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

To see this working, head to your live site. Categories All Posts My Posts Login / Sign up Long COVID Online Community Welcome! Have a look around and join the discussions. Create New Post Getting started & user guides Get acquainted with the forum and check out our user guides that should help you with any technical issues you may have. subcategory-list-item.views subcategory-list-item.posts 5 Follow I have Long COVID A space for people to connect, share their experiences of Long COVID and support each other subcategory-list-item.views subcategory-list-item.posts 48 Follow I am a carer or supporter A space for people who are supporting or caring for people affected by Long COVID to share and connect. subcategory-list-item.views subcategory-list-item.posts 9 Follow Advocacy Help us advocate on behalf of those with lived experience of Long COVID subcategory-list-item.views subcategory-list-item.posts 4 Follow New Posts Alex Sep 19 Living with POTS Q&A I have Long COVID Lots of people with Long COVID have POTS, so I thought this group may be interested in the seminar below... Tue, 19 Nov, 6pm - 7pm AEDT Back by popular demand, join the Australian POTS Foundation's Community Engagement Officer, Claire Clark and exercise physiologist Jennifer Smallridge as they answer what you want to know about living with POTS. Send in your questions ahead of time via email to: admin@potsfoundation.org.au or send them to the Australian POTS Foundation in via Facebook or Instagram and we will get through as many as we can. TICKETS are $20 here: https://events.humanitix.com/living-with-pots-q-and-a?hxchl=amk-eml-hfn&hxref=1-0-0 Like 0 comments 0 linda.x.molloy@gmail.com Sep 19 neurologist I have Long COVID Does anyone see a helpful Neurologist in Perth or Sydney? Like 2 comments 2 Alex Mar 23 Online conference for POTS patients today I have Long COVID The POTS Foundation is holding a conference for medical practitioners and patients today (Friday 22 March). It's online via Zoom, and costs $95. I've looked at the speakers and it's a great opportunity to hear from some specialists that would usually cost a LOT more. The patient part of the conference is from 10am Sydney time (dial in by 9:50am). You can listen to the recordings afterwards for three months. Tickets here https://events.humanitix.com/better-together-consumer-and-scientific-conference Allow yourself a bit of advance time to buy the tickets and download zoom if you don't already have it! Like 3 comments 3 Forum - Frameless

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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.”

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

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

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.