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  • Patient Stories | Long COVID Support

    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

  • Community Guidelines | Long COVID Support

    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! This is a space for you to connect with others and feel supported. You could post about: Your journey so far Things that have helped you Questions about where others have found support or how they are managing What shouldn’t you post? Negative comments that are directed towards other members. The community is a positive space to keep everyone connected. Please remember to be kind – everyone here is having a hard time. Criticism of individual health professionals or services where they can be identified. Comments attempting to force your opinion onto others. Promotion of products or services from which you profit. Anti-vax material will not be accepted. Although questions, concerns and reasonable discussion are okay (at the discretion of the admins). A forum member can post about how they were affected by a vaccine, but they cannot post generalised statements about vaccines which they heard or read. We really want this to be a helpful and compassionate place for sick people! Members with research, media or commercial interests Media are not permitted to join the forum. However, you may send us an email at with a couple of sentences about your interest and inviting members to contact you by providing your phone number and email address. At the admin's discretion, we will post relevant information in the forum on your behalf. ​ Any commercial or professional advice from anyone except from our facilitators will not be allowed. This includes legal, financial or medical advice, SPAM activity or posts demonstrating commercial interests. Our facilitators will be clearly marked as Admin or Moderator in the Online Community. Diagnostic or medical treatment advice based on unqualified individual experience or hearsay will not be accepted for publication. Please see above for a detailed explanation as to what content will be permitted. ​ What happens if I breach the guidelines? When taking part in our community, we ask that all posts and comments follow our guidelines. Posts or comments may be removed if they don’t conform with those guidelines. We understand that members might unintentionally break the rules and administrators will exercise the benefit of the doubt in determining whether a deliberate breach of guidelines has occurred. In such circumstances we will offer a suggestion as to how you could rephrase your post to conform with guidelines. ​ Reporting As a member of the community you have the right to feel safe. If there is something which you feel breaches these guidelines or doesn’t feel right, please contact us here , explain what has happened as best you can and include links to the specific thread/s, and we will action it as soon as we can. Removal of members Repeated or serious breaches of the guidelines may result in removal from the community at ALCC's discretion. If you have any questions about these guidelines, please contact us here . Forum account restrictions Individuals must only have one account. If you are removed from the forum you cannot sign up to a new one. This forum is intended for people who are over 18 and living in Australia or an Australian resident living overseas. Your responsibilities You are solely responsible for any content or material that you post or upload on the Online Community, or which is posted by another person using your username or password. You acknowledge and agree that we may contact you via the email address you have provided for safety and engagement reasons. By submitting content or materials to the Online Community, you agree that you have read, understood and agree to abide by these Guidelines and to ALCC exercising all rights in respect of such content or materials as are set out in these Terms and Conditions. ​ Intellectual property ALCC may, at its discretion, access, monitor and review all content or material which you submit to the Forums. By posting content on the Online Community, you grant to ALCC a perpetual, royalty-free, fee-free, non-exclusive, irrevocable, worldwide license (with a right to sub-license to our authorised nominees) to use, modify, copy, distribute, transmit, reproduce, publish, display and broadcast any of that material on this site as well as in any promotional or communication activities of ALCC conducted in Australia or overseas. ​ Confidentiality and privacy We will take reasonable steps to ensure the security and confidentiality of material which you post or upload onto the Online Community. However, we cannot guarantee that such material will be protected against any loss, damage, alteration or misuse. ​ Privacy Policy ALCC supports the National Privacy Principles. We are committed to protecting website visitors and the privacy of our members. We respect the confidentiality of personal details and do not provide our mailing list to outside organisations. We will only use personal information for the purpose it was originally collected, unless required by law or for member safety. If you require more information about our privacy policy or would like to discuss your privacy concerns, please fill in the Contact us form. Updates to Community Guidelines and Terms and Conditions We may amend the Terms and Conditions and these Community Guidelines at any time, which we will inform you about by posting them on the site. Please check regularly for amendments. Your continued use of the site indicates that you agree to the most recent Terms and Conditions and Community Guidelines.

