Dr Gerald Coakley - Living with ME and Chronic Fatigue Syndrome

Dr Gerald Coakley is a consultant physician and rheumatologist specializing in post-viral and chronic fatigue who has worked in the NHS for more than thirty years. After training in London and Nottingham he was awarded an Arthritis Research Campaign Fellowship, allowing him to conduct research in immunology and immunogenetics relating to rheumatoid arthritis and Feltys syndrome at Guys Hospital. In the NHS he has a busy practice dealing with a wide variety of autoimmune and inflammatory conditions, such as rheumatoid arthritis, lupus and vasculitis. He was chair of the Education and Training Committee at the British Society for Rheumatology from 2019 to 2022. Since 2001 he has been involved in the care of people with ME/CFS and runs a private weekly fatigue clinic at Keats House, London Bridge, and at the Harley Street Clinic.

Beverly Knops, Dip COT, MRCOT, is a Specialist Occupational Therapist with more than thirty years experience. She has spent the majority of her career working with people experiencing persistent pain and fatigue. She worked in North Bristol NHS Trust (NBT) for twenty-nine years, starting in the rheumatology service, then moving into the Specialist Pain and ME/CFS services. Beverly says her main achievement at NBT was developing and leading the patient volunteer programme. She trained and supervised patients with lived experience who are now involved in all aspects of the service, including co-facilitating self-management courses. During this time she also spent a period of nine years working one day a week for the Bath Paediatric ME/CFS service, developing her knowledge and expertise in this age group. In 2012 Beverly started work as an associate therapist with Vitality360, a private company working exclusively with people experiencing pain and fatigue. In 2018 she was asked to take on the management of the company and, following a difficult decision in 2021 to leave the NHS, she now leads this specialist team full-time. Beverly is a trustee of the British Association of Clinicians working in ME/CFS (BACME), where she actively contributes to the training stream. She is passionate about sharing knowledge and skills with other health professionals and has run numerous training events throughout the country in person and online.

The Penguin Life Experts series equips readers with simple but vital information on common health issues and empowers readers to get to know their own bodies to better improve their health. Books in the series include:

Managing Your Migraine

by Dr Katy Munro

* * * * *

Preparing for the Perimenopause and Menopause

by Dr Louise Newson

* * * * *

Keeping Your Heart Healthy

by Dr Boon Lim

* * * * *

Understanding Allergy

by Dr Sophie Farooque

* * * * *

Managing IBS

by Dr Lisa Das

* * * * *

Living with ME and Chronic Fatigue Syndrome

by Dr Gerald Coakley and Beverly Knops

PENGUIN BOOKS

UK | USA | Canada | Ireland | Australia
New Zealand | India | South Africa

Penguin Books is part of the Penguin Random House group of companies whose addresses can be found at global.penguinrandomhouse.com.

First published by Penguin Life in 2022

Copyright Dr Gerald Coakley and Beverly Knops, 2022

The moral rights of the authors have been asserted

ISBN: 978-0-241-55722-8

This ebook is copyright material and must not be copied, reproduced, transferred, distributed, leased, licensed or publicly performed or used in any way except as specifically permitted in writing by the publishers, as allowed under the terms and conditions under which it was purchased or as strictly permitted by applicable copyright law. Any unauthorized distribution or use of this text may be a direct infringement of the authors and publishers rights and those responsible may be liable in law accordingly.

To Luiz, my partner of three decades, for nourishing, supporting and challenging me through thick and thin.

Dr Gerald Coakley

To my husband Simon, who has always believed in me. When I say, I cant do it, he always says Yes, you can.

Beverly Knops

Fatigue is a very common symptom, which we all experience at times. But in its more severe and persistent forms it is difficult to define and to explain, both for people with fatigue and for their doctors. No medical student goes to university to become a fatigue doctor, because this is a speciality that does not, at least yet, exist.

I (Gerald) first became curious about chronic fatigue syndrome, as it was then termed, around twenty years ago, shortly after I was appointed as a consultant rheumatologist in London and started to see patients privately. Most of the patients I saw were like those in my National Health Service (NHS) practice, which because I was a rheumatologist meant people with suspected inflammatory conditions such as rheumatoid arthritis or psoriatic arthritis, inflammatory spinal diseases like ankylosing spondylitis, autoimmune disorders such as lupus, or metabolic conditions like gout. But I was referred some private patients who had been receiving unorthodox treatments for what we now know as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and whose usual treating physicians had either retired or died.

The first patients I saw had been receiving something known as a Myers cocktail given intravenously on a regular basis for many years, and I was asked whether I would be prepared to continue prescribing this cocktail. Knowing nothing about it, I looked it up. It turns out that it was invented in the 1960s by Dr John Myers of Baltimore, Maryland, and has been used by complementary medical practitioners to treat a wide range of conditions, including ME/CFS, asthma, migraine, fibromyalgia (see ) and chronic sinusitis, among others. It is a bright-yellow liquid given by infusion, containing a blend of B vitamins, including thiamine, niacinamide, pyridoxine and hydroxocobalamin (vitamin B12), as well as vitamin D, magnesium and calcium.

Intrigued, I looked for evidence that this treatment was effective in ME/CFS. I have a PhD in molecular immunogenetics, and at the time was chairing a national guideline group seeking to define the optimal treatment for septic arthritis (a life-threatening bacterial joint infection), so I was very familiar with the world of evidence-based medicine grounded in systematic reviews of the scientific literature. When I looked into Myers infusions, it turned out that while many people with ME/CFS report taking vitamin supplements and believe they are helpful, there was absolutely no clinical-trial evidence to suggest Myers infusions are in any way effective in treating ME/CFS. Indeed, since then multiple published systematic reviews have concluded that vitamins are no better than placebos in ME/CFS unless the patient has a proven vitamin deficiency, and there are in fact no approved treatments specific to ME/CFS. I was happy to see the patients, but not to offer them a treatment that I was convinced was ineffective and not without risk.

I drew several conclusions from these early encounters. First, the absence of any effective treatment for a condition as potentially disabling as ME/CFS does not reflect well on the current state of medical research and practice. Second, when conventional medicine has nothing to offer, people with disabling conditions like ME/CFS will quite rightly not give up trying to improve their health, but will look to alternative and fringe medicine to find support. When they do that, they are, unfortunately, at the mercy of people who are credulous, ill informed or, worse still, simply want to exploit their vulnerability for financial gain. I have met patients who have spent thousands of pounds on quack treatments such as ozone therapy, or on fake diagnostics such as the Vega machine (an electroacupuncture device developed in the 1970s, which has been shown in numerous studies to be useless). Third, some doctors in the private sector appear to be in on this potentially lucrative trade, which I can only regard as disreputable. It was not a path I wanted to follow myself. Incidentally, today Myers infusions are beloved by some celebrities and people with more money than sense to help them recover from hangovers, to prevent wrinkles or as a general pick-me-up. There are even companies that market Myers cocktail as a way to keep your immune system healthy, for reinvigoration and to transform your health, at a cost of 250 per infusion.