May12th ME/CFS Awareness Day Australia
ABOUT MAY12th INTERNATIONAL ME/CFS AWARENESS DAY
For 25 years International Awareness Day has been recognised around the world, and in 2015 and 2016 we started working on a coordinated project with other organisations and volunteers from around Australia to help increase awareness and events on and around May12th each year. Each year volunteers and patients around Australia organise buildings and landmarks to be illuminated blue, as well as host events wherever possible.
ABOUT THE PROJECT
Our May12th.org.au awareness project is an awareness website set up be ME/CFS and Lyme Association of WA, Inc. in 2015, and is in collaboration with a number of other ME/CFS organisations around Australia.
Visit May12th.org.au for more information on what's on: a calendar of awareness events, buildings lighting up, and photographs. The website also provides contact information so that visitors can make donations directly to their local organisation.
This website - May12th.org.au - needs money to run, and money to be able to grow and make an impact. Donations help with website expenses, media and marketing, fundraising merchandise such as blue ribbons, and other expenses surrounding this project, as well as a 7% management fee*.
This campaign is being managed by ME/CFS and Lyme Association of WA, Inc. as a collaborative project with a separate bank account for managing project costs. Your donation will go into our dedicated May12th bank account, which is kept separate from regular organisation expenses. We are a registered charity audited annually, and have deductible gift recipient status.
* 7% of donations are forwarded to ME/CFS Lyme Association of WA as a management fee for their time and workload with this initiative and project. (i.e: For every $1,000 raised for this May12th project, $70 is provided to WA to help fund their own projects and services, and $930 remains dedicated to May12th expenses). WA is low on fundraising and donations, with WA volunteers having contributed over 100 hours toward this project free of charge; taking time away from their own charity. If you are a WA resident, business, patient or member, we encourage you to donate directly to WA rather than to this May12th project so that your local WA charity is able to meet its annual expenses and provide further support and services to the local patient community.
ABOUT THE ILLNESS
ME/CFS is a complex and disabling chronic illness affecting an estimated 17 million people worldwide. Conservatively, an estimated 101,000 Australians have ME/CFS, though it could be as high as 240,000. An estimated twenty five percent of these people are housebound, and many are confined to bed – unable to care for the simplest of their own needs. ME/CFS is still poorly understood by science. Currently, there is no cure, nor any approved treatments. Whilst many people with ME/CFS may improve with time, recovery rates are very low.
ME/CFS is considered an invisible illness as, in the majority of cases, there are no outward signs of the illness. It is also invisible as those who are most unwell are largely not seen outside their homes, and are often unable to have visitors.
ME/CFS can impact on the entire body, including brain function, cardiac function, the immune system and the nervous system. As a result sufferers experience many challenging symptoms, such as:
- Energy production/transportation impairments
- Post Exertional Malaise (PEM)
- Body temperature instability
- Debilitating pain and fatigue
- Inability to think clearly
- Poor immune system function
- Sensitivity to the environment, including light, noise, odours and touch
- Dizziness that disrupts mobility and dropping blood pressure that limits sitting, standing and ordinary daily activities
- Impaired memory
- Muscle weakness, spasms and poor coordination
- Nausea and abnormal gut function
All of these symptoms, and many more, become worse with mental, physical or emotional exertion. This exacerbation can last days, weeks or even months.
Compounding these problems is a severe lack of funding. Insufficient funds for medical research has meant that researchers are only just beginning to understand the biological causes of the illness. The lack of pathological testing services for ME/CFS patients has resulted in a very poor prognosis. Insufficient funds for patient support groups has resulted in virtually no paid positions providing support services for patients and advocating for their needs. Ironically, the lack of funding is likely costing the government much more supporting patients with disabling symptoms than it would if the biological issues could be identified and addressed directly. We can only break this vicious cycle with a much needed boost in funding. Can you help?
Fundraise for this campaign
Show your support and start a fundraiser
Ending 9th June 2017