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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24.01.2022 : A sincere thank you to everyone who is currently participating in our Health Update Survey. We appreciate your time and assistance to provide this valuable information. NCNED is still seeking more participation from formally diagnosed ME/CFS patients. This project aims to investigate the Socioeconomic Impact, Quality of Life and Burden of Illness caused by national or individual large-scale life stressors. The Health Update Survey... will ask 10 questions every two weeks on physician satisfaction, diagnosis difficulties, quality of life and burden of illness till August 2020. Participants will receive a $5 Coles e-voucher and enter the draw to win $50, $75 and $100 Coles e-vouchers drawn half-yearly. If you are interested in participating, please contact NCNED on (07) 567 89283 or email [email protected] , , , , , , , , , , , // , / / for supporting this valuable research area to better understand the pathophysiology of ME/CFS patients. Best wishes, Sonya, Don and NCNED team

22.01.2022 National Advisory Advocacy Council for ME/CFS Research (NAAC) Officially launches website for International ME/CFS Awareness Day http://www.naac-mecfs.org... NAAC has been established in response to a recognised need for an independent collaborative platform to give consumers a voice in ME/CFS research and to help researchers to deliver high quality ME/CFS research of value to consumers and the public. NAAC supports and promotes best practice in effective consumer and community engagement in research and builds capability and capacity of consumers and researchers to engage in ME/CFS research.

21.01.2022 Recently Cassandra submitted her PhD thesis which identified impaired Transient receptor potential melastatin ion channels 2 and 3 surface expression significantly reduces natural killer cell cytotoxic activity in ME/CFS patients. NCNED would like to sincerely thank the McCusker Charitable Foundation who provided PhD scholarship for Ms Balinas and the Stafford Fox Medical Research Foundation for providing financial support for consumab...les. NCNED promotes and advocates for young and up and coming ME/CFS researchers for a long term career in this field. Ms Balinas is now working as a Postdoctoral fellow for NCNED whereby her first project is to investigate the Socioeconomic Impact, Quality of Life and Burden of Illness of ME/CFS patients caused by national or individual large-scale life stressors. Best wishes, Sonya, Don and NCNED Team

20.01.2022 : / The team at NCNED invite you to join us for the upcoming ME/CFS International Awareness Day on May 12th! This is how you can get involved:... -Post a picture of you in your favourite blue outfit -Include in your caption that its for ME/CFS International Awareness Day on May 12th -Like and tag @National Centre for Neuroimmunology and Emerging Diseases NCNED -Encourage your friends to do the same to start a chain of awareness for ME/CFS On May 12th, well post a photo collage of everyone who tagged us. Together we can do this! https://www.facebook.com/National-Centre-for-Neuroimmunology-and-Emerging-Diseases-NCNED-111905763774120/?modal=admin_todo_tour

19.01.2022 NCNED PhD students, Ms Natalie EatonFitch and Mr Stanley Du Preez, are currently in Melbourne collecting patient and control samples for their ion channel investigations. NCNEDs collaborator, The Australian Rickettsial Laboratory- World Health Organisation Accredited Laboratory- is hosting NCNED Researchers. NCNED is currently expanding their research collection site across Australia. We thank every patient who contacted directly NCNED in Victoria to participate.

19.01.2022 It is with deep regret that due to safety concerns around the COVID-19 pandemic, NCNED will postpone the Research, Innovation and Discovery Conference (RID 2020) until November next year. Our primary concern is always for the wellbeing of patients and their carers. As the situation globally is also likely to be restrictive for travel and large meetings for the foreseeable future it is the right decision.... We will continue to be working tirelessly in the laboratory and all our research in the meantime. Thank you for all your support and we look forward to seeing everyone next year. Best wishes NCNED team

19.01.2022 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.

