Emerge Australia Inc in Melbourne, Victoria, Australia | Non-profit organisation

Emerge Australia Inc

Locality: Melbourne, Victoria, Australia

Phone: +61 1800 865 321

Address: Level 7, 276 Flinders Street 3000 Melbourne, VIC, Australia

Website: http://www.emerge.org.au/

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25.01.2022 Media opportunity for young people and carers! Junkee Media has put a call out for young people or their family members and carers, to be interviewed on-camera to speak about their experiences of ME/CFS. Our aim is to present a collection of interviews that show a range of different lived-experiences with ME/CFS, without sensationalism and with careful attention to the health-literacy objectives of the ME/CFS community, explains Junkee Medias Alex Sutcliffe.... We want to help shift our youth audiences literacy beyond an awareness of ME/CFS and towards an understanding of how it feels to live with ME/CFS. Junkee Media is seeking to interview: People aged 16-30 living with ME/CFS (where it is safe to do so) Family members and carers of people aged 16-30 who would like to represent loved ones who are homebound, or unable to safely share their story The Sydney-based media company hopes to film the interviews from their Surry Hills studio, and understands how difficult this could be for many in the community. The organisation has full COVID-19 safety processes in place. To participate or for more information please contact Alex at [email protected]

24.01.2022 Have you used any of the telehealth services made available through Medicare during Covid-19? Then we want to hear from you! Please tell us in the comments if you HAVE accessed telehealth and then click on the picture or the link at the bottom of to fill in the survey. Likes, comments and shares help to show Facebook that this post is interesting so a quick 'I'm definitely doing this' or a 'happy to help' counts for a lot! Emerge Australia and the ME/CFS community have campa...igned for telehealth services for people living with ME/CFS and other chronic illnesses for many years. In March this year, this became a reality when the federal government expanded telehealth to the entire population due to COVID-19. These arrangements are currently in place until September, at which stage they will be reviewed. Emerge Australia will be campaigning for telehealth to be made permanent for people living with ME/CFS but we want to understand your experiences first. If you have the time and energy to do so, please consider taking our short seven-question survey. Parents and carers of people living with ME/CFS are also welcome to participate. The survey will take 5-10 minutes to complete and will ask about your recent experience with accessing clinical care via telehealth. Please note that we're specifically NOT asking about our own telehealth nurse service - this is about changes due to COVID to find out what your experience has been. Every response is welcome and - as always - the more responses the better. The survey will close on Friday 26 June. If you would like to participate, you can access the survey via this link: www.surveymonkey.com/r/Z9D3NHR

24.01.2022 Do we possibly have a fluent French speaker in here? If there is we would be ever so grateful if you could send us a message. We have a very small (less than 5 mins) job that we really need a French speaking volunteer for. Thanks so much! Edited to say someone has stepped up. Thanks heaps to everyone who tagged a French speaker or passed the message on. You are all superstars.

24.01.2022 Would you like to meet a new group of people while learning mindful doodling or beginner crochet? We are super excited to announce that we are partnering with Laneway Learning to run two virtual support and art groups for people living with ME/CFS! Fill out the expression of interest at the bottom of this post if you are interested Our mindful doodling and beginner crochet groups are two of the first groups we are establishing as part of our pilot online support project ...and we cannot wait to get them off the ground! These groups will support you to build relationships while learning a new skill without needing to leave your home. We will be facilitating eight fortnightly meetings through virtual meeting platform Zoom. The sessions will run for ~40 minutes and will include a mix of social sessions and four taught classes. We have previously advertised these through our member Journal and our newsletter and we have a couple of spots left in each group: Our mindful doodling group will start on Tuesday 14th July at 2pm Our beginner crochet group will start during Aug/Sept and is expected to be an 11am class Minimal materials are required for you to participate. If you are interested in joining a group, please fill out some information about yourself here: www.surveymonkey.com/r/3M3JBGS While we will do our best to place everyone into a group, this is a small pilot project and we may not be able to take everyone on in this first round of sessions - but we hope to run more in the future! A private sub-forum will also be established for each group on our SOON TO BE LAUNCHED community forum. Keep your eyes peeled for more information about our community forum in the coming weeks! Happy to answer any and all questions / thoughts in the comments

23.01.2022 Sharing from Open Medicine Foundation. Breaking: This morning, Open Medicine Foundation was proudly featured in The Washington Post article, "Researchers warn COVID-19 could cause debilitating long-term illness in some patients." Read it now: https://wapo.st/2BeUZQp The article also features a quote from Dr. Ron Davis, OMF's Scientific Advisory Board Director: "The most important study of several were starting is to get coronavirus-infected patients and follow them over ti...me to see if they convert to ME/CFS, said Ron Davis, a geneticist at Stanford University. His adult son, Whitney Dafoe, is seriously ill with the disease. Read more about the new groundbreaking OMF-funded study on the possible conversion of COVID-19 to ME/CFS: https://bit.ly/2Zf58GH As part of the final couple days of #MayMomentum, please consider supporting this research project: https://bit.ly/2xCE497 Thank you to journalist Brian Vastag for shining a light on this important perspective.

