National Centre for Neuroimmunology and Emerging Diseases in Gold Coast, Queensland | Medical centre

National Centre for Neuroimmunology and Emerging Diseases

Locality: Gold Coast, Queensland

Phone: +61 7 5678 9283

Address: Parklands Drive 4222 Gold Coast, QLD, Australia

Website: www.griffith.edu.au/menzies-health-institute-queensland/our-institute/Infectious-Diseases-and-Immunology/neuroimmunology-and-emerging-diseases

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25.01.2022 /. NCNED wish to thank the ME/CFS patients and healthy volunteers that continue to support and participate in our research into the characterisation of ion channel dysfunction in ME/CFS. Naltrexone is the first therapeutic we are assessing for biological efficacy and hope to commence a clinical trial next year. ... Importantly, NCNED is also undertaking further investigations into other potential therapies very soon. We hope to commence these in vitro studies in October. NCNED greatly appreciate the contributions of past and present participants and hopes to engage more ME/CFS patients and healthy volunteers to further our research. NCNED researchers would like to sincerely thank everyone for their patience, understanding, and above all, your enduring support in this collective endeavour. In particular, NCNED would like to thank the Stafford Fox Medical Research Foundation, Mr Douglas Stutt, the Mason Foundation, the McCusker Charitable Foundation, Mr Adrian Flack, Mr and Mrs Ian and Talei Stewart, the Alison Hunter Memorial Foundation, the Buxton Foundation, the Henty Community, the Blake Beckett Foundation, Change for ME Charity, QLD ME/CFS/FM Support Association QLD Inc, the ACT ME/CFS Society, and ME/CFS and Lyme Association of WA Inc. Best wishes, Sonya, Don and the NCNED Team

24.01.2022 / : NCNED are pleased to announce that there will be two exciting awards presented at the RID Conference 2021 - a Student e-Poster Research Award in the amount of $250 and a Best Early Career Researcher Award for $250. Posters will be displayed at the conference and researchers are to deliver a short 1 minute presentation outlining their posters. The oral presentations for the Early Career Researcher Award will be delivered through...out the two day conference. This is an excellent opportunity for students and researchers to gain exposure for their research and expand their professional development opportunities and networks. Abstracts can be submitted by clicking on the following link: https://forms.office.com/pages/responsepage.aspx For further information regarding the RID Conference 2021, please click on the link below: https://www.griffith.edu.au//conferences-and-research-publ

23.01.2022 / () NCNED needs more ME/CFS patients who are currently taking LDN (3-5mg/daily) aged between 18-65 years old and non-smoking to complete an important study on pharmaceutical interventions. Participants will be asked to complete an online medical history questionnaire and to donate up to 85ml of blood. ... NCNED has the capacity to collect blood in QLD and NSW. Collections can be done at designated collection centres or home visits (only for particpants based in South-East QLD and border bubble) if required. For their time, participants will receive a $5 Coles voucher and enter the draw to win a $50, $75 or $100 Coles voucher drawn half-yearly. If you are interested in participating, could you please email [email protected] or call (07) 56789283 for further information.

23.01.2022 Dr. Avindra Nath will be a Keynote Speaker at our ME/CFS International Conference 2021: RID - Research, Innovation and Discovery to be held on 16-17 November at Sea World Resort and Conference Centre on the Gold Coast, Queensland, Australia. Dr Nath is a physicianscientist who specializes in neuro-immunology and neurovirology and serves as the intramural Clinical Director of the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of He...alth (NIH) in the U.S. and Chief of the Section of Infections of the Nervous System at NINDS. He is also the principal investigator of the NIH Post-Infectious ME/CFS Study and two intramural NINDS long COVID studies, examining the range and timing of symptoms and characterizing post-COVID abnormalities in brain structure, neurologic function, and autonomic nervous system function. See more

