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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.


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Remembering The Forgotten: How AMMES Lessens Isolation And Neglect

Friday 10 May 2019


From ProHealth:



Remembering The Forgotten: How AMMES Lessens Isolation And Neglect

By Erica Verrillo
Erica Verrillo is the president of the American ME and CFS Society, a 501(c)(3) nonprofit.
May 8, 2019
Copyright © 2019 ProHealth, Inc. All rights reserved.

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.


Full article…



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