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by #MEAction Network Australia category: Education
An estimated 240,000 Australians are part of the #MillionsMissing worldwide due to Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS).
ME/CFS is a severe, complex, chronic illness. ME/CFS affects most body systems, particularly the nervous, immune, cardiac, gastrointestinal and endocrine systems. It can devastate the health of women, men and children, leaving many unable to work, study or leave their homes for years. There is no cure and, for many, it is a lifelong condition.
Australians with ME/CFS are missing.
Missing from the NDIS - Despite being more disabling than MS or heart disease, ME/CFS is not currently included on the NDIS list of disabling conditions. This makes it difficult for people with the condition to access much needed support services. ME/CFS needs to be included on the NDIS list, for equitable access to services.
Missing from research funding - Globally, similarly disabling diseases receive 25 times the research funding provided to ME/CFS. Australian ME/CFS research into the biomedical aspects of the condition has received no Federal Government funding since 2005. Research funding commensurate with disease burden is imperative to progress the understanding of this disabling condition.
Missing from appropriate treatment - There are no current Australian treatment guidelines for ME/CFS. Few health professionals are up-to-date on ME/CFS research. This means that people with the condition have difficulty accessing appropriate medical care. We need treatment guidelines which reflect the current understanding of the condition.
Missing from medical training - There is little or no training in ME/CFS for health professionals. The science is evolving rapidly, and many health professionals hold outdated views on the nature and treatment of the illness. We need appropriate training for health professionals included in undergraduate degrees, and ongoing education.
May 12 is International ME/CFS Awareness Day and on May 12, the #MillionsMissing will have a global day of action to ask for funding and medical training commensurate with the disease severity and economic burden. Stand with them to help make this invisible illness visible by sharing their message.
For more information on Myalgic Encephalomyalitis (ME) / Chronic Fatigue Syndrome (CFS) visit may12th.org.au
#MEAction Network Australia
#MEAction Network Australia is a group of people with ME/CFS, their carers and other healthy allies, empowering each other to fight for health equality for people with ME/CFS. We were founded with the belief that, while we may find it difficult to advocate for ourselves in the physical world, in the virtual world we can be an unstoppable force. Together we will be heard.