Overcoming Multiple Sclerosis Handbook E-Book

George Jelinek MD

• Herausgeber: Allen & Unwin
• Kategorie: Ratgeber
• Sprache: Englisch

Veröffentlichungsjahr: 2022

Beschreibung

'If you or someone that you love is impacted by MS this book is a must read.' - Dr Aaron Boster, The Boster Center for Multiple Sclerosis, Columbus, Ohio 'This highly recommended book highlights the importance of a holistic approach to MS management.' - Professor Richard Nicholas, Imperial College London A long, healthy, happy life is possible after a diagnosis of multiple sclerosis. Around the world, thousands of people are living active and fulfilling lives on the Overcoming Multiple Sclerosis Program. The Overcoming Multiple Sclerosis Handbook explains what MS is, and outlines the scientifically credible and evidence-based 7 step self-management program originally devised by Professor George Jelinek. It covers all aspects of living on the program, from first diagnosis to later life, with chapters from medical specialists and other experts on choosing your healthcare team, improving resilience, work, pregnancy and progressive MS. The book taps into the wealth of knowledge and experience in the community of people following the Overcoming Multiple Sclerosis Program, with personal stories from across the world. If you have recently been diagnosed with MS, if you have been living with MS for years, or if you have a family member with MS, the Overcoming Multiple Sclerosis Handbook is your best companion. It is also an invaluable resource for doctors treating people with MS.

Leseprobe

‘If you or someone that you love is impacted by MS this book is a must read. The seven-step process for self-management presented in the Overcoming Multiple Sclerosis Handbook is a comprehensive and thoughtful approach to living your best life despite having this disease.’

Dr Aaron Boster, The Boster Center for Multiple Sclerosis, Columbus, Ohio

‘This highly recommended book highlights the importance of a holistic approach to MS management, offering a path to achieve the best possible outcome in this potentially devastating condition.’

Professor Richard Nicholas, Imperial College London

‘A deeply insightful account and instructive guide for adopting healthy lifestyle behaviors and thriving while living with MS.’

Dr Sarah Mulukutla, Founding Chairperson of the Section on Neurohealth and Integrative Neurology at the American Academy of Neurology, New York

‘Written specifically for people who have MS, this inspirational book provides a comprehensive, practicable program for living a full life with this disease.’

Dr Alessandra Solari, Fondazione IRCCS Istituto Neurologico Carlo Besta, Italy

‘Overcoming MS is now the essential mainstay of MS management, before or alongside drug therapy, offering the best chance of a full and healthy life for people with MS.’

Dr Peter Silbert, Clinical Professor of Neurology, University of Western Australia Medical School

‘A wonderful resource for people living with MS.’

Dr Ilana Katz Sand, Associate Professor of Neurology, Icahn School of Medicine at Mount Sinai, New York

First published in Australia and New Zealand in 2022 by Allen & Unwin.

First published in Great Britain in 2022 by Allen & Unwin,an imprint of Atlantic Books Ltd.

Copyright © in the collection George Jelinek, Sandra Neate andMichelle O’Donoghue 2022Copyright © in individual chapters with their authors 2022

The moral right of George Jelinek, Sandra Neate and MichelleO’Donoghue to be identified as the authors of this work have beenasserted by them in accordance with the Copyright, Designs andPatents Act of 1988.

All rights reserved. No part of this publication may be reproduced,stored in a retrieval system, or transmitted in any form or by anymeans, electronic, mechanical, photocopying, recording, or otherwise,without the prior permission of both the copyright owner and theabove publisher of this book.

10 9 8 7 6 5 4 3 2 1

A CIP catalogue record for this book is available from the British Library.

Trade paperback ISBN: 978 1 83895 307 2E-book ISBN: 978 1 83895 308 9

Text design by Midland Typesetters, Australia

Printed in Great Britain

Allen & UnwinAn imprint of Atlantic Books LtdOrmond House26–27 Boswell StreetLondonWC1N 3JZ

www.allenandunwin.com/uk

For Eva and Iva

—George Jelinek

For my brother, Colin

—Sandra Neate

To my family, in particular my husband Andrew,for their unwavering support

—Michelle O’Donoghue

Contents

Foreword

Linda Bloom, President,Overcoming Multiple Sclerosis charity

Preface

Professor George Jelinek, Dr Sandra Neate,Associate Professor Michelle O’Donoghue

About the editors

About the contributors

Part 1: The lay of the land

1: Understanding multiple sclerosis

Dr Brandon Beaber

Part 2: The directions

2: Overview of the OMS Program

Dr Virginia Billson

My Story: Phil King

3: Eat well

Jack McNulty

My Story: Ingrid Adelsberger

4: Get enough sun and vitamin D

Dr Conor Kerley

My Story: Emma Lister

5: Exercise

Dr Stuart White

My Story: Claes Nermark

6: Meditation, mindfulness and the mind–body connection

Associate Professor Craig Hassed

My Story: Dr Véronique Gautier PhD

7: Medication

Dr Jonathan White

My Story: Dr Catriona Tate PhD

8: Progressive MS

Dr Philip Startin

My Story: Dave Jackman

9: Families and prevention

Dr Sandra Neate and Dr Pia Jelinek

My Story: Leah Tsirigotis

Part 3: Keeping on track

10: I’ve just been diagnosed with MS

Dr Sam Gartland

My Story: Renee Coffey

11: Choosing your healthcare team

Dr Heather King

My Story: Caroline Clarke

12: Mental health

Dr Keryn Taylor

My Story: Fran Barclay

13: Building resilience

Dr Rachael Hunter

My Story: Dr Saray Stancic

14: Work

Rebecca Hoover

My Story: Anthony Mennillo

15: Disclosure

Gregory Hendron

My story: Professor Anne Kavanagh

16: Pregnancy and childbirth

Dr Keryn Taylor

My Story: Lisa Downie

17: Sticking with the OMS Program

Dr Annette Carruthers

My Story: Johanna Lahr

Part 4: The road ahead

18: Facing an uncertain future

Karen Law

19: The road ahead

Professor George Jelinek

Index

Foreword

The Overcoming Multiple Sclerosis 7 Step Recovery Program (‘the OMS Program’ and ‘the Program’) outlined in this book has the potential to radically change your life for the better. I know because it has changed mine. Even more importantly, nearly every contributor telling their story in the following pages is a testament to the power of the OMS Program too.

