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Help raise awareness of ME/CFS by attending this gathering
International ME/CFS Awareness Day is on 12th May and this year, awareness day activities are being planned right around the world between 5th and 12th of May. Perth organisers have decided to hold the Perth #MillionsMissing event on Saturday 11th of May from 2.00 pm this year rather than the internationally planned date of the 12th. This is due to higher levels of pedestrian traffic walking by on Saturday and to create event photos for news on May 11th and 12th. This will also to avoid any clashes with family time on Mother's Day.
This is a great opportunity for the community to gather together and generate awareness for the illness. They will have displays of large signs, a plethora of people wearing red #MillionsMissing t-shirts and a field of empty pairs of shoes. These represent the patients missing from their lives due to the illness.
You may like to purchase a red #MillionsMissing t-shirt to wear on the day. So that you can find the correct shirt for you, organisers have put together some photos which you can see here. Alternatively, you can wear red (for #MillionsMissing) or blue (for ME/CFS). They will be taking photos on the day.
They also have about 100 pairs of shoes from the 2018 #MillionsMissing event which they will again lay out on display. Those who can attend are also welcome to bring a pair of shoes to represent others who are unable to attend. However, you will need to be responsible for your own shoes and keep an eye on them. It is recommended that you only bring second-hand shoes that are no longer needed.
You can bring your own food and drinks or buy this from nearby vendors. You can have a picnic and social gathering with others. There are no BBQ facilities and only limited shaded areas. Please bring your own picnic blankets, folding chairs, and other items for your comfort.
About #MillionsMissing MillionsMissing is a global campaign for M.E. health equality. It is in recognition of the millions of people around the world who are missing from their lives, from workplaces, and from hobbies. This is due to Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, otherwise known as ME/CFS. For more information on these, you can click on this link.
This event is to help raise community awareness of this illness. This illness has been largely forgotten by our healthcare system and has no funding going to researching the underlying biological causes of the illness.
There is also inadequate support for patients through the medical system and disability support services. Unlike the AIDS rallies of the 1980s, you will not find heaps of ME/CFS patients waving placards in the streets demanding support. Many patients are too sick to leave the house while some are completely bed bound. Instead, there will be a #MillionsMissing display of empty shoes and this will be symbolic of a plea for recognition and support from those who are too sick to attend.
The venue will be held outdoors at Yagan Square, Perth CBD, and is wheelchair friendly. You can check out a map of the area at this link.
Parking and Public Transport Getting to the event by public transport is easy as Yagan Square is between Perth Busport and Perth Train Station. If you wish to drive, there is some street parking possibly available. There are several car parks close to Yagan Square.
Perfume-free environment It is requested that everyone attending this event be mindful of hyper-chemical sensitivities in ME/CFS patients. Please do not wear perfume, fragranced deodorants, and hair care items that have strong odours. Perfumes can trigger migraines and add to the severity of illness in some people.
About May 12th
Each year around the world on the 12th of May, patients and organisations celebrate International Awareness Day for ME/CFS. Buildings and landmarks around the world will be lit up blue for Light Up The Night.
Last year here in Australia we had just over 20 landmarks lit up in blue.
These illnesses are complex and disabling chronic illnesses affecting about 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. Many of them are actually confined to their bed and are unable to care for the simplest of their own needs. ME/CFS is "characterised by post-exertional neuroimmune exhaustion with long recovery periods, neurological impairments, immune and gastrointestinal impairments, and energy production/transportation impairments."
These symptoms are debilitating and may include difficulty processing information, short term memory loss, pain, sleep disturbance, muscle weakness, flu-like symptoms and susceptibility to infections, cardiovascular, respiratory issues and sensitivities to food, odours and chemicals.
The cause(s) of ME/CFS are unknown and at the present time, there is no laboratory diagnostic test for ME/CFS. Instead, this disease is diagnosed on clinical grounds and is a diagnosis made by exclusion.