  • Your Community | Long COVID Support

    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 4 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 42 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 ramsnb Sep 01 I have Long COVID I have Long COVID Hi everone, I have been suffering with Long COVID since february and have only just been diagnosed with it in late August. I had so many scand and so many blood tests until i saw a specialis at St Vincents hospital that did a COVID serology blood test and a number of other blood tests to work it all out. I have had so many symptoms such as, anxiety, depression, PTSD,cognitive issues, pericarditis, lung scaring, nerve pain, bone pain, muscle pain and massive problems with digestive issues. Sadly no meds can help me aside from some antihistamines i was prescribed from the long covid clinic which did help a little. I have made massive changes to my diet eating only fish, fruit and veg now and taking a number of supplemnts to help boost my immune system to try and fight this off before it causes long lasting damage to my organs. Long COVID is horrible and i would not wish it upon anyone! i was running 10k a day before i got this dreaded disease and now i struggle with everything and i just hope that i will eventually get better and return to somewhat of a normal life at some point. Like 1 9 comments 9 Jen Aug 29 Vasculitis I have Long COVID Anyone else have Urticaria and Vasculitis with associated gut problems? Like 0 comments 0 Ken Jul 27 Cyclical long Covid? I am a carer or supporter Hi, my son seems to have long Covid. About 18 months ago he got a moderate dose of Covid and recovered fine. Since then I'd say on average he has had a reoccurrence of all those symptoms about every month. In particular headaches, fatigue and inner ear pressure. He takes 2 to 4 days to recover generally. The GP seems to think it probably isn't long Covid which to me is inexplicable. Is this a familiar situation for anyone else out there? Thanks Ken Like 0 comments 0 Forum - Frameless

  • News | Long COVID Support

    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

  • Members | Long COVID Support

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  • Long COVID Support | Join the community

    Support and connection for people affected by Long COVID Long COVID Support ​ ​ The Long COVID Support community exists for people to share experiences, info rmation and resources with others living with Long COVID symptoms, as well as their c arers, 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! Join the community Chat with others about Long COVID, support and connect with each other. Join Take a look Our Services

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  • Research | Long COVID Support

