Severe ME/CFS:
A Guide to Living

Carer, Mary*

If I heard someone, anyone, had severe ME I’d buy this book for them myself. I just wish it had been available when we so desperately needed it; we would have been prepared and everything would have been a lot less frightening. Our son was devastated that family members could not understand what he was going through – had they been able to read this book, it could have been so different.  The medical professionals involved with us had no knowledge of very severe ME and no real comprehension of the difficulties it creates and so I worried constantly that they would think I was neglecting my son because I wasn’t able to wash him regularly; if this book had existed for them to read, all that worry could have been taken away.  Patients, carers, doctors, nurses, teachers and social workers all need copies if patients are to get through this devastating level of ME.
* Mary asked for her surname to be withheld to protect the identity of her son.

Carer, Sarah McLeod 

M.E. is a very frightening experience.  I know that this book will be an invaluable source of information for parents and medical professionals, as well as helping sufferers to feel like they are not on their own.  We will be taking on board lots of your advice over the next few months – thank you for creating this lifeline.

Carer, Christine Hudson

This book is the most comprehensive reference and support document imaginable.  It contains a wealth of knowledgeable advice for anyone involved with severe ME, whether they are parents/carers or professionals.  Anyone facing severe ME for the first time is shocked by the difficulties faced when trying to do the simplest of tasks required for daily existence.  This book shows the reader that they are not alone and are not the first to be facing such difficulties.  This in itself if very reassuring, and the contacts for a variety of help and support items is unavailable elsewhere.
I have cared for my daughter for over 10 years in a variety of situations, from 80-90% ability, down to 0% ability for a number of years.  I have encountered most of the situations discussed in the book but would still find many of the websites and information useful.

The guide to DLA forms is invaluable, particularly if it is your first time filling in the forms, as this can be a daunting task which takes a lot of time and effort, and you can still give the wrong type of information and get the application declined!!

Carer, Chris B*

This guide to severe ME is a unique and fantastic resource.  It is sensitively written and eminently practical and positive. How I wish I had had this book at my fingertips when my partner had severe ME …! It is an absolute ‘must-read’ for anyone who is involved in any way, personally or professionally, with a person living with severe ME.
Certainly, had my partner and I had this book to refer to when we needed it, our lives could have been made considerably easier. When I look back at that time now, I realise how much time I spent researching aids, appliances, medication, sources of support etc for both my partner and myself, because even when the health professionals around us were trying to be helpful and professional, more often than not they were hampered by their own lack of knowledge of equipment and resources as well as their poor understanding of ME and my partner’s individual needs. Had we had this book to refer to as a short-cut to getting the information we needed and sharing it with the professionals, we could have spent MUCH more quality time together, enjoying each other as partners instead of being patient and carer more often than not.

The sections of the book specifically for partners of those with severe ME  really highlighted for me some of the opportunities for intimacy which my partner and I missed because we were otherwise bogged  down and totally exhausted with the grind of daily life – one of us with severe ME and the other with moderate ME. The suggestions made by the author in this section of the book are all eminently sensible, practical, reasonable and doable and I can heartily recommend them to all those who have a partner with severe ME.

Being able to refer to this book and access the info when we needed it would have brought other benefits, too. As principal carer to my partner and living with moderate ME myself, I was constantly chasing my tail, looking after my partner’s needs and consequently was unable to pace and rest as much as I needed to. With more free time for myself I would have been able to look after my own health and recharge my batteries as a carer, too.

Sharing the book with our other family members (actually, make that BUYING each member of the family his or her own copy to refer to!), especially the teenagers, siblings, cousins and grandparents, who may have struggled to understand what we were going through, could have improved relationships all round and given much-needed extra support to my partner and myself.

How I wish we had had this book sooner… but for all those people out there still living with severe ME and their carers/friends/loved ones, all I can say is, better late than never! Buy yourself a copy of this guide (or indeed several copies), it could literally change your life and you won’t regret it for a minute. Well done, Emily and thank you! You really are a star!
*Chris has asked for her surname to be withheld to protect her partner’s privacy.