I first met Professor George Jelinek in 2002 in Melbourne, Australia, where he had just started running workshops for people with multiple sclerosis (MS). I was the 28-year-old woman slumped on a bright yellow beanbag in the middle of the room, struggling to get through each day, debilitated by an array of symptoms. Four months earlier I had received the devastating diagnosis, which explained the sudden and dramatic onset of symptoms that had engulfed my body and in turn my mind and spirit. It transformed me from a strong independent woman in the prime of my life to a bedridden shell of myself, reliant on others for care.

I sat among a room full of people, all there for a glimmer of hope from a man who himself had been dealt the same diagnosis and had witnessed his mother’s decline and eventual suicide as a result of the same illness that had ravaged her body years earlier. At the time Professor Jelinek was considered somewhat of a revolutionary, some would even say a maverick. He had consolidated the evidence from around the world and put together a holistic lifestyle program that he believed had the potential to completely change the lives of people with MS.

For me it was a pivotal moment. As I embraced the OMS Program, it empowered me little by little to take back control of my health. It provided me with the evidence to understand why the recommendations work and it motivated me to do whatever it took to overcome MS.

In the subsequent years Professor Jelinek paved the way as a leader in the field, ultimately setting up, and then conducting health and lifestyle research in MS at, the Neuroepidemiology Unit (NEU) at the prestigious University of Melbourne.

When I set up the Overcoming Multiple Sclerosis (OMS) charity in the United Kingdom in 2012, it was with a passionate belief that this lifestyle information needed to be made available to every single person newly diagnosed with MS. I felt a sense of responsibility to share George’s work, as I had experienced its life-changing outcomes at first hand. In fact, it felt negligent not to spread the word. If I could turn my health around, so could others; they just needed to be given the opportunity to understand the evidence underpinning the recommended changes.

And now, a decade later, the real testament to George’s work is that this latest book is a handbook that is written by our community and for our community. It builds on his ground-breaking book Overcoming Multiple Sclerosis: The evidence-based 7 Step Recovery Program, which provides the detailed scientific evidence base of how changing one’s lifestyle can positively affect the development and progression of MS.

Joining Professor Jelinek in bringing this book to fruition are two other editors from opposite sides of the world, steeped in medical and scientific expertise. Dr Sandra Neate is a specialist emergency physician who heads the NEU at the University of Melbourne but also has significant involvement in forensic aspects of medicine, in particular through the Coroners Court of Victoria and the Mental Health Tribunal in Victoria. She has also run many residential OMS retreats with George. With her academic rigour, Sandra bridges the divide between teaching and research in medicine and her practical clinical contributions, as well as her insider perspective on living for twenty years with someone who has lived and breathed the OMS Program.

Professor Michelle O’Donoghue is a US cardiologist and Associate Professor of Medicine at Harvard Medical School whom George and I met on the OMS tour of the United States in 2016 and who herself was diagnosed with MS in 2010. As a researcher and clinical trialist, she has a particular appreciation for the evidence on which the OMS Program is based.

These editors now release, for the first time, expanded practical information condensed into a simple, practical guide on how to follow the OMS Program, written so that anyone who has been touched by this life-changing condition can benefit. Nearly all the contributors, as well as being international experts in their own fields, follow the Program, having been diagnosed with MS themselves. They say that the job of a master is to create new masters and so it is hugely inspiring to read what these new masters of the OMS philosophy, from all corners of the world, have to say as they come together to share their insights. As you dive into this book, you’ll find a manual brimming with super accessible, practical tools and information drawn from professional knowledge and personal experience.

Of course, the hard truth is that getting well from a diagnosis of MS is not plain sailing. Overcoming MS can be a long and hard road. The challenge is to remember that the setbacks and frustrations can lead to greater resilience, if we allow them. I remember the first day when taking a breath wasn’t painful—it was a near miracle. And I also remember the days when a green hue overwhelmed my vision accompanied by inexplicable fatigue drowning my body after doing ‘too much’ the day before. I called them ‘green days’.

But I maintained hope, which in time became faith and finally belief that the tools now presented in this book would help me to navigate the good days, the terrible days and everything in between. Slowly, over time my symptoms gradually improved until they completely disappeared, and I have been relapse-free ever since and no longer have any lesions detectable on MRI.

Research on diet and lifestyle is at the heart of the OMS Program, but on another level so is the wider offering of ‘community’. We are naturally social beings, but ill health can be debilitating, isolating and lonely; it certainly was for me at times. Thankfully, the Program is a gateway to a community that quite simply understands what you are going through and that brings a shared sense of empowerment and belonging. For anyone recently diagnosed with MS, rest assured that the Program will connect you to a network of people enthused with realistic positivity and hope. You will not feel alone.

However, the Program has an even broader and more subtle contribution than just assisting those diagnosed with MS. It is a valuable tool for the families and loved ones who are also on this journey, offering practical approaches to how we can all live happier, healthier lives. After all, the true gift is in enabling the best not only for ourselves but also for those around us.

The good news is that there is a gradual turning tide of understanding about the benefits of a holistic approach to MS that works alongside conventional treatment. Though this awareness has been prominent in other chronic health conditions such as diabetes, heart conditions and cancer for some time, we are now seeing more people reporting that their neurologists are taking an interest. We are observing increasing cases of remission and of NEDA (No Evidence of Disease Activity) and we are hearing about neurologists looking for something more to offer their patients in addition to the pharmaceutical options. The change may be slow, but it is happening and as such this book has the potential to accelerate a paradigm shift in MS management globally.

Overall, this book’s contribution to people with MS, their families and the wider MS community is extraordinary. I urge you to read it, absorb it, weave it into your own story, and share it with your family and loved ones. Through thick and thin, let this book become your trusted healing companion. It will empower you to live your best life. It has mine.

