What is Severe ME day?
Severe ME Day is recognised globally each year on 8 August, as a day to acknowledge the strength and spirit of the estimated 25% of individuals living with ME/CFS who have severe or very severe symptoms. These individuals are housebound or bedbound and the least visible in research, support, education, and awareness.
Count ME Campaign
This Severe ME Day Emerge Australia is focusing on our Count ME Campaign to make sure our community is counted, in the data, in the health system, and in the decisions that affect our community’s lives.
Count ME will shine a spotlight on groundbreaking developments surrounding these often misunderstood and stigmatised conditions, and share critical insights to equip decision makers to ensure support to effectively meet the needs of our community.
Because ME/CFS, long COVID and energy-limiting conditions have to count
More than 600,000 Australians live with ME/CFS, long COVID and related energy-limiting conditions, conditions, with an estimated 25% being housebound or bedbound.
These conditions have been misunderstood, under-researched and left out of the data, systems and conversations that shape people’s lives. ME/CFS has carried that burden for decades. Long COVID has inherited the same dismissal and gaps in care almost overnight.
Being counted matters. It’s the difference between a condition the health system plans for and one it overlooks. Between research that gets funded and research that doesn’t happen. Between a person whose experience is believed, and one who has to fight to be taken seriously.
How can I be counted?
Emerge Australia and Edith Cowan University are working together to better understand life with ME/CFS and long COVID in Australia. If you are over 18 years old and live with either condition, you can help by telling us more about your experience through our online survey.
How will the answers help?
The findings will be published in a scientific journal, presented at conferences, shared on the Emerge Australia website, and used to support our advocacy work.
They will also help build the evidence that government organisations may use, such as future Australian Institute of Health and Welfare (AIHW) Australian Burden of Disease Studies.
Your participation is important and will help shape a better future for people living with ME/CFS and long COVID.
Need to stop, rest and/or pace?
- Close the survey and return using the same survey link, on the same device and in the same browser.
- Do not use private or incognito browsing or clear your cookies before you finish.
Severe ME resources
Explore Severe ME resources on our website below:
For further information on ME/CFS and long COVID and Emerge Australia’s support services, please email: [email protected]
