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Sally
Jul 11, 2023
In I have Long COVID
Hi LCS community, We were recently contacted by someone working at the Baker Institute who is involved in a review of their PERCEIVE (COVID Heart) Study. They are looking at incorporating lived experiences of Long COVID and would therefore love to connect with anyone who may be open to sharing about their experience. This is the only information that I was presented with however if this sounds like it might be of interest to you, please email us directly at longcovidsupport@hic.org.au Thanks everyone! Warmest, Sally Long COVID Support
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Sally
Jul 10, 2023
In I have Long COVID
Hi everyone, Hope you're all having a great start to your week. This is just a check in to see how you're going! Warmest, Sally Long COVID Support Admin
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Sally
Jul 05, 2023
In I have Long COVID
Good morning, Long COVID Support community members The Health Issues Centre (HIC) has been proud to develop this site over the last 10 months and along the way we have partnered with many individuals, services and peer networks. In particular, during this time we have engaged with the Australian Long COVID Community Facebook Support Group who have a large membership of people with lived experience of Long COVID (over 4,000 people). This group has been instrumental in developing our knowledge of what it is like to live with Long COVID and in developing the survey we recently circulated.   As a result of our work and partnerships we believe that the support of this website should rest closely with those most affected by Long COVID. Over the coming month we will begin to transition management of this site to the Australian Long COVID Community Facebook Support Group. HIC will remain in the background for a while to make sure the transition happens smoothly. Know that our commitment to supporting those with Long COVID remains and we will be sharing the results of the survey in late August.    If you would like to learn more about the Australian Long COVID Community Facebook Support Group you can ask to join here. Alternatively, you may decide that you would prefer to unsubscribe from this forum, if so, please email us here by the end of July. We will keep you posted with updates over the coming weeks.   Warm regards, The Health Issues Centre Team
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Sally
Jun 26, 2023
In I have Long COVID
Hi everyone, Just wanted to pop in to remind you all about the survey that we have running at the moment. We have partnered up with The Australian Long COVID Facebook Group and Long COVID Australia to develop the survey which looks at health, social and economic experiences of Long COVID. We want to make sure that future efforts and dollars spent on Long COVID go where they are most needed! We have a goal to reach 500 survey reponses by end of June - as we're approaching our deadline, we would absolutely love your help!   We think the survey should take about 15 mins to complete and will be open until 30th June. You can find the survey here https://hic.qualtrics.com/jfe/form/SV_0uoe7gHTJX2ZBNY If you have any queries or concerns, please do not hesitate to reach out. Warmest, Sally Long COVID Support Admin
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Sally
May 21, 2023
In I have Long COVID
Hello LCS community, This is just a little check in to see how you're all doing this morning? Please reach out if you need any assistance with the website / if you have an enquiries. Warmest, Sally Long COVID Support Admin
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Sally
Apr 12, 2023
In I have Long COVID
Hello Long COVID Support community members. I hope that everyone is doing okay. A Professor at the Hong Kong Polytechnic University has recently reached out to us as they are conducting research into cognitive-linguistic difficulties in adults with Long COVID. As part of their research, they have created an online survey which has been translated into 21 languages. If you have the time, space and energy, and you would like to fill out this survey, please find the link below. https://longcovid19.wixsite.com/survey Warmest, Sally Long COVID Support Admin
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Sally
Mar 27, 2023
In I have Long COVID
