Well done Greg. I am so proud of you!

Few people really know the true nature of the suffering of Very Severe ME, where too quick a
movement, a quiet noise wrongly timed, an action, even slightly wrongly executed, can have devastating physical consequence, leading to increased symptoms and deterioration.

Greg Crowhurst is one of the people who absolutely does know and has not been afraid to do something about it.

He has always promoted a pathway of partnership and respect. He has learned the only way to support and be with someone Very hypersensitive with Severe ME, is to approach with profound flexibility and patience, waiting for the right moment to interact and help meet needs gently and tenderly.

On 20th March 2015, to our delight, Greg was awarded third place in the prestigious BJN Nurse of the Year Award. This is an amazing achievement for an unwaged Carer, isolated from the world by the necessity of caring full time for me, his wife, with Very Severe ME.

We were both stunned and excited to hear that he had been short listed. For it meant not only an acknowledgement of his own compassion and commitment over two decades to Severe ME, but also it feels like an important, much needed breakthrough, in recognising the needs and neglect of the neurological disease Myalgic Encephalomyelitis and the people most severely affected in particular.

We hope it shines a light on the truth: that we are seriously physically ill and isolated from mainstream medicine, that our physical health is at risk all the time that nurses and the medical profession generally do not understand or properly recognise our illness and understand how to care for us. It acknowledges there is a need and Greg has been raising awareness and shining a light on that need repeatedly till it has been seen and recognised, by this main stream prominent event.

Greg has always had a passion for truth and an enthusiasm for life and learning that continually pushes himself to grow and develop new skills, new perspectives, to reach out in love and understanding, to forge genuine and caring relationships with all he meets, to develop new and better understanding and to challenge both himself and others to recognise their own skills and abilities, to be better professionals, to understand and empathise as much as possible with some of the most vulnerable people in the care and health care system.

This is demonstrated clearly in the many ways he has tried to engage with the medical world, the political world and society generally, to raise awareness of our illness, Myalgic Encephalomyelitis, especially the experience of those most severely affected and highlight its clinical neglect and to continually counteract the misrepresentation, misinterpretation and misdirection and mistreatment that is rife.

Some of the ways Greg has supported us all:

The Secretary of the 25 % group for many years, including writing many documents, papers and articles on Severe ME and Carer issues. www.25megroup.org/

The Gibson Inquiry Severe ME Survey and much remembered presentation.
http://www.erythos.com/gibsonenquiry/

The EAME survey. www.stonebird.co.uk/eame.doc

The Stonebird website ( www.stonebird.co.uk)

Homebound Music website http://homeboundmusic.co.uk/

Holy Way website http://www.holyway.co.uk/

Free Carer Documents

Three Severe ME books with the third book specifically for carers out now, plus three spiritual books and many, many articles.

Here is the link to the new book, which is an important contribution to raising awareness of how to care for those most severely affected by Myalgic Encephalomyelitis.

http://stonebird.co.uk/Notes/index.html

This is a more in depth book on Severe ME:

http://www.stonebird.co.uk/severemebook/severeme.html

The only peer reviewed article on Severe ME, recommended by NICE.

http://me-foreningen.com/meforeningen/innhold/div/2012/08/Crowhurst-Severely-affected-i-Nursing-Standard.pdf

A new, innovative free Severe ME App on the MOMENT approach.

http://www.stonebird.co.uk/moment/index.html

This is what Greg Crowhurst has done within the field of Severe and Very Severe ME, where there are no reference books, where there is no body of medical expertise, where there is no cure, no treatment, little or no respect, where many kill themselves not from despair or depression but from sheer physical torment and medical neglect or die from severity of symptoms, underlyingly because of a lack of interest and input from the research and medical community, from the cover up that has gone on for the last three decades of a neurological disease, where life is desperate in every moment of every day, yet health care and services are weighed on the balance of belief: whether an individual practitioner, shockingly, believes the person is physically ill or not:

Greg has represented us all for over two decades. He has witnessed first hand the misinterpretation, arrogance, harm, abuse, neglect, denial, mistreatment, misinformation, because he has cared for me full time day and night through all this time and come to have a unique and intense experience of the truth of the disease Myalgic Encephalomyelitis and its cover up and misdirection by fatigue interpretation, all the time fighting for change and hope for myself and everyone else.

Let us not forget that Greg represents the unseen, the hidden, the ignored, those unable to be reached, often without help or misunderstood and continually shows he cares, he knows, he sees, he understands and he fights for a better system, founded on the truth and true nursing practices inspired and initiated by Florence Nightingale herself. Greg is a true nurse who deserved acknowledging for his total and utter commitment to nursing and to people with Severe ME.

Sadly he was unable to attend the awards, in person, due to the great distance and difficulty of getting there, alongside my care needs, paralysed by the slightest noise and unsafe to leave, however a close colleague very kindly collected the certificate on his behalf.

Greg has received many congratulations and uplifting personal statements from people in the ME community. And a very special wooden star saying:

" A star 
through and through
For everything you do
You will always be 
Nurse of the Year for us."

What more could anyone say?

Well done Greg and thank you. I am so proud of you!

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