23.01.2022 Severe ME Day August 8 Today we ask you to join us to mark Severe ME Day, a day dedicated to raising the visibility of the 25% of people who are severely affected by ME/CFS. ... Each year Emerge Australia joins the global chorus of voices to mark the day, to honour the strength of spirit of the severely affected community. In Australia an estimated 60,000 people with ME/CFS are completely confined to their beds and homes. These people are also the most invisible in research, support, awareness, education, work and every aspect of our society. There is a link below to a powerful new 15-minute documentary 'Severe & Very Severe ME/CFS' from the UK film team behind 'The Voices from the Shadows'. Please share this video to help raise awareness if you can! Wed also love it if you would comment on this post and add your own message of support and solidarity to the 25% with severe ME/CFS. To the 60,000 Australians living with severe ME/CFS, our team at Emerge Australia want you to know that you are in our hearts, and that you inspire us to keep doing the work that we do every single day

22.01.2022 So grateful to Lidia Thorpe for recording this amazing video for us. We are SOOOO grateful for your support and for STANDING WITH people with ME/CFS. Heartfelt thanks Lidia Thorpe

21.01.2022 We are so excited to be launching the Emerge Australia ME/CFS Community Forum over the coming weeks! We would LOVE it if you could possibly spend about 5 minutes (or less) sharing your thoughts with us about the forum e.g. topics that are of interest to you. Your input will genuinely help us to get the forum off to a great start. Our priority is to create a safe, welcoming space for people living with ,and affected by ME/CFS, to be able to come together and share their experi...ences. This survey should take less than five minutes to complete. As ever, please so share any thoughts in the comments below https://www.surveymonkey.com/r/me_cfs_forum

21.01.2022 *COVID-19 UPDATE 18 MAY* Restrictions are now easing throughout the country following the Federal Government's announcement of a three-stage plan to lift social distancing measures and travel bans, with each State and Territory adopting individual strategies. We've made some major updates to our easy-read COVID-19 resource so you can quickly find the facts on schools, private and public gatherings, travel and venues in our state-by state breakdown. https://www.emerge.org.au//coronavirus-and-me-simplified-f

21.01.2022 With the new Australian ME/CFS Centre for Collaborative Research expected to open early next year, we’re so pleased to let you know a little more about the research work underway. One of the first projects led by director Dr Chris Armstrong will be to develop a research approach that focuses on individual patients and the biology that underlies their disease by analysing 100 ME/CFS patients over three years, monitoring their health data via wearables and sampling and analysin...g their blood and urine. The longitudinal study approach is the cornerstone of personalised medicine, Dr Armstrong says. By looking at the biological differences in an individual at mild and severe moments of their disease we can start to piece together what may be causing their illness and, at the very least, work out what improves or exacerbates their symptoms, he explains. You can read more about the project here: https://www.emerge.org.au//australian-research-centre-to-o

21.01.2022 Research Opportunity Curtin University is conducting a research survey to learn more about the wellbeing of young people with chronic physical conditions and invites teens and young adults aged 16-25 in the Australian ME/CFS community to take part. The online survey asks questions about how participants think and feel, and takes about 20 minutes. On completion, participants can choose a $10 voucher to either JB Hi-Fi or Big W.... The survey data will be kept strictly confidential and de-identified. It will be collected at the end of August although the survey will remain open for some time for future research. To participate click on this link: https://curtin.au1.qualtrics.com/jfe/form/SV_0kdlJL9dgH7kqDb

20.01.2022 Please join us in welcoming Dr Chris Armstrong as the director of the new Open Medicine Foundation Australia Centre for Collaborative Research! Chris Armstrong, PhD, is Open Medicine Foundation’s (OMF) former Science Liaison and Visiting Scholar at Stanford University, and has been involved with researching ME/CFS for more than a decade. Pictured here with his wife Sandrine, Dr Armstrong is an Australian native and is perfectly positioned to lead and grow this new research hu...b for years to come. Under his leadership the centre will seek to develop a disease management and treatment approach that focuses on the individual patient and the biology that underlies their disease. The research will look for unifying biological pathways of ME/CFS that cause the disease experience to be the same between patients, while also identifying biological aspects that produce different disease experiences between patients. "I am thrilled that OMF has decided to expand its global ME/CFS research network to Australia and I am absolutely honoured to be the director," Dr Armstrong said. We have a world-class medical research community in Australia and we have the backing of some world-class organisations, now we just need to shake things up." OMF Australia is the fifth international OMF research centre to be established and joins other worldwide centres at Stanford University, Harvard University, Uppsala University and Université de Montréal. You can read more details about this wonderful initiative on our website here: https://www.emerge.org.au/omf-australia

20.01.2022 We're really pleased to be able to share this interview from earlier this week where Emerge Australia CEO Heidi Nicholl spoke with Great Lakes FM host John Healy. If you can it's nice to pop over (click on the original post shared below) and say thank you to John directly on the Good Health Facebook page. We're so grateful to Good Health for helping us to provide high quality information about ME/CFS and for being able to lead people to Emerge Australia where we can try our best to help.