Linda BloomPresidentOvercoming Multiple Sclerosis charityBuckinghamshire, United Kingdom

Preface

It sometimes astounds me that the one-page memo, stuck to the fridge at home, that I put together in 1999 to help me live well after a diagnosis of MS, has been of help to so many people around the world. Scientists globally have increasingly focused on researching this critically important area, with more and better publications accumulating, not least from some of the editors of and contributors to this book, validating the potential benefits of this risk-modification program. What else has happened, though, is that people who have adopted this way of living have added their own dimension and nuance to the prescription. This book is about those people, the Overcoming Multiple Sclerosis (OMS) community, the people whose lives have been touched by the OMS Program and who have agreed to share their insights and tried-and-true methods of adopting this lifestyle approach and living a full life.

I express my gratitude to all of the contributors, most of whom have MS diagnoses: those who have written comprehensive content chapters outlining a clear path for people adopting the OMS Program to follow; those who have penned their personal stories to illustrate how life has unfolded for them after embracing the Program; and those who have provided inspirational quotes to further personalise each of the chapters. This book is now truly representative of a wide section of the OMS community, not only lighting the way for other people with MS and their families to follow, but inspiring us with the affected individuals’ strength, courage and determination. Research counts for a lot in medicine, but so does the lived experience of these trailblazers in showing us what a profound difference taking control of MS can make, that overcoming this disease can now be a reality for many, many people with MS.

Professor George Jelinek

The concept for this book began during a trip to the United Kingdom when the Overcoming Multiple Sclerosis (OMS) charity wondered how the ideas and suggestions in Professor Jelinek’s book Overcoming Multiple Sclerosis: The evidence-based 7 step recovery program (1st edition, 2010, 2nd edition, 2016) could be made future-proof. Future-proofing involved writing a book that was less reliant on citing medical literature and more representative of the experience of people with MS. We also wanted to explore topics not previously covered in other MS texts, such as progressive MS, the role of families, work, disclosure, and pregnancy and the perinatal period.

As this idea of a multi-authored book written (largely) by people with MS who were actively engaged with modifying their lifestyles developed and we approached people with invitations to write chapters and provide their personal stories, it became apparent that there was a vast wealth of knowledge and experience in the OMS community that had been untapped. The concept of a book written by the OMS community for the community of people with MS continued to evolve, and this is the end product.

I come from a background of emergency medicine, a frantic-paced specialty of medicine where we deal with the end product of illness and injury. Working over many years now with people with MS, and being a part of the team at the Neuroepidemiology Unit at the University of Melbourne where we research lifestyle modification in MS, I have experienced great joy in working with people in a collegial manner, forming lifelong relationships with them, being a part of a shared experience and striving towards health improvement and, hopefully, prevention.

I have enjoyed watching the chapters and stories contained therein unfold. Each chapter author has drawn from their expertise in the area, but also from their own unique experiences and perspectives. They bring insights into the barriers and challenges they have faced and their own very personal and, what were until now, private ways of facing those challenges. They have shown remarkable courage in sharing their experiences. These sentiments apply equally to the other individuals who have contributed personal stories within each chapter. I hope our book provides not only detailed information but also insights and inspirations from this remarkable group of people to assist you whether you have been diagnosed with MS or, like me, are sharing your life with someone diagnosed with MS.

Associate Professor Sandra Neate

I will never forget the moment when the neuro-ophthalmologist turned his back to me and announced to a group of medical students, ‘As you can see, this patient’s brain MRI has all the classic findings of multiple sclerosis’. At that moment, I felt like the rug was being pulled out from under me and I broke down sobbing. Those words changed my life forever.

It was only a few days earlier that I had begun to lose vision in my right eye when I was returning from a medical conference. Over the course of two days, my vision loss rapidly progressed until I was completely blind in that eye. As a physician, the possibility that my symptoms could be explained by MS had entered my mind, but I had promptly dismissed it. ‘How could I have MS?’, I had asked myself. With those words, I shifted into a phase of several months of denial as I moved through the stages of grief.

Fortunately, the possibility that diet and lifestyle may play a role in the progression of MS immediately felt right to me. If the body was inappropriately attacking itself, it seemed probable that something was driving that confusion and that I might be able to play a role in altering its course. During my first meeting with the neurologist, I asked him about the role that diet might play and he told me that some people believed in the work of Dr Roy Swank. I read Dr Swank’s book and soon thereafter came across the book Overcoming Multiple Sclerosis by Professor Jelinek.

As a physician, I appreciated the fact that Professor Jelinek had researched the field extensively and presented his recommendations based on the best available evidence. Nonetheless, I will fully admit that when I first read his book, I was not yet ready to hear his message or embrace the necessary changes. Instead, I followed the path of more traditional medicine and started daily injections that were quickly upgraded to intravenous medication as my MRI showed further signs of progression. My scans revealed that I had more than 25 brain lesions and several appeared to be new. During this time, I had convinced myself that the dietary changes recommended by Professor Jelinek were just too challenging, and I seemed to relish going out to restaurants to eat soft cheeses and meat with my friends as my disease continued to progress.

I can’t tell you exactly when something shifted inside me. After several months, I went back to my bookcase and re-read Professor Jelinek’s book. The next day, I woke up and adopted all of his recommendations. It’s now been a little more than ten years since my diagnosis and I’m delighted to report that I have yet to suffer a single clinical relapse and my brain MRI has remained stable. Although I am eternally grateful for my physical health, I am even more appreciative of the lessons that the OMS Program has taught me about myself during this unexpected journey.

Above all else, George’s OMS Program delivers hope and inspiration to people with MS at a time in their lives when things may seem quite hopeless. The first books I read following my diagnosis all painted a bleak picture of an inevitable downhill decline. Professor Jelinek gave me back a sense of optimism and a sense of control over a disease that terrified me. In turn, the OMS Program has also made me a better physician as I have gained a deeper understanding of the role that diet and lifestyle may play in so many different disease processes. In that sense, I truly believe that one has nothing to lose by embracing Professor Jelinek’s recommendations, as these changes can only lead you to a place of enhanced physical and spiritual health.

