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About us Originally, Long COVID Support Australia was operated by the Health Issues Centre , but during its partnering in developing this website it was found that the long-term support for this website should sit with people with lived experience as such, this website sits within the governance and oversight of two Long Covid sufferers, Alicia Newnham and Miquette Abercrombie. This site is open to all those in the community who wish to participate and commit to abiding by our Community Guidelines . Long COVID Support Australia has been established for the principal purpose of creating a mutually supportive community for people living with Long COVID and their carers, families and supporters. It also seeks to provide authoritative information on the latest medical treatments, research findings and available support services for people with Long COVID. Enquiries regarding participation in the Group or any content published should be submitted through our Contact us form . ​ ​ ​ ​

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

What is Long COVID? According to the World Health Organisation, Long COVID is most commonly characterised by symptoms which may include: ​ fatigue, shortness of breath and cognitive dysfunction (brain fog). ​​ However, WHO acknowledges that more than 200 symptoms have actually been reported as indicative of Long COVID. These symptoms may include: ​ chest pain, trouble with speech, anxiety or depression, muscle aches, fever, breathlessness, cough, memory and concentration, loss of smell and/or loss of taste. The WHO defines Long COVID as 'the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation'. Because Long COVID is a recently diagnosed condition, its maximum duration is still unknown. However, it is known that the condition can last for as little as three months and as long as nine months or more. ​ The WHO makes the following recommendations to protect yourself and others from developing Long COVID. ​ Take up offers of COVID-19 vaccines and boosters Wear well-fitted masks when in public Clean hands regularly Ensure indoor spaces are well ventilated ​ Next Steps ​ If you have Long COVID, or are supporting someone that does, we have a few options that might help you: ​ Read what people are saying in our online community Join the online community Access resources Read about latest Long COVID research Read about latest Long COVID news

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

Cyndi – "the lonely business of Long COVID" Cyndi contracted COVID-19 in 2020. After a brief admission to hospital for breathing issues, she returned to her exercise and work routine. Despite this return to ‘normal,’ Cyndi “did not recover” – she describes lingering symptoms of fatigue, painful ribs and muscles and poor mental acuity after exertion of any kind: physical, mental or emotional. In March 2021, Cyndi’s doctor advised her to cease work for a month to rest before returning to a reduced work schedule. Thankfully, Cyndi’s workplace at the time was accommodating to this change and after an initial rejection, her income protection claim was approved by her insurer. It has now been 27 months since her initial infection and Cyndi is still experiencing symptoms and unable to work full time. When initially contracting COVID-19, Cyndi states that she was “very scared” and despite the wonderful staff at the hospital, her experience navigating the hospital system provoked both anxiety and uncertainty. In the aftermath of her hospital stay, Cyndi believes the advice that she received to get back into exercise in fact hindered her recovery and contributed to her Long COVID condition. She also claims that there is a lack of consistency in terms of both general knowledge and treatment options provided by medical professionals in relation to Long COVID, particularly given it is a relatively new phenomenon. ​ In terms of work and her financial state, Cyndi’s health costs have increased, and her income has decreased. She is currently seeking work but due to the time constraints around when she is physically able to work, she is finding this difficult. Ultimately, Cyndi states that “having long COVID is a lonely business” and that “the worst thing and the biggest impact is the uncertainty”.

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 48 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 4 Follow New Posts Alex Sep 19 Living with POTS Q&A I have Long COVID Lots of people with Long COVID have POTS, so I thought this group may be interested in the seminar below... Tue, 19 Nov, 6pm - 7pm AEDT Back by popular demand, join the Australian POTS Foundation's Community Engagement Officer, Claire Clark and exercise physiologist Jennifer Smallridge as they answer what you want to know about living with POTS. Send in your questions ahead of time via email to: admin@potsfoundation.org.au or send them to the Australian POTS Foundation in via Facebook or Instagram and we will get through as many as we can. TICKETS are $20 here: https://events.humanitix.com/living-with-pots-q-and-a?hxchl=amk-eml-hfn&hxref=1-0-0 Like 0 comments 0 linda.x.molloy@gmail.com Sep 19 neurologist I have Long COVID Does anyone see a helpful Neurologist in Perth or Sydney? Like 2 comments 2 Alex Mar 23 Online conference for POTS patients today I have Long COVID The POTS Foundation is holding a conference for medical practitioners and patients today (Friday 22 March). It's online via Zoom, and costs $95. I've looked at the speakers and it's a great opportunity to hear from some specialists that would usually cost a LOT more. The patient part of the conference is from 10am Sydney time (dial in by 9:50am). You can listen to the recordings afterwards for three months. Tickets here https://events.humanitix.com/better-together-consumer-and-scientific-conference Allow yourself a bit of advance time to buy the tickets and download zoom if you don't already have it! Like 3 comments 3 Forum - Frameless

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.”

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Join the discussion Welcome to our online peer support community for those impacted by Long COVID. It has been created to provide a safe space for people with experience with Long COVID to connect, share experiences, provide mutual emotional and practical support, identify treatment options, as well as provide access to reliable resources from trustworthy sources. How does it work? This is an open online community. This means that anybody can browse through the conversations happening in our online community without formally joining. To participate in the conversations you will need to create an account . Once you have done this, you can create your own discussion threads within the forum and contribute to other members' discussions. We want this online community to be an engaging place where people can connect and share about all aspects of their Long COVID journey. That will include the highs, lows and everything in-between. Community members are also encouraged to share feedback about their experiences during Long COVID, including their broad treatment experiences and any insights into how things could be improved. This can help us work with clinicians, researchers, policy makers and service providers who are seeking to better understand the impacts of Long COVID and to help advocate for appropriate health policy and support services. Who can join? This space has been primarily created for anyone affected by Long COVID, either as an individual, as well as carers, family, friends and the broader community. Anyone in Australia and Australian residents living overseas can join, however, to be part of the online community you must be 18 or over and abide by the Community Guidelines. How is this community different? We know that there are some wonderful communities on other platforms that have been created for those affected by Long COVID, which have been founded largely by individuals and teams of volunteers. Our community is a bit different as it has been created as a stand-alone website where people can connect and don’t have to be part of a broader social network. This means that people can be part of the group with some an onymity. The Group is moderated, we highlight stories to ensure a greater understanding about Long COVID in society more broadly, and we work with our community to ensure their experiences are heard by decision-makers. ​ Why not join our community today? Sign up

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.”

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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!