Jane Colby, a former severe ME sufferer and Executive Director of the Trust,
is author of the biggest study of ME world-wide.
She said: "Our children are
so brave. They may be constantly in pain, too weak to eat, fed through a
tube and forgotten by friends. Many still face hostility from doctors and
teachers who do not understand their illness. The world needs high quality
medical research into this terrible disease. The Trust is helping to fund
the first biomedical study in children, but this is a drop in the ocean.
Government funding is necessary."
Exactly one year ago, Terry Waite CBE launched the book Young Hearts for the
first Young Hearts Day. A unique collection of inspirational poetry by
children and young people with ME between the ages of 7 and 26, it was
inspired by Jade Louise Scarrott, a 14-year-old member of the Trust who was
tragically killed in a road accident.
It was completed by the Trust and
fully illustrated in her memory.
In his Foreword, Terry Waite wrote,
"Life is not fair and often we cannot
understand it.
Suffering comes to all of us but not in equal degree.
Some certainly suffer more than others through no fault of their own.
All we can
say with certainty is that so very often something creative can emerge from
the deepest grief."
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To see Young Hearts, go to
www.tymestrust.org
ME is a disabling neurological illness thought to affect 25,000 children in
the UK.
It is the biggest cause of long term sickness absence from school.
You can see a selection of
the stories from ME sufferers in our
ME Stories section.
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