When George approached me to help him co-edit this book, I was grateful to have the opportunity to help promote his message of optimism for people with MS. For those of you who have already embraced the OMS Program, I hope that this book helps to reignite your commitment. For those of you who may have struggled or not yet embarked on this path for self-improvement, I encourage you to keep an open mind and allow yourself to be inspired by the possibility that you may have more control over your fate than you previously realised. There is reason to see light on the horizon and remain optimistic!

Associate Professor Michelle O’Donoghue

About the editors

Professor George A. Jelinek MD,MBBS, DipDHM, FACEM

George Jelinek is one of Australasia’s pioneer emergency physicians, having served as President of the Australasian Society for Emergency Medicine, Vice-President of the Australasian College for Emergency Medicine, the first professor of emergency medicine in Australasia and Founding Editor of the journal Emergency Medicine Australasia. After his diagnosis with MS in 1999, he devised the OMS Program, and founded and headed for its first three years the Neuroepidemiology Unit at the University of Melbourne. He has devoted his life to bringing a message of hope, optimism and good health to people with MS everywhere. He has twice been a state finalist for Australian of the Year for his contribution to MS and emergency medicine.

Associate Professor Sandra L. Neate MBBS,DRANZCOG, DA(UK), GradCertForensMed, FACEM

Sandra Neate is a medical professional of 35 years’ experience, having trained and worked in a variety of service, teaching and research roles as a specialist emergency physician, including as Medical Director of Organ Donation at St Vincent’s Hospital Melbourne. She has had considerable experience in the forensic aspects of medicine, including a decade investigating deaths in healthcare facilities for the Victorian State Coroner, and sitting on the Mental Health Tribunal in Victoria. She has published extensively on emergency medicine, organ donation and MS. Sandra now heads the Neuroepidemiology Unit at the University of Melbourne.

Associate Professor Michelle O’Donoghue MD, MPH

Michelle O’Donoghue is Associate Professor of Medicine at Harvard Medical School and a practising physician and cardiologist at Brigham and Women’s Hospital in Boston. She earned her medical degree from Columbia University College of Physicians and Surgeons in New York City. She subsequently completed a Master of Public Health at the Harvard School of Public Health. She has been involved in many international randomised controlled trials and published extensively in high impact medical journals. Michelle was diagnosed with MS in 2010 and adopted the OMS lifestyle shortly thereafter. She has lived free from clinical relapses since that time.

About the contributors

Dr Brandon Beaber is a neurologist and MS specialist in the Southern California Permanente Medical Group. He is the author of several publications on MS epidemiology and has participated in clinical trials for MS therapeutics. He makes YouTube videos about MS and posts about MS news and research on Twitter as @Brandon_Beaber. He lives in Los Angeles with his wife and two children.

Dr Virginia Billson graduated with a Bachelor of Medicine and Bachelor of Surgery (MBBS) degree from the University of Melbourne in 1973, then specialised in pathology. She worked as a specialist histopathologist at the Repatriation General, Royal Melbourne, Mercy and Royal Women’s hospitals; at the latter, she was Director of Anatomical Pathology from 1995 to 1999. She was diagnosed with RRMS (‘relapsing remitting MS’) in 1996 and remains well by following the OMS philosophy.

Dr Annette Carruthers AM is a general practitioner (primary care physician) in Lake Macquarie in New South Wales and a Conjoint Senior Lecturer in the School of Medicine and Public Health at the University of Newcastle. She fulfills several roles on different boards involving financial services, health, infrastructure and aged care. She is a past president of MS Australia. Annette adopted the OMS Program in 2001. Dr Carruthers was awarded a Member of the Order of Australia (AM) in 2021 for her services to people with MS.

Dr Sam Gartland is a general practitioner in northern New South Wales and facilitates OMS retreats. Sam was diagnosed with MS in 2008; he has now recovered by following the OMS Program.

Associate Professor Craig Hassed OAM is coordinator of mindfulness programs across Monash University. He was the founding president of Meditation Australia, is a regular media commentator and has published thirteen books. He has co-authored the world’s two top-ranked free online mindfulness courses. In 2019 Craig was awarded the Medal of the Order of Australia (OAM) for services to medicine.

Greg Hendron is a 46-year-old lawyer living in Northern Ireland with his wife Caroline and his two small children Darragh and Ronan. He was diagnosed with MS in May 2010 and adopted the OMS Program in June 2010. Greg has been and continues to be integral to the growth of the OMS community in Northern Ireland.

Rebecca Hoover earned a Bachelor of Science in Business degree from the Carlson School of Management at the University of Minnesota where she also studied in MBA and PhD programs. She has worked as a finance and information technology manager and consultant in small to medium-sized international organisations. She is now a vice president at a law firm focused on social justice. Diagnosed with MS in 1991, Rebecca adopted the Swank MS diet in the late 1990s and the OMS Program in 2007.

Dr Rachael Hunter is a mother of two, a chartered clinical psychologist and Senior Lecturer in Clinical Psychology at Swansea University in Wales. Diagnosed with MS in 2012, Rachael adopted the OMS Program straight away.

Dr Pia Jelinek graduated in medicine from Notre Dame University in Fremantle in 2016. After four years of hospital medicine, she is now practising family medicine in Perth. Pia has published five papers on MS prevention, contributed to facilitating OMS retreats in Australia and has a long experience of living with a devotee of the OMS Program, her father George.

Dr Conor Kerley was diagnosed with MS at the age of fifteen after three major relapses in nine months. Inspired by his circumstances, Conor became a Doctor of Nutrition, working at universities and health centres in Ireland and the United States. Published in international peer-reviewed medical journals, his research includes twelve papers on the role of vitamin D in the treatment of MS. Eighteen years after diagnosis, Conor is symptom-free, relapse-free and medication-free.

Dr Heather King is a general practitioner in Auckland, New Zealand. She is an OMS retreat participant, partner, mother, GP, equestrian, gardener and lover of life in general. Heather adopted the OMS Program in 2004.

