Diagnosis and treatment of Chronic Fatigue Syndrome, Myalgic Encephalitis and Long Covid THIRD EDITION E-Book
Sarah Myhill
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- Herausgeber: Hammersmith Health Books
- Kategorie: Ratgeber
- Sprache: Englisch
Since the publication of its first edition in April 2014, Dr Myhill's guide to understanding and overcoming CFS/ME has become a must-read for sufferers from this poorly understood condition. As one example of the nearly 300 5-star reviewers on Amazon says: 'Extremely useful, well written, concepts well explained, absolutely great investment of money and time in reading it.' In the seven years since the second edition was published (January 2017) both new research and new clinical findings have thrown further light onto a condition that for sufferers is life-stopping but for many doctors is 'all in the mind'. Most recently, the UK's NICE guidelines have been updated and Long Covid has changed mainstream perceptions of post-viral fatigue, while Dr Myhill has looked further beyond mainstream medicine into often-ignored more traditional treatments including methylene blue and DMSO. Dr Myhill, supported by expert patient Craig Robinson, has fully rewritten and updated her book to include new insights throughout and new chapters on the PK diet, photodynamic therapy, micro-immunotherapy, ME and Long Covid, and the politics of CFS and ME.
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Reviews of Diagnosis and Treatment of Chronic Fatigue Syndrome, Myalgic Encephalitis and Long Covid
Dr Myhill has written an extraordinary book. She is the number one authority on CFS in the UK. Whereas many doctors dismiss the condition, she explains what it is, what has gone wrong in the body, using appropriate tests that are not done by mainstream medicine, and tells people what they can do about it. Whereas mainstream medicine only uses drugs to deal with a particular symptom, Dr Myhill explains the reasons ‘Why’. In my opinion, you will never cure anything unless you understand and deal with the why.
Dr P J Kingsley MB BS, MRCS, LRCP, FAAEM, DA, DObst, RCOG
This book is logical and evidence-based but is still an easy read. Dr Myhill has made the mitochondrial story clear for the non-expert. It makes essential reading for family members or friends of CFS sufferers. This book will help these patients to obtain understanding and effective management from their physicians.
Dr Sybil Birtwistle MB ChB, DObst, RCOG, DCH, Post Graduate Tutor, British Society for Environmental Medicine
This book is an invaluable tool to recover from fatigue-related disorders for patients and practitioners alike! It is based on years of clinical experience, backed by research; written in a clear, concise way with lots of practical instructions – and from what I can see using these methods in my practice: it works!
Dr Franziska Meuschel MD, PhD, ND, LFhom
The first edition of this book became a key reference that was readable and upbeat, full of information explaining complex issues of cell biology together with practical tips. ... Many important tests are explained in detail together with their role in a person’s recovery plan. The folly of the mainstream approach to ME is exposed and is truly shocking. The style is flowing; the evidence is poignant and the references are meticulously made, yet easy to follow. Dr Myhill has opened the minds of thousands of ME sufferers, and their carers, as to how to seize control of their health in an era when evidence is mounting that the causes of many chronic conditions can be traced to our lifestyles and environment.
Dr Apelles Econs MRCS, LRCP, Allergist ii
Brilliant! This book offers the most complete, logical, practical and optimistic guide for people trying to recover from CFS that I am aware of. If every doctor could also take its contents on board, the management of CFS would be revolutionised.
Dr Charles Forsyth MB BS, FFHom
Over the years, working as a General Practitioner, I have recommended Dr Myhill’s work to hundreds of patients. Her approach combines an in-depth understanding of human physiology with years of practical experience, and the use of cutting-edge laboratory testing, to diagnose and treat the root causes of complex chronic diseases. Written with humour and compassion, Dr Myhill has put together a simple step-by-step guide for patients, to take back control of their own health and start their journey to recovery. I am delighted that I can now recommend this book to every patient.
Dr Jens Rohrbeck MD (Dr med), MPhil, GP and Functional Medicine Physician
This book is a ‘must have’ for everyone suffering from CFS (and their doctors). It explains all the different aspects of this complex condition, and details ways that each patient can contribute to their own recovery. Dr Myhill has tirelessly dedicated much of her career to improving the quality of life of CFS patients for whom conventional approaches (antidepressants, cognitive behavioural therapy and graded exercise) have not been enough. Her commitment, genius and sense of humour come across wonderfully in these pages, encouraging and supporting those with this terrible condition not to give up.
