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ME Awareness Week & NCNED

Posted May 16 2014 1:47pm

12 May is International ME/CFS Awareness Day, therefore the week between 11 May and 17 May is ME/CFS Awareness Week.

 

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To be honest, I became reluctant to do something special to raise awareness. It seemed the awareness hardly go outside of ME/CFS community. And I feel my past  effort is an indirect reason of unofficial dismissal from local medical centre as a patient.

Then, this year….

Mind blowing awareness happened!

As the secret surprise that was planned by Professor Sonya Marshall-Gradisnik,  The Griffith Health Centre on Griffith University’s Gold Coast campus is lighting up in blue and purple during the awareness week.

Lighting building up in blue, purple, and/or green is an international awareness raising initiative. Blue is for ME/CFS, purple is for Fibromyalgia, and green is for Lyme Disease.

Griffith Health Centre is a home for National Centre for Neuroimmunology and Emerging Diseases (NCNED), where progressive and meaningful medical researches into ME/CFS are conducted. I believe it is attached or a part of a Gold Coast Hospital.

It blew my mind away because;

As I read the article, tears of gratitude welled in my eyes. I was overwhelmed by all sorts of emotions, including disbelief. I’m sure people would get the same overwhelming emotion if they won a million dollar lottery.

Private ME Awareness event at home

My private ME Awareness event during the week was the visit from NCNED team for follow up for severe ME/CFS research.

Because I was less tense than the first visit, everyone wore smiles. I’m very humble for their friendliness, understanding, compassion, intelligence, willingness to help, and their stamina.

And, there is more!

There was a good 7 minutes TV report on ME/CFS at 7:30 Queensland, which is one of the most trusted current affair/news programs in Australia. (I realised it was produced by 7:30 Tasmania)

Unfortunately, it is titled “ Chronic Fatigue hope “… I hope we all  have big heart to forgive their oversight on using the wrong name that we take as insults. I personally believe that raising awareness of truth & reality to general public is more important than complaining about the use of wrong name and lose positive public interest.

It is a good quality report with interviews with patients & their families, Dr Greg Schwarz (GP), and Prof Sonya Marshall-Gradisnik (Researcher).

I also thank the patients and their family for sharing their stories. It is very brave of them.

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Once again, NCNED has proven to me by taking action, not just talking, that I can hope that my life can be better one day before it’s too late.

This year, I got my faith back in awareness raising.

“International CFS Awareness Day is a recognised day where CFS biomedical researchers, such as myself, are able to reflect on the significant progress that has been made in the area of the possible pathology of this illness, thereby helping this patient group as well as contributing to the betterment of humanity,” says Professor Marshall-Gradisnik from the Griffith Health Institute.

 

Added on 18 May 2014

More Awareness!

Local radio program, Mornings with Nicole Dyer, talks with Professor Sonya Marshall-Gradisnik , Australia’s foremost expert on chronic fatigue syndrome.

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Links

Griffith Health turns purple and blue | Griffith News

| Facebook

Chronic Fatigue hope | 7:30 Tasmania, Australian Broadcasting Corporation (ABC)

Professor Sonya Marshall-Gradisnik, Australia’s foremost expert on chronic fatigue syndrome | Mornings with Nicole Dyer, 612 ABC Brisbane

 

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