Letters to the Editor, The Courier Mail Thursday March 7, 1996 (age 15)

“We’re Ill, Not Faking It”
While there was a lot of good and accurate information in Chronic fatigue enigma (Health, March 4), I take exception to the hurtful, unfounded cheap shots of the anonymous Australian Medical Association spokesperson and of Morris Towers.

I am a 15 year old girl suffering from Chronic Fatigue Syndrome and have been forced to give up the things I love to do, while my body’s abilities rapidly deteriorate. In just over 12 months I have lost flute, piano, choir, debating, youth group and hockey. I am never free of pain and, once a straight-A student, can now only get to a couple of lessons a week in one subject. I have loved school from the first day and there is nothing I want more than to be able to attend full-time, and to go out with my friends once again. The suggestion that I, as well as thousands of others suffering from CFS, (including footballer Alastair Lynch) “use CFS as a means of claiming sickness benefits or getting superannuation” is appalling and totally offensive.

During a recent flare-up I spent two weeks in bed, unable even to feed or bathe myself without help from my mother. How many teenagers would choose to go to the extent of having their mother spoon feed and bathe them when they are on holidays? There are NO benefits from faking an illness like this, and when people suggest that we are, I feel extremely degraded, frustrated and offended.

I have always been a very positive, content and happy person, and though I have grieved deeply for every one of the things I have been forced to give up, I remain so, even with this illness. The anonymous AMA spokesperson believes patients use the CFS banner as an out because they are suffering depression. Living with CFS can be hard to cope with, and I believe if a patient also suffers from depression, it is as a result of suffering from CFS, not the opposite way around.
-Shiloh Moore
Letters to the Editor, The Courier Mail, March 11 1996

“Dont Blame the Sufferer”
Shiloh Moore’s comments concerning Chronic Fatigue Syndrome (Letters, March 7) prompt me to write in support. How badly we respond to illnesses outside the bounds of current knowledge and how often we explain them by blaming the sufferer!

We may no longer believe that congenital blindness is caused by the sin of a childs parent, but barely ten years ago many mothers of infants with cystic fibrosis received their first specialist attention from the psychiatrist to whom they were referred due to their neurotic obsession that something was wrong with their child.

To tell someone suffering from the pain and bodily collapse of CFS that it is all in their mind is and age-old reaction to a condition we do not understand. To tell them that they are faking it is deeply wounding.

To allege that healthy, well-balanced, active individuals deliberately withdraw from work, learning and recreational activities to gain welfare benefits is cruel and ignorant.

Shiloh and her family have faced the scourge of this disease with faith, courage, determination and amazingly good humour. They and other sufferers need support, research and better understanding, not blame born of ignorance.
-Beverley Homel