Karen Law is a singer/songwriter and guitar teacher from the Sunshine Coast, Queensland, who adopted the OMS lifestyle after her diagnosis in 2010. A former journalist, she co-wrote the book Recovering from Multiple Sclerosis: Real life stories of hope and inspiration with George Jelinek and has carried out several volunteer roles within the OMS charity. She is married to David and together they have three children.

Jack McNulty has been involved in food and cooking most of his life. He has worked for chefs in high-end restaurants in Switzerland, Italy and France, and operated his own catering business and cooking school. He has provided recipes and information to the OMS website and was the contributing editor to the Overcoming Multiple Sclerosis Cookbook. Jack has followed the OMS lifestyle since 2009.

Dr Phil Startin, after obtaining a doctorate in physics, worked for Price Waterhouse as a management consultant for over 20 years. Since 2014, Phil has delivered the Mindfulness Based Stress Reduction (MBSR) course. He is a facilitator for the OMS charity, a trustee at MS-UK, and is currently working on a variation of the MBSR course specifically for people with MS. Phil was diagnosed with primary progressive MS in 2007, adopted the OMS Program in 2012, and attended the first OMS retreat in the United Kingdom in 2013.

Dr Keryn Taylor is a psychiatrist with clinical experience in neuropsychiatry, psycho-oncology and perinatal psychiatry. She is an Honorary Senior Clinical Research Fellow at the Neuroepidemiology Unit, University of Melbourne, and is an OMS retreat facilitator. Diagnosed with MS in 2005, Keryn adopted the OMS Program the same year. She remains well.

Dr Jonathan White is a UK obstetrician and gynaecologist, with interests in early pregnancy and recurrent pregnancy loss. He assists the OMS charity as a medical adviser and event facilitator. He lives and works on the north coast of Northern Ireland, sharing his life with his wife and two young sons, and enjoys the great outdoors, cycling, rugby, reading and film. He adopted the OMS Program the week after his MS diagnosis in 2015.

Dr Stuart White continues to work full-time as a consultant anaesthetist in Brighton, United Kingdom. He has published numerous research papers on a variety of subjects, including medical law and ethics, hip fracture management, and the environment. He was diagnosed with MS aged 40 in 2010, and has enthusiastically followed the OMS Program since 2016.

Part 1

The lay of the land

1

Understandingmultiple sclerosis

Dr Brandon Beaber

Seek help and find your own personal path through what seems like a wilderness; but it’s not, there are bluebells to be found in the fog.

Christine Nolan, Belmont, Australia, OMSer

She has a confident look as though her time might be better spent outside my office. The tingling in her left arm barely lasted a week and didn’t impede a single spin class or Zoom meeting. She’s twenty-four, fit, worldly and ambitious—the owner/operator of a search engine optimisation consulting business. She’s been everywhere, knows people in high places, and you couldn’t guess her ethnicity after five tries. She boasts coiled hair professionally dyed with blond streaks, a Louis Vuitton handbag, and clothes that must cost more than my entire wardrobe. She is the paragon of millennial money, both street and book smart with the right balance of entrepreneurial risk-taking spirit and seventy-hour-a-week discipline.

Onyeka (her name and some details of her life have been changed for privacy) shifts her countenance when I show her the MRI scans (Figures 1.1, 1.2).

She queries: ‘How could a symptom so brief and trivial look terrifying? Is that really my MRI? What is this mysterious illness, and what will happen to me?’

Multiple sclerosis (MS) may invoke negative imagery for some of those unfamiliar with the disease: they think of wheelchairs and nursing homes. But Onyeka is typical of the patients I see. The trouble with MS is the fear and uncertainty about the future it causes. Though I desperately want to, I can’t give her a prediction of what course her MS will take, a timeline or a guarantee. Onyeka is not the type to wallow in despair, and she hits me with a laundry list of questions and an interrogating tone I might resent if the circumstances were different. She is looking for what psychologists call the ‘internal locus of control’ and wants to know what she can do to better her situation. Given you are reading this, I suspect you have a similar mindset.

Figure 1.1: An axial T2 FLAIR MRI scan of Onyeka’s brain. MS lesions are the small white areas flagged with arrows.

Figure 1.2: A sagittal T2 STIR MRI scan of Onyeka’s cervical spine. The MS lesions are flagged with arrows.

Some time ago, I set out to read every book about lifestyle and MS, determined to best them all by researching and writing my own manuscript. It was to be inspired by science rather than anecdotes, more up-to-date and evidence-based than anything before. However, when I read Overcoming Multiple Sclerosis by Professor Jelinek, I concluded I had been beaten to the punch, and as far as I can tell, his recommendations reflect the best available evidence, so I am following the old idiom: ‘If you can’t beat ’em, join ’em’. I am honoured to introduce the roadmap provided by this handbook to help you face MS with courage, conviction and wisdom.

What is MS?

The purpose of this book is to put into context the role of lifestyle in the genesis and treatment of MS, but we must begin with a foundation of general knowledge. MS is an interesting and complex disease, so consider this a brief overview and framework for future chapters. The disease is believed to affect over 25,000 Australians,1 nearly one million Americans2 and several million people worldwide. The lifetime risk of MS in developed countries with high prevalence is about one in 350 or ~0.3 per cent, which has been rising significantly in recent decades.

MS was first formally described by the French neurologist Jean-Martin Charcot in 1868, and the last century and a half has brought some understanding to this mysterious illness, the first recording of whose symptoms may have been as early as the fourteenth century, as manifested in Lidwina the Virgin (1380–1433), the Catholic patron saint of ice skating. The term ‘multiple sclerosis’ refers to hardened (or ‘sclerotic’) scars (plaques) in the brain, optic nerves and spinal cord. When we look under the microscope during a biopsy or autopsy, we primarily see damage to the myelin, a fatty sheath that protects nerve fibres (Figure 1.3).

