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Looking for information or support on Long COVID in Australia or want to connect with other people experiencing it? Access free support and resources post COVID Long COVID Support The Long COVID Support community exists for people to share experiences, information and resources with others living with Long COVID symptoms, as well as their carers, families and supporters. Our aim is to connect those affected by Long COVID and to provide up-to-date and authoritative news, as well as the latest developments in medical and scientific research efforts. We believe that the first step towards Long COVID recovery is to belong to a supportive community that understands, empathises and shares your lived experience. We welcome you to join us! International Long COVID Awareness Day March 15th 2026 DETAILS COMING SOON Join the community Chat with others about Long COVID, support and connect with each other. Join Take a look Our Services

What can you expect from our Online Long COVID Support Community and what are the rules for taking part? Check out our Community Guidelines. Community Guidelines The Long COVID Support Online Community is a space for people affected by Long COVID to connect and support each other, share their experiences, stay abreast of latest news and research and to hear about available treatment options and support services. This includes individuals affected by Long COVID as well as family, friends, carers and the broader community. What does membership mean? Membership allows you to get involved in online conversations, either by commenting on threads and comments posted by others, and/or starting your own threads. Please note you must be over 18 to join the online community. Your anonymity We encourage you to consider how much information you share in this space, in relation to your own privacy. When selecting your username, you may use your real name or prefer to choose something that helps give you some anonymity. You may also consider how much identifying information you share in the community. Please be aware that the community is an open, online space where anyone can read the information, stories and advice shared. Who runs the group? The group is managed by the ALCC. To use the Long COVID Support Australia website and Online Community you must accept the website Terms and Conditions and agree to following these Community Guidelines. Keeping the group safe and supportive In order for this community to be inclusive and safe for everyone, please be respectful of each other at all times. We want this space to be a kind and supportive environment for all members. The moderation team will remove any posts, pics or comments that: Are likely to offend others Are obscene, abusive, threatening violence or potentially defamatory Contain potentially harmful or inappropriate advice – including spreading disinformation about COVID / Long COVID Are racist, sexist, homophobic or discriminatory in any way Contain hateful or defamatory remarks about individuals, services or organisations Are acts of trolling (deliberately posting offensive comments to get a reaction) Infringes the copyright or confidentiality of any person or organisation Anti-vax related content (please see below paragraphs for further information) Decisions about appropriateness will be made at the discretion of the community moderators, all decisions are final. How should you get involved? We want you to get as involved as you want to in the group. Create your own posts, comment on other people's posts, respond to people’s questions and give your view! 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How does Long COVID affect people, what are their experiences? Here is a collection of powerful stories from members of our community. Patient Stories We believe that story telling is an important way to help the broader community understand the experiences of people affected by Long COVID. You can also join our community to engage with others experiencing Long COVID. View Community Forum Cyndi – "the lonely business of Long COVID" After a brief admission to hospital, Cyndi returned to her exercise and work routine. Despite this return to ‘normal’, Cyndi is yet to recover. Read her story Gary – his experience with Long COVID Gary's Long COVID experience has involved significant back and neck pain along with an altered sense of taste. Read his story Fleur – coping but only "just" Although Fleur is back to full-time work, her Long COVID symptoms still need to be tended to and managed, particularly after she has overexerted herself. This means she needs to handle her symptoms with rest. Read her story Karen – experiencing the "COVIDcoaster" Prior to Long COVID Karen worked full time, was reasonably fit and active, healthy and double vaccinated. Long COVID dramatically affected her life. She is now on the mend and wants to share her story. Read her story

Fleur describes her current state as “coping but only just – the change that has had to occur to my life because of Long COVID has been ridiculous.” Fleur – coping but only "just" Fleur is still learning how to cope with the congoing challenges posed by Long COVID. Although Fleur is back to full time work, her Long COVID symptoms still need to be tended to and managed, particularly after she has overexerted herself. This means she needs to “handle [her] symptoms with rest the minute that [she] walks in the door every day and then the whole weekend.” Fleur describes her current state as “coping but only just – the change that has had to occur to my life because of Long COVID has been ridiculous”. Long COVID’s effect is not limited to physical symptoms – the financial toll due to taking leave without pay has also been financially challenging and emotionally stressful. Fleur wishes that people who are affected by Long COVID were granted some additional sick leave. “I have to take leave without pay as all my banked sick leave was used up with Long COVID. It makes me cranky because now I have the extra financial stress that leave without pay causes especially with home loans, etc.,” she says. Overall, Fleur describes that “it is a tough life, and I am so much better than what some other people are”. “I hope one day we can get some further support.”