    Research opportunities Signs and symptoms Treatment options Underlying causes Facts and statistics Exercise Financial impact Vaccination Children Research New research is constantly being released about Long COVID, as well as opportunities for people to take part in research to increase understanding of the condition. We will be updating this page regularly with the latest research and opportunities to take part in research. ​ We have information about a range of topics linked with Long COVID including: Research opportunities Signs and symptoms Treatment options Underlying causes Facts and statistics Exercise Financial impact Vaccination Children Research opportunities – currently open New Parliamentary Inquiry into Long COVID and Repeated COVID Infections The House of Representatives health committee’s new parliamentary inquiry will examine the health, economic and educational impacts of Long COVID and repeated infections. The inquiry’s chair, Labor MP Mike Freelander, has stated that long COVID is emerging as a significant issue and that the current understanding is limited. Terms of reference: The patient experience in Australia of Long COVID and/or repeated COVID infections, particularly diagnosis and treatment; The experience of healthcare services providers supporting patients with Long COVID and/or repeated COVID infections; Research into the potential and known effects, causes, risk factors, prevalence, management and treatment of Long COVID and/or repeated COVID infections in Australia; The health, social, educational and economic impacts in Australia on individuals who develop Long COVID and/or have repeated COVID infections, their families, and the broader community, including for groups that face a greater risk of serious illness due to factors such as age, existing health conditions, disability and background; The impact of Long COVID and/or repeated COVID infections on Australia’s overall health system, particularly in relation to deferred treatment, reduced health screening, postponed elective surgery, and increased risk of various conditions including cardiovascular, neurological and immunological conditions in the general population; and Best practice responses regarding the prevention, diagnosis and treatment of Long COVID and/or repeated COVID infections, both in Australia and internationally. The inquiry is inviting submissions from those interested by November 18th 2023. The ADAPT Study The St Vincent’s ADAPT study is recruiting volunteers who have tested positive for COVID-19 since January 2022. The ADAPT study is an ongoing observational cohort study focusing on symptomology post COVID-19 infection. Participation in this study would initially involve a screening visit to determine eligibility and to provide consent. Once eligible, participants would be required to attend 3–4 follow-up visits over a period of 1 year. Assessments will include symptom review, blood samples and health and wellbeing questionnaires. More information can be found here . John Hopkins COVID Long Study ​ The Johns Hopkins Bloomberg School of Public Health is conducting research on how the COVID-19 pandemic has impacted people’s lives, especially related to symptoms and recovery. If you would like to participate in this one-time, 20-minute survey please follow this link . Melbourne University Research Melbourne University researchers are planning on conducting a prospective study of Long COVID with the use of T MRI brain scans as part of a collaborative research program. For more information please read here or email . PERCEIVE (COVID heart) study The Baker Institute in Melbourne is conducting the Persistent cardiovascular effects of COVID-19 viral infection (PERCEIVE) study aimed at understanding whether COVID-19 causes damages to the heart and impacts functional capacity. To be eligible for this study, you must be aged over 45 years and have had a COVID-19 infection. For more information, please follow this link . Statin Treatment for COVID-19 to Optimise Neurological Recovery (STRONGER) STRONGER is an international clinical trial aimed at determining whether 40mg of a statin drug (statin drugs are typically prescribed to those with elevated cholesterol to improve cardiovascular health and reduce the risk of a heart attack or stroke), administered daily can improve neuro-cognitive function in adults with Long COVID neurological symptoms. The study is a collaboration between The George Institute for Global Health, UNSW Sydney, Monash University’s School of Public Health, University of Sydney and Sydney Local Health District. This trial is currently in its third phase and is predicted to complete in June 2023. For more information, please follow this link . Development of a 2-stage nutraceutical treatment protocol for adults with long-COVID-19 syndrome, exploring underlying pathophysiology and treatment effectiveness This study ( trial ID: ACTRN12622001204730) is looking at the underlying pathophysiology of Long COVID followed by a staged treatment approach. Based on a trial status update on 02/12/23, this study is currently recruiting Long COVID patients in Australia. To be eligible, you must be over the age of 20, have had COVID-19 evident by PCR or RAT more than 3 months ago, persistent symptoms for longer than 3 months and have been referred to and assessed by trial doctor as suitable for the trial. The primary contact person for further information and recruitment is A/Prof Karin Ried at the National Institute of Integrative Medicine (phone +61 9912 9545 / The SA Long COVID study: A clinical registry defining the care needs for patients with Post-COVID-19 conditions in South Australia This study ( trial ID: ACTRN12622000718741) is looking at how COVID-19 has affected people including their fitness, health and quality of life after their initial infection. Based on a trial status update on 14/03/23, this study is currently recruiting Long COVID patients in South Australia. To be eligible, you must be over the age of 18, have