17.01.2022 , , - 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 Stanleys 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 : / . , , . 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. NCNED has previously reported in a number of systematic reviews there is currently no conclusive evidence that suggests cytokines, microbiomes and neurological changes serve as unique biomarkers for development of ME/CFS. Additionally, our reviews also reported that supplements do not sufficiently assist in the management of ME/CFS. Importantly, in this new systematic review NCNED reviewed all research reporting metabolomic changes in ME/CFS patients compared to healthy controls. . Quality assessment was undertaken on study design, methodology and level of evidence. The results showed that metabolomics do not exhibit a conclusive role in CFS/ME/SIDS and thus do not serve as reliable biomarkers for ME/CFS. https://link.springer.com/epdf/10.1186/s12967-020-02356-2 We would also like to thank the Stafford Fox Medical Research Foundation, the Mason Foundation, Mr Douglas Stutt, 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 NCNED Team

17.01.2022 , NCNED research team member, Dr Helene Cabanas, attended and presented her research at the prestigious international EMBO symposium held in Bangalore, India from the 26th to the 29th of January 2020. The focus of this meeting was on the most recent developments in calcium signalling and their impact on health and disease. Dr Cabanas presented a research poster that identified for the first time the calcium-permeable nonselecti...ve cation channel, TRPM3, as a novel and attractive therapeutic target for the treatment of ME/CFS. She reported impaired TRPM3 ion channel function in immune cells from three different cohorts of ME/CFS patients using the gold standard of patch clamp technique. She also presented novel data describing restoration of TRPM3 ion channel function after in vitro treatment with Naltrexone, suggesting the potential use of this drug as a therapeutic intervention for ME/CFS. NCNEDs 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 continue to expand TRP and calcium investigations in ME/CFS. , , , , , , , , , , , // , / / . See more

16.01.2022 NCNED would like to thank Adrian Schrinner, Lord Mayor of Brisbane, for supporting ME/CFS International Awareness Day on May 12th.

15.01.2022 ! 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

15.01.2022 / () 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.

13.01.2022 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

13.01.2022 . Dr Thapaliya commenced at NCNED in 2019 and has been working on characterising tissue microstructure, for example myelin and iron in the whole brain using T1-weighted/T2 -weighted ratio map. This research examined voxel-based analysis and reported significant increase in myelin and iron in ME/CFS patients in comparison to healthy controls and was accepted in Int...ernational Society of Magnetic Resonance in Medicine (ISMRM) Conference and the full paper is under review in journal. , , , , , , , , , , , // , / / for supporting this valuable research area to better understand the pathophysiology of ME/CFS patients. Best wishes, Sonya, Don and NCNED team

13.01.2022 / 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.

11.01.2022 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

10.01.2022 , / Griffith Universitys iconic bridge across the Smith Street Motorway and the Ian OConnor Building will be illuminated in blue to mark International ME/CFS Awareness Day today. Griffith University is the worlds foremost research leader in understanding the pathology of ME/CFS, said Professor Sonya Marshall-Gradisnik, Scientific Director, from the National Centre for Neuroimmunology and Em...erging Diseases (NCNED). The symbolism of the Griffith University bridge being illuminated demonstrates the bridging of knowledge by NCNED researchers to the Ian OConnor Building where the research takes place. NCNED aims to identify the pathology of CFS/ME, develop a suitable blood test and identify candidate drugs for possible treatments. Chronic Fatigue Syndrome or ME (myalgic encephalomyelitis) is a complex illness characterised by impaired memory and concentration, metabolic, cardiac, gut and immune dysfunction and debilitating muscle pain and fatigue on exertion (also known as neuroimmune exhaustion). She said they were currently trialling a drug in the lab that they hope to take to clinical trials later in the year. Clinical Director, Professor Donald Staines said, Our research continues to demonstrate significant pathology in this highly disabling condition. NCNED has identified changes in certain receptors known as transient receptor potential ion channels having a detrimental effect in cell function. These are genetic, biochemical and immunological changes. All body systems are likely affected by this illness including the nervous system and cardiovascular system which involve changes in calcium-signalling within cells. It often follows infection but is likely to be an adverse reaction to the infection rather than the infection itself. Professors Marshall-Gradisnik and Staines said they were encouraging everyone to post pictures of themselves wearing blue t-shirts to the Griffith CFS/ME Facebook page to show solidarity. Link: https://news.griffith.edu.au//griffith-bridge-and-ian-oco/

10.01.2022 Congratulations to Mr Stanley Du Preez, PhD Student, who recently under went his oral defence of his PhD confirmation. Stanleys PhD project is investigating The Role of Transient Receptor Potential Melastatin 7 in Natural Killer Cell Cytotoxic Function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Stanleys first research paper is soon to be submitted and we are immensely proud of Stanley and all of our research te...am. , , , , , , , , , , , // , / / / /, .