20.01.2022 , , - Stanley recently presented a summary of his PhD work in the Griffith Health Group 3MT competition. He was in the exceptional company of 22 other entrants from disciplines including Medicine, Psychology, Medical Science, Physiotherapy, Exercise Science and Dentistry. This year has had the most entrants to date and Stanley is very proud to have presented the work of NC...NED and raise awareness for ME/CFS. The title of Stanley’s entry is ‘Body Out of Order’. Stanley uses the analogy of an out of order arcade machine to describe the many intricacies of ME/CFS. These include misconceptions of the illness, natural killer (NK) cell dysfunction being a stable feature of ME/CFS, and the novel identification of TRPM3 dysfunction in the NK cells of ME/CFS patients by NCNED researchers. Stanley uses these notions as a platform to explain the significance of his research in TRPM7, a related channel, in advancing our understanding of ME/CFS and improving patient outcomes. Stanley will progress to final at Griffith University in September to hopefully go onto the Asia-Pacific Final 3MT. NCNED researchers would like to thank everyone who supports our research and the patients that enable advancements in ME/CFS research through their participation. In particular, NCNED would like to thank the Stafford Fox Medical Research Foundation, Mr Douglas Stutt, the Mason Foundation, the McCusker Charitable Foundation, Mr Adrian Flack, Mr and Mrs Ian and Talei Stewart, the Alison Hunter Memorial Foundation, the Buxton Foundation, the Henty Community, the Blake Beckett Foundation, Change for ME Charity, QLD ME/CFS/FM Support Association QLD Inc, the ACT ME/CFS Society, and ME/CFS and Lyme Association of WA Inc. Best wishes, Sonya, Don and the NCNED Team

17.01.2022 : " : , " ( -), .. A topical collection on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is being organized in the International Journal of Environmental Research and Public Health. The current COVID-19 pandemic is one of the greatest public health challenges ever enco...untered in terms of environmental risk, public health policy, and clinical management. The illness has also highlighted the emergence of a highly disabling Long-COVID syndrome which has many features in common with ME/CFS, including unrelenting fatigue, memory and concentration impairment, persisting and disabling pain, and impaired muscle function. Despite improvements in individual clinical and intensive care outcomes, the Long-COVID syndrome may onset from any level of severity of the presenting illness. ME/CFS has become an illness of increased interest due to its overlapping features with Long-COVID. , / , -. . -clinical characteristics -diagnosis and presentation of ME/CFS -challenges for medical and nursing management -pharmacotherapeutics and potential treatments -advances in pathophysiology and diagnostics -consequences and management of severe post-viral conditions, e.g., COVID-19 -epidemiology: incidence and prevalence investigations -public health policy and research -unmasking the evidence For detailed information on this Special Issue of this journal, please refer to: https://www.mdpi.com//Chronic_Fatigue_Syndrome_Medical_Nur

15.01.2022 NCNED needs more participants for current NCNED is continuing to undertake research in the area of calcium receptors, signalling and pharmaceutical intervention. We need more healthy volunteers as well as ME/CFS sufferers aged between 18-60 years old, non-smoking and not currently taking medication.... Please note . Participants will be asked to complete an online medical history questionnaire and to donate up to 85ml of blood. Collections can be done at designated collection centres or home visits if required. For their time, participants will receive a $5 Coles voucher and enter the draw to win a $50, $75 or $100 Coles voucher drawn half-yearly. If you are interested in participating, could you please email [email protected] or call (07) 56789283 for further information.

15.01.2022 NCNED is back in the laboratory and we are finishing some exciting research. NCNED is also commencing further receptor and calcium studies. We hope everyone is safe and wishing you all the very best.... Sonya, Don and the NCNED Team.

12.01.2022 Recently Dr. Kiran Thapaliya and NCNED researchers published an important neuroimaging paper in Neuroimage: Clinical journal. This paper caught attention in the ME/CFS community. As a result of this, Dr. Kiran Thapaliya was interviewed by @MyalgicEAustralia (ME Australia) and was featured in Meet the Scientists profile. To read his full interview, please click on the link below. https://meaustralia.net//meet-the-scientists-dr-kiran-tha/ NCNED researchers would like to ...sincerely thank the Stafford Fox Medical Research Foundation, Mr Douglas Stutt, the Mason Foundation, the McCusker Charitable Foundation, Mr Adrian Flack, Mr and Mrs Ian and Talei Stewart, the Alison Hunter Memorial Foundation, the Buxton Foundation, the Henty Community, the Blake Beckett Foundation, Change for ME Charity, QLD ME/CFS/FM Support Association QLD Inc, the ACT ME/CFS Society, and ME/CFS and Lyme Association of WA Inc. Best wishes, Sonya, Don and the NCNED team