20.01.2022 We are thrilled to announce that we have released ‘Lifelong Lockdown: Lessons Learned from the Health and Wellbeing Survey of Australians Living with ME/CFS’ today. Over 1,000 Australians with ME/CFS participated in our survey last year, enabling us to gain deep insights into the experiences of living with ME/CFS. You answered questions on a range of issues including symptom onset and diagnosis, engagement in education and employment, income and financial security, and opp...ortunities to improve healthcare services. Our key findings include: more than two-thirds of survey respondents live below the poverty line 89 and 88 per cent of respondents respectively had stopped or significantly reduced hours in paid work and education after onset of ME/CFS the greatest barrier to accessing appropriate services was providers’ (such as GPs and allied health professionals) lack of knowledge about ME/CFS The report is a powerful tool to increase understanding of ME/CFS and to drive must-needed change across the health, social care and education sectors. Head to our website to view the infographic, read our recommendations and download the full report: https://www.emerge.org.au/health-and-wellbeing-survey-2019 Heartfelt thanks to everyone who participated in this survey we could not do what we do without you!

19.01.2022 Huge thanks to Patrick Gorman MP, Federal Member for Perth, for taking on the #mecfschallenge. Your support of the ME/CFS community over the last few years really means a lot to us. Particularly loving the bloopers at the end here

19.01.2022 Have you looked at our telehealth report or written to your MP to ask them to extend funding for telehealth yet? We would love you to help us by writing to your local MP about the importance of this service to our community The federal government recently announced that telehealth can now only be accessed by people who have had a face-to-face appointment with their GP in the last 12 months.... We know that this will unfairly exclude many people living with ME/CFS who find it difficult to attend in-person appointments. Were asking the federal government to: make telehealth permanently available through Medicare after the review period in September exempt people with chronic illness from the requirement to attend a face-to-face GP appointment in the previous 12 months in order to access telehealth Don't know where to start? Go to our website to find: a draft letter template information about how to contact your MP a quick online form that you can fill in to let us know that youre involved in the campaign! A huge thanks to everyone who has already taken the time and energy to write to your MP we know that some of you have already received replies which is so fantastic! www.emerge.org.au/telehealth-campaign

18.01.2022 As May 12th Awareness Day and our #MillionsMissing campaign draws to a close we want to share with you this beautiful, warm, funny song from Sarah Hunter an Australian woman living with ME/CFS. Sarah is 90% housebound and wrote this song over the last 4 years of being unwell - adding verses as she felt able to. Today she's sharing it with us and with the #MillionsMissing in Australia. Thank you Sarah and thank you to everyone helping to spread awareness of ME/CFS

17.01.2022 Congratulations to Sonya Marshall-Gradisnik and her team at National Centre for Neuroimmunology and Emerging Diseases - NCNED for their $1.4m grant from NHMRC’s ME/CFS Targeted Call for Research! The successful project, ‘Ion channel dysfunction in the pathophysiology of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: diagnostic biomarkers, therapeutic targets and treatments’, will build on this team’s previous work in examining the role of calcium ion channels in ME/CFS.... This substantial grant will provide this team the opportunity to further test their hypothesis, and could lead to a diagnostic test or treatments. We look forward to supporting this project! https://news.griffith.edu.au//1-5m-nhmrc-grant-boosts-me-/

16.01.2022 Really powerful video about UK based surgeon Dr Nina Muirhead who has ME. The video is viewable on the following link. You need a (free) subscription to read the whole article but the video is freely accessible even without a subscription. https://www.thetimes.co.uk//chronic-fatigue-syndrome-it-fe

15.01.2022 Australian ME/CFS Research Centre Launched! We are so thrilled to announce that we have partnered with Open Medicine Foundation (OMF) to launch the fifth OMF international research centre right here in Australia! This new partnership means that we can now directly fund absolutely vital research to help more than 250,000 Australians living with ME/CFS.... The centre has been established by Open Medicine Foundation Australia, a new foundation established to support biomedical research into ME/CFS in Australia. The foundation has been created through a partnership between Emerge Australia and OMF. Any donations for research made to Emerge Australia will be directly passed to OMF Australia and will be used to support the new OMF centre headed by our very own Dr Chris Armstrong, a leading researcher into ME/CFS, and his team. We will have a LOT more news coming on this over the next few days including details of a public fundraising campaign and we will be giving you details on how you can help boost our message to your own networks to help raise funds for this absolutely vital research. You can read more details about this wonderful initiative on our website here: https://www.emerge.org.au/omf-australia

15.01.2022 This week is National Volunteer Week! We are so grateful for the chance this week provides to acknowledge the quiet, steadfast support of our volunteers, many of whom live with ME/CFS. Our volunteers contributed a huge total of 1,632 hours (!) in the last financial year, and without this support we simply could not deliver our services and programs to the high standard that we do. ... We are taking therefore taking the chance to recognise and acknowledge our volunteers this week and we hope that you will join us by leaving a heart in the comments section below, to acknowledge the incredible contribution that they make to the ME/CFS community. Thank you

