Society Logo
ME/CFS Australia Ltd
Please click here to donate ME/CFS Australia (SA) Inc

Registered Charity 3104


Mailing address:

PO Box 322,
South Australia 5092

1300 128 339

Office Hours:
Monday - Friday,
10am - 4pm

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.


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.

Become a Member
DOCX Application Form (PDF, 156KB)
Why become a member?

Barbara Smart's aching 35-year wait for diagnosis

Friday 9 December 2011


Although the lady in question does not have ME/CFS, Barbara Smart's story will be familiar to a lot of sufferers:


Barbara Smart
PERSISTENT PAIN: Barbara Smart suffered from
several debilitating symptons before she was
correctly diagnosed by a South African doctor.
PICTURE: Dominique Menegaldo
Source: PerthNow.

Barbara Smart's aching 35-year wait for diagnosis

Liam Croy, Stirling Times
From: PerthNow
December 08, 2011 5:07AM

FOR 35 years, no one knew what was wrong with Barbara Smart.

As first revealed on our iPad last night, the Joondanna resident contracted scabies when her sister returned from Turkey in 1976, and she never got better.

During the next few decades, fatigue, weakness and a hazy mind saw her diagnosed with chronic fatigue syndrome and even confined to a psychiatric ward.

By the time a South African specialist diagnosed her with epidemic typhus in April this year, she was a broken woman with no real chance of recovery.

“I knew 35 years ago that I had something and I knew my son had something, but the doctors here couldn’t pinpoint it and then they just gave up. They said it was psychosomatic,” she said.

“The doctors couldn’t diagnose me with anything because it was not on their little list - so they said I had something wrong with me mentally and I ended up in the psychiatric ward.

“To be treated the way I was by the medical profession ... my self-esteem was non-existent from that point on.”

Ms Smart’s son was a few weeks old when she contracted epidemic typhus - a rare condition in developed countries but a curable one if identified early enough.

Her son, who grew up suffering the same debilitating symptoms, took his own life seven years ago.

“He was home-schooled for five years because he was so ill. If he had got rid of this and lived a normal life he would never have done it,” Ms Smart said.

“His life was wasted; he couldn’t do the things other young people did. My son had no life.”

The 63-year-old said her condition was physically and mentally devastating.

“It’s an intracellular organism and it invades every single cell of your body, including your organs and your brain. It can lead to things like multiple sclerosis, Parkinson’s disease and schizophrenia,” she said.

“You feel like every cell is weighted down with lead, your brain is full of cotton wool and your thoughts can’t connect.

“It’s so insidious; it’s almost like I’m carrying something from another planet.

“The worst is the loss of identity. I think you gain your sense of self through what you achieve and I’ve achieved nothing.”

Ms Smart hoped her story would raise awareness about typhus and help others avoid the same nightmare.

“I don’t socialise much because it’s incredibly draining. It’s an existence, and if I didn’t enjoy reading, I think I’d go mad," she said.

“It’s a wasted life; there are so many things I wanted to do.

“I guess I’d like to make people aware that this condition exists. Maybe they are suffering and don’t know what’s going on.”

* Lifeline's telephone counselling service is 131 114

* For more on this story or for news in your suburb, visit


The above, with comments, originally appeared here.



blog comments powered by Disqus
Previous Previous Page