Dr Nicola Hembry BSc, MB BS, MSB, PGDip
The brilliant work of John McLaren-Howard, Sarah Myhill and Norman Booth reveals that CFS/ME is due to mitochondrial dysfunction. This discovery revolutionizes the world’s understanding of CFS and how to investigate and treat the biochemical abnormalities. Dr Myhill’s book has never been more needed.… The epidemic of CFS, like breast cancer, has increased since contraceptive hormone and HRT use became widespread. Mitochondrial dysfunction has many causes, including toxic DNA adducts, but avoiding progestin and oestrogen use is vitally important for recovery from CFS.
Dr Ellen Grant MB ChB, DObst, RCOG
Dr Myhill breaks new ground in her approach to chronic fatigue syndrome and demonstrates clearly, with compelling scientific evidence, that this condition is not psychological but has treatable physical causes. She gives detailed guidance on practical ecological measures that need to be followed to effect recovery. This is a book which should cause many doctors and health professionals to radically revise their understanding of CFS and gives sufferers real encouragement and hope for their future health.
Dr John Meldrum MB ChB, MRCGP, DA, DCH, DObst RCOG, HTD iii
What really struck me about this book is the degree to which it allows people with CFS to be in charge of their own recovery, and to have the confidence, through the authority of the author, to know what to ask for from health professionals. It explains with real clarity the complex biochemical processes underlying chronic disease and CFS, and the link with allergies, diet, micro-organisms and aspects of the Western lifestyle. There is a detailed and clear discussion of the tests available, how to interpret them, and what to do to get better. All this without ignoring the importance of good lifestyle habits, psychological health and the right kind of exercise. A fantastic book for all health professionals too.
Dr Dee Marshall MB BS, MFHom, WellnessMedical, London, UK
Dr Myhill’s wonderful book presents the clearest and most helpful information I have ever read on what chronic fatigue syndrome actually is and what the many possible causes of it are. This is the only book that I’ve found that presents a comprehensive approach for assessing the underlying causes of CFS and treating them in a way that may be tailored for the individual patient. Understanding how mitochondrial failure can arise, why mitochondrial function problems are often a major factor in CFS and the approaches for restoring good mitochondrial function should form part of all medical training. Dr Myhill’s book should be a standard text in all medical schools as well as being essential reading for all CFS patients and their doctors. It is easy to read, laden with information and shows practical ways of actually assessing and treating CFS. Loved it!
Paul Robinson BSc (Hons), author of Recovering with T3 and The CT3M Handbook
Drawing on decades of clinical experience, and unparalleled success in restoring health, hope and energy to thousands of CFS patients, Dr Myhill brings solid scientific evidence together with biological common sense to explain how to recover from this ghastly and increasingly common illness. She describes the underlying cellular mechanisms in a way that everyone can understand, demonstrating simply the physiological basis of low energy production in CFS. This is an aspect that is largely ignored by most current approaches to CFS, but Dr Myhill shows clearly that CFS is in your mitochondria, not in your mind! This book is an invaluable step-by-step guide to recovery, for patient and physician alike. I would not be without a copy in my clinic!
Dr Jenny Goodman MA, MB ChB
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SM: I dedicate this book to Dr John McLaren-Howard and Professor Norman Booth. John’s brilliance in developing mitochondrial function tests demonstrated that patients with fatigues have real pathology. He showed they were mitochondriacs not hypochondriacs. Norman put this on the world stage by getting this work published with his usual academic rigour. A big thank you from patients and physicians alike!
