British Journal of Nursing - Comment on Severe ME


British Journal of Nursing, 2012,Vol 21, No 11


COMMENT

Carers Week: unpaid, but as
professional as they come

 (Extract)

When I qualified as a registered nurse back
in 1984, it was with a fierce pride; I was a
professional.

Thank goodness, for it is that professionalism,
instilled in the nursing code, that has carried me
through the last 18 years of caring for my wife full
time. As I explain in my new book, Care for Someone
with Severe Myalgic Encephalomyelitis, to be a carer, I
choose to commit to:


Be brave; Be open; Be true; Be strong; Be alive.

Bravery is called for during every minute of every
day, when you care for someone with Severe Myalgic
Encephalomyelitis (ME). It takes bravery to look
into their eyes and see the suffering; to respond with
kindness and gentleness; it takes bravery to speak up.
You cannot undertake the carer’s journey if you are
not prepared to respond instantly and compassionately
to the needs of a person with Severe ME, it is crucial
to pay attention and to be fully present.

To have ME, in the current climate, is to be
vulnerable to misinterpretation, misrepresentation
and mistreatment. A requirement, then, is to protect
my wife; this involves a responsibility to seek out
professionals who know the biomedical truth of
ME, who use proper diagnostic criteria and who
respect the complex physical nature and multisystem
dysfunction of the disease. Those professionals are not
easy to find.

Nurses, I find, often fail to distinguish between
neurological ME and psychiatric Chronic Fatigue.
In my experience, the profession is shockingly
entrenched in promoting a therapeutic, psychiatric
approach to ME- which places my wife at risk.

There is an urgent need to develop an appropriate
biomedical model of nursing practice for people
with Severe ME if practitioners are to avoid tragedies
like that of Sophia Mirza, who died from ME, after
suffering appalling treatment at the hands of doctors
and nurses following inappropriate sectioning under
the Mental Health Act for 2 weeks in 2003 (Harding,
2010).

Last year, well known Severe ME sufferer, Emily
Collingridge, a young woman, full of ideas and
creativity, so alive in a body aflame with pain,
encouraged me to continue to speak out and
inspire others through my website, emphasising its
importance. She too has now died.

Meantime my wife, who cannot bear to be touched,
who is tormented by acute hypersensitivity to light,
noise, chemicals, who is in continuous physical pain
all over her paralysed and numb body, whose days
are spent in an endless agony, not knowing what to
do to cope, to get through, is deteriorating in front
of my eyes.

Because of the ambiguity that surrounds the illness
in the minds of many medical professionals, the
Health Service, for the person with Severe ME, is
currently not a safe place.

My early training in an old ‘mental handicap’
hospital inspired me to validate and value the person
and their experience, as well as to speak up for
change. Today, this is not happening in ME. The
nursing code demands that I speak out about it.

(...THIS IS AN EXTRACT; TO READ THE FULL ARTICLE PLEASE
SEE THE British Journal of Nursing, 2012,Vol 21, No 11.)


Crowhurst G (2012) Care for Someone with Severe Myalgic
Encephalomyelitis. Stonebird, Norwich.

Harding L (2010) ‘She went into a hellhole’: A mother’s candid
account of her daughter’s battle with ME. http://tinyurl.com/
cs5pkkx (accessed 6 June 2012)

For more information about Carers Week (18– 24 June
2012), visit http://carersweek.org/. Further details about
ME and Greg Crowhurst’s book can be found at
http://www.stonebird.co.uk/howtosevereme.html

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