The nervous system is essentially the organ of communication within the body, so when myelin is injured by what is currently thought to be an autoimmune process (i.e., when the immune system attacks our own bodily tissues), the speed and integrity of information transmission along nerves are hindered. This gives rise to the myriad symptoms MS can cause: vision loss, numbness, weakness, imbalance, tremor, problems with bladder and sexual function, pain, fatigue, vertigo, double vision, cognitive changes, and so forth.

MRI scans are helpful for diagnosis and monitoring of MS because they allow us to see lesions (the visible areas of damaged nerves) in a living person. MS lesions appear bright on what is termed the T2 sequences of the MRI scan, and with permanent nerve fibre loss, they may be dark on T1 sequences (‘black holes’). An active lesion causes a temporary breakdown of the blood-brain-barrier (the normal membrane separating the brain from the blood), and gadolinium contrast dye given before the scan can seep into the lesion, causing it to ‘enhance’ (appear brighter). Partly as a result of this damage, the brain can atrophy (shrink) in MS by a rate of ~0.5–1.35 per cent per year.3 We monitor MS with routine exams and periodic MRI scans because new MS lesions often develop in the absence of symptoms.

Figure 1.3: A myelin-covered nerve fibre is like an electrical wire with insulation. Oligodendrocytes are cells that produce myelin in the central nervous system. Source: Wikimedia Commons.

New MS symptoms usually show up in one of two ways: through relapses or progression. Relapsing MS is marked by relatively rapid development of neurological symptoms over days to weeks, often followed by improvement and quiescence. We call the new symptoms ‘relapses’ and the intervening periods are ‘remissions’. Many terms are synonymous with ‘relapse’, including ‘attack’, ‘flare’ and ‘exacerbation’. Sometimes attacks are mild, such as slight numbness of the left hand that resolves in a week. Other times they are more severe and followed by prolonged and incomplete recovery. On rare occasions a single attack can lead to major permanent irreversible disability.

The severity of MS attacks varies greatly

As an example of the manifestations of the disease, one of the most common initial signs of MS is optic neuritis, or inflammation of the optic nerve. Symptoms usually include vision loss in one eye and pain with eye movement. It preferentially affects colour vision and the centre of the field of vision. If the initial visual loss is mild or moderate, the outcome (prognosis) is generally good, with improvement occurring spontaneously or after oral or intravenous steroid treatment.

In contrast to relapsing MS, progressive MS is slow and insidious, with an absence of the clearer episodes of neurological impairment that define relapsing MS. Symptoms gradually worsen over many months or years, and we often recognise the onset retrospectively after significant changes have accumulated. Gait and mobility are commonly affected, but some people may experience progressive imbalance, cognitive decline or any other symptom caused by MS. For unknown reasons, progressive visual loss is rare.

What are MS subtypes?

For most people, MS starts in the relapsing phase (‘relapsing remitting MS’ [RRMS]) without obvious progression. Some with RRMS will later in the course of the disease develop steady downhill progression, with or without relapses, known as a transition to ‘secondary progressive MS’ [SPMS]. About 15 per cent of people with MS start off with progressive disease, known as ‘primary progressive MS’ [PPMS]. Figure 1.4 (A, B, C) shows a representation of possible disability changes over time for the three main MS subtypes referred to here.

Younger people are more likely to have relapsing MS, and older people are more likely to have progressive MS. Some with progressive MS also have relapses, and, importantly, there is robust evidence that people with relapsing MS often have subtle unrecognised progression.4 Irreversible disability in MS is primarily driven by progressive disease rather than relapses. There is strong epidemiologic, imaging, genetic and pathological evidence that all forms of MS share a similar underlying pathological process, so the three subtypes are useful mostly as descriptors and do not indicate truly distinct diseases.

Is there a test for MS?

Unfortunately, there is no single definitive test for MS. The diagnosis is usually based on a history of symptoms, a physical exam and MRI scans showing lesions typical of the disease. Sometimes additional testing can help confirm the diagnosis. For instance, blood tests can be helpful to rule out diseases that mimic MS, such as vitamin B12 deficiency, Lyme disease or other autoimmune diseases. Although less common in modern times, a procedure called a spinal tap, or lumbar puncture, can be useful. For this test a needle is introduced into the lower back under local anaesthesia to draw out cerebrospinal fluid (CSF) that surrounds and supports the spinal cord and brain. About 90 per cent of people with MS have abnormal antibodies in the CSF that are not in the blood. After a laboratory procedure called gel electrophoresis, these antibodies show up as bands of dark pigment called ‘oligoclonal bands’.

To look for signs of old optic nerve injury, a test called ‘visual evoked potentials’ can be helpful. For this study, electrodes are placed on the back of the scalp, and a special checkerboard pattern of light is flashed into the eyes. The speed of transmission through the optic nerve can be measured, revealing signs of subtle damage. Taken together, the symptoms, physical exam and test results can help to support or refute a diagnosis of MS.

Figure 1.4 (A, B, C): Disability changes over time in the three main MS subtypes. Time is shown on the horizontal X-axis, and a measure of disability called the Expanded Disability Status Score (EDSS) is shown on the vertical Y Axis. EDSS is a discrete scale where values can only be whole or half numbers up to 10, but in progressive MS, changes are often smooth and continuous rather than discrete. Note that disability typically accumulates over time with all types of MS.

There are also formal criteria for diagnosing MS, most recently formulated as the 2017 revised McDonald criteria. However, MS can be difficult to diagnose accurately because many symptoms may be caused by myriad other conditions, and lesions showing in MRI scans can be benign or caused by other diseases. Hence, MS is very commonly misdiagnosed, and I am often ‘undiagnosing’ people with MS, even in situations where they have carried the diagnosis for years and received numerous treatments. If there is any doubt, you may consider a second opinion.

MS is commonly misdiagnosed

How bad is MS?

One thing that always strikes me is how dramatically the severity of MS varies from person to person. This is one of the most typical features of the disease. For some people, it is possible to see MS plaques at autopsy despite no history of symptoms during life.5 Others have mild MS with good recovery from relapses and live long lives despite no specific treatment. Still others have varying degrees of moderate problems from MS, perhaps doing well for decades but acquiring disabilities later in life. An unlucky few have rapidly progressive MS or even a fatal disease course. It may frustrate the reader to learn that I ask every single person I meet with so-called benign MS how they manage their condition, and very few of them follow a particularly strict diet or lifestyle. Individual randomness is part of the mystery of the disease.

