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Australia: ME Awareness Week 11-17 May

Griffith University's National Centre for Neuroimmunology lit in blue. White laser light reads "Team ME @ GU"
Categories: All News, Australia

Australia’s Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) Awareness Week is 11-17 May.

The Week coincides with International ME Awareness Day on May 12. Everyone is asked to wear a blue ribbon on May 12 to show support for people with ME and Chronic Fatigue Syndrome.

ME Awareness Week begins in Adelaide, where the Adelaide Oval will be lit in blue on May 11, thanks to ME patient Jac and her little mate Poppy!

On May 12, International ME Awareness Day, both the Sydney Town Hall and Melbourne Town Hall will be lit up in blue, thanks to Emerge Australia and their volunteers. Check the Town Halls’ social media accounts and #May12 for images, and take your own pictures and share them with us.

On May 13, Emerge Australia is screening the film ‘Forgotten Plague: M.E. and the Future of Medicine’ at the State Library of Victoria, which will also be lit up in blue. The screening’s special guest is Senator Scott Ludlam.

The National Centre for Neuroimmunology at Griffith University will again light up their building in blue (pictured) and use laser lighting to write Team M.E. @ G.U. during ME Awareness Week.

Are you selling ribbons? Knitting for ME? Wearing blue? Hosting an event? Eating chilli for the ME Chilli Challenge? Being a princess for a day?  Are you part of ME and CFS Awareness Week (11-17 May) or May 12 International Awareness Day? What is happening in your town? And where do you get your blue ribbons? Leave a comment and let me know the details (including links and images) and I’ll include them.

Adelaide Oval at night, light up in blue. Blue lights on the bridge across the Torrens River

The Facts: Myalgic Encephalomyelitis in Australia

Up to 240,000 Australians have Myalgic Encephalomyelitis (ME). ME may be mild, moderate or severe. More than 25% of people affected are housebound or bedbound, and research shows that people with severe ME have a quality of life similar to those with cancer and late-stage AIDS. Worsening of symptoms can be sudden and permanent. One Australian has died from ME and the Alison Hunter Memorial Foundation was established in her honour.  The most common cause of death in ME is heart failure; where the average age of death from heart failure is 83.1 in the general population, it is 58.7 for ME patients.

Myalgic Encephalomyelitis is classified as a neurological disease by the World Health Organisation, the same category as multiple sclerosis and Parkinson’s disease. ME affects the:

  • Brain
  • Endocrine system
  • Muscles
  • Digestive system

Diagnosis and the name ‘chronic fatigue syndrome’
The name Myalgic Encephalomyelitis has been around since the 1950s. However, after an outbreak in the 1980s in the US, the criteria was widened and redefined. This new criteria was renamed Chronic Fatigue Syndrome but this criteria is so broad that patients with a variety of illnesses were misdiagnosed as having CFS.

As more became known about ME, a more-defined set of diagnostic guidelines was developed. The International Consensus Primer for Medical Practitioners (2012) is the standard recommended for diagnosis and management of the illness in Australia and globally. It includes diagnostic criteria, laboratory tests and management principles.

Medical research
In 2016, Australian researchers patented a diagnostic blood test for the illness. The discovery was made at the National Centre for Neuroimmunology and Emerging Diseases at Griffith University. In Australia, research is also being done at the Murdoch Children’s Research Institute in Melbourne. Overseas, Stanford and Columbia Universities are among those investigating the disease.

The Australian federal government has not funded a study into chronic fatigue syndrome or Myalgic Encephalomyelitis since 2005, despite a four billion dollar effect on the economy. Far too little biomedical research is done, considering the severity and prevalence of the illness.

What causes ME?
Most patients enjoyed healthy, active lifestyles prior to the onset of ME. Identifying causes is a challenge, as ME appears to have both genetic and environmental causative factors. The most common infectious triggers are Ross River Fever, Q Fever, glandular fever and enteroviruses, according to the International Consensus Primer.

Can we cure ME?
Currently, there is no cure for ME.

However, there are palliative treatments. It is important for doctors to do laboratory tests to identify abnormalities that detect dysfunction in the nervous system, endocrine system, and digestive system to help symptom management. The International Consensus Primer for Medical Practitioners (2012) lists tests for this purpose. Pacing, sleep hygiene, diet, stress management and relaxation techniques are helpful long-term self-management strategies.

