ANDERSONTOWN NEWS 24/4/08

Research and support are needed for ME sufferers, Andersonstown News,
Belfast, 23 April 2008

I was hoping you would be able to help me in raising
much needed awareness about ME (Myalgic Encephalomyelitis) .

This is quite personal to me as I have a 15-year-old son housebound to the
extent of bedhound for past three years.

ME is a classified neurological illness which has been recognised by the
World Health Organisation and there is still no funding from the Department
of Health for this illness.

ME is usually referred to as the 'sleepy sickness' but is in fact a serious
neurological illness.

Just to gave You all some facts of ME; it's not a sleepy sickness, it's not
yuppie flu. It is, in fact, a complex disorder, characterised by profound
fatigue that doesn't get any better with bed rest and can actually get worse
with physical and mental exertion.

Here is a list of some of the many symptoms that my son has to endure on a
daily basis: sleep reversal, recurrent mouth ulcers, sore throat, trouble
with his vision, sensitivity to sound and light, severe headaches, chest
pain, joint and muscle pain, memory and concentration difficulties to name
but a few.

There is no known cure. ME has had a bad press as there is not yet a
diagnostic test. Many kids can miss out on education and are then completely
isolated from the outside work.

ME sufferers cannot live normal life.

If anything is to improve for ME sufferers, I think one of the first ports
of call is to get the NHS to recognise and support the extreme debilitation
that sufferers of this terrible illness have to face on a daily basis.

Social contact

Kids Who develop ME In their teens go into adulthood having lost all their
social contact, living each day in pain with very little understanding or
help from the medical profession.

Although it is recognised by the World Health Organisation, much of the
medical establishment refuses to accept this and brush it aside as a
psychological disorder.

This is disgraceful because there is now much scientific evidence that ME is
a complex physical disorder of the nervous/immune systems, possibly with a
viral cause.

Very little help is available on the NHS and sufferers and their carers are
usually left to cope on their own whilst their lives fall apart.

Trust me, I know, I have watched it destroy my child's life.

Conference

There is also an upcoming conference on April 28 in London and I'm appalled
to see that the majority of speakers
at this conference are either psychiatrists or clinicians from
psychiatric/ psychological backgrounds.

Only one ME charity has been invited to speak,being given only 25 minutes.

So the opinions and views of the majority of ME sufferers in Northern
Ireland and Britain once again will not be heard.

How can a conference, which is supposed to take a broad look at Chronic
Fatigue Syndrome, be so completely biased towards psychiatry/psycholo gy
opinions/treatments .

I am gravely concerned that this conference will therefore influence people
into thinking that this is a psychiatric disorder and should be treated as
such.

This will have implications for the management and treatment of this illness
for the thousands of people in Ireland and Britain (approximately 6,750
people in Northern Ireland) living with a diagnosis of Chronic Fatigue
Syndrome.

It will no doubt mean that therapies will continue to be offered to
patients, which are unhelpful and may actually cause harm to these
physically ill people.

This is an insult to my son, to me as his mother and the thousands of other
ME sufferers who are left to suffer in silence.

Treatments

No more, this has to stop! Without research into appropriate treatments, the
possibility of a cure will remain a dim and distant hope for sufferers and
we as a family can't bear the thought of this as we watch, and continue to
watch, the suffering that my son David has to endure on a daily basis.

Hopefully, you will be able to help me highlight this.

Many thanks for taking the time to read this.