Severe ME/CFS:
A Guide to Living

Home tutor, Helen Casey

As a Home Tutor I have worked with students living with ME/CFS to varying degrees over the past 7 years.  How I wish a guide such as this had been available for me to consult before I met my first student.  There are so many misconceptions and misunderstandings of this debilitating illness and as a tutor embarking on any programme of education for a young person with ME, it can be very difficult to comprehend what the sufferer has to contend with and how the simplest of tasks require an enormous amount of effort.

From an educational perspective this guide clearly explains the problems encountered with brain fog, memory loss and concentration, along with useful advice and suggestions.  To understand this is paramount when working with someone so severely affected. Formal education may have to be postponed, but much benefit can be gained from many of the practical activities outlined here or by simply reading to the student and interacting on a level as undemanding as possible for the individual.  As an educator this book would greatly enhance the comprehension of the difficulties and challenges an ME/CFS student faces in terms of learning.

I have not come across a definitive guide such as this, which outlines so methodically the many aspects to be considered and which deals with ME at its most severe. There is great detail on many levels in terms of practical help, with useful websites and contacts clearly highlighted.  The scope of the book is far reaching and well researched, with useful advice on financial aspects and the rights of the individual.
I found the tone of the book to be reassuring and encouraging, written by someone who profoundly understands the difficulties of living with severe ME/CFS, but who has managed to convey a sense that you are not alone with your illness and emotions, and that there is hope for your future recovery.

I would urge anyone working or involved with someone with ME/CFS to read this guide in order to further their understanding of the illness and its impact on the individual.  It would act as a useful reference for professionals and carers to consult regularly and it would reassure and support sufferers themselves on coping and living with severe ME/CFS.

Home tutor, Rachael Salter

This new book should prove an invaluable resource to people living with severe ME, and to their families and friends.  It is a comprehensive guide, which is very clearly written and presented, and it has a useful summary of key points after each short chapter.  Readers should find the index and appendix of useful contacts very helpful in accessing further information and support. Education professionals such as Home Tutors, who may have had little prior experience in working with pupils with severe ME, will find this guide contains clear and practical advice. The chapters on Activities and Activity Management should be particularly helpful.