There is no national representative organisation for patients, although there are state organisations and a Canberra support group.

Show your support for people with ME and wear a blue ribbon on May 12!

Categories: All News, Australia

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10 comments on “Australia: ME Awareness Week 11-17 May
  1. Penelope says:

    Officially 12th- 18th May is Awareness Week in Australia.
    Australian Network of Disability web page.
    Although things are happening through all of May around Oz.

  2. Susanna says:

    Are you running any information sessions or gatherings in the subject?

    1. Sasha Nimmo says:

      Hi Susanna,

      Emerge Australia is hosting a free screening of Forgotten Plague on Friday 13 May 6 – 9 pm
      Guest Speaker Senator Scott Ludlam Co-Deputy Leader of the Australian Greens.
      Village Roadshow Theatrette – State Library of Victoria (LaTrobe St Entrance)
      Light refreshments served on arrival
      RSVP by 30th April by emailing: [email protected]
      http://emerge.org.au/new-documentary-launched-forgotten-plague/#.VzFM3DYTA7d

      I’m not aware of any other events but if anyone else knows, please chime in!

      1. Valerie Free says:

        Hello. I was hoping to introduce the new book Lighting Up a Hidden World: CFS and ME written by myself, Valerie Free, along with others from around the world regarding the subject of ME/CFS. For more information, go to http://www.valeriefree.org. The book, now available at some Australia online retailers and many others, ie Amazon.com, both in paperback and e-book, along with the documentary Forgotten Plague, go together so well, each enhancing the other. Ryan Prior from Forgotten Plague also endorses this book from his social media sites.
        We have received a 5-star rating from Foreword Clarion Reviews and there are many media exposures and reviews on the book from experts and patients alike. I would love to get a book to Dr. Sonya Marshall-Gradisnik if any of you go to the clinic there. It is a book that addresses the history and politics and personal experience, and people are really growing from it. It acts as an advocate and a teacher on the subject and it can help with these areas for everyone.
        The general public really is awakened by the stories within the book and it has been very effective in raising awareness. A seven-year project with hundreds of people…a very good read.

  3. Claudia says:

    The Sydney Inner West support group is hosting a screening of ‘Forgotten Plague’ this Saturday -for people with ME their families carers and friends. (A provate not a public event). For details contact
    [email protected]

    1. Sasha Nimmo says:

      Thanks Claudia, I hope the screening goes well. Great film!

      1. Claudia says:

        Thanks a lot. Yes it is a great movie and suitable for a wide audience.
        I hope it can be aired on TV and be classified for Australia so we can see it here on itunes. Another project to take on!

  4. Sasha Nimmo says:

    From Emerge: http://emerge.org.au/awareness-week/#.VzKgfzYTA7c

    A key priority for Emerge Australia and for anyone living with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is to raise awareness of the illness and to improve understanding and support in the community.

    Therefore Awareness week from 11th to 17th May is an important time to join together and to be heard. Emerge Australia has arranged for the Melbourne Town Hall to be lit up in blue on the 12th to acknowledge ME/CFS and, in other states, there will be landmarks such as the Adelaide Oval and Sydney Town Hall similarly lit. In Melbourne the screening of the Forgotten Plague will be held on Friday 13th May with Senator Scott Ludlam and President of Emerge Australia, Sally Missing, participating in a discussion after the film has been shown.

    Many members of the ME/CFS community are undertaking awareness raising activities and their support is gratefully acknowledged.

  5. Sasha Nimmo says:

    Couple more updates:

    WA is screening Forgotten Plague on May 12, details here: http://mecfswa.org.au/News_and_Media/News_Details/Forgotten_Plague_Screening/Default.aspx

    Press release from Griffith Uni: ‘Further clues in the fight against Chronic Fatigue Syndrome’
    https://app.secure.griffith.edu.au/news/2016/05/11/further-clues-in-the-fight-against-chronic-fatigue-syndrome/?utm_content=bufferf94ee&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

    Great photo of the researchers at the National Centre for Neuroimmunology and Emerging Diseases, thank you Griffith! https://www.facebook.com/National-Centre-for-Neuroimmunology-and-Emerging-Diseases-NCNED-301252900007181/?fref=photo

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