Want to share your Long COVID story to help others and to influence change? Submit your story today. Submit your story We believe that story telling is an important way for those experiencing Long COVID to find connection and feel heard. It is also an opportunity to help the broader community understand the experiences of people affected by Long COVID. If you are ready to share your story please fill in the form below! Please note: We may need to make some edits to your story, any edits we make will be checked with you before publishing. We will let you know when it’s going to be published for the first time. So that we can do this please be very careful when filling in your details below. If you would like to add a photo or video to your story please let us know below and we will be in touch to organise. First Name Email State Last Name Confirm Email Pen Name/Psuedonym – if you would prefer to use one. Your age Your Story I understand that by submitting my story it may be used to promote the Long COVID community and/or improve Long COVID awareness in the community. It may be used on the website, social media, printed and digital publications, presentations, media articles and/or other distributed media. Send Thanks for submitting your story!

Fran describes that she was bed ridden for over 3 weeks then a “couch junky” with constant aches, pains, and spiralling through all the symptoms on and off. Frances When Fran contracted COVID-19 she had pretty much all the symptoms (she was fully immunised). Fran describes that she was bed-ridden for over three weeks then a “couch junky” with constant aches, pains, and spiralling through all the symptoms on and off. Fran states that “I have never been so exhausted ever” and has expressed that this support group has started to empower her to fight to be heard. She struggles with dealing with non-believers and being made to feel like she is lying or being dishonest. Fran finds such a comfort in knowing that others can understand, can know what she’s feeling and can empathise with one another. Fran had a bad experience with doctors that made her feel frustrated and disbelieved. She had to take her daughter with her to explain her symptoms, what she was going through and the worry that her family had watching her so unwell and suffering. Fran states that “every day is a struggle and I never know whether pushing through is the correct treatment or is worth the crash it causes”.

Gary reflects on his experience with Long COVID Gary “Four weeks ago, I first had symptoms of a bad neck ache travelling up my rear skull. I treated this with Panadol, and it seemed to work. However, my lower back became very sore then my left hip was painful enough to prevent using steps (normally). Within a day or so the other hip went on me, and I was only hobbling around. Both my shoulders which have a bit of arthritis became too sore to lift anything above my head. My mouth became horrible, and my taste was shocking also common things like my wife mixing a cup of coffee which smelt repulsive. Maybe things have climaxed as my hips got mostly better and my back is now bearable, but the pain moved into my thighs and calf muscles. Since the onset, I have had high temperatures outside of Panadol dosage which stems the temp, also cold clothes. My diet is shot due to flavour. I did have a piece of toast yesterday coated with syrup which covered my mouth with a nice taste. I had a small meal of rice and chicken stir-fry which is the best meal (yummy) I have had in about two weeks.”

Support and connection for people affected by Long COVID. Exciting news coming soon!

International Long COVID Awareness Day 15th March Posters for Downloading and Sharing Instagram Tiles for Downloading and Sharing* *If you download and share the above tiles, we would appreciate it if you would please give credit by tagging @longcovidsupportaustralia Our Mission Goals 1. Urgently implement all recommendations from the Parliamentary Inquiry into Long COVID and Repeated COVID Infections (Inquiry) People with Long COVID should be classified as a vulnerable group to access to anti-viral medication under the Pharmaceutical Benefit Scheme (PBS) Fund research that will help us (not Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT)) and Nationwide Data Collection Update Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) guidelines to remove recommendations of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) 2. Long COVID training for medical professionals 3. Review Medicare Benefit Scheme (MBS), Pharmaceutical Benefit Scheme (PBS), National Disability Insurance Scheme (NDIS) and Disability Support Pension guidelines to increase accessibility for patients with Long COVID and associated illnesses such as autonomic dysfunction and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 4. Resource telehealth services to meet community needs. Retain Medicare Benefit Scheme (MBS) item number 92422 for specialists to conduct initial consultations via telehealth 5. Open, transparent science based public information campaigns about both COVID and Long COVID Light up Locations on and around 15th March 2024 The day and surrounding days will be marked across Australia by lighting up landmarks in Teal. Why teal? The three colors in the ribbon represent the past, present and future of Long COVID Teal: Hope and Support; Grey: Loss and Grief; Black: Loneliness and Isolation; Heart: Kindness, Care and Compassion. We encourage you to visit the landmarks below, safely take a photo and share it to your social media with our hashtag #WakeUpToLongCovid. New South Wales West Connex, Sydney Morpeth Bridge, Maitland Queensland