10.01.2022 NCNED is delighted to welcome a visiting Research Fellow, Teagan Er, from Professor Livia Hool’s Laboratory, University of Western Australia. Teagan will be undertaking Patch Clamp Electrophysiology Training with our researchers to continue our ME/CFS drug discovery and ion channel investigations that forms a research aim of our successful NHMRC Grant Targeted Call for Research ME/CFS 2021-2024. Best wishes, NCNED team

09.01.2022 Mr Sean Holden and NCNED researchers are proud to report A systematic review of mitochondrial abnormalities in myalgic encephalomyelitis/chronic fatigue syndrome/systemic exertion intolerance disease" has been published in the Journal of Translational Medicine. NCNED is committed to publishing novel high quality and rigorous research papers in the field of ME/CFS. NCNED also endeavours to robustly evaluate the research literature (also known ...as systematic reviews) in ME/CFS to assist and inform researchers and patients. // . // //. . , . https://translational-medicine.biomedcentral.com//s12967-0 NCNED is always thankful to every participant in our research. We also would like to thank the Stafford Fox Medical Research Foundation, Mr Douglas Stutt, the Mason Foundation, the McCusker Charitable Foundation, Mr Adrian Flack, Mr and Mrs Ian and Talei Stewart, the Alison Hunter Memorial Foundation, the Buxton Foundation, the Henty Community, the Blake Beckett Foundation, Change for ME Charity, QLD ME/CFS/FM Support Association QLD Inc, the ACT ME/CFS Society and WA ME/CFS. Best wishes Sonya, Don and the NCNED team

06.01.2022 The National Centre for Neuroimmunology and Emerging Diseases at MHIQ are inviting research participants for an immunological and clinical investigation in ME.../CFS, in calcium receptors, calcium signalling and pharmaceutical intervention. Participants need to be QLD based (or within border bubble), between 18 to 65 years of age and formally diagnosed with ME/CFS. They must be non-smoking and have no previous diagnosis of other chronic illness, other than ME/CFS, and must not be on medications for depression, sleep, anxiety, anti-inflammatory, nor on zinc, magnesium and calcium based supplements. If interested in participating, you can: - email [email protected] or call (07) 56789283. - or register to take the medical history questionnaire, here: https://bit.ly/3hwgQ5x Griffith University Griffith Health National Centre for Neuroimmunology and Emerging Diseases - NCNED

06.01.2022 MHIQ are seeking patients formally diagnosed with ME/CFS who are currently taking Low Dose Naltrexone (LDN). Are you 18 to 65 years old, non-smoking, no pre...vious diagnosis of chronic illness other than ME/CFS and not taking other medication for depression, sleep, anxiety or an anti-inflammatory, zinc, magnesium nor calcium-based supplements? If you answered yes, then you may be eligible to help the National Centre for Neuroimmunology & Emerging Diseases (NCNED), with an important pharmacological intervention study! Participants are required to complete an online medical history questionnaire and donate up to 85ml of blood, and are free to withdraw at any time. The collection of blood can be done at designated collection centres around South East QLD or home visits if required. For their time, participants will receive a $5 Coles voucher and enter the draw to win a $50, $75 or $100 Coles voucher drawn half-yearly. If you are interested in participating, please email [email protected] or call (07) 56789283 for further information. Griffith University Griffith Health

05.01.2022 Numerous receptor projects at NCNED have recently been completed or are currently underway. Mr Stanley du Preez (pictured) is currently examining receptor cell signalling mechanisms in ME/CFS patients. His research project will be completed in the coming six weeks. NCNED’s world leading research showing ion channels and calcium signalling are implicated in ME/CFS, highlights the role of numerous TRPs in the pathology of ME/CFS.... NCNED researchers would like to thank everyone who supports our research. In particular, NCNED would like to thank , , , , , , , , , , , // , / / . Best wishes, Sonya, Don and the NCNED Team