14.01.2022 Were launching a letter writing campaign to ask the federal government to make telehealth available through Medicare on a permanent basis and we need your help! We received 419 responses (!) to our telehealth survey a few weeks ago, and the results are in: You told us that telehealth has significantly increased your access to necessary health services... Once COVID-19 has passed, 82 per cent of you would prefer to continue accessing services using a mix of telehealth with occasional face-to-face appointments, and 9 per cent would prefer to use telehealth all of the time The FULL REPORT can be downloaded from our website We telehealth, but currently this service is only available until September. We would love you to write to your local MP and tell them why telehealth is so essential to people living with ME/CFS. Writing a letter can make a huge difference as politicians love hearing from their constituents. Don't know where to start? We explain how to contact your MP on our website alongside the telehealth survey findings. Weve also written a draft letter which you might like to use as a template! www.emerge.org.au/telehealth-campaign

14.01.2022 Thank you City of Melbourne! We are thrilled to announce Emerge Australia has won a $5000 COVID-19 business grant from @cityofmelbourne. Were so grateful for the support on behalf of the ME/CFS community. The grants were established to help fund not-for-profit organisations like Emerge Australia and smaller businesses, to refocus and expand delivery of projects and initiatives to online platforms. ... This grant has supported all of our COVID related changes, the many (many!) web updates that we did for patients and it has supported us in rescoping #MM which was so incredibly successful this year. Thank you

14.01.2022 Matt, awesome video! Thanks so much for taking part, and challenging others to jump in too.

14.01.2022 This Saturday 8 August is Severe ME Day, a day dedicated to raising awareness of the plight of the 25% of people with ME/CFS who are the most severely impacted by the condition. Today we are so pleased to share this Open Medicine Foundation's Severe ME Day initiative, #TheViewforME. This campaign asks all people affected by severe ME/CFS and their families, loved ones and carers, to show the world what their lives look like with some brief details and a photo of their daily ...view. Please support the campaign if you can you can participate, share the post, or follow #TheViewforME through August as OMF features individual stories through its social media accounts. On Saturday we will post a link to a short new documentary made for Severe ME Day which we hope you will share as widely as possible. Well also be asking everyone in the community to comment on the post with messages of solidarity and support.

14.01.2022 From Friday 19th to Sunday 21st June, My Giving Circle will donate $1 for each new person voting for one of our amazing Community and Health Charities. Voting is free and only takes 30 seconds, with all votes also counting towards our $70,000 grants round closing June 30th. Please support Emerge Australia - especially if you haven't taken part in voting before! ... https://mygivingcircle.org/charity/emerge-australia-inc/

13.01.2022 We are so thankful for all the supportive messages surrounding our news about the new Open Medicine Foundation Centre for Research in Australia. We're sure that Casey and his wife will have been looking at all your comments and that they will be feeling so grateful for your support. But back to the science! Our CEO Dr Heidi Nicholl has made a little video (in lockdown) where she has answered some of the most pressing questions about our new partnership with Open Medicine Fou...ndation. She also has generously agreed to answer all and any of your questions about the partnership in the comments below! Please note she won't be on constantly so you may not get an answer immediately but she will try and answer every question. We'll also see if we can send over science questions to Chris - or if you'd like us to we'll see if we can do this again and get Chris to answer your science questions in a video himself. Let us know! Also, she apologises in advance but she tries to keep per personal Facebook quite small and just for close personal friends so won't be accepting friend requests. Thanks to everyone for coming on this journey with us. Remember you can now donate to OMF and biomedical research in Australia via the HelpCureME campaign - with all of the normal tax deductible status - through Emerge Australia at the following link: https://www.emerge.org.au/appeal/helpcureme

13.01.2022 Don't forget that you are still very welcome to go to the #MillionsMissing virtual event and click through to the 'discussion' (scroll all the way to the bottom of the page when you click the link) where you can: share a post write a message of support for others or share your story... upload a video of you or a family member doing the #MECFSchallenge You can also read all the posts, view the 'selfies' and watch people do the challenge. We are also still sharing anything we see where Emerge Australia is tagged (or #EmergeAustralia) and anything with #MECFSchallenge. The challenge runs ALL WEEK. Tomorrow is May 12th - thinking of everyone living with or caring with someone with ME/CFS https://www.facebook.com/events/608255883096757/

