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Media ​ Welcome to the Department of Health's special presentation on Long COVID: Real Lived Experiences. In these videos, we will delve into the profound impact that Long COVID has had on individuals and communities in Australia. ​ For more advice on what you can do to protect yourself and others from COVID, visit: https://go.vic.gov.au/47oP30J ​ Alicia's Long COVID Story "Before Long COVID changed our lives, I was a busy mum of 3 boys, working in a very physical job, social, outgoing & happy. Now, I am mostly bed-ridden, relying on my husband for everything, unable to work & scared of what the future holds. This could happen to you." ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Jordan's Long COVID Story Jordan got COVID in January 2022, and his life hasn’t been the same since. He shares with us how his life has been impacted by Long COVID and urges Victorians to stay ahead of the virus. ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Miquette's Long COVID Story "My children are impacted mentally by it as well, because they're watching their mother just... fade away. I don’t escape it.” Miquette shares her journey with Long COVID and wants Victorians to know that anyone can get it. The best way to not get long COVID, is to not get COVID. ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ "In this special presentation, 'See Us, Hear Us, Partner with Us, ' we spotlight the voices of those affected by Long COVID. Alicia and Miquette, like many others here, have been living with the challenges of this condition." ​ Alicia: "We made a conscious choice not to wear masks today. Our hoarse voices are symbolic of the struggles we face with Long COVID. We want to be seen and heard, unfiltered." ​ Miquette: "Absolutely. Our voices may be weakened, but our resolve is strong. We're here to share our stories, to shed light on the realities of living with Long COVID." ​ ​ Media Releases ​ ​ Media release expressing concerns over Queensland Chief Health Officers views on Long COVID. Long COVID Support Australia recognises that Long COVID is a complex and debilitating condition that affects a significant number of individuals worldwide. Today, on International Long COVID Awareness Day, our organisation, along with Australian Long COVID patients, had planned numerous events aimed at raising awareness, fostering hope, and seeking understanding from the broader public and media. Unfortunately, Dr. Gerrard's comments have inadvertently overshadowed these efforts, causing distress and undermining the collective spirit of this important day. Landmarks all over Australia will be lit up in teal on or around 15th March to mark the day. The Long COVID Support Australia Community will be observing the day by taking a selfie of themselves lying down with the hashtag #WakeUpToLongCovid to highlight awareness and the need for the government to implement their own recommendations following a Parliamentary Inquiry into Long COVID and Repeated Infections. ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Long COVID Support Australia's response to the Inquiry into Long COVID and Repeated COVID Infections The Committee published its report Sick and tired: Casting a long shadow. Please see our Media Release attached below in response. ​ ​ ​ ​ ​ Press Release 16th February 2024 LC Awareness Day Media Release 5th Mar 2024.pdf Media release in response to Chief Health Officer 15th March 2024

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

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.”

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. 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. This website contains links to external websites. Such links do not constitute an endorsement or recommendation by Long COVID Support Australia to either the organisation controlling the external website, or the information contained on external websites. ​ 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 Long COVID Support Australia 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 . ​

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.”

Contact us Please feel free to contact us if you have any questions or feedback about Long COVID Support. ​ We will aim to respond to you within 24 hours. Why are you contacting us? Choose an option First Name Last Name Email Phone Message Send Thanks for submitting! We will be in contact with you shortly.

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!

Welcome! Take part in the community Start your own post or take part in an existing conversation. Visit community Members Area Make edits to your own profile or follow other members who you are interested in hearing from.

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

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 admin@longcovidsupportaustralia.com.au 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.