had COVID-19 evident by nucleic acid testing or rapid-antigen testing (RAT) and be at least 3 months from the onset of proven COVID-19 with symptoms that have persisted for 2 months with no other alternative diagnosis. Symptoms must be known or suspected to be associated with Long COVID. The primary contact person for further information and recruitment is Dr Angela Molga at the Department of Clinical Pharmacology (phone +61 08 70742701 / . Signs and symptoms Additional Long COVID symptoms to add to the ever-growing list The symptoms associated with Long COVID seem to be increasing in number, reflecting both breadth and diversity in the presentation of this condition. A recent study has announced that hair loss, reduced libido, bowel incontinence and erectile dysfunction have been reported among Long COVID patients. Long COVID reshapes the brain, science explains Science has confirmed that COVID-19 triggers an inflammatory response and alters the nervous system for up to two years after initial infection. A UK based neuroimaging study has showed that even mild cases of COVID-19 can lead to a reduction in overall brain size, with specific effects seen in the frontal cortex and limbic system. These brain changes help to explain why Long COVID patients tend to suffer from mental health complaints and neurological deficits like depression and brain fog. Researchers are conducting vigorous testing to assess the cause of these brain changes. One hypothesis is that of a loss of integrity of the brain’s protective layer, the blood-brain-barrier, leading to the process of swelling and brain injury. Another hypothesis is related to infection of the cells that essentially ‘hold the brain together’. When these astroglia cells are damaged, their ability to support and nourish the brains neurons is reduced. Cardiovascular manifestations of Long COVID According to authors of a recently published review on Long COVID, “continued systemic and myocardial inflammation appears to be the main pathology for cardiac involvement in Long COVID”. Symptoms specific to the cardiovascular injury include palpitations, chest pain, breathlessness and postural dizziness with or without syncope (temporary loss of consciousness caused by fall in blood pressure). The authors state that further research is needed to devise a diagnostic tool “that can use a combination of clinical symptoms, biomarkers, ECG and imaging to define cardiac involvement in long COVID”. Long COVID and brain health Among the long-term effects of COVID-19 infection, experts say that brain health is particularly at risk. Research has found that symptoms of Long COVID can mimic the symptoms that are displayed after a stroke. Further, there are a few single-case reports confirming cases of clinical Parkinsonism developing after a COVID-19 infection. Long-term gastrointestinal outcomes of COVID-19 A recent study published in the journal Nature Communications has shown that patients diagnosed with COVID-19 were more likely to experience gastrointestinal disorders a year after their initial infection compared to people who were not infected. The gastrointestinal disorders span across several disease categories which include motility disorders (abnormal muscle and nerve contractions that cause spasms or lack of motion along the gastrointestinal tract), acid related disorders (dyspepsia, gastroesophageal reflux disease – GERD, and peptic ulcer disease – PUD), functional intestinal disorders, acute pancreatitis, hepatic and biliary disease. The most common diagnoses were acid-related disorders such as GERB and PUD. Similar brain structure changes among Long COVID and ME/CFS patients Similar changes in brain structure have been identified among people who have Long COVID and encephalomyelitis/chronic fatigue syndrome (ME/CFS). The brain of 28 adults were compared by Griffith University scientists using a high-powered magnetic resonance imaging scanner (MRI). The findings show that the brainstem was significantly larger among the Long COVID patients and those with ME/CFE compared to those who had never been diagnosed with either condition. The researchers state that "the symptom overlap between ME/CFS and Long COVID patients is consistent with our current findings of similar abnormalities in the brainstem". Further people are currently being recruited to continue the investigation into the findings of this pilot study. Treatment options Current clinical trials Although treatment options are still limited, an article in the journal Nature has stated that 26 randomised controlled trials are currently underway, testing for potential therapies that may be helpful in Long COVID treatment. Based on the lack of clarity around the key causes and symptoms of the condition, researchers are trialling drugs that have been repurposed for other conditions. Many of the drugs that are being explored are those that target the inflammatory response and blood clotting. Interestingly however, cortisol replacement therapy and anti-depressant drugs are also being proposed as possible treatment options, specifically employed to target the cognitive-based symptoms such as brain fog and fatigue. Long COVID could be diagnosed through the blood, a study reveals A study that was recently been published in the Molecular Medicine Journal has shed light on the possible development of a blood test to aid the process of diagnosing Long COVID. The London based study found that Long COVID patients had 14 elevated biomarkers which the researchers have theorised is due to the blood vessels not only trying to heal themselves, but also reaching out to try to find healthy tissue. The researchers state that this new discovery could also lead to new treatments and medications for Long COVID patients. Anti-viral treatment may reduce risk of Long COVID A study has been conducted to examine the effects of the antiviral Paxlovid on the development of Long COVID. The participants within the study were patients who formed part of the US Veterans Health