Hello LCS Community, I hope everyone is doing well! Please see below an opportunity to part take in a research study at Monash University. I've posted a description of the project and relevant information on behalf of Debra Mitchell (researcher at Monash University). Project description Monash University School of Primary and Allied Health is seeking consumers to be involved in our Long COVID Clinic Research - Consumer Advisory Group. We are designing a Long COVID research project and student led clinic and would greatly value input from people who have or have had Long COVID. We are aware that people with Long COVID often experience fatigue and brain fog, and post exertion malaise. By seeking consumer input, we aim to avoid overburdening research participants and those reading the outcomes of the study. Specifically, the project team will ask for feedback on: Initial screening tools Assessment tools Education program for students & clinicians Final evaluation Dissemination to consumers The role of the consumer is to provide a consumer perspective which is informed by feedback and the experiences and opinions of other consumers as well as their own experience and opinions. We are seeking 6-8 people to be involved in this project. We are looking for people who would be willing to undertake 1 hour of live online training and attend approximate 4 meetings. We will also be asking for feedback on documents. SKILLS and EXPERIENCE Has lived experience of Long COVID Provides a consumer perspective which is informed by feedback and the experiences and opinions of other consumers as well as their own experience and opinions Identifies and advocates for consumer perspectives in decision making Demonstrates ability to attend meetings and other meetings as negotiated Shows ability to work as a member of a committee of consumers Prepare and read materials and documents provided in preparation for meetings Has ability to seek help or assistance when unsure or concerned about any issues Payment will be at $35 per hour and will be paid by voucher. How to Apply Please send an email with any questions or outlining how you meet the skills and experience criteria to Debra.mitchell@monash.edu by 5pm on 28/4/2023. Within your email, please include your name, address, contact number and email. We plan to start the consumer group in mid-May. Thankyou community members. If you would like to read through the full position description, please send an email through to longcovidsupport@hic.org.au Warmest, Sally Long COVID Support Admin
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Sally
Mar 23, 2023
In I have Long COVID
Hello Long COVID Support Community! How is everyone doing this week? I'm personally loving the sunshine that has hit Melbourne this afternoon after such a rainy morning! I'm just popping in to remind you all about our research tab on our website - I've added a couple of new opportunities to part take in research that is occurring on Long COVID in Australia. I hope that you all enjoy the rest of your day / week! Warmest, Sally Long COVID Support Admin
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Sally
Mar 16, 2023
In I have Long COVID
Hello community, Yesterday, Wednesday the 15th, was International Long COVID Awareness Day. At Long COVID Support, we stand in solidarity with all individuals both in Australia and Internationally who have been affected by Long COVID. We will continue to raise awareness of this condition and provide you with the information and resources that are currently available to support you in your healing. My warmest regards, Sally Long COVID Support Admin
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Sally
Mar 07, 2023
In I am a carer or supporter
Hello to all carers and supporters! How is everyone travelling this week? I hope that you're all taking some time out to prioritise your needs, rest and restore your energy levels. Sending well wishes to your loved ones who are living with Long COVID. Warmest, Sally Long COVID Support Admin
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Sally
Mar 07, 2023
In I have Long COVID
Hi everyone, How is everyone travelling this week? Any updates you would like to share with the group? I hope you're all managing your symptoms and feeling supported. Warmest, Sally Long COVID Support Admin
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Sally
Feb 21, 2023
In Advocacy
Hi everyone, Hope you're all having an enjoyable and easeful start to your Wednesday morning. As many of you would know, The Parliamentary enquiry into Long COVID and repeated COVID-19 infections has commenced their public hearings! I am fairly certain that the most recent hearing occurred this past Friday. If you haven't yet heard about the inquiry, I'll post some resources below https://www.aph.gov.au/longandrepeatedcovid https://www.sbs.com.au/news/article/not-always-fully-recognised-long-covid-patients-speak-at-inquiry-as-national-strategy-considered/mim2xcour https://www.brisbanetimes.com.au/national/improve-ventilation-and-make-antiviral-drug-widely-available-long-covid-inquiry-hears-20230217-p5claf.html This is very good news for Long COVID as hopefully we'll begin seeing some changes to how the condition is managed. How is everyone feeling? Any thoughts, feelings, concerns? Warmest, Sally Long COVID Support
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Sally
Feb 14, 2023
In I have Long COVID
Hello LCS community! Happy Tuesday! How is everyone today? Just dropping in to ask whether anyone has been using the app Visible to aid their Long COVID recovery? I love the layout of the website - so clean and fresh! Warmest, Sally Long COVID Support Admin
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Sally
Feb 06, 2023
In I have Long COVID