Sir Hielscher Bridge, Brisbane Brisbane City Council (14/03) Story Bridge (14/03) Wickham Terrace Car Park Architectural wall (14/03) Breakfast Creek Bridge, Newstead (14/03) Townsville City Council Townsville sign Victoria Bridge Wharton Reef Lighthouse George Roberts Bridge Old Magistrates Court House Flinders Square Central Park Boardwalk Little Fletcher Bridge South Australia Adelaide Oval Bridge, Adelaide Parliament House of South Australia, Adelaide South Australian Health and Medical Research Institute, (SAHMRI), Adelaide Western Australia Bell Tower, Perth (16/03) Council House, Perth (16/03) Trafalgar Bridge, Perth (16/03) Perth Station, Perth Parliament House of Western Australia Fountains, Perth WACA Ground, Perth Victoria Bolte Bridge, Melbourne Melbourne Town Hall (17/03) Altona City Theatre, Altona Tasmania Paranaple Convention Centre, Devonport Tasman Bridge, Hobart Australian Capital Territory Telstra Tower, Canberra Symptoms of Long COVID include: Extreme Fatigue | Cognitive Impairment | Joint Pain | Rashes | Orthostatic Intolerance | Heart palpitations | Mood Changes | Hoarse voice | Muscle Pain | Anosmia (loss of smell) | Ageusia (loss of taste) | Shortness of breath | GI difficulties | Headache | Confusion | Sleep Difficulties and 150+ more Mission Goals Poster Brief Message Poster Light up Poster 1203.pdf Light Up Brisbane Light Up Townsville Light Up Victoria Light Up NSW Light Up ACT Light Up SA Light Up WA WHO Quote Short Quote Ribbon Social Media Share Light Up TAS

Experiencing Long COVID and looking for support and connection? Join our free Australian online community today to connect with peers and access resources. To see this working, head to your live site. Categories All Posts My Posts Login / Sign up Long COVID Online Community Welcome! Have a look around and join the discussions. Create New Post Getting started & user guides Get acquainted with the forum and check out our user guides that should help you with any technical issues you may have. subcategory-list-item.views subcategory-list-item.posts 5 Follow I have Long COVID A space for people to connect, share their experiences of Long COVID and support each other subcategory-list-item.views subcategory-list-item.posts 51 Follow I am a carer or supporter A space for people who are supporting or caring for people affected by Long COVID to share and connect. subcategory-list-item.views subcategory-list-item.posts 9 Follow Advocacy Help us advocate on behalf of those with lived experience of Long COVID subcategory-list-item.views subcategory-list-item.posts 5 Follow New Posts Penmack Apr 18 MCAS and POTS I have Long COVID Hi I am approaching my 3 year anniversary, I have officially been diagnosed with MCAS, though my integrative doctor has suspected it for a while. I was listening to a Podcast last week that was discussing MCAS and POTS they also discussed RCCX theory, this theory discusses four key genes—C4, CYP21A2, TNXB, and RP1—the RCCX locus is notable for its high degree of variability, including copy number variations (CNVs) and modular arrangements. The RCCX theory proposes that there are structural and functional variability of the RCCX complex—a gene cluster located on chromosome 6—plays a critical role in influencing susceptibility to various diseases. I have the CYP21A2 (which can cause congential adrenal hyperplasia) gene and TNXB (which is the connective tissue hypermobility area) Like 0 comments 0 Art Apr 17 Dying alone. I have Long COVID Hi if theres anyone still around. I got hit by the weapon mid 22. I lost everything including my family and friends due to them just not understanding or believing. I'm very alone. I still can't believe that my children don't even talk to me anymore. I can't fathom that. I have parosmia and severe vascular issues that the surgeons say I won't survive like a collapsed aorta and vertebral artery. Walkings out thanks to my collapsed aorta. My brain isn't getting decent blood flow and my thalamus is failing. I'm also losing my ability to recognise people and things. I dont have long left and I'd truly appreciate a chat with someone whom understands this he'll those monsters left me in. I'm not schizophrenic or insane and I most certainly do NOT have a psychosis. Hearing that rubbish from medical professionals makes me sick. Anti psychotic medication will not help my symptoms of long covid. I've worked out how to eat something again which has helped a bit with the depression. I eat very cold and well overcooked food Is anybody here? Up for a chat somehow? Like 1 comment 1 amber conn Apr 17 Long COVID Survey Advocacy Hi community, if you would like to contribute to the knowledge base about this condition then consider participating in this survey that forms part of my PHD. I'm closing it in a weeks time. thanks amber, amber.conn@hdr.qut.edu.au https://qsurvey.qut.edu.au/jfe/form/SV_b1NlEOkEKgInYbA Like 0 comments 0 Forum - Frameless