05.01.2022 ! Recently, Natalie Eaton-Fitch travelled to Toowoomba Base Hospital to collect samples for research to further our receptor and calcium studies. Natalie is currently examining receptor signalling mechanisms in ME/CFS patients through techniques of Flow Cytometry and Microscopy. Her research project hopes to highlight the intracellular signalling role of TRP pathology in ME/CFS. We look forward to announci...ng her results in the coming months. NCNED researchers would like to thank everyone who supports our research. In particular, NCNED would like to thank , , , , , , , , , , , // , / / . Best wishes Sonya, Don and the NCNED Team

04.01.2022 : Dr Kiran Thapaliya, Dr Leighton Barnden and NCNED researchers have just published an important neuroimaging paper. The findings were published in Neuroimage: Clinical. This paper reports a significant increase in white matter as well as in basal ganglia in ME/CFS in contrast to healthy controls and other neurodegenerative diseases like multiple sclerosis and schizophrenia. An increase in T1w/T2w in white matter and basal gan...glia regions could potentially relate to increase in myelination in ME/CFS patients. The information and link is below: Mapping of pathological change in chronic fatigue syndrome using the ratio of T1- and T2-weighted MRI scans. Authors: Kiran Thapaliya, Sonya Marshall-Gradisnik, Don Staines and Leighton Barnden. Link: https://www.sciencedirect.com//artic/pii/S2213158220302035 NCNED would like to thank the Stafford Fox Medical Research Foundation, Mr Douglas Stutt, the Mason Foundation, the McCusker Charitable Foundation, Mr Adrian Flack, Mr and Mrs Ian and Talei Stewart, the Alison Hunter Memorial Foundation, the Buxton Foundation, the Henty Community, the Blake Beckett Foundation, Change for ME Charity, QLD ME/CFS/FM Support Association QLD Inc, the ACT ME/CFS Society and WA ME/CFS. Best wishes Sonya, Don and the NCNED team

03.01.2022 NCNED researcher Dr. Leighton Barnden was invited to present his findings on ME/CFS at The Centre for Advanced Imaging, The University of Queensland on 20 October, 2020. His talk discussed the detection of brain dysfunction in Chronic Fatigue Syndrome using multimodal brain MRI and is accessible by clicking on the link below: https://youtu.be/0H5UJQSa0l0

03.01.2022 NCNED would like to sincerely thank the for their continuing support of our research that has enabled us to be successful with our NHMRC Grant.

02.01.2022 : Congratulations to Ms Shara Close and NCNED researchers who just published an important paper on the Economics of ME/CFS in an Australian cohort. the mean annual cost of health care related expenditure and associated income loss among survey participants meeting diagnostic criteria for ME/CFS was estimated at $14.5 billion. For direct OOP and Government health care expenditure, high average co...sts were related to medical practitioner attendance, diagnostics, natural medicines, and device expenditure, with an average attendance of 10.6 referred attendances per annum and 12.1 GP visits per annum related specifically to managing ME/CFS. the economic impacts of ME/CFS in Australia are significant. Improved understanding of the illness pathology, diagnosis, and management, may reduce costs, improve patient prognosis and decrease the burden of ME/CFS in Australia. NCNED’s first priority is ME/CFS patients and this latest study highlights the significant economic impact for ME/CFS patients. NCNED is working very hard with further identification of the receptor dysfunction of ME/CFS. NCNED is also working in our laboratories with pharmacological investigations that we hope will assist ME/CFS patients in the future. The link to this paper is below: The economic impacts of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian cohort Authors: Shara Close, Sonya Marshall-Gradisnik, Joshua Byrnes, Peter Smith, Son Nghiem, Donald Staines, published in Frontiers in Public Health, section Health Economics. http://journal.frontiersin.org//10./fpubh.2020.00420/full Sonya, Don and the NCNED would like to sincerely thank everyone who participated in this investigation. Thank you to the Stafford Fox Medical Research Foundation, Mr Douglas Stutt, the Mason Foundation, the McCusker Charitable Foundation, Mr and Mrs Ian and Talei Stewart, Mr Adrian Flack, the Buxton Foundation, the Alison Hunter Memorial Foundation, the Blake Beckett Foundation, the Henty Community, Change for ME Charity ME/CFS/FM Support Association QLD Inc, the ACT ME/CFS Society, and ME/CFS and Lyme Association of WA Inc. Best wishes, NCNED Team