13.01.2022 Thank you to Ketra for recording this video and taking part in the #MECFSchallenge

13.01.2022 TELEHEALTH CAMPAIGN UPDATE In July, we launched a letter writing campaign to ask the Federal government to: make telehealth permanently available for people living ... with ME/CFS through Medicare; and exempt people who are housebound/bedbound from the requirement to attend a face-to-face GP appointment in the previous 12 months in order to access telehealth We telehealth but at the moment this service is only available until September. For this campaign, we asked you to write to your local MP and explain why telehealth is so important for people living with ME/CFS. Weve also written to the Hon Greg Hunt MP, Minister for Health about this issue. We are so grateful to everyone who got involved and are pleased to announce that more than 30 MPs and Senator around Australia received one or more letters from you, their constituents! Is your MP on the list? Federal MPs who were contacted by people with ME/CFS or their allies are listed below. Do you still want to get involved? Go to our website to find: a draft letter template information about how to contact your MP; and a quick online form that you can fill in, so we know youre involved in the campaign! www.emerge.org.au/telehealth-campaign So far, no one in WA or Tasmania has participated in the campaign so we especially encourage you to get involved if you have the the time and energy to do so! MPs who have been contacted: Dr Katie Allen (Lib, VIC) Kevin Andrew (Lib, VIC) Angie Bell, (Lib, QLD) Chris Bowen (ALP, NSW) Russell Broadbent (Lib, VIC) Josh Burns (ALP, VIC) Lisa Chesters (ALP, NSW) Damian Drum (Nat, VIC) Justine Elliot (ALP, VIC) Nicolle Flint (Lib, SA) Josh Frydenburg (Lib, VIC) Katy Gallagher (ALP, ACT) Andrew Giles (ALP, VIC) Luke Gosling (ALP, NT) Helen Haines (Independent, VIC) Catherine King (ALP, VIC) Julian Leeser (Lib, NSW) David Littleproud (Nat, NSW) Rob Mitchell (ALP, VIC) Scott Morrison (Lib, NSW) Llew O'Brien (Lib, QLD) Ted O'Brien (Lib, QLD) Brendan O'Connor (ALP, VIC) Alicia Payne (ALP, ACT) Tanya Plibersek (ALP, NSW) Michelle Rowland (ALP, NSW) Dave Sharma (Lib, NSW) Julian Simmonds (Lib, QLD) Zali Steggall (Independent,NSW) Susan Templeman (ALP, NSW) Matt Thistlethwaite (ALP, NSW) Kate Thwaites (ALP, VIC) Trent Zimmerman (Lib, NSW) If we have missed anyone, please let us know in the comments or fill out the form on our website As always, thanks so much for your support we really couldnt do this without you!

12.01.2022 Congratulations to Chris Armstrong, part of the successful Bio21 Molecular Science and Biotechnology Institute team which received $784,000 from NHMRC’s Targeted Call for Research grant! The project will focus on young people (aged 13-18) and will use ‘omics approaches (metabolomics, proteomics, and genomics) to try to understand what’s happening in their cells. The study has two main parts: ... A case control study will compare young people with ME/CFS with those of healthy people the same age A longitudinal study following young people with ME/CFS over time to see how their symptoms and their cells change. In addition to using ‘omics approaches, the longitudinal study will include wearables and an app to help track ‘good’ days and ‘bad’ days. We look forward to supporting this study! https://www.omf.ngo//omf-scientist-receives-grant-in-aust/

12.01.2022 We’re thrilled to let you all know that the results of the $3m ME/CFS Targeted Call for Research (TCR) have been announced! The TCR was a recommendation of the NHMRC’s ME/CFS Advisory Committee’s 2019 report. Congratulations to the successful grant applicants: Professor Sonya Marshall-Gradisnik... Griffith University Grant: $1.46m Project title: Ion channel dysfunction in the pathophysiology of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: diagnostic biomarkers, therapeutic targets and treatments Professor Ken Walder Deakin University Grant: $1.08m Project title: Using ‘omics to unravel the pathophysiology and repurpose drugs to treat ME/CFS Professor Paul Gooley University of Melbourne Grant: $784,000 Project title: Exploring the role of nitrogen metabolism, energy metabolism and mitochondrial function in the pathophysiological mechanisms of paediatric ME/CFS We’re thrilled that this grant money all went to high quality biomedical research which has the capacity to help further our understanding of ME/CFS and may help to find effective treatments for people struggling with this disabling disease. Emerge Australia has relationships with all these groups and looks forward to supporting these research projects moving forward. https://www.nhmrc.gov.au/file/15682/download?token=xxUI-LiS

09.01.2022 Have you completed our quick online survey about telehealth services yet? The survey closes tomorrow, and we want to hear from you! If you would like to participate, you can access the survey via this link: www.surveymonkey.com/r/Z9D3NHR... In March this year, the federal government made telehealth available through medicare for the entire population due to COVID-19. These arrangements are currently in place until September, at which stage they will be reviewed. We want to understand how the ME/CFS community have experienced telehealth what worked well and what didnt work so well. Well be using this information to campaign for telehealth to be made permanent for people living with ME/CFS (as well as other chronic illnesses ad disabilities). The survey will take 5-10 minutes to complete and will ask about your recent experience with accessing clinical care via telehealth. Please note that we're specifically NOT asking about our own telehealth nurse service - this is about changes due to COVID to find out what your experience has been. Every response is welcome and - as always - the more responses the better

09.01.2022 R U OK? September 10th is R U OK day - which focuses on how a single conversation can change or even save a life. Its a chance to reach out to someone you know or care about who might be struggling. And it might help to explain if people have been asking YOU today if you are ok. The short version - of course it's ok to NOT be ok. Learn more by visiting:-... https://www.ruok.org.au/how-to-ask #RUOKDay Content warning: there is a lot of yellow and the colour scheme may not be for everyone. Important info: To help support the mental health of Australians, the Australian government has provided an additional ten government-funded sessions with a psychologist for anyone who is in isolation, quarantine or under movement restrictions due to COVID-19. If you've already used your ten sessions for this year, you can make a GP appointment to get ten more. You can read more about the additional COVID sessions here: https://www.health.gov.au//additional-covid-19-mental-heal https://www.ruok.org.au/how-to-ask

