Announcing "Severe ME, Notes for Carers".

Stonebird is proud to announce the launch of "Severe ME: Notes for Carers", a guide for people
involved in caring for those who have Severe ME/ Very Severe ME, focused upon front-line carers and those new to the disease. Caring for people with ME at the severe end of the spectrum, can be extremely challenging to get right.

A high level of carer skill and awareness is required; people this ill are extremely vulnerable to harm through the wrong approach or the wrong timing.

Book link :

This illustrated handbook is packed full of practical tips, insights and guides to help the carer understand the symptom experience, the signs and clues of deterioration and the specific hypersensitivities the person might experience, so that they can meet need, with awareness, in the right moment. The focus is upon maximising the opportunity for successful interaction.

The 241 page manual seeks to inform, inspire and, above all, uplift carers, through short, practical, easy to read sections, self-reflective exercises and contributions from fellow carers and those who are ill, from around the world.

There are “Notes” on:

The struggle people with ME face
How to care for someone with Severe ME
Employing and training carers
Creating a way forward
Caring for yourself

Greg Crowhurst, author, is an Educator, a Trainer, a Coach, with qualifications in Nursing, Experiential Learning, Training & Development, Counselling, Life Coaching, Web Design, plus an MA in Moral, Personal and Spiritual Development. Greg has spent the last twenty years caring for his wife, Linda, who has Very Severe ME.

As well as campaigning, representing, writing and conducting research on Severe ME for the 25% Group, East Anglia ME Patients Group and Stonebird, Greg has published two peer-reviewed papers on ME in The Nursing Standard and The British Journal of Nursing. In addition he built and published the first ever Severe ME App, the MOMENT Approach App. In 2015 he was a finalist in the prestigious British Journal of Nursing, Nurse of the Year Award.

This is his sixth book.


  1. I am only on page 26-already deeply mived by the sensitivity I read in and between the lines. This book is beautiful Greg.

    Nicky xxx

  2. Nicky - that is the most wonderful news!!! When I released the book I could only pray that it might touch people ;but you can never tell. It has been an anxious time, indeed, waiting for any feedback. Bless you Nicky, how good it is to hear the book is "beautiful" ! In so many ways you said it all, in your piece, in the book :"Be prepared to defend, defend and defend again the person you are caring for. You are their advocate in an often uncaring, uncomprehending world." That is the truth ! It is a never - ending battle, one that very few have any idea about, especially the courage it takes to keep going every day and never give up. I cannot thank you enough Nicky for you support, your contribution and now for this incredible feedback! Much lovexxxx


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