[KitKat]

It seems I'm on a mission I'm trying to advocate against the CFS part of the diagnosis. Let's say you have Lung Cancer, they do not attach the Chronic Fatigue and treat that, the diagnoses doesn't read Lung Cancer/CFS. Chronic fatigue is part of the disease. Why would they label ME with this, when really Fatigue doesn't even come close to how the sufferers feel? Why do they insist that ME sufferers need a graded exercise program and physicartic help, which treats the CFS NOT the ME. To put the sufferer through an exercise program and stress of going to therapy, just worsens the sufferer.....Doctors oath "Do no harm"

British Journal of Nursing, 2012,Vol 21, No 11.
Crowhurst G (2012) Care for Someone with Severe Myalgic

Encephalomyelitis. Stonebird, Norwich.

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.