ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members. Disclaimer ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives. Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services. |
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Remembering The Forgotten: How AMMES Lessens Isolation And NeglectFriday 10 May 2019
Remembering The Forgotten: How AMMES Lessens Isolation And Neglect May is the month for acknowledging the Millions Missing – the millions of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) patients who, through the years, have suffered from poor medical care, insufficient research into the cause and mechanisms of the disease, and a paucity of clinical trials to discover effective treatment. May 12, Florence Nightingale’s birthday, is the day we recognize the toll ME/CFS takes on those who have the chronic illness and on their families, who suffer alongside them. Among the millions missing is a group that is often overlooked. These are the people for whom isolation does not simply mean the loss of friends and the inability to attend weddings, family gatherings, and social events. Isolation, for this group, means rejection, not just by society at large, but by the people closest to them. It means loneliness and neglect on a scale that is incomprehensible to patients who have loving parents, siblings, and partners. These “missing” people do not participate in advocacy actions – on any level. They are not to be found on forums, or social media. Their lives are lived silently, unseen by the ME/CFS community at large. These are the impoverished ill, people who have been abandoned by friends and family. Nobody will put their photos on a billboard, or write a news article about them, because these severely ill patients have not one living soul to defend them. In May, the ME/CFS community remembers patients who have been neglected by the medical establishment as well as the government agencies responsible for their care. This month, the American ME and CFS Society (AMMES) remembers the patients who have been forgotten by everyone.
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Registered Charity 3104
Email:
sacfs@sacfs.asn.au
Mailing address:
PO Box 322,
Modbury North,
South Australia 5092
Phone:
1300 128 339
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(phone)