Administration system and who experienced a COVID-19 infection between March 1 and June 30, 2022. Based on the findings, the researchers state that treatment with Paxlovid during the acute phase of COVID-19 infection reduces the risk of post-acute adverse health outcomes. These outcomes were displayed regardless of vaccination status and whether the participants had been previously infected with COVID-19. Although promising, it is important to note that this study is yet to be peer reviewed and therefore, should not be used to guide clinical practice. L-arginine with vitamin C as a potential supplement for Long COVID patients An article has been published in the journal Nature that has examined the effects of L-arginine and vitamin C supplementation on the alleviation of Long COVID symptoms. Findings from the study showed that the l-arginine plus vitamin C supplementation improved walking performance, muscle strength, and endothelial function, reduced fatigue and restored serum l-arginine concentrations in adults with long COVID. The authors of the article state that "while no conclusive evidence exists on the beneficial effects of L-arginine supplementation on human performance, our findings indicate that a short course of L-arginine supplementation plus vitamin C supplementation may positively impact exercise capacity of adults with long COVID'' Living systematic review of therapeutic options for post-covid-19 condition A systemic review of potential therapeutic options for long COVID has been conducted by the Pan American Health Organisation (PAHO). The review includes all the identified clinical forms, symptoms and manifestations of long COVID for which an intervention has been assessed in a least one randomised controlled trial (RCT). For example, the review has identified 12 potential therapeutic options (including adaptogens, vitamins, enzymes and probiotics) to support fatigue dominant long COVID. To read the full review, click here . A possible treatment option for fatigue dominant long COVID The findings from a recent study demonstrated an association between a 4-week oral administration of a drug (metabolic modulator AXA1125) and significant improvements in documented physical and mental fatigue symptoms among patients with fatigue dominant long COVID. For more information about the study, please read here . Underlying causes We need to understand the underlying causes With the surge in COVID-19 cases and patients developing Long COVID, researchers are emphasising the need to understand the underlying causes. Better insight into the biology of Long COVID has emerged from recent studies that have examined the immune response and why it has gone “haywire ”. Studies have shown that there are a handful of possible explanations. These include antibodies attacking the body’s own proteins, persistent antibodies being produced against the virus’s spike protein, low blood levels of the hormone cortisol and the re-activation of previous virus infections within the herpes virus family such as Epstein-Barr and Varicella-zoster. Gastrointestinal symptoms post-acute COVID-19 syndrome – the role of the microbiome Gastrointestinal symptoms are common among those suffering from Long COVID. A recent survey conducted on 1,783 COVID-19 survivors at six months elicited 749 responses, with 220 patients (29%) self-reporting symptoms of diarrhoea (10%), constipation (11%), abdominal pain (9%), nausea and/or vomiting (7%) and heartburn (16%). Although exact causal factors are still unknown, gut dysbiosis remains as an important part of ongoing research in this field. Long COVID and Auto-immunity Autoimmunity refers to the condition where the immune system, rather than targeting foreign pathogens and infection, turns against its own body leading to a host of unwanted symptoms. Although the research remains unclear, scientists have long suspected that viral infections may be associated with chronic autoimmune disease s and there is evidence to suggest that the symptoms presented in Long COVID may in part, be the result of the activity of autoantibodies – antibodies that attack the immune system. Based on this emerging science, doctors are endeavouring to discover new therapies that control an overactive immune system. Poor mental health prior to COVID-19 infection increases risk of Long COVID A study has found a link between poor mental health prior to contracting COVID-19 and an increased risk of developing Long COVID. The study was based on health data derived from nearly 55,000 US volunteers, most of whom were women. The analysis declared that high levels of psychological distress prior to infection with COVID-19, increased the risk of long-term illness by 32% to 46%. Long COVID linked to the common cold among patients with pre-existing rheumatic disease Based on a study conducted on patients with pre-existing rheumatic disease, researchers now believe that exposure to the common cold, another virus within the coronavirus family, may play a role in the development of Long COVID among some patients, particularly patients affected by arthritis. While this discovery does not necessarily translate to other categories of Long COVID, it may potentially serve as a diagnostic and treatment tool for patients with pre-existing arthritis. Prolonged stress prior to COVID-19 infection increases chances of Long COVID According to a Harvard University study released last month, psychological distress prior to COVID-19 infection increases the likelihood of developing Long COVID. Researchers claim that a possible explanation could be the relationship that prolonged mental distress has with the activation of inflammatory processes and the reprogramming of the immune cells which respond to new threats. Lost connections between nerve cells in the brain may explain cognitive symptoms More research is being conducted to determine what underlying determinants lead to the development of the commonly experienced cognitive symptoms among Long COVID patients. A recent