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Online community launches to support people with Long COVID

The Health Issues Centre, a peak health consumer organisation in Victoria, has launched an online Long COVID Support community, write Andrew Mosley, the Centre’s Head of Policy and Advocacy, and Communications Officer Sarah Medcalf.


Andrew Mosley and Sarah Medcalf write:

Last week saw the World Health Organization proclaim the end of the COVID pandemic is “in sight”. While we all welcome this optimistic outlook, for those Australians infected with COVID-19 who have developed Long COVID, this is little comfort.

Often described as the “silent pandemic”, Long COVID has negatively impacted the health and economic outcomes for those living with the condition.

Long COVID has presented as a major health challenge both within Australia and globally. Estimates from international research of the prevalence of Long COVID vary greatly – from 4-43 percent of those infected. Further research on its prevalence is continuing.

Long COVID can impact a person’s health and wellbeing with a broad range of associated signs and symptoms, commonly affecting respiratory, olfactory, cognitive, joint and muscular function. For those living with moderate to severe symptoms, such as headaches, fatigue, difficulties with memory and concentration, and cardiovascular issues, routine tasks move from doable to near Herculean.

Despite its prevalence and list of debilitating symptoms, not much is known about the condition in terms of specific causes and treatment options. What is confirmed, however, is that the condition has the potential to alter the immune system and affect multiple organs for up to two years after initial infection.

Federal Treasury evidence also suggests that Long COVID keeps 31,000 Australians away from work each day. This prompted Treasurer Jim Chalmers to worry that “our labour market has been absolutely smashed by COVID, and by Long COVID recently.”

Analysis prepared for the AFR Weekend by Impact Economics and Policy estimates that Long COVID is costing the economy $100 million a week in lost economic output.

Support options are limited

Unfortunately, options for both financial and medical support are scarce. It was recently revealed that waiting lists for Long COVID clinics have extended to four months.

At Health Issues Centre, we believe that the first step toward Long COVID recovery is to belong to an accessible, supportive community that offers understanding and empathy via peer support.

Through our research within the space and engagement with consumers, it has become evident that in addition to needing access to support, Long COVID sufferers are desiring more readily available, up-to-date research.

This is why we’re building an Australian first, stand-alone online Long COVID Support community, being launched today. This safe online space will be a lifeline for people who are struggling or experiencing isolation within the broader community.

Our aim is to connect those affected by Long COVID, not only enabling them to share lived experience and build a sense of connection, but to also provide a platform where authoritative information, latest news, and developments in medical and scientific research can be accessed.

The website will also provide information on support and services that are available for people to help them through their Long COVID journey.

Our community has been established as a stand-alone website where people can connect without the need to be part of a broader social network. Health Issues Centre experienced staff members will also be moderating the forum, ensuring that engagement is appropriate and in alignment with our guidelines.

Find out more

To become part of community of like-minded Australians living with Long COVID, sign up at www.longcovidsupport.org.au.

The community is free to join and not only open to all individuals directly affected by Long COVID in Australia but also extends to those caring for individuals who are experiencing the condition.

The online community is supported by the Melbourne Lord Mayor’s Charitable Foundation.


See previous Croakey articles on Long COVID

 

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