Want to read the latest news about Long COVID all in one place? Check out our curated collection of news stories from across the world. News There is news coming out about Long COVID every day and it can be hard to keep track of the latest news. This page will be updated regularly with articles we generate as well as articles of significance from external news providers. We try to provide links that are openly accessible. The cruelty of Long COVID in the global south The Guardian 14 July 2023 The Guardian interviewed people living with Long COVID in Bolivia, Kenya and India. The interviewees all described their difficulty in gaining their diagnoses and treatments. A Bolivian doctor states, "even if Long COVID seems invisible in poorer countries, it will only add to the daunting burden of chronic diseases that they face". Read more Long COVID: effects on fatigue and quality of life can be comparable to some cancers The Conversation 13 June 2023 A new study has found that fatigue, one of Long COVID's main symptoms, can affect a person's daily functioning more than other significant health conditions such as cancer-related anaemia or severe kidney disease. The study also demonstrated the extent Long COVID patients were able to undertake day-to-day activities, such as simple household chores or caring for other people, was comparable to patients who had had a stroke or who were affected by Parkinson's disease. Read more People with Long COVID continue to experience medical gaslighting The Conversation 23 April 2023 Medical gaslighting occurs when healthcare practitioners dismiss or falsely blame patients for their symptoms. According to research on how patients and their caregivers access information about Long COVID, medical gaslighting is a significant barrier. Read more Should eligibility for COVID-19 antivirals be expanded? ABC News 21 March 2023 According to Professor Mike Toole, associate principal research fellow at the Burnet Institute, eligibility criteria for anti-viral prescription should be changed to reduce the likelihood of developing Long COVID. This sentiment is echoed by University of Melbourne epidemiologist, Nancy Baxter, as she states, “the restrictions on Paxlovid [anti-viral] use are excessive and should be changed prior to our next wave”. Read more Pilot study may determine viability of Long COVID management models RACGP 13 March 2023 Objective data related to COVID-19 infection and Long COVID for decision-makers to reference in order to make long term support plans is scarce. To address this issue, Dr Ken McCroary has been working as the GP lead on the South-Western Sydney PHN COVID Monitoring Project. This pilot study project has been tracking Long COVID symptoms and management, with a focus on practice nurses participating in patient management independent of GP presence. Read more Healing Long COVID: a marathon not a sprint The Lancet 4 March 2023 Nisreen Alwan who has both personal and professional experience with Long COVID, has shared his views on the recently published The Long COVID handbook which was written by expert patient, Gez Medinger and immunology professor Danny Altmann. Within his review of the book, Nisreen states: “The revolutionary Long Covid patient advocacy movement that gave the condition its name and shaped its characterisation has resulted in a body of expert patients, like Medinger, who are extremely effective communicators. As I have strongly argued, people with lived experience should have centre stage in shaping research and service pathways for their health condition.” Read more Long COVID inquiry hears definition of disease means people may miss window for early treatment ABC news 20 February 2023 Long COVID has been widely defined as ongoing symptoms that last three months after the initial COVID-19 infection. According to The Royal Australian College of GPs, “waiting three months for a diagnosis means opportunities for early intervention can be missed”. Read more Chief medical officer promises national plan to tackle Long COVID at inquiry ABC news 17 February 2023 Federal health officials are currently in the process of developing an official strategy for how to manage the increasing cases of Long COVID. Chief Medical Officer, Paul Kelly, has stated that a clearer Long COVID definition is required before moving forward "in order to provide more clarity, as well as more information for health professionals". Read more Federal funding for Long COVID care has expired – where to now? The Age 5 February 2023 Federal and state governments are yet to decide upon a strategy to sustainably support individuals living with Long COVID. The Victorian state government has recently declared that it had been using the Federal funding that had expired late 2022 to pay for the state's Long COVID care. Victorian Premier Daniel Andrews states he will continue to lobby Canberra for further healthcare funding. Read more 1 in 10 people will end up with Long COVID The Age 16 January 2023 According to a recent report that was published in the academic journal Nature Reviews Microbiology , one in 10 people will end up with Long COVID. The Australian infectious disease Professor and CEO of the Burnet Institute, Brendan Crabb, has stated that the report should “prompt a rethink of Australia’s relaxed attitude towards COVID-19". Read more Calls for greater government support for patients living with invisible illnesses like Long COVID ABC News 19 December 2022 Recent statistics have highlighted that a projected half a million people across the country could be living with Long COVID by the end of the year. "The Australian Medical Association is calling for GPs to be given greater support to help patients with chronic and hidden illnesses." Read more Federal funding dries up for Long COVID clinics The Age 24 November 2022 The Victorian Health Department has estimated that more than 1 in 200, or roughly 40,000, Victorians have been affected by severe Long COVID this year. The Victorian Health Department has recently warned that "more funding is required for hospitals and GPs to deal with COVID-related illness”. Read more How Long COVID is affecting young people The Conversation 6 September 2022 Data has shown that 2.7% of people aged 17–24 and 3.6% of those aged 25–34 have symptoms at least four weeks after an infection. As cognitive symptoms such as brain fog and a reduced work output are