RECOVERY FROM CFS – 50 PERSONAL STORIES Compiled and edited by Alexandra Barton Cover photograph of Anna Hemmings winning a World Championship Gold Medal nine months after recovering from CFS (see Anna's story). Image by Mark Watson: www.inciteimages.com 1 This book is dedicated to everyone with CFS/ME and their carers 20% book proceeds to CFS/ME research 2 Thank you To all the contributors who have given their time and energy writing their stories of hope for this book. To my husband and two children, who were always there for me and who gave me the best reason in the world to get well. To my parents, for providing me with a comforting, twenty-four hour telephone support line and many words of wisdom. To my friend Clare, whose story is in the book, for buoying up my hope when I needed it. 3 Note to reader This book should not be used as an alternative to appropriate medical care and before following any self-help advice given in this book readers are urged to consult a qualified medical specialist. There are no proven treatments for CFS/ME and no guarantee that any of the treatments and therapies mentioned in this book will work for anybody other than the author. The authors are not advocating any 'cures', they are simply describing what, if any, therapies helped them most on their own personal journeys to recovery. The authors and publishers cannot accept legal responsibility for any problem arising out of experimentation with any of the methods or therapies described. CFS and ME are generally thought of as the same illness but are referred to using the different terms by different authors. 4 COTETS Foreword by Dr Jacob Teitelbaum: A fifty-first success story . 7 Introduction . 9 The Elephant and M.E. – what it is like to have CFS/ME . 10 Margaret’s story – The wheelchair, the stick and the tin of Jersey Royals . 11 Mike’s story - It was the doughnuts that did it . 14 Joanna’s story - Perhaps we can use the power of our mind . 15 Maureen’s story - Big Cracks . 19 Rob’s story - Miracles can happen . 21 Barbara’s story - At seventy-one I have more energy than I had at forty . 27 Ian’s story - My cure occurred in an instant . 29 Tracey’s story – The dirtier you are the more fun you've had . 32 Stuart’s story – The fog lifts . 36 Lilla’s story – It's going to be a bright, bright, sun-shiny day . 40 Alexandra’s story - I had to change the balance of my diet . 41 Joy’s story - Two hours after the first dose the ME symptoms rolled away . 47 Ri’s story – The power of forgiveness . 48 Lizzie’s story – A frank ode to my life-altering friend and nemesis . 52 David's story – We must practise prevention . 57 Jess's story – A raw food diet helped me beat CFS . 63 Bob’s story – The Mantz Straw . 66 Mandy’s story - Mickel Therapy was the turning point of my life . 70 Tom’s story – ME – an illness not for children . 73 Patricia’s story – An exercise programme where you move no more than an inch 76 Max’s story – One man's inner experience and cure . 81 Susie’s story – Reclaiming me, the real me . 87 Alex’s story – My journey from ME to health and happiness . 91 Karen’s story – The Mossop Philosophy changed my life . 95 Chris’s story – I knew diet was crucial to my health . 99 Katherine’s story – Escaping from a polluted environment saved my life . 104 Matt’s story – Kettlebell exercises are a lot of fun . 106 Howard’s story – Reflections of an ex-chronic fatigue sufferer . 111 Christine’s story – I have become a parrot boarding house . 114 Clare’s story – Beyond the glass cage . 117 Fiona’s story – A stretch in time. 119 Christine's story – You can eat yourself well . 123 Louise’s story - Acknowledge that the body/mind does exist, and take notice! 124 Monique’s story – Pay it forward . 130 Helen’s story – The biggest breakthrough was a wheat and dairy free diet . 132 Paul’s story – I recently ran The Great South Run . 135 Maggie’s story – Getting well is like putting pieces of a jigsaw together . 137 Jessica's story – ew found energy with Chinese herbs . 142 Christine's story – To start my recovery I had to slow down . 146 Diana’s story- Healing layer by layer, my walk with CFS . 148 Ute’s story – I always knew there would be light at the end of the tunnel . 151 Norah’s story - Take control of your life . 153 Naomi’s story – God was always there . 154 Emma’s story - I became very creative in the kitchen . 156 5 David’s story – I'm healthier and happier than I was before I got ill . 158 Rita’s story – The body, in its wisdom, takes over. 161 Richard’s story – A structured and logically sound plan for recovery . 