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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 28,
Hindmarsh,
South Australia 5007

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ME/CFS Australia (SA) 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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A Disease That Cries Out For Research As Many Suffer Silently

Monday 21 August 2017

 

From InsideSources:

 

Research
 

A Disease That Cries Out for Research as Many Suffer Silently

By
August 17, 2017
Copyright 2014 © InsideSources, LLC. All Rights Reserved.

All diseases are cruel, but some have a refined brutality all their own. One such is Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). It is a monster, often hidden in plain sight; the suffering it inflicts is limitless.

Tom Camenzind is a handsome young man who should be in the joyous throes of youth. A popular and gifted student at Stanford University, Tom was clearing the hurdles of academia with ease and grace. In January of his sophomore year, he caught a cold on campus. ME walked through some door, and stole his promising life.

Today Tom lies conscious but prone in his parents’ home in San Ramon, Calif. He is totally paralyzed and can only communicate with his parents, Mark and Dorothy, by pressure from his fingers on sensors. He cannot tolerate everyday sounds, light or touch.

When the sensor-activated bell sounds, Tom’s parents come rushing to his side. Mark is an engineer and Dorothy is a physician, and the strain of their son’s affliction on them is palpable. Tom cannot do anything, anything whatsoever, for himself. At 23 years old, he is on the threshold of life, but he cannot cross it. He breathes and thinks, but he cannot live his life.

Recently, I filmed the Camenzinds for a special edition of “White House Chronicle,” a weekly program that I produce and host for PBS and other broadcast outlets. It was made in conjunction with the Solve ME/CFS Initiative, a Los Angeles-based charity.

Tom’s agony, and that of 1 million in America and 17 million around the world, predominantly women, cries out in terrible, silent eloquence for a national research effort with international cooperation on ME/CFS — so that those who suffer, like Tom, can dare to hope.

 

Full article…

 


 

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