Wednesday, April 27, 2011

Theda's desperate fight against a chronic killer

Chalpat Sonti,

Theda Myint had the world at her feet.

Bright, beautiful and vivacious, the budding investigative journalist was weeks away from starting her dream career.

Now, 10 years later, she is fighting for her life.

She is unable to move beyond the confines of her home - and usually not beyond her bedroom, unable to speak for more than a few seconds before getting tired out, unable to tolerate lights or sounds, unable to remember what happened a few minutes previously, unable to live anything like a "normal" life.
"Thank you very much for coming," she tells when visited at her Willetton home.
Saying those few words will leave Theda drained of strength for several days, so strenuous is the effort.

However, she was prepared to go through the torture of having a photograph taken,
because the publicity might help end her torment.

Theda, 34, suffers from a form of myalgic encephalomyelitis, or ME, better known as chronic fatigue syndrome.

Though the two terms actually refer to different diseases, they are usually used interchangeably. But it's a disease that little is known about, and which is often the target of mockery.

But it's no laughing matter to Theda. Her case is severe.

There are no reliable statistics as to how many people die from ME/CFS, with most fatalities put down to organ failure. Her mother and full-time carer, Carol Adams, puts it bluntly.

"Is my daughter going to die because we can't give her the medicines she needs?" she said.

"It breaks my heart that she's lost her life. I've been told Theda's at the same level AIDS sufferers are (at) two weeks before they die."

But treatment has been even less reliable to date. Theda, like many ME/CFS sufferers, has had no joy after years of visiting local GPs, specialists and hospitals.

Most either gave up perplexed, or told her the disease was all in her mind. She even underwent electro-shock therapy and put herself through an exercise regime, which only made matters worse. Read more>>

See also: ME sufferer Theda Myint locked up in a psychiatric unit

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