08.01.2022 Congratulations to Ken Walder and his team at Deakin University for their $1.08m grant from NHMRC’s ME/CFS Targeted Call for Research! The successful project, ‘Using ‘omics to unravel the pathophysiology and repurpose drugs to treat ME/CFS’, will focus on the mitochondria, which create energy in the cell. This study will also examine existing drugs, to look for potential treatments which could be tested in clinical trials. We look forward to supporting this project! ... https://www.deakin.edu.au//major-study-to-unravel-secrets-

08.01.2022 We are super excited to announce that we are closing in on the launch of our new Emerge Australia Community Forum! The Community Forum is the CENTREPIECE of our online peer support project which IS ALL LAUNCHING ROUND ABOUT NOW! We are therefore enormously pleased to invite you to sign up now for SPECIAL EARLY ACCESS TO THE FORUM, and to be kept updated with news about the forum and about our virtual peer support program! WHY ARE WE BUILDING A FORUM? ... You may have noticed that while Emerge Australia has a strong social media presence through our Facebook page and Twitter account (you all do a fantastic job at commenting and liking !), we dont run a Facebook group. Not having a group can make discussions and conversations around topics difficult and limited. It's hard for you, our members and friends, to start a conversation and to tap into each other's unique, deep mine of lived personal experiences. There are of course a number of BRILLIANT Facebook groups for our community which we, and many of you, value highly . BUT, not everyone wants to be on social media (many members of the Emerge Australia family won't see this message which is why you might see it doubled up as a newsletter) and many of us sometimes want a break from social media - but still want to be connected, or might still have a question to ask of the ME/CFS hive-mind. Facebook groups also have questionable privacy and data security can be a concern. You might remember that earlier this year we launched a TRIAL PHASE for four different community platforms and we recruited some fabulous dedicated volunteers to test the pros and cons of each. THANK YOU so much to everyone who took part in this testing: your evaluations provided excellent feedback on the best platform for our needs. Our goal is to create together a safe, positive and welcoming space for people living with ME/CFS to meet with each other, share experiences and to become a vital new resource for information and social connection for everyone living with, and caring for someone with, ME/CFS. Please do ASK US ANYTHING in the comments - we know this is a big step and a big project to try and launch. We will however, try and keep this thread - in keeping with the aims of the forum - as a positive space. We know that this is an especially challenging time - particularly for people in and around Melbourne - so please be aware that we might respectfully moderate any threads/comments that we consider to be unduly negative. Please please do sign up for our new Community Forum here: http://eepurl.com/g9XQdD We are truly excited about this project and we hope that you are too. Please join us in taking this next step in creating a community of mutual support and benefit.

07.01.2022 Don't forget to upload your #MillionsMissing selfie to your personal profile if you haven't done it yet! If you can make it public even better. If you put the #emergeaustralia we will reshare it into our #MillionsMissing event. With over 100 selfies created this year, we can't share them all at once, but here are a few to start the process of people living with ME/CFS being SEEN. We'll add more to the album in the next few days.

07.01.2022 There's only a week to go until we open our new Emerge Australia Community Forum to everyone who has signed up for early bird access! Thank you to all of you who have already signed up, to everyone who participated in the trial phase earlier this year, and to our staff for their amazing work to build this brilliant forum. Our priority is to build a safe and welcoming space for the ME/CFS community to meet, share experiences, support each other and to build a vital new resourc...e. Wed love you to sign up if you havent already done so! You can register for early bird access here: http://eepurl.com/g9XQdD We will send out a newsletter to everyone who has signed up next Friday with a registration link and some guidelines around posting and commenting. We cant wait to see you there!

07.01.2022 We won $200 in Bankwest's April Easy Grants round! Thanks to everyone who voted for us

06.01.2022 Emerge Australia welcomes the announcement that telehealth services will continue to be made available via Medicare until March 2021 www.abc.net.au//telehealth-services-extended-six-/12675628 Emerge Australia and the ME/CFS community have been campaigning hard this year for telehealth services to be made permanently available. A complete update on the campaign and information about how you can participate can be found on our website: www.emerge.org.au/telehealth-campaig...n We will continue to advocate for: telehealth to be made permanently available for people living with ME/CFS after March 2021 people who are housebound or bedbound to be exempt from the new requirement of attending a face-to-face appointment with a GP in the previous 12 months in order to access telehealth If you have been impacted by this new requirement, we would love to hear from you

06.01.2022 We are so thrilled to announce that our first Ambassador at Emerge Australia is motorcycle racing legend and two-time MotoGP World Champion Casey Stoner! As someone in the public eye who is living with ME/CFS, Casey has joined with us to help promote awareness for our Help Cure ME campaign, which is raising funds to support the newly established Australian Centre for Collaborative Research, the fifth international research centre in the Open Medicine Foundation network. www....emerge.org.au/helpcureME Casey appeared on the Today Show this morning to announce the fundraising initiative and has been working hard with us behind the scenes to create this video story to amplify the campaign far and wide. We would love you to come along on the ride with us as well here are a few ways you can promote Help Cure ME: Share Casey’s video to your own social media networks Follow Casey on Facebook and Twitter and like, comment and share his posts for the Help Cure ME campaign (as this helps to amplify the message)* You can find out more about Casey and the new research centre on the Emerge Australia website: www.emerge.org.au *pro-tip Casey's page should be sharing their own version of the video around 4pm!

