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