10.01.2022 NCNED is excited to announce the / : () to be held at Sea World Resort Conference Centre, Gold Coast, Queensland, Australia on the . This year's Conference will provide a forum for sharing the latest scientific research data and translation to clinical evidence in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The 2020 Program and registration link will be available shortly. We look forward to seeing as many of you there as possible.

09.01.2022 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

09.01.2022 : / 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. NCNED has previously report...ed in a number of systematic reviews there is currently no conclusive evidence that suggests cytokines and microbiome serve as unique biomarkers for development of ME/CFS. Additionally, our reviews also reported that supplements do not sufficiently assist in the management of ME/CFS. In this new systematic review NCNED reviewed all research reporting neurological changes in ME/CFS patients compared to healthy controls using neuroimaging techniques. 55 papers in total were included in the review. This systematic review assessed the data from research reporting using neuroimaging techniques, for example magnetic resonance imaging (MRI), positron emission tomography (PET) and electroencephalography (EEG). Outcomes including changes in gray and white matter volumes, cerebral blood flow, sleep, EEG activity, functional connectivity and cognitive function were all reported. Although widespread disruption of the autonomic system is evident, the overall findings were not consistent across the studies. . , . The studies also had low reproducibility making it difficult to derive appropriate conclusions. Future studies using standardised protocols are required to confirm the neurological contribution to the pathology of ME/CFS. NCNED is thankful to the patients who participate in our research and continue to support the centre. We would also like to thank the Stafford Fox Medical Research Foundation, the Mason Foundation, Mr Douglas Stutt, 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. To view this article, please click on the following link: https://journals.plos.org/plosone/article Best wishes, Sonya, Don and the NCNED Team

09.01.2022 "Please share everyone" Some examples of our Blue Brigade are below. Lets get behind ME/CFS International Awareness Day.... A huge thank you to everyone who supported the NCNED initiative for International ME/CFS Awareness Day. Thank you to everyone who continually supports NCNED. Best wishes, Sonya, Don and the NCNED Team

09.01.2022 "Please share everyone" Some examples of our Blue Brigade are below. Let's get behind ME/CFS International Awareness Day.... A huge thank you to everyone who supported the NCNED initiative for International ME/CFS Awareness Day. Thank you to everyone who continually supports NCNED. Best wishes, Sonya, Don and the NCNED Team

08.01.2022 Ms Breanna Weigel is a new research student to NCNED. Breanna is currently completing her Biomedical Science Accelerated Honours Degree with NCNED. Currently, Breanna is writing a paper reporting findings for a gastrointestinal and dietary paper, as well as conducting data analysis for a second study examining the role of nutritional intake and supplement use in ME/CFS. , , , , , , , , , , , // , / / .

08.01.2022 : 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

08.01.2022 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. NCNEDs 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

07.01.2022 We have had a glitch with our Facebook page and have now created this new NCNED Facebook page. Please feel free to pass this onto others who also follow our page. We are hoping to eventually merge our old Facebook page with this new one in the future. Please take care and stay safe.... The NCNED Team

06.01.2022 Onward we march for International ME/CFS Awareness with the Blue Shirt Brigade.

04.01.2022 : 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. NCNEDs 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

04.01.2022 /. 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

03.01.2022 The NCNED team are pleased to announce the publication of the paper, Health-related quality of life in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An Australian cross-sectional study - Natalie Eaton-Fitch, Samantha Johnston, Pawel Zalewski, Don Staines and Sonya Marshall-Gradisnik. This research represents the largest study to assess quality of life in Australians diagnosed with ME/CFS. NCNED report for the first time the significant impact this dis...ease has on quality of life. Our researchers analysed 480 survey responses submitted by ME/CFS patients. Eaton-Fitch reports significantly low quality of life scores due to cognitive symptoms, sleep and sensory disturbances, and autonomic and immune dysfunction. This publication provides evidence of the disabling effects of ME/CFS and the impaired quality of life which hopes to motivate the Australian public health community to renew public health policies and increase focus on patient care. NCNED is thankful to the patients who participate in our research and continue to support the centre. We would also like to thank the Stafford Fox Medical Research Foundation, the Mason Foundation, Mr Douglas Stutt, 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. To view this article, please click on the following link: https://link.springer.com/artic/10.1007/s11136-019-02411-6 Best wishes, Sonya, Don and the NCNED Team See more

