This book is the result of our work over the past 18 years; if I acknowledged every person individually who has helped us on this journey there would be no room left for the contents. So, instead I would like to thank every professional who has been part of the Leeds & West Yorkshire CFS/ME Service over that time, for your commitment to and enthusiasm for helping people with this difficult condition. All your ideas and contributions have helped us to develop the strategies we use within therapy and that we are sharing with others through this book. I would particularly like to thank the current team, both those listed as authors and those behind the scenes, who have worked so hard to turn the material that we use in our clinical practice into a book that everyone can read. Also, thank you to Dr Hiroko Akagi and Dr Diane Cox for their additional contributions.
I would like to acknowledge the support that the service has received from the Leeds Partnership NHS Foundation Trust, which has ensured that we have survived and grown through the years. I would like to thank Catherine for inspiring us to share our knowledge and then working so hard to make this a reality. Also, thank you to Georgina Bentliff and the team at Hammersmith Press for believing in our idea.
Most importantly I would like to thank the thousands of patients who have given us knowledge and understanding of their experiences. You help us to continue learning about the things that do and do not support your recovery. Many of you have given your time and energy to help with the development of the service, contributing to the clinical booklets that form the basis of this book. I would particularly like to thank those of you who have given your stories in the hope that they will help others on the same journey. Finally, to my family, thank you for everything.
SP, 2009
I first experienced the symptoms of CFS/ME in 1998. For seven years I looked around for answers as to why I felt so poorly and for advice on how to feel better. I heard about the Leeds & West Yorkshire CFS/ME Service through a friend of mine. I attended the service throughout 2006 and experienced significant benefits to my health as a result of applying their management strategies. At the end of 2006 I talked to Sue about putting the information into a book so anyone with CFS/ME who cannot access the service can still benefit from their approach.
I know the encouragement from others supported my recovery. It is our intention that the stories of people who have benefited from the strategies in this book will be a source of encouragement. Thank you to Heather Mundill, Georgina Hambling, Jill Clark, Lisa Kavanagh, Lee Crust, David Incoll, Sue Johnson and others who have been willing to share their experiences as a source of support for others.
Thank you to Simon, who has stood by me. In difficult times we continue to love each other and I am grateful for all you have given. Thank you to Dad, who always believed in me. Thank you to Mum, who is the most patient person I know. Thank you to Richard, a rock in my life. Thank you to Victoria, who is more than she realises she is. Thank you to Claire who was a light when the darkness of CFS/ME was in my life.
Thank you to Sue, who understands. Thank you to Sues team. Thank you to Angela Bann for creating the photograph for the cover of this book. Thank you to Georgina and Hammersmith Press for supporting this book.
CB, 2009
Catherine Berry
Catherine suffered from CFS/ME for nine years. Over that time she followed many different treatment options in the hope that they would improve her health. Nothing seemed to offer practical solutions to the problem. She attended the Leeds & West Yorkshire CFS/ME Service and after completing the programme her health significantly improved. She is keen for the information about the programme to be available to sufferers and also to inspire others to know that recovery is possible. Since regaining her health Catherine has gone on to trek to Everest Base Camp, something that for many years she never imagined possible. She met her husband, Andr, during the trek and moved to London. Her passion to get the most out of life has inspired her to work with women to support them to organise and simplify their lives. Her business, Magical You, was born out of a passionate belief that by laying a solid foundation in life you have a base to build on and enjoy more of life from.
Penny is a Chartered Physiotherapist with eight years experience of working with people with CFS/ME in outpatient, inpatient and community settings. She works with several multidisciplinary teams in Leeds delivering advice and education to people suffering from the condition as well as treating individuals.
Lisa qualified from York St John University as an occupational therapist in 2004. She then worked across a variety of health care settings gaining experience with people who had acute and chronic mental health problems before moving to her current post at the Leeds & West Yorkshire CFS/ME Service in 2006, where she works as a senior occupational therapist. At present, she is studying health psychology at postgraduate level and has a particular interest in how personality and individual differences affect adaptation to chronic illness. As part of her studies she is keen to learn how health conditions, such as CFS/ME, affect cognitive functioning.
Katie is a qualified occupational therapist with nine years experience working in the NHS, the last four of which have been with the Leeds & West Yorkshire CFS/ME Service. Throughout this time Katie has worked with people with a variety of health problems and become aware of the additional difficulties and unpleasant symptoms that stress can create. Katie has worked with people on understanding the stress that they experience and the impact that this has on their lives and ability to cope with their ill health. This understanding then leads to the opportunity to develop strategies for managing the condition differently.
Suzanne works as a clinical nurse specialist in cognitive behavioural therapy at the Leeds & West Yorkshire CFS/ME Service. After qualifying as a mental health nurse in 1985, Suzanne trained as a cognitive behavioural therapist in 1995. She has since developed clinical expertise in delivering cognitive behavioural therapy (CBT) within the specialty of liaison psychiatry, having a special interest in chronic fatigue. Suzanne provides CBT to individuals and has also delivered mindfulness based cognitive therapy to groups within the service. She is experienced at delivering CBT training and supervision to a range of professional groups.