Severe ME/CFS:
A Guide to Living

Patient, Frances Goodchild

Never before has such extensive, understanding, empowering and detailed help been available for those with severe ME.  With a wealth of information on almost every symptom and problem imaginable, it is a book that no severe ME sufferer should be without.  It would have been an incredible help to me and my family when I was severely affected; both on a day to day basis and during the sudden, desperate crises.  If you have severe ME or are recovering from severe ME, you must buy this book – it will bring huge relief and reassurance.

The most comprehensive, in depth, all round guide ever written with regard to severe M.E., covering practically every aspect and area you could think of. It is written in an easily accessible, yet professional, style, and the ‘Key points’ at the ends of chapters and alphabetical index make it easy for those with little energy to find what they need; as well as for anyone else who needs a quick reference.

It is reassuring to discover that a lot of the symptoms and problems that you may be facing are not unique to you; and moreover, to find a wealth of support for each. Detailed descriptions of treatments, medications, and disability aids abound – all under one roof. Immense care and detail has been taken on every subject. The extensive links and references to organisations, charities, shops etc. mean that, at last, a lot of the searching has already been done for you; there is even an index for suppliers. The detailed guidance on benefits, grants etc. and applying for them, as well as on getting what you need from your support team, is extremely useful.

The chapter on activity management is particularly innovative, to help you to avoid the ‘boom and bust’ that is so frequent in those with M.E; as are the chapters on managing the complicated emotions that come from coping with such a severe illness, and the strain that is put on the M.E sufferer and their carers and families. This has never been covered to such a depth exclusively with regard to very severe M.E.

It is also an invaluable guide for health professionals and others caring for someone with severe M.E. It takes a modern approach to the role of the patient and the patient’s wishes, as well as introducing those new to severe M.E to many of the extreme symptoms and other difficulties that it encompasses.

It is an empowering guide that will make a huge difference to those suffering from severe M.E – especially to those who have recently become ill – as well as to everyone around them.

Patient, Tarsam Singh

At last, a book specifically about severe ME, for people with severe ME, written by someone who, having been a sufferer herself, has the inside dope on all the myriad of issues, emotions and urgencies involved.

A thoroughly researched and detailed investigation into every layer and implication of severe ME enhanced by continual signposting to an extensive range of further resources and support available. This is a clear and comprehensive guide, written in an accessible and reassuring tone that highlights our rights and emphasises our needs.

If, like me, you are used to having to garner information about coping with the illness in a beg-steal-borrow method from all manner of diverse and generic materials, it is such a boon to have a book which reads with you in mind and makes you feel so empowered and acknowledged.

Collingridge has provided a necessary, effective, and generous guide that I can easily foresee becoming a crucial support tool in managing the illness and requisite reference for severe ME. Finally, everything you wanted to know about severe ME but were afraid to ask because your brain would cave in as soon as you tried to formulate the question.

Patient, Liza-May Marshall

This guide to living with severe ME is a vital source of information for any patient and their carers.  As a former severely affected sufferer of ME, I found the information comprehensive.  Being severely affected is a confusing, upsetting and painful time of your life, there is much anxiety and difficult fact finding required to cope with the issues the illness creates. Once something becomes a problem then you and your carer start the frustrating task of trying to find solutions that will ease the pain, distress and worry, the task alone often creates more misery.  This guide has it all, it gives you the information you need for your current situation, but also gives you a heads up on situations that might affect you in the future so you can be prepared and prevent some of the discomfort and uncertainty.  It allows you the practical information to deal with your illness, so you can concentrate on staying strong and getting through this distressing part of your life.

Patient, Vikki George

This is the book every patient with severe ME has been looking for. How I wish it had been available years ago. If only my family and I had been able to refer to it when we felt so lost, helpless and alone… what a difference it could have made to our daily struggles and my symptoms. Every single patient with severe ME should be given a copy.  No aspect of life with severe ME is ignored, making it a vital support tool for all. The reference book style will make it easy to refer to in any crisis and for any problem. It is so comprehensive that, even after 14 years of illness, I have learnt and benefited from it. Understanding, practical and detailed this guide offers invaluable help that isn’t available anywhere else.

Patient, Lesley Garrity 

This is a well written comprehensive guide to living with severe CFS/ME. It covers every aspect of the illness in detail, and would make an excellent resource for both patient and carer alike. It is an excellent source of knowledge which is much needed to fill a gap in the market.  My life and those of my family would have been made so much easier if we could have had access to such a book when I was struggling with severe CFS/ME. Thankfully future sufferers will have this much needed source of important information to refer to.

Patient, Amy McLeod.

The book has been reassuring for me and my family in helping us to understand what might happen next and how bad things might become and this gave us some sense of control.  There are things like eating and drinking which I had a big problem with where the book helped my parents with good advice on how to manage the situation.  We all felt abandoned as a family by the health service once we had come out of hospital, having no support from anyone and the book was one of our main sources of advice, like having someone to turn to.  Having not been in this situation before we did not know where to turn for help and equipment and this book provides guidance and practical ideas. The book helps you to know that it is ok to feel the way you do and others are experiencing similar situations.