Inspiration, information and empowerment regarding the topic of Chronic Fatigue Syndrome is expected this week with the screening of movie documentary Unrest on the Gold Coast.
The Sundance Festival award-winning documentary about the condition will be screened on October 12 by the support group ‘Young People with ME/CFS on the Gold Coast’ and will feature a talk by Griffith’s Professor Don Staines, co-director of Griffith University’s National Centre of Neuroimmunology and Emerging Diseases (NCNED).
CFS (and the related Myalgic Encephalomyelitis (ME) is currently a very misunderstood yet, prevalent illness, often hitting people just as their lives are meant to take off and is estimated to affect 1.2 per cent of the population.
Unrest is a complex story of hope and resilience, depicting the “hidden” patient experience of post-exertional crashes and touching on the worldwide impact of CFS/ME on patients, their families, the health care system and the tax-payer.
A powerful film
At 97 minutes long, it is a powerful film, covering not only the struggles of daily life with CFS/ME, but how the director and main subject, Jen Brea and her husband, have had to learn to adjust and fight for a new type of life.
“Jen has done an amazing job, doing a Ted-talk, making a documentary and creating a worldwide awareness campaign along the way,” says support group leader Ketra Wooding, who at aged 32, has been suffering from the condition since 2010.
“We hope that UNREST Gold Coast is an inspiring, informative and empowering night and that we can share it with the wider community.”
In a world first earlier this year, researchers from NCNED made an important breakthrough in understanding the cause of CFS, by revealing strong evidence that the condition is associated with a dysfunctional immune system.
The team, led by Professor Sonya Marshall-Gradisnik and Professor Staines identified a dysfunctional cell receptor in the immune system.
“This discovery is great news for all people living with Chronic Fatigue Syndrome (CFS) and the related Myalgic Encephalomyelitis (ME), as it confirms what people with these conditions have long known – that it is a ‘real’ illness – not a psychological issue,” says Professor Marshall-Gradisnik.
“CFS and ME are notoriously difficult to diagnose, with sufferers often going for years without getting the proper care and attention they need. Currently, there is no effective treatment.”
“This movie documentary is truly an inspiring and empowering story of hope for people with CFS/ME and gives a raw and honest real-life look at the lives of people suffering from it.”
WHEN: 12 October, 6.30pm
WHERE: Church of Christ, Southport.
Includes light refreshments on arrival, screening of the Sundance Film Festival winning documentary UNREST; a short talk by Professor Don Staines from NCNED
and Q & A, with a panel of specialists, and allied health experts to discuss “how we can support and manage patients now”.
MORE INFORMATION and links to film/bookings: www.trybooking.com/ricq
Panel members and support group members Ketra Wooding and Josh Roberts are available for interviews.
Panel speakers comprise:
MC – Adjunct Professor Chris Guilding, Griffith University Business School.
- Professor Don StainesMBBS, MPH, FAFPHM, FAFOEM: The latest breakthrough discoveries about the pathomechanisms of ME/CFS, made by himself, co-director Professor Sonya-Marshall Gradisnik and the team at the National Centre of Neuroimmunology and Emerging Diseases, Griffith University.
- Dr Georgina Gibson: Measuring orthostatic intolerance (most commonly Postural Orthostatic Tachycardia Syndrome (POTS)), using the 10 minute NASA Lean test, and how to use this information to help patients.
- Mark Barrett : The use of heart rate monitors and Metabolic testingto help patients, optimise the balance between rest and activity, and for those well enough to add in more activity, to exercise in a way that doesn’t make them worse.
- Professor Pete Smith, Queensland Allergy Services: Allergy, immunity, sensory sensitivities, how serious are these problems and what treatments may help.
- Julie Albrecht: Eliminating food, chemical and environmental intolerances from the ME/CFS world.
- Dr Dianne Shanley, Director of the Psychology Clinic, Griffith University: How psychological support and advice may help patients cope, with their new identity, post diagnosis.