Monday, May 23rd, 2016

#Millions Missing is a global day of protest for the millions missing from work, life, school, and families because of the devastating Neuroimmune illness ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). #MillionsMissing Melbourne will join protests in the U.S., U.K and Canada on May 25th 2016 from 12–2 pm, on the lawn of the Victorian State Library.

The protest will include patients, carers and advocates and donations of patients shoes as a symbolic and poignant statement of those missing from life and too ill too attend.  Professor Nancy Klimas, a U.S. AIDS and ME/CFS 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.”

In Australia, up to 240,000 people have the illness and costs to the community is estimated at 4 billion per annum.  Of this group 25% are so ill they are unable to feed themselves and have been bedridden and housebound for years. Despite this, 2015, the Australian Medical Research Council NHMRC  has estimated it 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).

The #Millions Missing refers to both patients lives and the Millions Missing from funding and Research. In Australia this is in an extremely unrepresentative state given the number and severity of sufferers, the cost to the community and the lack of any biomedical treatment or cure. Greens Senator, Scott Ludlam reported to the Senate Estimates Committee “I am struggling to think of a cohort of people in our community that large for whom there is so little”. February 15th 2016,

ME/CFS patients around the world who are too sick to attend a protest in person will be attending a virtual protest, posting selfies using #MillionsMissing to show the millions missing from the protest demonstrations, posting photos of their shoes’ on their doorstep or driveway (#PutOutYourShoes), and signing petitions for funding of research.

#MillionsMissing Melbourne request the Victorian Government commit to urgently address this debilitating neuroimmune disease ME/CFS, funding research and promoting appropriate clinical care. So that the funding for ME/CFS patients is commensurate to similar illnesses with an equal disease burden.


#MillionsMissing Melbourne protest:

Who:  #MillionsMissing patient advocates living with and affected by ME/CFS

Where:  State Library of Victoria lawn, 328 Swanston St, Melbourne VIC 3000

When:  Wednesday, May 25, 2016, 12–2pm

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

Jenny Meagher 0409 533 979 [email protected]

                         Millions Missing from work lives and family





Further information about the Melbourne and global #MillionsMissing protest and ME/CFS found here:


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#Millions Missing Melbourne, ME/CFS awareness, Myalgic Encephelomyelitis/Chronic Fatigue Syndrome,Melbourne, 25th May 2016, State Library Victoria,



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