commonly associated with Long COVID, young people who are establishing their careers may be among those who feel these impacts the most. Read more Supporting a friend or loved one with Long COVID The Conversation 25 October 2022 Long COVID doesn’t just affect the individual with the condition – it can also be hard on their loved ones. Below are four tips on how to best support a friend, family member, or partner struggling with Long COVID: Create a safe space Be flexible Encourage (but don’t force) connections Offer practical help Read more Long COVID's hidden toll in NZ NZ Herald 5 October 2022 Health researchers are "shining crucial new light" on the impacts that Long COVID is posing on the population of New Zealand. Experts have warned it could cast a decades-long shadow beyond the COVID-19 pandemic, with one likening the country's potential healthcare needs to a "flood of Noah-like proportions". Read more Monique Ryan calls for national summit on coronavirus amid Long COVID fears The Guardian 15 September 2022 “Off the back of the success of the jobs and skills summit, I think it would be appropriate and timely to take the same approach to Covid,” Ryan, the member for Kooyong, told Guardian Australia. Dr Ryan has expressed concern over longer-term problems of workplace absenteeism and strain on the health system. Read more Reducing the impact of Long COVID is among the five reasons why young people should get a COVID booster vaccine The Conversation 13 September 2022 Despite its importance and key role in Long COVID prevention, research has shown that compared to those over the age of 70, young adults are less likely to be fully vaccinated. Read more $31.5 million boost for COVID-19 and Long COVID research Australian Department of Health and Aged Care 30 August 2022 The Albanese Government announced financial support for medical researchers to further understand both COVID-19 and the impact of Long COVID. The Medical Research Fund (MRFF) is providing $31.5 million to support 14 research grants. Read more Long-COVID sufferers unable to access disability payments say they need more support ABC News 12 July 2022 Many people like Jayson Cumming have been severely affected by Long COVID. There is limited immediate support or relief for Long COVID sufferers as they wait for research to progress. Some are facing financial stress but are unable to access disability support. Read more A GP's lived experience with Long COVID RACGP 12 July 2023 Dr Fiona Mackintosh shares about her journey shifting from physician to patient as she navigates Long COVID. She discusses her diagnosis, her symptoms, the impact it has had on her daily functioning, her work capacity and her overall experience of recovery. Read more Long COVID could be caused by the virus lingering in the body The Conversation 9 June 2023 Several studies have demonstrated that the COVID-19 virus can remain in the body's tissues months following the initial infection. This delayed clearance of the virus can affect the body in various ways which may include the following: Continued inflammation which can fatigue the immune system Activation of other dormant viruses such as reactivation of Epstein-Barr virus Antibodies that are made to attack the COVID-19 virus could mistakenly attach our own body's tissues or organs Read more Long COVID puts some people at a higher risk of developing heart disease The Conversation 30 March 2023 Research has confirmed that a small subset of Long COVID patients will go on to develop more life-threatening disorders such as cardiovascular disease (includes heart attacks and strokes). Several studies have also stated that there may be hidden pathology which may elevate a person's risk that will only emerge with age. Based on these facts, it is important that people are regularly monitored after their initial COVID-19 infection and that a registry should be established to facilitate research and healthcare for people at risk. Read more Long COVID sufferers in Wales aided by sessions with opera singers The Guardian 17 March 2023 A Welsh National Opera (WNO) project has been established to provide Long COVID patients with the techniques and strategies that are used by performers to support lung function, breath control, circulation and posture. This project, delivered over Zoom, has involved over 100 participants and has proven to be a great success. A participant of this project states, “this is the first positive thing I have done for the last two years”. Read more Long COVID: 3 years in The Lancet 11 March 2023 A recent editorial published in the Lancet has suggested that in the absence of specific treatment options for Long COVID, we should be placing our attention on preventative measures – keeping COVID-19 cases in the low numbers and encouraging vaccination – as well as focusing on patient-centred multidisciplinary care. Read more We got some key things wrong about Long COVID The Conversation 21 February 2023 Below are five aspects of Long COVID that we now know since the beginning of the pandemic: It can take months to recover lung function – and some people never do. COVID-19 infection can increase the risk of or worsen chronic diseases such as stroke, heart disease and diabetes. Long COVID isn’t a single disorder but rather a complex condition that includes impaired immunity, the development of autoantibodies, persistence of the SARS-CoV-2 virus and the presence of micro clots. We need to resource treatment adequately. COVID-19 shouldn’t be dismissed as a psychological problem. Read more Should the antiviral drug be made widely available? The Sydney Morning Herald 20 February 2023 Despite no proven