No guru, regardless of experience or professional qualification, can give any meaningful prognosis to someone with MS. There is simply too much variability. However, we can get a sense of the average rate of progression by looking at groups of people with MS over time. These studies usually use a measure of disability called the Expanded Disability Status Score (EDSS), which is commonly used in MS research and clinical trials (Table 1.1), although some self-reported measures of disability are also used.

Drawing from the MS-EPIC study from the University of California San Francisco,6 of those who start with relapsing MS, the proportion who require a cane to walk 100 metres (EDSS 6.0) is 4.7 per cent at 10 years, 16.2 per cent at 20 years, but over 50 per cent at 40 years. The rate of transition to secondary progressive MS is 6.4 per cent at 10 years, 24.2 per cent at 20 years, but over 50 per cent at 40 years. But while the average age of diagnosis is thirty, and many will therefore have problems later in life, these statistics are for all people with MS, and we don’t yet have good data on how adopting the OMS Program will affect this.

In clinical trials, MS disability is usually measured with the Expanded Disability Status Scale (EDSS)

Table 1.1: The Expanded Disability Status Scale (EDSS)

EDSS

Description

0

No disability

1.0–2.0

Minimal disability

3.0–4.0

Moderate disability

4.5

Can walk 300 m

5.0

Can walk 200 m

5.5

Can walk 100 m

6.0

Cane needed to walk 100 m

6.5

Walker required to walk 20 m

7.0

Wheelchair required. Cannot walk more than 5 m

7.5

Wheelchair required but can walk a few steps

8.0

Unable to stand up

8.5

Mostly restricted to bed. Some use of the arms

9.0

No use of the limbs. Able to speak and eat

9.5

No use of the limbs. Cannot speak or eat

10

Death due to MS

Note: The scoring under the EDSS is complex and requires a neurological examination, so I have simplified the information in this table.

Furthermore, those with progressive MS at the onset are more likely to have significant disability at diagnosis and have a much worse prognosis on average. That being said, we think MS is becoming milder over time. The numbers above look good compared with older natural history studies, which revealed a nearly double risk of cane use after 25 years.7 The probability of reaching EDSS 3, 4 and 6 is decreasing in Sweden.8 This may be due to the use of disease-modifying medications, vitamin D supplementation, or higher rates of diagnosis in people early in the course of MS or with milder disease who may not have been diagnosed in the past.

The MS-EPIC study found that after twenty years people with relapsing remitting MS (RRMS) have a 1 in 6 chance of needing a cane and a 1 in 4 chance of transitioning to secondary progressive MS (SPMS)

Many believe that the EDSS scale is too focused on walking ability and misses the subtler symptoms of MS. Overall, 40–65 per cent of people with MS have objective signs of cognitive impairment, meaning difficulties with memory, perception or judgement on formal neuropsychiatric testing,9 and these may not be obvious to a casual observer. Demyelination (loss of myelin) in regions connecting disparate areas of the brain influences processing speed and multitasking ability. For example, I have a patient who is a highly intelligent accountant but cannot meet the demands of fourteen-hour days during tax season. Indeed, many will rate invisible symptoms such as fatigue, pain and cognitive ‘fogging’ as their most severe symptoms. MS symptoms may be overt and covert.

What causes MS?

The medical consensus is that MS is an immune-mediated disease where white blood cells invade the central nervous system, similar to how the immune system attacks joints in rheumatoid arthritis. These white blood cells are effectively ‘confused’, and target the person’s own proteins instead of foreign viruses and bacteria, causing inflammation of that part of the nervous system. Myelin proteins are a major target of these unhinged defenders.10 This is why the term autoimmunity is used to describe the process. There is also evidence of degeneration in MS such as failure of mitochondria, the energy-producing machines within the cells. Researchers have found ‘smouldering’ inflammation in old MS plaques invisible to conventional MRI scans.11 Over time, ‘naked’ nerve fibres without their myelin protection may fail.12

Part of the risk of developing MS is simply genetic—that is, the information that determines certain biological characteristics is passed from parents to offspring. Relatives of people with MS have a higher risk of developing the disease, and the stronger the genetic relationship, the greater the risk. I compiled an approximate risk of different types of relatives from multiple sources in Table 1.2. MS is not transmitted from parent to child by individual genes like in cystic fibrosis or polycystic kidney disease. Rather, numerous genes each contribute a tiny proportion of risk or protection. Almost all of these genes have something to do with the immune system, coding for cell-surface proteins on immune cells or cytokines, the chemicals involved in immune signalling. The gene most associated with MS is HLA DRB1*1501, which is part of the major histocompatibility complex (MHC) class II and helps the immune system distinguish self-proteins from foreign invaders. But having even two copies of the ‘bad’ gene only confers an 8.3-fold increased risk,13 so there is no single ‘MS gene’ and there is no genetic test for MS.

Luckily, although our genes are a risk factor for getting MS, there is no strong genetic effect on the course of MS. The risk genes in people with benign and aggressive MS are similar, and people with primary progressive MS have no greater ‘genetic load’ (number of risk genes) than those with relapsing MS.14 It is common for two close relatives to have dramatically different disease courses, even for identical twins!15 Indeed, there is powerful evidence that MS is largely driven by environmental risk factors. After all, the prevalence of MS varies dramatically by region. It is one in 222 in Syracuse, New York (USA),16 but only one in 25,000 in Cuenca, Ecuador!17 Ecuadorians are genetically similar to Hispanics in the United States, who have a similar risk to Europeans.18, 19

Table 1.2: Approximate risk of MS in relatives

Type of relative

Risk of developing MS

Identical (monozygotic) twin (100% genetic relatedness)

17–25%

Fraternal (dizygotic) twin (50% genetic relatedness)

2–5%

Parent, sibling, child (1° relative, 50% genetic relatedness)

1–3%

Aunt/uncle/niece/nephew/half-sibling (2° relatives, 25% genetic relatedness)

1%

Cousins (3° relative, 12.5% relatedness)

0.4%

Adopted child (unrelated)

0.4%

Unrelated (background risk in the United States)

0.3%

Note: As I used multiple sources, I rounded to the nearest whole number or gave a range. Comparison between the different percentages is limited as not all sources analysed all types of relatives. As yet we do not know the extent to which lifestyle changes modify these statistics.