03.01.2022 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

03.01.2022 ! The Gold Coast, Logan and Brisbane Support Groups along with ME/CFS/FM Support Association QLD have come together to light up some Queensland landmarks for 12th May International Awareness Day for ME/CFS and Fibromyalgia. May 12th Story Bridge and Victoria Bridge in Brisbane blue and purple May 12th Sundale Bridge - blue... May 12th Logan City Council Building - blue May 12th Victoria Bridge Toowoomba blue The National Centre for Neuroimmunology and Emerging Diseases (NCNED), Menzies Health Institute Queensland Griffith University Gold Coast have arranged for the Ian O'Connor Building (also known as the Griffith Health Centre) and Parklands Drive to be lit up blue. This year the Bridge of Knowledge over the Smith Street Motorway will also be lit up blue as there have been many biomedical science research advancements by NCNED during the past year. May 12th is the International Awareness Day for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), and Chronic Immunological and Neurological Diseases (CIND) https://www.cdc.gov/features/cfsawarenessday/index.html The illnesses that are included under the Chronic Immunological and Neurological Diseases (CIND) umbrella are ME/CFS, Fibromyalgia, Lyme disease, Multiple Chemical Sensitivity and Gulf War Syndrome. Colours that are adopted are: Blue for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) Purple for Fibromyalgia Green for Lyme disease and Multiple Chemical Sensitivity Yellow for Gulf War Syndrome Fibromyalgia and CFS Gold Coast Support Group https://www.facebook.com/groups/211369192629801/ Brisbane ME and Chronic Fatigue Syndrome Support Group https://www.facebook.com/groups/Brisbane.CFS.Support/ ME/CFS/FM Support Association QLD Inc. https://www.facebook.com/mecfsfm.qld/ Best wishes Sonya, Don and NCNED Team

03.01.2022 : " : , " ( -), .. 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

01.01.2022 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.

01.01.2022 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.

01.01.2022 COVID-19 During the COVID-19 situation world-wide we are aware that different countries are in different phases of responses. There are also differences within countries jurisdictions as the illness unfolds. All would be familiar with the overall aim of reducing impact of the illness on individuals and society. A range of interventions exists from go hard go early regarding preventative measures to more phased responses. Decisions need to be made objectively on evidence an...d high-certainty assumptions. Responses will therefore vary depending on circumstances for each jurisdiction and its current phase. Implications for people with ME/CFS revolve around relative impairment of the immune system, particularly innate immune function. However the principles of protection remain consistent. Ensure minimum 1.5m social distance, remain in your home unless absolutely necessary to go out e.g. to obtain food or medical attention. Hand washing and meticulous hygiene are critical in self-protection. For wide ranging discussions and relative merits of the various responses to COVID-19 go to: https://www.abc.net.au/radio/programs/coronacast/ Stay safe and best wishes NCNED team

01.01.2022 , From January 26-29th, Ms Cassandra Balinas attended and presented her research and NCNED data at the prestigious EMBO Symposium recently held in Bangalore, India. This prestigious conference focused on calcium signalling and molecular mechanisms in health and disease. Cassandra presented NCNED research data that identified differential surface expression of TRPM2 and TRPM3 ion channels on NK cells. She also presented novel dat...a of impaired surface expression from TRPM2 and TRPM3 that is implicated in the dysregulated NK cell cytotoxicity in ME/CFS patients. NCNED world leading ion channels and calcium research in ME/CFS highlights numerous TRPs are involved in the pathology of ME/CFS. NCNED continue to expand TRP and calcium investigations in ME/CFS. , , , , , , , , , , , // , / / . See more