treatments for Long COVID, one drug has demonstrated positive results and could act as a potential treatment. A study (yet to be published in a peer-reviewed journal) has found that by administering the anti-viral drug, Paxlovid to patients with COVID-19, the risk of developing long COVID-19 was reduced by 26 percent. Read more Long COVID causing job losses and homelessness in Australia, inquiry hears The Guardian 17 February 2023 Labor MP Dr Michelle Ananda-Rajah spoke at the inquiry's third public hearing on Friday, stating "I think we're going to probably land on a recommendation that we obviously need national guidelines...and perhaps living guidelines that keep evolving as the data keeps coming in". Read more Can diet change help manage Long COVID symptoms? The Conversation 1 February 2023 According to a recent article, some people affected by Long COVID are adjusting their diets to manage their symptoms. These diets include the anti-inflammatory diet, the low histamine diet and the plant-based diet. Despite the differences across all three, their intentions all seem to lie in reducing inflammatory processes within the body and favourably altering immune function. Although there has been some research in the field of lifestyle change, including nutrition, and its effect on managing Long COVID symptoms, further research is certainly required before specific recommendations can be made. Read more Long COVID stems from milder COVID-19 cases, according to a new research study The Conversation 6 January 2023 A recent study has confirmed that even mild cases of COVID-19 can lead to long-lasting effects on people's health. According to the research findings, up to 90% of people who are living with Long COVID only experienced a mild initial COVID-19 infection. Read more Young artist uses art to make sense of her Long COVID condition BBC News 7 December 2022 A young 17-year-old artist based in the UK has channelled her experience of Long COVID into her artistic expression. The young artist's work has been described as “an exhibition of her art on display at the Island Arts Centre in Lisburn is a window into her world and the canvases explore Long COVID from her unique perspectives”. Read more Long COVID and stigma Independent 23 November 2022 UK based researchers have found that up to 95% of Long COVID suffers have experienced some form of stigma, whilst 76%have reported experiencing it “often” or “always”. Dr Marija Pantelic, a UK lecturer in the field of public health at Brighton and Sussex Medical school has stated that “the stigma attached to Long COVID is harming people living with Long COVID and is likely to leave a devastating mark on our society and health service provision”. Read more Long COVID needs to be recognised by employers and pension schemes The Guardian 2 November 2022 The lifting of COVID-19 restrictions has led to many employers to return to pre-pandemic “presenteeism and management observation”. This approach has resulted in individuals who are affected by Long COVID to feel somewhat left behind. A union rep states, “I’ve seen many people who are falling through the cracks because employers don’t have policies to deal with them”. Read more America's top disease expert says Long COVID is an 'insidious’ public health emergency The Guardian 17 October 2022 Dr Anthony Fauci, America's top infectious disease expert has emphasised the need to avoid complacency and ensure that funding for COVID-19 and Long COVID is continued. Although research is underway, Dr Fauci states, "there are more unanswered questions than there are answered questions" and that "the non-specificity and the vagueness of this is its own worst enemy". Read more Coping with Long COVID: 10 strategies for academics Times higher Education 30 September 2022 The professor in the sociology of architecture at University College London, Kerstin Sailor, has offered 10 pieces of advice for scholars living with the symptoms associated with Long COVID. Her advice ranges from the importance of rest to challenging the ableist culture in academia. Kerstin urges academic institutions to develop more inclusive and collective practices around healthy environments for everyone. Read more A neurologist's quest to solve the mystery of COVID-19's most puzzling complication Chicago Magazine 13 September 2022 Long COVID is now America’s third leading neurological disorder. Neurologist Igor Koralnik understands the severity of this condition and is at the forefront of the quest to better understand Long COVID's effects on the brain. At the end of May 2022, there were 82.5 million COVID-19 survivors in the United States, and 30% of them – about 24.8 million – experienced Long COVID. Read more Long COVID costs the economy $100 million per week Australian Financial Review 9 September 2022 Analysis prepared for the AFR Weekend by Impact Economics and Policy estimates Long COVID is costing the economy $100 million a week in lost economic output. This is based on Treasury’s estimations of the number of days workers are taking in sick leave from Long COVID. Read more Ministerial acknowledgement of Long COVID’s economic impact Press conference transcript – The Treasury 26 August 2022 Political leaders are increasingly becoming aware of Long COVID’s economic impact. Responding to new Treasury data, and speaking of the need to consider Long COVID in an economic and productivity sense. Read more 'Long COVID' presents a major health challenge – how can Australia be prepared? The University of Sydney 30 June 2022 Attention needed to support growing number of Australians with Long COVID. Triple vaccination seems to reduce the chance of long COVID – but we still need to prepare for a jump in cases, write researchers at the University of Sydney. Read more VIDEO: New drug could herald breakthrough in fight against Long COVID ABC News 28 June 2023 A new drug has been developed by Queensland researchers which could be used in the treatment of Long COVID. The drug works by blocking the COVID-19 virus from entering the cell (via the AC2 'door') which protects against re-infections and has also been shown to completely reverse inflammation and organ damage to the lungs. The drug is about to enter clinical trials, which may take a few years before it is available for use by patients. Watch here Australian government pledges $50m for Long COVID research The Guardian 24 April 2023 In response to the Parliamentary Inquiry into Long COVID and repeated COVID-19 infections, the Australian government has pledged a $50 million boost (from the Medical Research Future Fund) for research to be conducted on Long COVID. This will include an establishment of a single COVID-19 database along with a nationally coordinated research program into the condition. Read more Report confirms that up to two-thirds of UK workers with Long COVID faced unfair treatment The Guardian 27 March 2023 According to a recent UK report, as of 2 January 2023, up to 2 million people had reported symptoms of Long COVID. The report warns that failing to accommodate those with Long COVID will create, “new, long-lasting inequalities”. Paul Nowak, the UK Trade Union Congress general secretary has stated that “Workers [in the UK] have been badly let down. Many of these are the key workers who carried us through the pandemic – yet now some are being forced out of their jobs.” Read more Belgium-based researchers are working on evidence based Long COVID guidelines and care pathways WHO 14 March 2023 Researchers from KU Leuven, a research university in Belgium, have been working on developing evidence-based care guidelines that health professionals (GPs, physiotherapists, occupational therapists, psychologists and dieticians) can follow when treating Long COVID patients. The Belgium-based researchers are also developing a care pathway pilot which involves physiotherapists, speech therapists, dieticians, occupational therapists, psychologists and neuropsychologists. Read more Doctors faced with vacuum of information on Long COVID The Guardian 6 March 2023 There is a significant amount of ambiguity surrounding the root causes of Long COVID which is intensified by the challenge of the range of symptoms that are associated. This ambiguity has stunted efforts to advance research. Dr Ezekiel Emanual, a bioethicist at the University of Pennsylvania has stated “the medical field also does not have a clear understanding of Long COVID in part because the National Institutes of Health (NIH) initially focused on its symptoms rather than the addressing the underlying problem”. Read more What we now know about Long COVID, according to experts ABC news 21 February 2023 The respiratory physician, Dr Anthony Byrne, who leads the Long COVID clinic at St Vincent’s Hospital in Sydney, has stated that over the past year, evidence suggests that Long COVID can also affect people who were not hospitalised, who were vaccinated and who are of different ages. He also stated that having an autoimmune condition, elevated levels of stress and experiencing five or more symptoms during initial COVID-19 infection, also increases Long COVID risk. Read more Long COVID study tests using exercise to overcome symptoms ABC news 20 February 2023 The PERCEIVE study, based in Melbourne and Hobart, has been investigating how exercise may improve symptoms in people living with Long COVID. Although still in its pilot form, the study has shown promising results when it comes to helping people who have a reduced capacity for exercise after having COVID-19. Read more RACGP to advocate for more support at Long COVID Inquiry NewsGP 17 February 2023 The latest round of public hearings for The Parliamentary Inquiry into Long COVID and repeated COVID infections has recently begun and RACGP is set to present their submission. Professor Mark Morgan, the Chair of RACGP Expert Committee – Quality Care, has stated that their submission will include a push for more clinical and professional support for GPs. Read more Does vaccination reduce Long COVID risk? RACGP 20 January 2023 Findings based on a US cohort study of 1832 adults has suggested that people who are unvaccinated are at an increased risk of ongoing COVID-19 symptoms lasting 28 days or more after initial infection. Dr Ken McCroary, a member of the RACGP Expert Committee – Quality Care and lead GP on the college’s south-west Sydney Long COVID working group has stated, “there’s no question that now, whether you get access to [antiviral] medications or not, if you’re not vaccinated, your outcomes are always going to be statistically worse”. Read more Supporting a child with Long COVID The Conversation 3 January 2023 Although children and young people’s experiences of Long COVID will present differently and will therefore require specific needs, parents of Long COVID sufferers have offered a collection of tips that may be helpful starting points. They are as follows: Believe your child Resting is important Seek support at school Acknowledge mental health Consider non-medical treatments Seek information and support Read more ‘Visible’ – the new Long COVID app The Guardian 29 November 2022 An app called ‘Visible’ , has recently been created by a team of people with lived experience of ‘invisible illness’, including Long COVID. This app has been designed to aid chronic disease sufferers to