Short-listed for Nurse of the Year 2015

Myalgic Encephalomyelitis  is a secret hidden Neurological  illness that is poorly diagnosed and misrepresented as fatigue. The Chief Medical Officer confirmed over  twelve years ago that  ME  should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease and that there is serious medical neglect of the most severe patients. (http://www.erythos.com/gibsonenquiry/Docs/CMOreport.pdf)

Today research into Severe ME  is still almost non-existent, the  illness has been so frequently misinterpreted and understated, that the standard knowledge and provision that should be there just isn't.

How do you offer care to someone in so much physical pain, that even the tip of their nose throbs in agony, who cannot bear light, noise, sound, touch, who is so profoundly hypersensitive that  every move you make can be a torment, threatening to push them into even more extreme depths of illness ?  

Twenty one years of experience, of caring full-time, day and night,  for my wife , who has Very Severe ME, while actively reaching out to others, through my videos, my website Stonebird, the articles and books I have published, my ongoing advocacy and charity work have gone into the  drafting of an innovative nursing strategy detailing how to care for patients with Severe/Very Severe ME, based on a moment by moment approach.

For over two decades I have been  reaching out to people on the edge of service provision and healthcare and society, speaking out, pushing boundaries, innovating, raising awareness of the fundamental truth of ME as opposed to Chronic Fatigue, trying to protect and preserve the biomedical integrity of the illness and the needs of  patients. 

As a fiercely proud Nurse, I can claim to have been true to Florence Nightingale's instruction to herald the way to a “new world, than stand idly on the shore.” (Crowhurst 2012, Carers Week: unpaid, but as professional as they come, British Journal of Nursing , Vol. 21, No. 11 , pp 642–642). 

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