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).