#MillionsMissing is a global day of action for the devastating illness Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome or ME/CFS. #MillionsMissing represents the millions of people who are missing from their careers, schools, social lives and families due to ME, as well as the millions of dollars missing from research and clinical education.

#MillionsMissing Melbourne will be held on Wednesday October 12, 2016, 1–2 pm, Parliament House steps, Melbourne. ME patients and their supporters will gather around a symbolic display of shoes representing those missing from life and too ill to protest due to the devastating effects of ME.

In Australia, up to 240,000 people have ME. It is a multi-system disease characterised by a severe worsening of symptoms after even minimal exertion. It causes debilitating symptoms, related mainly to the dysfunction of the brain, gastrointestinal, immune, endocrine and cardiac systems. ME is a seriously disabling illness, with 25% bedbound or housebound. Up to 70% are too ill to work. The effects of ME can be lifelong, and full recovery is rare, estimated at 5%, leaving patients sick for years, even decades.

Patients with ME score more poorly on quality-of-life surveys than patients with multiple sclerosis, stroke, diabetes, renal failure, lung disease and various cancers. Professor Nancy Klimas, a U.S. AIDS and ME specialist and researcher says: “Patients with this illness can experience a level of disability that’s equal to that of late stage AIDS, patients undergoing chemotherapy, or those with secondary Multiple Sclerosis.”

Australian Directors Professors Sonya Marshall-Gradisnik and Don Staines of the world-class ME research centre National Centre for Neuroimmunology and Emerging Diseases (NCNED) report: “The illness Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a severely disabling illness which affects millions of people around the world. The illness in its most severe form has a case fatality rate and a suicide rate which are difficult to quantify.”

The cost of ME to the Australian economy is estimated at $720 million per annum in combined health care and lost productivity alone. Despite this, the Australian Government provides almost no funding to ME for research or health care. For example, in 2015, the Australian Health and Medical Research Council NHMRC provided only $121,000 in research funding for ME/CFS in contrast to other similarly disabling, but far less prevalent, illnesses like Multiple Sclerosis ($9,000,000) and HIV/AIDS ($14,900,000).

Greens Senator, Scott Ludlam told a Senate Estimates hearing on February 15th, 2016: “I am struggling to think of a cohort of people in our community that large for whom there is so little.”

#MillionsMissing Melbourne requests that the Australian Government make a serious commitment to urgently address this debilitating multi-system illness ME, including funding for diagnostics testing, better health care and Australian biomedical research funded at a level commensurate with the prevalence and economic cost of the disease.

#MillionsMissing Melbourne: https://my.meaction.net/events/millionsmissing-melbourne

Who: ME patients and their supporters

Where: Parliament House steps, Spring St, Melbourne VIC 3000

When: Wednesday, Oct 12, 2016, 1–2pm

Press Contacts: Anna Kennedy 0407 808 207 [email protected]

Jenny Meagher 0409 533 979 [email protected]

Further information about ME and the #MillionsMissing global day of action can be found here: http://millionsmissing.org

Links to Australian ME patient stories:

https://www.thesaturdaypaper.com.au/2016/08/06/rethinking-chronic-fatigue-syndrome/1470405600356

https://meaustralia.net/2016/09/13/severe-me-suffering-ignored-and-denied-help

http://junkee.com/the-invisible-suffering-of-australians-living-with-chronic-fatigue-syndrome/73998

Video of a severely ill ME/CFS patient: https://youtu.be/vfZwqLjDR4w

Photo options to accurately portray ME/CFS patients

http://phoenixrising.me/stock-photography