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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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To The #MillionsMissing With ME/CFS, Something Remarkable Is Happening

Monday 14 May 2018


From The Guardian Australia:


Jennifer Brea
Jennifer Brea’s 2017 film Unrest is a visceral account
of a condition that descends from nowhere, for no
apparent reason, with devastating effect.’
(Photograph: Jason Rothenberg/AP)

To the #MillionsMissing with ME/CFS, something remarkable is happening

As researchers close in on the genetic origins of ME/CFS, it’s time to say to those suffering they are not forgotten

By Scott Ludlam
Saturday 12 May 2018
© 2018 Guardian News and Media Limited or its affiliated companies. All rights reserved.

Even the name worked against you. Myalgic Encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS) combines the incomprehensible with the banal. Myalgic what? And fatigue … doesn’t sound so bad, as medical conditions go, right? For decades, people with the condition have lingered in a twilight of misdiagnosis and misunderstanding, where clinical treatment was either absent or actively harmful and government neglect was part of the larger void in understanding across our whole society.

The condition is described as “a complex, multi-system, neuroimmune condition with a multitude of symptoms related to the dysfunction of the brain, gastro-intestinal system, immune system, and endocrine and cardiac systems…”

The technical language only goes part way to describing a forbidding condition that afflicts people in wildly differing ways, with the common factor that rest doesn’t recharge your body properly. Sleep just doesn’t work. The symptom-set reads like a list of everything that could possibly go wrong with your health, starting with “overwhelming post-exertional malaise”. It can mean anything from having to take things a bit slowly to being permanently bed-ridden, shut off from all forms of stimulus; when even the effort required to process sight and sound can become overwhelming. Jennifer Brea’s 2017 film Unrest is a visceral account of a condition that descends from nowhere, for no apparent reason, with devastating effect.


Full article…



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