ME/CFS Awareness Week 2022

Building upon the success of our previous events, Emerge Australia again hosted our ME/CFS Awareness Week virtually in 2022. Virtual events are the most inclusive for our community, and we are grateful that our program of events were enthusiastically embraced making this another successful year.

In 2022, ME/CFS Awareness Week was recognised from Friday 6 May - Thursday 12 May, with International ME/CFS Awareness Day held on the 12 May.

The theme for the week was "Learn from ME, because people living with ME/CFS matter."

Our focus for 2022, was about getting back to basics, sharing important information about ME/CFS through a range of webinars hosted across the week. All webinars aimed to run for a maximum length of 30 minutes, however some did run for 60+ minutes.

All live webinars were recorded, with links available below.

Sign the petition - Because people with ME/CFS matter!

We also launched an important petition as part of our State of the Nation campaign. There is still time to sign the petition! We encourage you to lend your voice to support our push to increase funding for specialised ME/CFS education for Australian based GPs, among other initiatives.

Sign our petition encouraging the newly elected government to invest in ME/CFS over the next five years.

Webinar series:

The Basics of ME/CFS

Prerecorded webinar, released on Saturday 7 May at 2pm (AEST)

Watch the webinar here

Join Emerge Australia's Nurse Educator Kate Herbert as we dive into the basics of ME/CFS, including outdated and current understanding of ME/CFS, the importance of post-exertional malaise (PEM) in diagnosis, and management techniques such as pacing that you can use to manage life with ME/CFS.

This session is designed for those living with ME/CFS who want to revisit the basics of the disease and the foundational principles of management. It is suited to those who are newly diagnosed or those who have lived with ME/CFS for some time but would like to refresh their knowledge.

Q&A with Dr Richard Schloeffel

LIVE webinar hosted on Monday 9 May, 2022 at 1pm (AEST)

Watch the webinar here

Emerge Australia Medical Director Dr Richard Schloeffel OAM will join CEO Anne Wilson to answer all your questions about ME/CFS including ME/CFS symptoms, diagnosis, management, GP education and clinical guidelines.

This session is designed for those living with ME/CFS as well as their carers, friends, and family members. Come along to gain a deeper understanding of ME/CFS and to hear from a leading clinician in the diagnosis and management of ME/CFS.

* Please note. This session cannot provide individualised medical advice. Questions submitted should be general in their nature.

ME/CFS Research Panel

LIVE webinar hosted on Tuesday 10 May, 2022 at 2pm (AEST)

Watch the webinar here

Emerge Australia's Research Manager Michelle Tavoletti was joined by leading Australian researchers, Professor Paul Fisher, Dr Sara Ballouz, Dr Chris Armstrong and Professor Ken Walder to unpack their latest local developments in ME/CFS research, as well as provide an update on the Australia ME/CFS Biobank and Patient Registry.

This session is designed for those living with ME/CFS, carers, family members or friends. Clinicians and health professionals with an interest in ME/CFS are encouraged to watch the recording.

Building your Post-Exertional Malaise (PEM) Toolkit

LIVE webinar hosted on Wednesday 11 May, 2022 at 2pm (AEST)

Watch the webinar here

Join Emerge Australia's Manager of Patient Support and Information Services Laura Allen and Nurse Educator Kate Herbert in an interactive session to support you in building your PEM toolkit! This powerful session pools the collective wisdom of our amazing ME/CFS community to support you to come away with new tools to manage PEM.

This session is designed for those living with ME/CFS or caring for a person with ME/CFS. It will address various levels of severity and provides all attendees with a chance to both share their personal experience and learn from the experience of others.

Have a general question or two for us about ME/CFS Awareness Week?

Get in touch with us here

Latest

Research Digest 01/12/22

Welcome to the 90th edition of the Research Digest. This month's edition features ME/CFS studies investigating microclotting and antibody targeting of gut bacteria. Also presented, is the study of serum samples from post-covid syndrome and -/+ME/CFS patients, to further study endothelial dysfunction and the role of angiogenesis in both study groups. And finally, the recent ABC news article featuring Chris Armstrong and Anne Wilson is highlighted.
Change to eligibility for oral COVID-19 treatments

The Pharmaceutical Benefits Advisory Committee recommended changes to the Pharmaceutical Benefits Scheme (PBS) eligibility criteria of oral treatments for COVID-19.
Living with Severe ME/CFS

It is estimated 25% of individuals living with ME/CFS have severe or very severe symptoms. Ricky Buchanan worked with Emerge Australia to create some tips and hacks for those living with severe ME/CFS.
Post-Infection disease: Australia’s 10th National Health Priority Area

Emerge Australia strongly advocates for the Federal Department of Health to make post-infection disease Australia’s 10th National Health Priority Area (NHPA). The number of Australians living with post-infection disease is rapidly increasing, predicted to be over half a million by the end of 2022, due to a new cohort of post-infection disease patients: those with Long COVID.

Change to eligibility for oral COVID-19 treatments

The Pharmaceutical Benefits Advisory Committee recommended changes to the Pharmaceutical Benefits Scheme (PBS) eligibility criteria of oral treatments for COVID-19.
ABC article: Long COVID funding non-existent

Health authorities around the world are spending billions on tackling Long COVID, with innovative research projects for new treatments and comprehensive patient support. In Australia, things are a little different. The ABC's Sophie Scott and Stephanie Dalzell recently spoke with Emerge Australia's CEO, Anne Wilson, as part of their story on the Federal Governments underfunding of Long COVID in Australia.
ABC Interview: Disappointment after no mention of long COVID in budget

Anne Wilson, Emerge Australia's CEO, has expressed disappointment as the budget provided no funding for sufferers of Long COVID or other post-viral conditions.
Merri Health Physiotherapists and Exercise Physiologists learn about ME/CFS

As part of Emerge Australia’s ongoing specialised education sessions for Allied Health professionals our Nurse Educator, Kate Herbert, presented an education session on Monday March 4th, about the basics of ME/CFS.
Could Long COVID be the best thing that ever happened to ME/CFS?

It's called Long COVID, often Long-haul COVID and sometimes Post Acute Sequelae of COVID-19 (PASC). Last week the World Health Organisation announced a definition for what it calls "post COVID-19 condition", affecting people at least two months after a COVID-19 infection with symptoms that “cannot be explained by an alternative diagnosis”.
Remind your GP

Module 2 of our GP Education program focuses on ensuring a patient-centered approach to care for people living with ME/CFS. Has your GP completed it yet?
Emerge Australia Online Community

Online community groups provides peer support and an open online forum for patients and carers to come together and provide mutual support, connection and friendship. We also host classes suitable for people with limitations caused by ME/CFS.
Australian Research Centre to Open Early in 2021

The new Australian ME/CFS Centre for Collaborative Research is expected to officially open early in 2021
Coronavirus and ME - Simplified facts

Many people with ME/CFS and other vulnerable communities in Australia are concerned about the impacts of the spreading coronavirus disease COVID-19. This is an easy-read resource with the latest information and advice.