study that looked at the effect of COVID-19 on brain organoids (miniature organs grown from stem cells) found that an excessive number of synapses (the connections between brain cells) were eliminated. This could explain why some people who are affected by Long COVID experience cognitive related symptoms such as brain fog. The link between Long COVID and gastrointestinal health An imbalance of the bacteria within the gastrointestinal tract (medically known as 'dysbiosis') has been associated with poor health outcomes among COVID-19 patients who are supported with a ventilator during their hospital stay. These findings , among other research , has revealed that a disruption of the gut microbiome, otherwise known as the bacteria and other organisms such as fungi and viruses found within the gastrointestinal tract, and importantly a depletion of the bacteria that play a role in the immune system, during COVID-19 infection may provide an explanation behind the increased inflammation experienced by some individuals after infection. Long COVID and vitamin D deficiency A study that has been published in the Journal of Clinical Endocrinology & Metabolism (conducted in Italy) has found that low levels of vitamin D could increase the risk of developing long COVID. This study analysed the vitamin D levels of 100 patients aged between 51–71 who were admitted to hospital for COVID-19. At the six-month mark after their discharge from hospital, the researchers found lower vitamin D levels among the patients with long COVID. Read more here . Facts and statistics Risk of Long COVID accumulates with repeated infection, states Professor Brendan Crabb Burnet Institute Director and CEO, Professor Brendan Crabb AC, has warned that based on recent evidence, the risk of developing Long COVID is increased each time you are infected with the virus. Professor Crabb has told the ABC that “ what’s happening with COVID in Australia is simply not sustainable ” and that it has been estimated that between 100,000 and 500,000 Australians will suffer from Long COVID symptoms. He urges that in addition to continuing to explore treatment options, mask wearing also remains an important public health response. Long COVID susceptibility higher among women Although research is still in its infancy regarding the susceptibility and risk factor profile of Long COVID, studies have found that women are more likely than men to develop the condition. A study that involved 1.3 million people suggested that women were 22% more likely than men to be diagnosed with Long COVID. This has been attributed to a difference in how men and women's immune systems respond to the virus. Long COVID categories As more people are affected by Long COVID, it has become apparent that it can be divided into various categories . ​ 1. The first category of Long COVID includes the combination of organ damage, profound physical debilitation and poor mental health inflicted by severe pneumonia and resultant critical illness. 2. The second category refers to the new onset of recognised medical conditions like heart disease, a stroke, or a blood clot – after a mild COVID-19 infection. 3. A third category is that of respiratory symptoms that last longer than expected but that are not associated with lung damage, critical illness or a new diagnosis like a heart attack or diabetes. Beyond these differing presentations of the condition, for some people affected by Long COVID the condition presents as a chronic illness – a complex of numerous unexplained, potentially debilitating and varied symptoms all of which typically follow a mild acute respiratory infection. Adam Gaffney – a pulmonary and critical-care physician and an assistant professor at Harvard Medical School stated that, "testing apart which kind of Long COVID a person has is important, both to advance our understanding of the illness and to best care for people". Review of Long COVID: major findings, mechanisms and recommendations According to a major review article that has been published in the journal Nature Microbiology , at least 65 million people world-wide are estimated to have Long COVID. The review states that there are likely a multitude of overlapping causes, and the risk factors potentially include female sex, type 2 diabetes, Epstein Barr virus reactivation, the presence of specific autoantibodies, connective tissue disorders, attention deficit hyperactivity disorder (ADHD) and other conditions such as chronic urticaria (medical term for hives) and allergic rhinitis (inflammation of the inside of the nose caused by an allergen). The study states that a higher prevalence of Long COVID has been reported in certain ethnicities including Hispanic and Latino heritage. Socioeconomic risk factors have also been documented which include those with a lower income and the inability to adequality rest in the early weeks after developing COVID-19. The association between a healthy lifestyle and Long COVID A prospective cohort study (a research study that follows over time a group of individuals who are similar but also differ in certain characteristics) of 1981 women examined the association between following certain modifiable risk factors prior to infection with COVID-19 with the risk of developing Long COVID. The modifiable risk factors included maintaining a healthy BMI (body-mass index), being a non-smoker, consuming a healthy diet, moderating alcohol consumption, engaging in regular exercise and having adequate sleep. The findings revealed that adhering to a healthy lifestyle prior infection with COVID-19 was associated with a ‘substantially’ decreased risk of developing Long COVID. Long COVID in Australia – A review of the literature Although research on Long COVID is still in its infancy, a recent review has analysed the available Australian and international literature to understand the scale and impact of Long COVID. The review includes the following: The incidence and prevalence of Long COVID in Australian and internationally; Whether