05.01.2022 Thanks to ABC RN Life Matters and host Hilary Harper for this morning’s segment on ME/CFS. Hilary spoke to our CEO Heidi Nicholl, Deakin University researcher Ken Walder, and Geelong patient, Sue Collins, about life with ME/CFS, difficulties getting diagnosis and treatment, and the new Deakin ME/CFS research project. Segment runs for 16 mins. ... https://www.abc.net.au//finding-hope-for-those-li/12761110

05.01.2022 Great to see patient advocate Ricky Buchanan in this excellent piece about telehealth access. We sincerely hope that telehealth continues as an option for those who need it once the COVID pandemic situation eases. Well done on another great piece of advocacy and awareness raising Ricky https://www1.racgp.org.au//is-telehealth-a-lifeline-for-is

04.01.2022 It's now heading towards 5.30pm and we're starting to wind down a little over here for today. But we will absolutely keep sharing and posting #MECFSchallenge vids and selfies both on the Emerge Australia page and in the #MillionsMissing event over the next few days. It's definitely not too late to get involved! **We would LOVE to know your thoughts on how we ran this virtual event and what your experience has been.** We have had a whole team on board from Emerge Australia t...oday responding to hashtags, mentions, comments and queries across twitter, instagram and Facebook! Massive list of thanks! Special thanks to: Chris Anderson for amazing video editing under time pressure, TOFU graphic design team for selfies and how-to's (and other things), everyone who has taken part, the Emerge Australia team with Jen Temm, Simone Eyssens, Rebecca Bramley, Amy Gibson, Julie Delaforce (for thinking up the challenge and tons of help with all things social media!) and Kate Mills for particular involvement on the day and for starring in videos! We absolutely encourage you to have a go at the challenge if you haven't done so yet - we'll be posting and reposting all week and, of course, we'll be marking the actual awareness day on May 12th. Thanks heaps, Heidi (CEO at Emerge Australia)

04.01.2022 TL:DR today we are marking ME/CFS Awareness Day, sharing figures from the Emerge Australia campaign (about how many people we reached) and we would LOVE your feedback on our event. Remember that the event is open all week and you can go in (make sure to find the 'discussion' tab) and post or comment, watch (or rewatch videos), read the posts and see people's selfies. WHAT WORKED WELL: we reached many many people! We engaged (and re-engaged) a fantastic number of politic...ians and other supporters and many of them had a go at saying myalgic encephalomyelitis! The campaign didnt diminish the seriousness of the condition but was also light in tone (which is often hard to balance). We managed to maintain continuity from shoe tags to #MMselfies. We enjoyed kicking off the global week of action here in Australia. We really like having an Awareness Week starting on the Saturday before May 12th so that activities can be spaced out a little. SURPRISES: the #mecfschallenge resonated strongly overseas, and is going strong on Twitter particularly. Patients, allies and organisations have been embracing and amplifying the campaign in New Zealand, throughout the US and UK, and as far afield as Germany, France, Italy, Portugal, Sweden, Belgium, the Czech Republic and the Netherlands, with comments including fantastic idea, simple and creative and catchy and fun. PLANNING FOR 2021: the most important thing though is how YOU experienced this event. It is the first time weve delivered #MillionsMissing and Awareness Week as an entirely virtual event and we really want to know what you thought and what we could learn to be even better next year. For instance: Did you feel the same engagement as you would at a physical event? We know so many of you miss out on this year after year because you're too unwell to attend rallies on the day. The official Awareness Day on 12 May can feel a bit underwhelming with our focus on holding #MillionsMissing on the first Saturday of the week. Do you think we need some other shared activity and if so, what would you like to see? #MILLIONSMISSING THE NUMBERS The number of people who saw any content from Emerge Australia or about Emerge Australia on Facebook between May 7th to 11th = 70,149 Our 5x most popular videos on Facebook reached 54,300 people Promotional videos included support from: 10 politicians from across the Coalition, ALP and Greens parties 18 scientists (and people supporting the scientists) working in ME/CFS research Heaps of other supporters! #MECFSCHALLENGE At least 185 #MECFSchallenge videos (and counting) have been posted on Fb and Twitter across 12x countries These challenge videos were viewed just over 67,000 times! #MMSelfies We created more than 100 #MMSelfies which formed a powerful visual story of peoples individual experience of ME/CFS.

03.01.2022 A big thanks to Senator Jordon Steele-John and Senator Rachel Siewert for bringing a motion to Australian Senate last week to raise awareness of the experience of people living with ME/CFS. The incredible response from a multitude of MPs to ME/CFS Awareness Day in recent weeks brings us hope. We are encouraged to see an increasing recognition of ME/CFS by decision makers in Parliament and are incredibly grateful to all our allies and supporters. The motion, which was passed b...y the Senate: Acknowledged ME/CFS Awareness Day Recognised ME/CFS as a highly complex, debilitating disease affecting 250,000 Australians Called for increased federal funding into biomedical research and increased awareness of ME/CFS across healthcare and social support systems. The motion can be found on page 1588 at: parlinfo.aph.gov.au//t/sen-jn.pdf;fileType=application/pdf