Some environmental factors are difficult to control. For example, being born in the spring months is a slight risk factor for MS, possibly because of lower levels of vitamin D during the mother’s pregnancy that occurred mostly throughout winter. MS is also linked to Epstein Barr Virus (EBV), a virus that causes ‘mononucleosis’ (glandular fever) but often causes no symptoms. EBV is everywhere and has infected over 90 per cent of people worldwide,20 usually during childhood or adolescence. Nearly all people with MS have evidence of prior EBV exposure,21 and avoiding it may be impossible.

The prevalence of MS across different countries and even within countries varies greatly

We also see more MS in developed countries, and some researchers believe modern hygiene, and in particular the absence of parasite infections during youth, may derange the immune system and predispose people to autoimmune disease.22 Needless to say, genes and certain environmental risk factors are out of our control.

However, we also know that modifiable environmental risk factors are important. We see the prevalence of MS rising everywhere in the world. Regions where MS was historically rare, such as India, Iran and Mexico, are now seeing frequent cases. I have spoken with older international neurologists at professional conferences who assure me this is not simply increasing recognition. MS is challenging to diagnose, but it strikes early enough and is dramatic enough to be very apparent to local doctors in these countries. The only plausible explanation is that modern lifestyles associated with ‘Westernisation’ are causing the disease.

It seems that a ‘perfect storm’ of environmental factors must occur in a genetically susceptible host for MS to develop and progress. The genetically susceptible person may develop MS when exposed to certain environmental factors. Some of these factors, as discussed, are unavoidable, but I will introduce a few lifestyle behaviour modifications that can reduce a susceptible individual’s risk of developing the illness. We will learn further details about these modifiable risk factors in future chapters. The simplest example is smoking, which increases the risk of MS and speeds its progression. To a smoker with MS, quitting is the first and simplest advice I give.

Sunlight and vitamin D

Sunlight exposure is a significant consideration in addition to smoking. The risk of MS increases with distance from the equator as ultraviolet light exposure gets naturally lower (Figure 1.5). And within individual countries such as Australia, England, Sweden and the United States, the risk also varies with latitude; in Australia, for example, MS is six times more common in southern Tasmania (furthest from the equator) than Queensland in the north (closer to the equator). When there are two identical twins, and one has MS while the other does not, the unaffected twin tends to report more childhood sun exposure.23 The role of sunlight and vitamin D is thoroughly explained in Chapter 4 by Dr Conor Kerley.

Figure 1.5: Risk of developing MS in specific regions such as Africa,24 Al Quseir [Egypt],25 Alberta [Canada],26 Cuenca [Ecuador],17 Queensland,27 Sweden,28 Tasmania,27 and the United States. Graphic modified from Wikimedia Commons.

Suffice to say here that there is now strong literature around the role of adequate sun exposure and vitamin D supplementation in both preventing MS in those who are genetically susceptible and in modifying the course of the illness. Even low vitamin D during pregnancy increases future MS risk for the child.29 This is discussed in detail in Chapter 9, ‘Families and prevention’.

Despite the strong research on vitamin D, there is very good evidence for a vitamin-D-independent effect of sunlight exposure in addition to that of vitamin D alone. UV light exposure itself has unexpected effects on the immune system, a phenomenon known as ‘photoimmunology’. Research shows that sunlight stimulates suppressor T-cell function and induces anti-inflammatory cytokines such as IL-10 and IL-4.30 It also causes immune tolerance, meaning the body ‘tolerates’ itself better, without responding with inflammation.

Vitamin D is protective in MS, but the evidence for sunlight is even stronger

Is there a diet that helps individuals with MS?

We also believe diet plays a major role in the high rate of MS that has been seen in Western nations. The gastrointestinal tract has abundant gut-associated lymphoid tissue that regulates immune function,31 and changes in the gut microbiome (the microorganisms in the gut) are linked to MS.32, 33 One compelling theory says MS is provoked by deranged fat metabolism as people with the disease exhibit changes in their cell membrane fatty acid composition.34

Although the science is complex, and there is no single definitively proven diet for MS, the recommendations in the OMS Program are based on a preponderance of best available evidence. For instance, there is an association between saturated fat consumption and MS risk and prognosis.35–37 Dairy (milk, cheese, and so on) is also connected with MS,38 possibly because of the milk protein butyrophilin, which may trigger an immune response against myelin.39 High intake of salt, abundant in processed foods, may be another factor.40 The next Part, ‘The directions’, provides detailed and explicit lifestyle advice for MS.

Saturated fat, dairy and salt intake correlates with MS risk

What is the standard medical treatment for MS?

For acute MS attacks, steroids can help speed recovery. Common regimens in adults are 1000 milligrams intravenous Solumedrol© (methylprednisolone) or 1250 milligrams oral prednisone daily for 3–5 days. For severe relapses that do not improve with steroids, a dialysis-like procedure called plasma exchange can remove antibodies and inflammatory cytokines, sometimes leading to improvement.

In the long run, medications referred to as ‘disease-modifying therapies’ (DMTs) can help prevent attacks and new MRI lesions. They are for relapse prevention and do not necessarily improve the symptoms of MS, just like aspirin may lower risk of a second heart attack but does not reduce damage from the first heart attack. The DMTs approved by the US and European regulatory authorities in 2020 are summarised in Table 1.3, and other MS drugs are shown in Table 1.4. All of these drugs reduce the rate of attacks and development of new MRI lesions, and for some of the drugs there is additional evidence for reduction in long-term disability and brain atrophy.