Severe ME/CFS:
A Guide to Living

Specialist Occupational Therapist, Beverley Knops

This book will be a valuable resource for patients, families and Health Care Professionals. Although sections of the book can be dipped into for specific advice I would recommend readers particularly less experienced Health care professionals read it in its entirety prior to giving advice on management.

On first glance the book gives detailed advice on how to make activities possible through mainly adaptive methods i.e. changing methods and use of equipment. Although this advice is extremely well documented with links to good resources it is important not to become to heavily reliant on equipment and/or avoid activity as this may make rehabilitation more difficult.  This point infact is clearly made within the introduction and on more detailed reading it is apparent that the author is mindful of this throughout the book. The chapter on activity management provides excellent information on how to set baselines, grade up activities and balance these activities with adequate rest. Examples used e.g. increasing time spent listening to audio books are relevant to this group of patients and illustrate the process well. It also provides useful information on setting realistic goals and analysing activity effectively. The skill of breaking up activities to make them achievable is continued in the chapter titled Activities and Special Occasions.

The guide to the Disability Allowance claim form is an excellent addition to the main text. I have spent many hours advising people what to include in their claim forms. This information is laid out clearly and will assist people in matching the varied and complex symptoms and effects of CFS/ME with the standard form.

I think this book would be best used collaboratively between the patient and health care professionals. This will enable informed choices to be made regarding future management.

Consultant Specialist Occupational Therapist and Lead Clinician for the Leeds & West Yorkshire CFS/ME Service, Sue Pemberton

People with severe ME not only suffer from the devastating effects of the condition but also from the isolation and despair caused by a lack of information and support.  This book offers a lifeline to those people, their families, and others trying to offer assistance facing this situation.  The book explores every aspect of living with severe ME, with a wealth of sensible suggestions and useful directions to where to find further advice.  Practical advice has been modified to meet the needs of those who are substantially debilitated by the many symptoms of this complex condition. The author’s own experience shines through in understanding the dilemmas and concerns that people will experience but still provides a range of options from which people can make their own choices and decisions.  Many people will find this an invaluable resource.  Most health professionals lack experience of working with people with severe ME and this book provides insight and understanding that will help them to work more effectively in collaboration with the individual.

This book provides a comprehensive understanding of the needs of people with severe CFS/ME and will help occupational therapists who have limited experience in this area to plan and implement appropriate assessment and treatment programmes.

Specialist Occupational Therapist, Carol Wilson

This is a very valuable resource for the patient, carer and clinician. It gives sensible and practical advice on the management of this very debilitating condition. Each section and topic has a list of internet sites which signpost the person to the help and advice they need quickly and without having to use up valuable time and energy. This is another excellent contribution to the knowledge and management of the severely affected.

Specialist Physiotherapist, Paula Bronson

I found the guide to be the best I have read to date. It was extremely well researched and organised. It would be invaluable to both carers and patients, detailed enough to provide step by step recommendations, or short easily accessible quick reference points as the need arises.

Physiotherapists new to CFS/ME and those already familiar with the condition will find the guide to be an excellent resource. Highly recommended!

Occupational Therapy student, Lesley Garrity

This is a well written resource for any health professional with an interest in the management of CFS/ME. The role of the occupational therapist is detailed throughout the text with particular reference to the types of equipment that they can issue. A particularly pleasing aspect of the book is the chapter on activity management which gives an insight into how the patient can improve their overall condition and reduce their symptoms, rather than just learning how to live with them.