Betrayal of the Severely Ill?
Appendix 7: Severe Symptoms of ME/CFS
Severe symptoms of ME/CFS include:
- Severely limited cognitive function
- Intractable headache oftein assoicated with facial swelling particularly around eyes
- Atypical seizures
- Grand mal paresis
- Paralytic ileus
- Reverse peristalsis
- Severe angina
- Marked weight loss or gain (up to 40% of body weight)
"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 19 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 phebitis. I've had three central lines."
Patient with ME/CFS.
"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 paediatrician on the Isle of Man, where the family lives.
Despite a dagnosis 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 unchanged. 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
"Inexcusably, the lack of results with tests led some of my colleagues to say: 'We can't find anything wrong. Therefore, you're neurotic!' Instead of understanding that they (the researchers) might be ignorant - there could be an aspect of pathology they haven't understood." Professor J. Dwyer, 12 March 1996
Return to the AHMF Letter to the RACP.
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