track their symptoms, and therefore, help manage the process of both collecting data and analysing how their symptoms change over time. Co-founder and CEO of Visible hopes the app will help to shine light on “invisible” illnesses. Read more Long COVID clinics wait time up to 11 months The Age 10 November 2022 Long COVID clinics within Victoria now have a wait time of up to 11 months, with one clinic based at the Austin Hospital in Heidelberg closing its doors permanently due to a lack of funding. The co-lead of the Long COVID clinic at St Vincent's Hospital in Sydney, Professor Steven has stated "we have been inundated – because of limited resources". Read more Lung Foundation Australia Survey hints at increased Long COVID burden News GP 1 November 2022 A report that was conducted by the Lung Foundation Australia has confirmed that nearly half of the 2200 people surveyed have declared symptoms more than four weeks after initial COVID-19 infection – this is a much higher rate than previously thought. The report also states that support for those with ongoing symptoms is “lacking”. A respiratory expert and Lung Foundation Australia Board member claims “there are significant disparities and challenges across Australia that need to be addressed if we are to ensure equitable healthcare for all”. Read more WHO Chief urges immediate action to tackle Long Covid The Guardian 12 October 2022 The head of the WHO has recently stated: “On behalf of the scientific community, health workers and the patients with Long COVID WHO has worked with, I urge all leaders to seriously ramp up support so that we can minimise the suffering and improve the health of those affected so they can return to living their fullest lives." Read more PM Albanese lays out another $1.4 billion for pandemic health The Age 18 September 2022 Healthcare providers and aged care homes are receiving additional funding. Although a large proportion of the budget will be allocated to the Aged Care Support Program, smaller components of the package include $48 million to extend respiratory clinics offered by GPs, $5 million for telehealth items to prescribe antiviral medicine and $5.5 million in additional rebates for face-to-face GP visits. Read more Long COVID declared a key focus area by the WHO ABC 15 September 2022 World Health Organization (WHO) director-general Tedros Adhanom Ghebreyesus has said world leaders needed to act on six key focus areas to end COVID, which was officially declared a Public Health Emergency of International Concern on 20 March 2020. Dr Tedros identified Long COVID as the second of these key focus areas: “Clinical care – planning for surges and treating Long COVID”. Read more COVID-19 and National Immunisation Programme research projects Manatu Hauora Ministry of Health 6 September 2022 The Ministry of Health have provided funding to researchers across New Zealand to undertake research examining the ongoing and long-term impacts of COVID-19. There are currently 23 projects that have been funded with a few specifically targeted at Long COVID research. Read more Immune signature of Long COVID becoming clearer – Health with Dr Norman Swan ABC RN 15 August 2022 As COVID-19 continues to spread, elements of the disease are becoming better understood from research and data. This past week, all sorts of new studies have come out about the virus, including that the immune signature of long COVID may be becoming clearer. Listen here How are doctors unravelling the mystery of Long COVID? The Age 1 May 2022 They call them long-haulers – people still suffering symptoms long after a bout of COVID. But what is the condition, exactly? Doctors expect the answer will change our understanding of immunity forever. Read more

Looking for free resources to support you in your Long COVID recovery? This list is updated regularly with trustworthy resources as new information is released. Resources In addition to seeking care from your GP, below you will find resources that may be helpful throughout your Long COVID recovery. Geelong Long COVID Clinic Victoria's first community based Long COVID Clinic State Government of Victoria – Coronavirus website Long COVID – Understanding long-term symptoms and effects of COVID-19 Centre for Culture, Ethnicity and Health Long COVID – translated fact sheet and audio recordings In-language videos about Long COVID Long COVID HELP website The Victorian Rehabilitation Centre by Healthscope The Long COVID Rehabilitation program now available at Glen Waverly VĀSĀ Consultancy In-language Long COVID resources for Pasefika communities in Victoria The Australian Government Department of Health and Aged Care BECOVIDSAFE – Long COVID quick fact sheet, listed support options and state clinics RACGP Patient resource: Advice on managing post-COVID-19 symptoms at home including a symptom checker National COVID-19 Clinical Evidence Taskforce Australian Guidelines for the clinical care of people with COVID-19: Care after COVID-19 flowchart WHO Clinical management of COVID-19 patients: Living guideline The BMJ Long COVID – A guide for primary care infographic Long COVID NHS England Recovering from COVID-19 leaflet The Long COVID Handbook by Professor Danny Altmann and expert patient Gez Medinger This book provides information and advice related to Long COVID and its management Visible – a free app The activity tracking platform for Long COVID and ME/CFS Your Community Health Centre: PANCH 300 Bell St, Preston . The 6 week program is for people with confirmed Long COVID. will give you tips managing COVID symptoms and connect who may be in a similar situation. Link Long COVID Group Flyer FINAL March 2024 Brimbank.pdf