AHMF Advocacy Package

Issues of Severity: Myalgic Encephalopathy/Chronic Fatigue Syndrome

"My illness began so mildly and innocently more than ten years ago–as the years have passed I've developed more and more complications and faced several life-threatening episodes. I've been hospitalised five times for a total of over 13 weeks and now have chronic gastroparesis and paralytic ileus. I have been nil by mouth for 18 months; I've had three PICC lines lost due to rejection infection and phlebitis. I've had three central lines."
Female with ME/CFS

Severe Symptoms

"In her updated book on ME, Dr Anne Macintyre, herself a sufferer, describes the tragedy of misdiagnosis of children. In one case, Ean, who fell ill at the age of 11 in 1986, lost his voice and was virtually paralysed. Two years later, without warning, he was removed from his parents' home to be placed in the care of a psychiatrist and a paeditrician on the Isle of Man, where the family lives.

Despite a diagnosis of ME by other specialists, he was said to suffer from "school phobia and over-protective parents". At one point he was "let go" in the hospital's remedial pool in the belief that he would put out his arms to save himself.

After four months a terrified Ean was released, his condition unchaged. Following support from other doctors and his family, a variety of orthodox and alternative treatments including high doses of evening primrose oil and gentle physiotherapy, he has made a full recovery. The family has also won a long legal battle for compensation for his removal."
Daily Telegraph, U.K. 1992

The BBC program Panorama has exposed to public scrutiny the many cases of young people with ME/CFS who, with their families, become embroiled in medical disputes over punitive treatment regimes in hospital. As a consequence young people can face removal from families through court processes, and placement into foster care.

Such cases occur in Australia today.


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