Thanks to Lara for pointing out this one:
Now dead at the age of twenty-four and suffering terribly
since the age of twelve, young Australian Jenny Hill had
been through the medical mill since being labelled with the
ME/CFS wastepaper basket diagnosis that had done her health
prospects overwhelming and catastrophic damage.
In an excerpt delivered at her funeral service, Jenny Hill
wrote in 1998:
"I am 17 and I have had chronic fatigue syndrome for almost
6 years. Along with thousands of other children, teenagers
and adults I live in a world of pain, unimaginable fatigue,
paralysis and intermittent Alzheimer's. Despite medical
technology we are still a long way from answers concerning
the cause, the duration or the prognosis. It is one of the
cruellest and debilitating illnesses one could imagine. It
can last from one year, to proving fatal. At the same time
some doctors don't even recognise chronic fatigue syndrome
as a disease, but rather a mental state. It is not much
wonder sufferers become depressed when they see the whole
world passing them by. Life is going on without them. It
is like trying to catch an escalator that is just beyond
your reach."
A simple label to append and an easy box to tick that
generates phenomenal income for the psychiatric lobby,
countless hundreds of thousands - if not millions - of
patients worldwide have also been erroneously labelled
with the catch all wastepaper basket diagnosis of ME/CFS.
Jenny had in fact been suffering from MNGIE (mitochondrial
neurogastrointestinal encephalopathy).
Chris Hunter from the Alison Hunter Memorial Foundation
(http://www.ahmf.org/) writes: "In 2004, two weeks before
Jenny died, the diagnosis of mitochondrial neurogastrointestinal
encephalomyopathy (MINGIE) was confirmed. At the 2005
ME/CFS Research Forum, University of Adelaide, convened
by AHMF, Dr John Duley Senior Scientist, Chemical Pathology
discussed MINGIE in his presentation 'Diagnosis of
mitochondrial and metabolic disorders relevant to ME/CFS'
(http://tinyurl.com/24qsj5).
After Jenny's death and on 5 April 2007, Julie Robotham
published an article on Jenny's case in the Sydney Morning
Herald entitled 'Fight against the unknown'
(http://tinyurl.com/2ben5t). We quote extracts from
this article:
"Jenny first got sick in 1992, aged 12. A bout of flu
progressed into headaches and exceptional tiredness, and
by the next year, with no resolution in sight, she was
referred to a psychiatrist. Three years later a leading
immunologist still thought she was having trouble re-entering
normal life after being knocked around by a virus. He
prescribed gradually increasing exercise - a controversial
therapy for people with presumed chronic fatigue syndrome -
and a self-help book."
"...Jenny frequently felt unsupported and misunderstood,
even occasionally viewed with suspicion as the girl with
no good excuse to be sick."
"All you have is this awkward feeling this girl doesn't
fit in the hole people are trying to put her in,"
".. once the patient is labelled with a [psychiatric]
disorder, it's very hard to reject that diagnosis."
"To admit error, to backtrack from a dead-end, requires
humility and mental fortitude, especially if a patient
is displeased."
"Diseases don't read textbooks."
"Those who coast along on knowledge even a year or two
old risk missing a diagnosis that newer research might
have illuminated."
"It is an argument.....for regular, formal reaccreditation
of doctors."
> > Read the full text of the Sydney Morning Herald
article here http://tinyurl.com/2ben5t > >
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