Hello Long COVID Support community members! We were recently contacted by a research assistant for an RMIT Project, the Pathways to Healthy Ageing Podcast, to call out to our community members to see if anyone would be interested to be a guest on their podcast. Their podcast covers various aspects of health for people over 60, and they are currently planning an episode on Long COVID. As a part of this episode they would love to include community voices and hear from those who are living with Long COVID. Please find below further details of what would be required if you were to participate - Location - In-person is preferred (Melbourne) but virtual interviews are also an option Number of guests and age - they are looking to speak with around 4 - 5 guests, ideally with people over 60. Interview length - the podcast episode will run for 30 minutes Timeline - the recordings will ideally be completed by end of month Compensation - this is all voluntary and there will be no compensation provided Privacy - the research assistant has informed me that since the podcast is pre-recorded (not live), interviewees can request to have details edited out. Although there is no obligation to offer up personal / identifiable details, they are likely to include name and age. There is also a form that will need to be filled out as a requirement of their research project. If you're interested or if you have any additional questions, please send me an email at info@longcovidsupport.org.au and we will go from there! Warmest, Sally Long COVID Support Admin
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Sally
Feb 02, 2023
In I have Long COVID
Hi Long COVID Support Community! How is everyone feeling today? We're constantly looking at ways to enhance our website and part of that is by expanding our patient stories page (found here https://www.longcovidsupport.org.au/your-stories) This page was created as a means of using story-telling as a tool to help the broader community understand the experiences of people affected by Long COVID. If you're curious, I'd recommend reading through the stories that we already have available on the page as they'll give you an idea about structure / length. But essentially, this is a very flexible and open format. To share your story or for further information, please email us at info@longcovidsupport.org.au I look forward to hearing from you! Warmest, Sally Long COVID Support Admin
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Sally
Feb 02, 2023
In I am a carer or supporter
Hello, carers and supporters How is everyone doing? I'd love to hear about how you're managing your health - both physical and mental / emotional - whilst also caring for your loved one who is affected by Long COVID. Have you found particular habits, rituals, lifestyle adjustments to be helpful? Warmest, Sally Long COVID Support Admin
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Sally
Jan 30, 2023
In I have Long COVID
Hello, community! How is everyone this week? Any small wins to share with the rest of the community? Lowering of symptoms? A newfound supportive GP? A new perspective or small beneficial change in routine? A new friend that you can speak to openly? A delicious meal? One extra hour of sleep? I think as humans, we can often disregard the small wins in our day to day when really, it's these small wins that can lead to the biggest changes in our health and quality of life over time. As always, any issues, queries or concerns, please reach out! Warmest, Sally Long COVID Support Admin
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Sally
Jan 24, 2023
In I have Long COVID
Hello all! I wanted to check in and ask how everyone is travelling lately? Any improvements in symptoms or updates on your health status? Looking forward to hearing about it all 😊 Warmest, Sally Long COVID Support Admin
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Sally
Jan 16, 2023
In Getting started & user guides
Hello community! This is a quick post regarding notification settings. An easy way to ensure that you're receiving notification when someone has posted in the forum is to 'follow' the specific categories (getting started & user guides, I have Long COVID, I am a carer or supporter, Advocacy). You will see the follow / following icon on the far right hand side. If you're having any trouble with receiving notifications / turning off notification settings, please let me know! Warmest, Sally Long COVID Support
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Sally
Jan 12, 2023
In I have Long COVID
Hi Long COVID Support Community members, How is everyone doing today? Just letting you know that new articles have been added to the news and research sections of our website. We endeavour to upload content on a weekly / fortnightly basis. If you would like to see specific content related to your needs, please reach out to us by either responding to this post or emailing us at info@longcovidsupport.edu.au Warmest, Sally Long COVID Support Admin
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Sally

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