SARS-CoV-2 variants and vaccination modify the risk of developing Long COVID; Demographic, clinical and social determinants of Long COVID outcomes; Outcomes and impact of Long COVID on patients, such as burden of disease, health service use, quality of life and patient experience; and Data deficiencies and research gaps around Long COVID. Beyond the case numbers: Social determinants and contextual factors in patient narratives of recovery from COVID-19 An Australian researcher and occupational therapist conducted 37 narrative interviews with adults approximately six months after they had their COVID-19 infection. The findings of the interviews revealed certain themes that had been described by the participants (also referred to as patients). The themes were related to the following: Recovery trajectories – about a third of the patients (mostly aged under 30) quickly and completely recovered from acute symptoms; Returning to "my normal" – the patients identified as their ultimate recovery destination; and Back to work – the patients emphasised that work is a tangible sign of recovery for many. Exercise Long COVID and exercise: An updated list of recommendations by the WHO The WHO strongly recommend that exertional desaturation and cardiac impairment after COVID-19 should be ruled out prior to the re-establishment of an exercise routine. The WHO states: “rehabilitation that involves an increase in oxygen such as in the case of physical activity, in the presence of exertional desaturation or new cardiac impairment, could precipitate an acute event”. The WHO have recommended rehabilitation of post exertional symptom exacerbation (PESE) should involve education surrounding the importance of quality rest and sleep and skills training on energy conservation techniques such as techniques for activity and energy management or pacing. A symptom-led approach to exercise during Long COVID recovery The UK's National Institute for Health Research has recommended a symptom-led approach to recovery, stating that “the key is to pace yourself by tailoring the volume and intensity of the exercise you do and prioritising rest in between sessions”. They also recommend monitoring symptoms and level of fatigue or post-exertional malaise (chronic symptoms worsening after exertion) during and after exercise to guide amount and intensity. Starting slow with simple movements such as chair-based exercises and once further along in recovery, trying a combination of endurance and strength training, has also been suggested. Financial impact Long COVID and its economic burden Recent statistics have demonstrated that Long COVID keeps 31,000 Australians away from work each day. This equates to 12% of all COVID-19 related absenteeism. This is also being seen across the world where in the US, there are 4 million people out of the workforce due to Long COVID and in the UK, there 2 million people out of work. Treasurer Jim Chalmers has stated that Australia’s “labour market has been absolutely smashed by COVID-19, and Long COVID increasingly”. Vaccination Does vaccination reduce Long COVID risk? According to a study conducted on more than 13 million people, vaccination against COVID-19 reduces the risk of developing Long COVID after infection by only 15%. Another study published in The Lancet has found that those fully vaccinated against COVID-19 who developed a breakthrough infection were 49% less likely than those unvaccinated to report symptoms of Long COVID. In terms of Long COVID symptom improvement post vaccination, a survey found that approximately 40% of respondents with Long COVID documented an improvement in their symptoms after vaccination however another 14% stated that their symptoms had worsened. Overall, vaccines do appear to reduce the symptoms of Long COVID but further evidence is required. Vaccine now deemed effective against the development of Long COVID based on meta-analysis – December 2022 A new meta-analysis conducted on vaccine effectiveness against Long COVID has shown that getting at least one dose of a COVID-19 vaccine (Pfizer, Moderna, AstraZeneca or the Janssen vaccine) decreases the chances of having symptoms beyond three weeks or developing Long COVID. The vaccine has been deemed effective in reducing post-COVID-19 conditions even after having COVID-19. The authors states that “although some patients who previously contracted COVID-19 are hesitant to get vaccinated, our findings can reassure that individuals with prolonged COVID-19 symptoms who have not been vaccinated that they should do so”. Research study finds that vaccination reduces the risk of Long COVID - March 2023 A recent study has demonstrated that compared to vaccinated patients, unvaccinated patients were 7 times more likely to develop Long COVID. Authors of this research paper state that it is imperative to promote vaccination and implement education campaigns to inform the public about the risks and consequences of Long COVID. Children Children developing multisystem inflammatory syndrome post COVID-19 infection – what parents should look out for Paediatric inflammatory multisystem syndrome (PIMS-TS) is a rare condition that has been demonstrated to manifest among children after infection with COVID-19. Statistics have estimated that roughly one in every 2,500 children who contract COVID-19 are affected by the syndrome. This condition begins within 6 weeks after COVID-19 infection and is characterised by an inflammatory response that occurs within several different parts of the body. Signs and symptoms usually include fever (for more than 3 days), vomiting, diarrhoea, abdominal pain, headaches, conjunctivitis, rashes, swollen lymph glands, sore throat and a cough. It has been recommended that if your child has a fever that continues for more than three days in the 2 to 6 weeks after COVID-19 infection, it is best to seek medical advice. Although treatment is available, at this stage, up-to-date vaccination status remains the best form of protection against this syndrome.

