mel Bailey, Simon Molesworth A CURRENT AFFAIR – CH 9
JENNIFER KYTE PROGRAM – CH 9
Footy Show – Ch 9 Billy Brownless wore a blue ribbons and announced CFS/ME Awareness Week during the Wheel Segment
OTHER MEDIA

Herald/Sun – Obituaries featured Paul Anderson VFL umpire who suffered from CFS/ME. 30.4.01
ABC 702 – Tony Gilroy interviewed Dr Richard Schloeffel GP and Prof Andrew Lloyd about CFS/ME. The interview also featured Dr Neil McGregor (University of Newcastle) and several callers with questions on CFS/ME. 7.5.01
Sydney Daily Telegraph – Story on Ian Barnes affected by CFS/ME and discussed University of Newcastle findings that there are abnormalities in the enzyme system and immune system.
Take 5 Magazine featured an article on Erin O'Connor – 22 y.o. – who contracted ADEM (Acute Disseminated Encephalomyelitis) from Mosquitos whilst travelling in Thailand. The symptoms for ADEM are very similar to CFS/ME.
New Idea – reported on hypnotist Martin St James and his daughter who committed suicide due to drug addiction. St James said that his daughter turned to drugs as an escape from her CFS/ME and that he also suffered from CFS/ME. "I've also suffered CFS/ME and although I've fought cancer and had major heart surgery, I have to say that having CFS/ME was 10 times worse than the other two put together", said St James.

We need your help to continue our Media Campaign for CFS/ME Awareness throughout the year. If you can offer or write your story, please contact the office.

A very big thank-you goes to Fred Place and his family for their extensive efforts in obtaining stories in this years media campaign. Thank-you Fred – this has been one of the most successful years. We have already posted over 150 Information Kits as a result of enquiries to the office from our Media Campaign in May.

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CFS/ME AWARENESS SEMINAR – SUNDAY MAY 13TH 2001

The seminar on Sunday May 13th was hugely successful. The seminar was booked out with 150 people attending the Reception Room at the Melbourne Town Hall. The Reception Room was very grand with doorman included.

The first guest speaker was Simon Molesworth AM QC – Victoria CFS/ME Society President. He spoke of the positive steps we have made over the last years in gaining recognition and understanding of CFS/ME, but discussed how both state and federal funding and recognition of the disease was lagging. The Society has made several attempts in this current year to apply for funding from government and have been blocked on definitional terms from the Disability Act. Simon discussed how we could overcome these problems.

The second guest speaker was Dr David Torpy –Endocrinologist and Senior Lecturer in Medicine from the University of Queensland who spoke on "Gene and Stress Hormone Research in Chronic Fatigue/Fibromyalgia". He spoke of the study and results of the testing he is undertaking in Victoria and Queensland on CFS/ME sufferers to identify the mutated gene. He noted that he had found various forms of the mutated "Cortisol-binding" gene in 3 separate families who suffered from CFS/ME and chronic fatigue. He has widened his study to search for the mutated gene in 300 CFS/ME subjects from the Queensland and Victorian CFS/ME Societies. Dr Torpy discussed that the mutated gene can lead to some of the symptoms of CFS/ME such as fatigue and low blood pressure and that it may account for a sub-group of CFS sufferers or up to 3% of sufferers.

An audiotape of Dr Torpy's talk can be obtained from the office for $10.00.

Also books, Blue Awareness Ribbons and Badges were sold and a raffle was drawn at the seminar. Also we invited 75 parliamentarians to the seminar to help raise awareness within government circles. We had many declines to the invitation and one representative from the Department of Health and Aged Care attend.

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BLUE AWARENESS RIBBONS AND BADGES

Over 1000 ribbons and 100 badges were sold during Awareness Week. Many thanks goes to the Blue Ribbon Team who come into the office each Wednesday and have made 1000's of ribbons and 500 badges.

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Want more information?

Information about the Society is available from:

this web site

an information kit

by contacting the Society at:

ME/Chronic Fatigue Syndrome Society of Victoria
Information and support line (03) 988 88 798
Administration (03) 988 88 991
Fax (03) 988 88 981
23 Livingstone Close, Burwood, Vic, Australia 3104
mecfs@vicnet.net.au

Last Updated 26/02/2002