02.01.2022 The NCNED is inviting patients formally diagnosed with ME/CFS, fibromyalgia and healthy volunteers (aged between 18 to 65 years old) to participate in continuing research in the areas of quality of life, calcium receptors, calcium signalling and pharmaceutical intervention. Participants will be asked to complete a series of online questionnaires regarding medical history and disability severity. If interested, a number of participants will be asked to donate up to 85ml of blo...od. At the present time we are seeking participants that are based in QLD or are located within the border bubble. Participants are free to withdraw at any time. For your time, participants will receive a $5 Coles voucher and enter the draw to win a $50, $75 or $100 Coles voucher drawn half-yearly. If you are interested in participating, could you please email [email protected] or call (07) 56789283 for further information. https://prodsurvey.rcs.griffith.edu.au/pr/index.php/275725

02.01.2022 / The National Centre for Neuroimmunology and Emerging Diseases (NCNED) has been awarded $1.46 million in National Health and Medical Research Council funding for research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Part of Griffith University’s Menzies Health Institute Queensland, the centre’s researchers will investigate potential diagnostic tests as well as suitable pharmaco-therapeutic interventions.... NCNED Co-Director Professor Sonya Marshall-Gradisnik said the project will, for the first time, address NHMRC priorities to discover the pathophysiology of the disabling illness. It will pave the way for diagnostic tests and treatments using highly innovative research techniques known as patch-clamp electrophysiology,’’ she said. Our researchers have pioneered a technique known as patch-clamp electrophysiology used in ME/CFS studies demonstrating impaired calcium ion channels as a contributing cause of the pathology. These ion channels, known as Transient Receptor Potential (TRP) ion channels are associated with pathology in a number of neurological and other illnesses. The national and international project brings together the University of Western Australia, Queensland University of Technology, WHO’s Australian Rickettsial Research Laboratory, Geelong and consumer groups around Australia. It also links a number of overseas institutions including chief investigators and researchers in USA, including the Centre for Disease Control and Prevention (CDC) and researchers in Japan, Poland, and the UK. The collaboration of leading research institutions will set the scene for unparalleled international cooperation in this research field. NCNED Co-Director Professor Donald Staines said understanding the pathology of ME/CFS through this NHMRC grant should open up investigation of treatment opportunities for patients. We are extremely grateful for the enormous support and participation from patients to progress our ground-breaking research into this illness,’’ he said. This substantial NHMRC grant demonstrates the ongoing commitment of scientific research in Australia for ME/CFS and the achievement of NCNED’s success through the support of a number of philanthropic and research funding bodies along with MHIQ and Griffith University, MHIQ Director Professor Paul Scuffham said. / Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME) is a complex illness characterised by impaired memory and concentration, metabolic, cardiac, gut and immune dysfunction and debilitating muscle pain and fatigue. There is no known universal treatment for this illness that affects up to 240,000 Australians.

01.01.2022 We are always thankful to everyone who sends us letters of support and photos as they take pride of place in our Centre. Today we received this artist's drawing of a supporter and one of our researchers. ... Thank you to everyone who continues to support NCNED. Best wishes Sonya, Don and NCNED Team

01.01.2022 NCNED warmly welcomes Etianne Martini Sasso to the team. She will be completing Patch Clamp Electrophysiology training with our researchers over the next month, with a view to complete her PhD in this area. This work continues our ME/CFS drug discovery and ion channel investigations that forms a research aim of our successful NHMRC Grant Targeted Call for Research ME/CFS 2021-2024.