  • About us | Long COVID Support

    About us Long COVID Support Australia is an initiative of the Australia Long COVID Community Facebook Support Group (ALCCALCC is a national online peer support community for those living with Long COVID). As such, this website sits within the governance and oversight of Facebook Group administrators. 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 . ​ NOTE: Originally the Long COVID Support group 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. ​ ​

  • Media | Long COVID Support

    Media We welcome the accurate portrayal of Long COVID in the media and the opportunity for people with Long COVID to share their own stories. For media enquiries, including interview requests for community members, please fill in the Contact us form and we will get back to you as quickly as we can. ​ Note: We welcome all media requests, but for the safety of our community we request that you do not directly request interviews in forum. Requests that have not been approved will be removed.

  • Submit your story | Long COVID Support

    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!

  • Website terms and conditions | Long COVID Support

    Website terms and conditions By using this website you are agreeing to abide by our terms and conditions and that that you will use this website in accordance with all applicable local, state, national and international laws, rules and regulations. If you are a member of the ALCC you also agree to follow the Community guidelines . The website and online community are managed by the Australia Long COVID Community Facebook Support Group (ALCC). We may amend the Terms and Conditions and the Community Guidelines at any time by posting them on the site. Please check regularly for amendments. Your continued use of the site indicates that you agree to the most recent Terms and Conditions and Community Guidelines. ​ Website Content We endeavor to provide the most up-to-date information about Long COVID and support options available in the Australian context. The content on the site is not intended to be a substitute for professional medical advice. If you require advice, you should seek the assistance of healthcare professionals or an appropriately qualified person. You should not disregard or delay seeking professional advice because of the information you obtain from this website. To the maximum extent permitted by law, ALCC disclaims all liability for any loss, damage, expense and costs incurred by any person arising out of accessing, downloading, using or relying on any material from this website. This website contains links to external websites. Such links do not constitute an endorsement or recommendation by ALCC to either the organisation controlling the external website, or the information contained on external websites. ALCC does not warrant or accept any legal liability arising from or in connection with the accuracy, reliability, currency or completeness of any material on any linked website. ALCC uses a range of security control measures to protect this website from unauthorised access and prevent material on this website from becoming contaminated with computer viruses, disabling codes, worms or other devices and defects. ALCC accepts no liability for any interference with or damage to a user’s computer system, software or data occurring in connection with or relating to this website or its use. ​ Copyright All material contained on this website is subject to copyright. No part of this website may be reproduced, stored in a retrieval system, communicated or transmitted in any form or by any means without prior written consent, except as permitted under the Australian Copyright Act 1968 (e.g., fair dealing for the purposes of research or study). Printing one copy of a document on this website for the purpose of personal research or study is permitted. ​ If you have any enquiries, please submit a Contact Us form. ​ Privacy ALCC is committed to protecting the privacy of anyone that submits their details through the Long COVID Support Australia website and supporting the National Privacy principles. We respect the confidentiality of personal details and do not provide our mailing list to outside organisations. If you require more information about our Privacy Policy or would like to discuss your privacy concerns, please submit a Contact Us form . ​

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