Tuesday, June 16, 2009

Beyond Fatigue



Island News:

May 18th 2009

Beyond fatigue

Walk in to Denise Harrison's home in Nelly Bay and
one thing you might notice is a shelf full of trophies
- awarded for success in tennis, netball, indoor
cricket and a host of other strenuous activities. Look
further and you might also notice the number of
beds, chairs, pillows and mattresses scattered
through the house and beyond into the garden. They
are there to provide resting places for Denise; for her
life has changed from one characterized by active
involvement and success in sports to one in which
every effort, almost every movement, has to be
carefully considered.

Denise is one of an estimated 80,000 in Australia
who suffer from ME, Myalgic Encephalomyelitis,
otherwise known as CFS or Chronic Fatigue
Syndrome. This month is International ME/CFS
Awareness Month.

To date, there is no specific test for this complex
illness, which affects multiple systems of the body
and, in particular, the nervous and immune systems.
Diagnosis is by way of symptoms, which often
include not only a bone-crushing, relentless, total
mental and physical exhaustion, but also short-term
memory and concentration problems, difficulty
reading and writing, loss of balance, problems
focusing, ringing in the ears, extreme sensitivity to
light, sound, temperature and smell, un-refreshing
sleep, severe muscle and joint pain, nausea,
abdominal cramps, palpitations, general malaise and
flu-like feelings, and sensitivities to foods, chemicals
and medications - to name but some.

And the even worse news is that, as yet, there is no
cure and only limited effective treatment. A few
sufferers recover completely, others are able to
reclaim part of their lives but face the possibility of
relapses, and for others it is, literally, a death

For Denise, the disease came on slowly. Difficulties
with memory, developed into finding that she could
no longer participate in sports as she had. Within
two and half years, she was in a wheelchair, finding
even taking a shower devastatingly tiring.

Often, to the fury of sufferers and their carers,
ME/CFS is in some circles - including some (but not
Magnetic Island) medical circles - regarded as 'all in
the head' of the sufferer. Patients are subjected to
behaviour therapy or exercise regimes, both of which,
according to medical reports, often make things
worse. Some are seen as hypochondriacs or
attention-seekers. In worst cases, patients are
forcibly incarcerated in institutions for the mentally
ill and children with ME/CFS are taken aware from
their families. This, despite the World Health
Organization and thousands of medical reports
confirming the neurological or physical nature of the

Magnetic Island doctor, Sarah Lythgoe, says "People
need to be aware of ME - which is a physical illness,
and one which most GPs would come across at some
stage". She went on to say "Sadly, as with so many
medical conditions, many of the questions about
ME/CFs are still unanswered. The important thing to
realize is that people with this illness are not
malingerers, they are genuinely suffering physically
and deserve understanding and compassion. And
there needs to be more research into the causes and
treatment of the disease."

With a wry laugh Denise noted that one of the
extraordinary responses of some people to her
illness has been not only skepticism but also envy.
"People would call me lucky because I didn't 'have' to
work." Little did they know that Denise would have
loved (and needed) to continue working - and,
indeed, is still hoping to get back to part-time work.
"It is hurtful when friends call you lazy because you
need to go home to bed" she commented.

Like many others, Denise finds the ramifications of
the disease distressing - unable to work she
confronts continuing financial difficulties. She finds it
hard to maintain social contacts because going out
often takes too much energy, and she attributes the
breakdown of her marriage to contracting the
disease. Not surprisingly, for many ME/CFS sufferers,
the symptoms and reality of living with the disease
lead to severe depression, and others believe
depression to be a result of the clinical impact of the
disease on the brain.

Denise has come to terms with her illness in the only
way she can; she has learned to live with it. Like
others, she has learned to 'pace' herself, to live
within her limits and schedule long rest periods
around periods of exertion - and to appreciate what
she can still do.

And, until such time as the medical profession can
unlock the mysteries of ME/CFS, tens of thousands of
people around Australia are having to do just that,
while they wait and hope for a cure.

For further information: www.mecfs.org.au

Story: Wendy Tubman

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