An Australian mother* explains the difference between how her daughter was treated by medical staff when she had cancer and when she later developed Myalgic Encephalomyelitis - and the devastating additional burden the ignorance and psychological propaganda surrounding M.E. has caused her child to have to bear.

Sadly this is far from being an isolated case; this type of appalling mistreatment and abuse of very ill and disabled children (and adults) with M.E. is all too common in Australia, and around the world.

April 7th, 2006

My daughter developed kidney cancer at age 9. It was a very large cancer, very sudden. We were so shocked, the whole family. But we had a great deal of support, a whole support network, medical staff knowing exactly what was happening and helping us to understand, free accommodation and transport in the city (we are country people), and the support for my daughter herself was constant and so important: lots of positive support and friendliness from medical staff, whole areas set up for cancer kids, to make the experience less horrific, special school provisions, from the beginning we had all the support we could possibly need. And that made all the difference.

Although we were still shocked and desperately worried, and it was a ghastly time, it was so much less of a strain on all of us because of the support we received. My daughter herself has very few bad memories of that time, and was able to remain positive throughout, and feel good about herself for being strong and fighting cancer.

However, she didn't get better. Her cancer results were good, but she was still sick, sicker really, because during the cancer treatment, she might be paralyzed by the chemo (it affected her nervous system), throwing up or feverish or in pain, but this came and went. The medical staff space out the treatment so it's doesn't wear you down too much. But now, she was just sick all the time, feverish, in pain, exhausted, dizzy, confused, and of course now we know that was ME. But then we had no idea.

And it started: instead of being the brave kid who had fought cancer so hard, she was a kid with problems. "So there are problems at school, huh? You're not doing well at school?" the doctors started saying in a very unpleasant way. She was really taken aback. She was extremely good at school and keen on everything. They knew that.

"So there are problems at home, huh? Something wrong in your family?" We couldn't win. If the doctors didn't understand it, then it was the child's fault. This is, I think, the cruellest thing that has happened to her. Her self-esteem was attacked, she was questioned repeatedly about personal things, and told she was sick because she didn't try hard enough, because she wasn't good at school, because she didn't want to be at school, because her family was bad, because she liked being sick.

These were so far from the truth, I was amazed that anyone could even imagine them. This was the same child who had struggled so hard with cancer, kept her chin up all the way, and been admired by the same medical staff for her courage, positive attitude, talents and emotional maturity. Now, being sick was her fault.

Cancer is vicious, but you die or get better, basically. Chemo is awful, but you don't suffer all the time, only in bouts of months. You are not suffering at a terminal level for decades, which is what happens with ME.

And you don't get blamed for this horrible thing that has happened to you. That is indeed the cruelest blow. My bright, happy, enthusiastic daughter, who beat cancer, has now had to beat depression, which she didn't have with cancer, and which she didn't have with ME, until she was blamed for her own illness and received absolutely no support, despite being much sicker than she was when hospitalized with cancer. She has developed anxiety problems, which she never had before. She is afraid of doctors, when she had such a happy relationship with all the cancer medical staff. She wants desperately to go to school, despite being told repeatedly that she must be academically unsuccessful, socially inept and lazy.

And she is so much sicker. I have seen her paralyzed with chemo, running high fevers, and almost cut in half after the major operation to remove her left kidney. I've seen her lose her waist-length beautiful hair, have to spend months away from her home, school and friends, and deal with so much stress through the cancer. I've seen her suffer before, and it's the hardest thing any parent can have to watch.

But I've never seen her beaten before. Cancer did not beat her. But ME has.

Yes, ME is a horrifying illness, causing continual terminal suffering for years and years. It's much worse than cancer and chemo.

But I still don't think it would have beaten her like this, destroyed her self-esteem, left her shivering in the dark, if she had been treated like a human being.

Suffering and bewildered, she was blamed for her own illness and treated with hostility by people who have sworn an oath "to do no harm".

My young daughter not only has to cope with the continual suffering and incapacity of ME, she has to cope with being disbelieved, taunted, insulted and marginalized. That's what has beaten her.

I found her crying in front of the TV, the Commonwealth Games were on. "I try not to think about it, I know it's not useful, but I always loved my sport. I dream about being back at school, with my friends... then I wake up."

But of course, she's a liar, isn't she?

[*Name supplied]