MEAction Australia, are running a virtual campaign on the 12th of May between 1pm-2pm (QLD time).  The idea is to post on social media around this time using specific hashtags (#) so that we can get #’s trending and make the ultimate impact.

We have arranged a thunderclap around a #MillionsMissing message.  A thunderclap is like a go fund me page, but instead of donating money you show support by signing up with facebook and/or twitter.  What then happens is once the thunderclap reaches it’s goal a message gets sent out across facebook and twitter of all those who have signed up at the exact same time.  This increases the chances of trending on social media and also the same message being seen by the same person and also increasing the reach.

A few of the state organisations are going to share in on their facebook pages to ask their members to sign up (just a couple of clicks), we would also love the state org to sign up to the thunderclap too.  Additionally Phase 2 of our thunderclap is to approach some state & federal politicians to see if they might sign up. We have started with politicians who have been supportive of ME/CFS, and with whom we have a relationship. So far, we are approaching: Scott Ludlam, Jenny Macklin, Claire Moore, Murray Watt, Colleen Hartland (Vic), Grace Grace (Qld), Trevor Evans (Qld).

LOOKING FOR VOLUNTEERS FOR IMPORTANT RESEARCH TO EXAMINE PATHOLOGY, AND IMPROVE DIAGNOSIS AND TREATMENT OF

CHRONIC FATIGUE SYNDROME.

The National Centre for Neuroimmunology and Emerging Diseases (NCNED), at Griffith University is recruiting volunteers for their research on Chronic Fatigue Syndrome.

Chronic Fatigue Syndrome is a highly disabling condition affecting 200,000 individuals in Australia.  To improve the health of patients with this condition, urgent research is required to understand the pathology involved and provide better diagnostic and treatment options.

This study is seeking individuals diagnosed with Chronic Fatigue Syndrome, as well as healthy volunteers.  To be a healthy volunteer, you should not have any pre-existing health conditions.

Participation in this study will involve:

  • Being between 18 and 70 years of age
  • Attending a collection centre, which are at various locations in Australia
  • Donate 85ml of blood
  • Complete an online questionnaire.  This will take approximately 30 minutes, but can be saved and completed in your own time

In appreciation for your time, you will receive:

  • $5 GiftCard for Coles
  • Automatically join a draw to win a $100, $200 or $500 Coles Myer Gift Card

For more information or express your interest in the research, please contact ncned@griffith.edu.au or telephone (07) 5678 9283

Dear supporters,

The NCNED team would like to thank the many people who have participated in our research studies.  We are in the process of recruiting more participants for our studies.

Our current study requires additional healthy volunteers who do not have issues with chronic illness or fatigue, also known as “healthy controls”.

The research team would greatly appreciate it if you shared this message with people you think may be interested in participating.

NCNED with begin to gift each participant with a $5 gift voucher as reimbursement for their time.  In addition, each participant will also go into a draw to receive a $500, $200 or $100 gift card, which will be drawn every 6 months.

Participation will require the following steps:

  • Contact NCNED on ncned@griffith.screening du.au or (07) 5678 9283.  One of the team will ask some brief screening questions to confirm if you are eligible.
  • If eligible you will be required to attend one of our collection centre around South East Queensland for the donation of a blood sample of up to 85ml
  • Within 1 week of the blood collection, complete an online questionnaire.  This will take approximately 30minutes, but can be saved and completed in your own time.

If there are any questions regarding participation please do not hesitate to contact us.

Kind regards and Best Wishes

The NCNED Team

Theresa Clark and Lyn Wilson will be joining the NCNED researchers on May 12th to celebrate International ME/CFS/FM Awareness Day.  Theresa and Lyn will be given the chance to see firsthand the research that is being done at Griffith University and meet all the researchers working so hard to help sufferers of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Both the NCNED and the ME/CFS/FM Support Association Qld Inc.., have worked in collaboration to have the Story Bridge turned blue on the 15th May. The National Centre for Neuroimmunology at Griffith University (Gold Coast campus) will also be turned blue for Awareness Week.

Natasha Testi-Fraser has again this year arranged for the bridges, fountains and buildings to be turned blue for Awareness Week

•Kurilpa Bridge (Brisbane)– lighting up 11-12 May and 14-16 May 2017

•Strand Fountain (end of Oxley St, Townsville) – booking from the 12th of May 2017 for 7 days

•Logan City Council Administrative Building – May 12th 2017

•Logan Entertainment Centre – May 11th 2017

•Victoria Bridge (Brisbane) – blue and purple on May 15th 2017

•Story Bridge (Brisbane) – blue and purple on May 15th 2017

Natasha is still waiting to hear back from Mackay and Rockhampton.

The paperwork has gone in for the Toowoomba City council but still waiting to hear back.

The National Centre for Neuroimmunology and Emerging Diseases who’s team is lead by Professor Don Staines and Professor Sonya Marshall-Gradisnik has been recognised by the Director, National Institutes of Health, Dr Francis Collins as the way to the future for ME/CFS research. The Director’s blog can be found at https://directorsblog.nih.gov/2017/03/21/moving-toward-answers-in-mecfs/