03.01.2022 COVID-19 UPDATE 1 JUNE The latest update to our COVID-19 resource includes the stepped re-introduction of mutual obligations for job-seekers which begins next week. From next Tuesday 9 June, job seekers are required to undertake at least one appointment with their employment services provider (this can be done online or over the phone). During this first phase suspensions and financial penalties will not be applied, and vulnerable job seekers can apply for exemptions. The Gov...ernment has not provided dates for the next two stages of reinstating requirements but Phase 2 will involve applying for work, and Phase 3 will see penalties recommence. A lot of restrictions on gatherings have also been eased from today in a number of states, but social distancing measures remain in place. We will continue to keep you advised of any significant changes that will affect you. Producing this easy-read resource and keeping it up to date over the last few months has been a huge undertaking and we're grateful that so many people have found it helpful! https://www.emerge.org.au//coronavirus-and-me-simplified-f

03.01.2022 Fantastic breaking news from the UK. Decode ME the largest ever ME/CFS DNA study has announced 3.2m of funding! The funding has come jointly from the Medical Research Council and National Institute for Health Research. The project is led by Principle Investigator Professor Chris Ponting from the University of Edinburgh. Hooray! ... https://www.decodeme.org.uk/largest-me-cfs-dna-study-recei/

02.01.2022 Last week, the UK’s National Institute for Health and Care Excellence (NICE) published the long-awaited draft of its new ME/CFS clinical guidelines. We’ve taken some time to review the guidelines and we think they represent a significant improvement in the care of ME/CFS patients in the UK and - thankfully - reflect the shift in attitude towards ME/CFS that is increasingly evident in many countries around the world. In particular, we note that the new guidelines have moved ...away from Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT), and also reject treatments based on the theory of deconditioning. We’re pleased that the committee’s recommendations reflect both the scientific evidence and patients’ experience of these treatments. While Australia doesn’t follow the NICE guidelines we are very confident that they will have a positive impact here by steering the conversation and helping in the process as Australia develops our own new clinical guidelines. Read more about the new guidelines and find out you can comment on the draft on our website here: https://www.emerge.org.au//new-mecfs-clinical-guidelines-f

02.01.2022 Congratulations to Paul Gooley and his team at Bio21 Molecular Science and Biotechnology Institute for their $784,000 grant from NHMRC’s ME/CFS Targeted Call for Research! The successful project, ‘Exploring the role of nitrogen metabolism, energy metabolism and mitochondrial function in the pathophysiological mechanisms of paediatric ME/CFS’, will test the hypothesis that ME/CFS results from toxic by-products of energy production in cells. We’re thrilled to see that a proje...ct focussing on young people with ME/CFS received funding! This will help address a serious gap in ME/CFS research, and we look forward to supporting this project! https://www.bio21.unimelb.edu.au/nhmrc-funds-bio21-research

02.01.2022 Hold onto your hats for the absolute most adorable #MECFSchallenge we've seen so far. This is Pippa and she is standing up for people with ME/CFS (in a wiggles outfit)

02.01.2022 ABC RN Life Matters with Hilary Harper will be doing a story about the new ME/CFS research happening at Deakin University THIS MORNING at 9.25am. Hilary will be having a chat with Professor Ken Walder from Deakin University, Emerge Australia CEO Dr Heidi Nicholl and the wonderful Sue Collins who lives with ME/CFS and has been a leading light in the Geelong support group for many years. You can tune in live here (and I'm sure there will be a recorded version which we'll link... to afterwards). https://www.abc.net.au/radionational/live/

01.01.2022 We are super excited to share the news that Solve M.E. in the US are now launching their much anticipated You+M.E. Registry! The Registry will facilitate future research in ME/CFS by collecting demographic, health, and patient reported symptom data from both ME/CFS patients and healthy volunteers through an online portal and the You+M.E. smartphone app. Here at the Australian ME/CFS Biobank we are working hard to get the Aussie branch of the You+ME Registry up and r...unning for Australian users and we WANT YOUR DATA! We expect to launch within the next month so please bear with us and expect our own announcement in the next few weeks! You can learn more about the You+M.E. Registry here (but please don't sign up if you're Australian!): https://youandmeregistry.com/ The Biobank team are happy to answer any questions below In the meantime, you can sign up for Biobank update emails via the following link: http://eepurl.com/gzzB4n

01.01.2022 It's so great to see donations coming through each month from Ritchies IGA - just from our supporters doing their regular grocery shopping! If you have a Ritchies IGA nearby please think about signing up for a Ritchies Card to support Emerge Australia. There are stores right across VIC, NSW and QLD and it’s free to join, just follow these three simple steps. 1 Download the Ritchies Card app from the App Store or Google Play and complete the registration process... 2 Nominate Emerge Australia in the app on the Community page 3 Use the app each time you shop and a % of your spend will be donated to Emerge Australia You’ll also be eligible for member only specials through the app as well as monthly promotions and Collect and Win, so get your friends and family to join up and help raise funds too! By shopping at a Ritchies Supermarket, you’ll be supporting Australians with ME/CFS. To date Ritchies IGA have donated over $8,000 to Emerge Australia, with thanks to the help of our supporters. Heartfelt thanks to everyone who signed up already and chosen Emerge Australia