Research Research Digest Media and Research Digest (003) Friday 25th May 2018 Welcome to the Third Emerge Australia Media and Research Digest! The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 1 – Australian Senate acknowledges ME/CFS Link: https://meaustralia.net/2018/05/09/boost-for-people-with-me-and-chronic-fatigue-syndrome-thanks-to-parliament/amp/ On 9 May 2018, Senator Anne Urquhart, on behalf of Senator Helen Polley and Senator Stirling Griff, motioned for the Senate to acknowledge the obstacles faced by ME/CFS patients. The Senate recognised the establishment of the NHMRC ME/CFS advisory committee as an important step toward identifying gaps in funding, awareness and clinical guidance. The motion concluded by urging Federal, State, Territory and local governments to provide further support for people with ME/CFS to help them deal with the illness. 2 – Study on the effect of ME/CFS on the brain Link: https://www.sciencedirect.com/science/article/pii/S2213158218301347 The National Centre for Neuroimmunology and Emerging Diseases at Griffith University, Australia, conducted a study to measure ME/CFS patients’ brain responses to complex mental tasks. The study is published under a creative commons licence and was published online on 25th April 2018. It found that patients with ME/CFS had lower information processing capacities and more regions of the brain were recruited in order to compensate. This study asked ME/CFS patients to perform ‘Stroop Tasks’ and found that they required much longer to perform the task as compared to healthy individuals, but accuracy was not affected. A Stroop task tests a person’s selective attention capacity and their mental processing speed. The task involves showing a colourized word above, stating a colour, and a corresponding black and white word below, stating another colour. The participants were asked if the colour above matched the word underneath. During the test, a patient’s Blood Oxygenation Level Dependent (BOLD) changes were measured to give an indication of brain activity. The BOLD responses suggested that “the brain responds differently to a cognitive challenge in patients with ME/CFS, with the recruitment of wider brain regions to compensate for lower information capacity.” 3 – Focus on ME/CFS at the World Health Assembly in Geneva Link: https://www.actionforme.org.uk/news/me-highlighted-at-the-71st-world-health-assembly/ The first-ever World Health Assembly (WHA) side event focusing on ME/CFS has been held in Geneva by the International Alliance for M.E. (IAFME) and Action for ME. The aim of the event was to raise awareness amongst international policymakers and to promote collaboration amongst public health organisations and individuals with ME/CFS. The event focused on the need for additional biomedical research, and for better training and education for medical professionals. During the meeting, a short screening of Unrest was shown to a visibly shocked audience. A panel including both experts and ME/CFS patients addressed the challenges faced by sufferers especially highlighting the lack of research and understanding in the medical area. Professor Chris Ponting, from the University of Edinburgh, recommended four key areas of research: “a large-scale genome-wide association study that will help us understand the genetics of M.E.; cheap, longitudinal, population-scale immune system surveys; molecular and physiological measurements of people with M.E. following exercise; and taking action to ensure that case-control studies use more appropriate control cohorts with individuals with sedentary lives”. Finally, the meeting also reinforced the need for global leadership from the World Health Organisation in establishing a framework which provides support and advice to policymakers and other professionals concerning ME/CFS. 4 – Open Medicine Foundation Contributes $1.8M to Research into ME/CFS at Harvard Hospitals Link: https://www.genomeweb.com/informatics/open-medicine-foundation-commits-18m-research-mecfs-harvard-hospitals#.Wwdce0iFOUk The Open Medicine Foundation (OMF) has contributed $1.8 million to aid the creation of a new ME/CFS research centre at Harvard Medical School and affiliated hospitals. The centre will be led by Ronald Tompkin from the OMF advisory board and WenZhong Xiao from Harvard. Its research will be focused on “generating molecular data on muscle and other tissues affected by ME/CFS” which will hopefully help to develop effective treatments for the illness. 5 – Ex-professional Ballet Dancer uses art to help #MillionsMissing campaign Link: https://www.thecanary.co/feature/2018/05/19/an-ex-professional-ballet-dancer-is-using-his-art-for-the-millions-missing/ Anil van der Zee is a Sri Lankan born, Dutch-bred ex-professional ballet dancer who developed ME/CFS in 2007 after a viral infection. The illness ended his career but he is still contributing to both the arts scene and to raising awareness of ME/CFS by creating the #Art2CureME campaign. The campaign is a collection of “photography, written and spoken word, dance, art and music.” It uses art as a medium to convey strong emotional messages about the devastating effect of ME/CFS in order to reach others and facilitate change. Anil created the “I am still here” art piece which is a compilation of his work as a dancer set to the Unrest soundtrack. It captures the essence of Millions Missing showing how ME/CFS in some way robs the person of their previous life, yet they are still somehow, despite the disease, the person they always were.