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ME/CFS and Lyme Association of WA, Inc.

Logo for ME/CFS and Lyme Association of WA, Inc.

ME/CFS and Lyme Association of WA, Inc. (formerly ME/CFS Society of WA, Inc.) was incorporated in 1997 and is Western Australia’s state organisation for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. We also provide support to those with Lyme disease (Borreliosis), co-infections, and the Australian Lyme-like illness yet to be fully characterised. We serve the WA ME/CFS and Lyme community - anyone who needs our assistance including patients, carers, family members, researchers, and medical professionals. We are an all-volunteer run organisation, led by people with the illness and disability, as well as a few others who have a close friend or family member living with the illness. We are governed by a board who focus on governance and financial oversight. We also have volunteers lead the management of the operational side of our organisation, and a very small team of volunteers with the illness to help out. This ensures we are always doing what is best for our community, and using our lived experience to support others and provide helpful information. Here are some things we do: • Provide information and peer support. • Host events and seminars (including researchers from Murdoch University, UWA, NCNED). • Participate in international awareness including May12th International ME/CFS Awareness Day and #MillionsMissing. • Advocacy (Senate Inquiry submissions and co-signed national letters to government). • Supporting research around WA and Australia-wide with information seminars and participant recruitment. (eg: hosted research update seminars for Murdoch Uni, UWA, NCNED). • Run a peer support group. • Newsletter and Facebook Page news and information dissemination. • Our organisation founded the website May12th.org.au as a collaborative Australian awareness campaign, which in previous years has been supported on social media by politicians/MP’s. Volunteers are able to contribute for a few hours a year, a few hours a month, ad hoc, or on a weekly or fortnightly basis for a few hours. There is always something to do or a need to fill. We intake volunteers year round any time, including for filling new roles, finding more people to assist with roles and share tasks to help support other volunteers, and increase capacity for existing projects and new projects.