The Book

Claire and her Mum Anita came up with the concept of the book Surviving Severe ME when Claire was bed bound with ME. They began to feel very frustrated that the medical profession could offer almost no help to them. They had to gather advice from other sufferers and their carers on ways to deal with the illness and its many varying symptoms. They decided they wanted to compile the information and originally intended to put together a leaflet with the tips they had discovered; but the more they examined all they wanted to include, the more they realised that they would need to put together a complete book. What came about was a reference guide which sufferers could use to look up how to cope with the many aspects of life with severe ME.

Originally printed by the Association of Young People with ME (AYME) the book was specifically aimed at young people; but over the course of time Claire has adapted the book to be suitable for severely affected ME sufferers of all ages. Claire wanted to make the information available for free to people across the world and so has put together this web site.

Download the book

You can download the book by clicking the link below. It will open into a new window as a pdf and then you can save it or print it off. Please do not reproduce the work in any form unless for personal use or with the specific written approval of the author.

Surviving Severe ME by Claire Wade.pdf

 

A work in proGress

The book and web site are a work in progress which means they are constantly being updated and adapted. If you have any tips you would like to share with others then please get in touch.

contact@survivingsevereme.com

Feedback about the book

" Your book has been inspirational to us.
We feel far less helpless as a result of reading it.
Thank you so much. We shall quote passages to our doctor and specialist as necessary. You give us and our daughter hope. Well done! We hope you yourself will be encouraged to carry on the fight until a "cure" is found. What you have written is so helpful and we are so grateful."

"We got the severe M.E. guide and we are really pleased with it & it will be so very helpful & useful it will no doubt be going round the family for them to read, & the drawing of the different sitting & lying positions are really great & a godsend we have tried them since it came and they are so much more comfortable when you have to spend so much time in bed It has also given me some more ideas of what to do with my bedroom because I spend weeks & months in there we can now make it more interesting for me."

"Many thanks for this fantastic guide! A great reference to dip into, lots to think about & help improve our son's life. We will be showing it to the home tutor & specialist doctor who visits our home as it should help them to understand even better & help other ME sufferers that they also see."

Review of the book

Read the Action 4 ME review here.

www.afme.org.uk/res/img/resources/IA%2051%20surviving%20severe%20ME.pdf

 

Disclaimer

 

This book is written by a young person who was severely affect with ME and is compiled as a result of personal experience and research of other young people with ME and their families. It is intended for information and guidance only. It is not intended to replace medical advice. Readers are strongly urged to consult a professional medical practitioner for a proper diagnosis or assessment before trying any of the treatments or medications outlined. As with all medications, always consult your GP, specialist or pharmacist and tell them about other medications or herbal preparations you are already taking; always read the label and patient information leaflet.

The contributors to this booklet are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author. No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author.

Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.