163 Vicki’s story- Be true to yourself . 166 Marianne’s story – Walking the labyrinth . 170 Anna’s story – An upstream paddle against all odds . 172 More about the authors . 180 Glossary . 186 6 Foreword A fifty-first success story - how you CA get well now! As Alexandra Barton lovingly proves in this excellent book, people with chronic fatigue syndrome, myalgic encephalomyelitis and fibromyalgia can clearly recover and do best when both the physical and psycho-spiritual issues are treated simultaneously. In this excellent book, fifty CFS patients offer hope and insights from their own personal journeys, so that people can begin on their own road to recovery. This is critical, as there is so much ignorance, misinformation, and downright hostility in the standard medical community when it comes to these syndromes. I am happy to be the 'fifty-first success story'. I know what you’ve been through. 1975 was a really rough year. I was caught in the middle of a family melt down while in my third year of medical school. I was twenty-two and my father had died years earlier, so I was paying my own way. Finally the stress caught up with me. I had what I called the 'drop dead flu'. Three months later I was still exhausted, unable to sleep, achy all over and had no brain. Devastated, I had to drop out of medical school. As I was paying my own way and relying on scholarships, student loans and work, which I was now too sick to do, I found myself homeless and sleeping in parks. This was to be my introduction to chronic fatigue syndrome and fibromyalgia. By working on both my physical and psychological issues, I achieved a full recovery. The illness actually became a blessing which taught me to get touch with my own feelings and desires. I live a very busy life now making effective treatment available for everyone - and moving at optimal speed is a lot healthier if you are going in the right direction! So what is causing CFS/FMS/ME? I do not view these syndromes as the enemy. Rather, I see them as attempts on the body’s part to protect itself from further harm and damage, in the face of any of a number of overwhelming stresses. A simple way to look at CFS/FMS/ME would be to view them like a circuit breaker in a house. When certain systems are over-stressed, the circuit breaker will go off to prevent damage to the home’s wiring. In milder cases, your ‘circuit breaker’ can come back on and systems can return to healthy function simply by supplying the body with rest and proper nutrition. In CFS/FMS/ME, however, it is as if the main circuit breaker (in this situation the hypothalamus- a master gland in the brain) has malfunctioned. When this occurs, rest is no longer enough to restore proper function. Despite the many diverse triggers that can cause these syndromes, most patients’ symptoms seem to come from a common end-point - excessive energy demands resulting in dysfunction of the hypothalamic ‘circuit breaker’. This area controls sleep, hormonal function, temperature regulation and the autonomic nervous system (e.g. blood pressure, blood flow, sweating, and movement of food through the bowel). The hypothalamic dysfunction by itself can therefore cause most of the symptoms we see in these patients. So both physical and situational stresses can cause me to ‘blow a fuse’? Absolutely! As is the case with other illnesses, for example heart attacks, the trigger can be physical and/or psychological stresses. In fact, anything that results in you overdrawing your ‘energy account’ can trigger the process. Once you’ve blown the fuse, you’re most likely to get well when you treat both the physical and psychological ‘energy drainers’. A number of books expertly address how to treat the physical component of these syndromes and some also address the psycho-spiritual steps you can take to reclaim your health - an area you have full power over. Reporting on how both approaches can help is one of the strengths of "Recovery from CFS - 50 Personal Stories". Joseph Campbell summarized the road to health well when he said "Follow Your Bliss!" By paying close attention to what makes you feel good and choosing to focus on and do only these things, whilst also getting the medical treatment you need, you will dramatically speed your recovery. The good news is that fibromyalgia, chronic fatigue syndrome and myalgic 7 encephalomyelitis are now very treatable, although most physicians are not yet familiar with the newest research on effective treatment and it is best to see a doctor who specializes in CFS/FMS/ME.