CR: Once again it has been an absolute pleasure and privilege to work with Sarah. I dedicate this book to my two children, Gina and Conor. They have never known me without ME; I hope that one day they will. In any case, one thing is for sure; I have learnt more from them than they have from me. They are my pride and joy and I have been inspired by them more than they will ever know. Here is their wisdom:
Gina Hull – ‘Always be a little kinder than necessary’ (J M Barrie (9 May 1860 – 19 June 1937))Conor Robinson – ‘At the end of the game, the king and the pawn are placed in the same box’ (Old Italian Proverb)v
Contents
About the Authors
Dr Sarah Myhill mb bs qualified in medicine (with Honours) from Middlesex Hospital Medical School in 1981 and has since focused tirelessly on identifying and treating the underlying causes of health problems, especially the ‘diseases of civilisation’ with which we are beset in the West. She has worked in the NHS and independent practice and for 17 years was the Honorary Secretary of the British Society for Ecological Medicine, which focuses on the causes of disease and treating through diet, supplements and avoiding toxic stress. She helps to run and lectures at the Society’s training courses and also lectures regularly on organophosphate poisoning, the problems of silicone, and chronic fatigue syndrome. She is also Medical Director of UK Medical Freedom Alliance, Medical Director of CNM, and has been awarded an Honorary Diploma in Naturopathic Medicine in recognition of her outstanding contribution to the field of Natural Medicine. Visit her website at www.drmyhill.co.uk
Craig Robinson ma took a first in Mathematics at Oxford University in 1985. He then joined Price Waterhouse and qualified as a Chartered Accountant in 1988, after which he worked as a lecturer in the private sector, and also in the City of London, primarily in Financial Sector Regulation roles. Craig first met Sarah in 2001, as a patient for the treatment of his ME and since then they have developed a professional working relationship, where he helps with the maintenance of www.drmyhill.co.uk, the moderating of Dr Myhill’s Facebook groups and other ad hoc projects, as well as with the editing and writing of her books.
Preface
This third edition of Diagnosis and Treatment of Chronic Fatigue Syndrome, Myalgic Encephalitis and Long Covid is written on a ‘need-to-know’ basis, as follows:
The ‘need-to-know’ principle or basis is technically a term used by Governments, and often their Armed Forces, to denote situations where people are told the bare minimum to carry out their duties – i.e., up to their respective security clearance levels only. The Battle of Normandy in 1944 is a classic example of this. Many thousands of military personnel were involved in planning the invasion, but only a small number of them knew the entire plans of the operation; the rest only knew the data needed to complete their small part of the plan.
In the context of this book, the ‘need-to-know’ basis is not intended to obscure important details from the reader but rather to keep the size of the book to a minimum whilst at the same time conveying all that is needed to be known and, hopefully at the same time, keeping you, dear reader, entertained at regular intervals throughout. Learning happens xiiibetter if enjoyment is involved. In essence, the authors are aware that many readers are likely to be cognitively challenged and so this ‘need-to-know’ basis is the best format, and this is also why we have included short chapter summaries.
If you do wish to know more, then my 500+ page website, www.drmyhill.co.uk, and our books Ecological Medicine, The Infection Game and Paleo-ketogenic: The Why and the How supply most of the answers, but for the time being, let us proceed as stated, safe in the knowledge that Douglas Adams agrees with us when he wrote in The Hitchhikers Guide to the Galaxy that he wished to be protected from things he didn’t need to know. Indeed, he wished protection from even knowing that there were things that he didn’t need to know!
Key terminology
The following abbreviations are used in this book:
CFS – chronic fatigue syndrome
ME – myalgic encepahalitis
LC – long Covid
What these terms actually mean is detailed in Chapters 2 and 10, but in brief:
Chronic fatigue syndrome (CFS) is characterised by poor energy delivery mechanisms.Myalgic encephalitis (ME) is characterised by poor energy delivery mechanisms and inflammation.Long Covid is ME which follows acute Covid infection and/or Covid-19 mRNA gene therapy ‘vaccines’.Poor energy delivery is caused by poor diet and gut function, poor breathing, poor sleep, mitochondrial failure and poor adrenal and thyroid function.
Inflammation occurs when the immune system is activated. The immune system is activated in allergy, chronic infection and autoimmunity.
Stylistic note: Use of the first-person singular in this book refers to me, Dr Sarah Myhill. One can assume that the medicine, biochemistry and opinions are mine, as edited by Craig Robinson, and that the classical and mathematical references are Craig’s.
Introduction
This book details the practical reality of recovering from chronic fatigue syndrome (CFS), myalgic-encephalitis (ME) and long Covid (LC). I have been working with sufferers of these conditions since 1981, in the cases of CFS and ME, when I qualified as a doctor, and for the last three years in the case of LC. The early stages of the recovery journey I know, from that experience, are non-negotiable and essential. Many will recover simply by implementing these early stages. Some of the later stages are still on trial, but biologically plausible, safe and eminently doable. Recovery is like building a house – you have to start with the foundation stones of diet, gut function and micronutrients, and then build on that. It is not a case of either/or; to restore health you have to do the whole shooting match.
The Third Little Pig in the well-known fairytale* knew this well, when he built his house from brick, rather than straw or sticks. It took longer to build but it (and I ad-lib a little here) had good foundations and so the Big Bad Wolf could not blow it down. Do take the time and effort to put in place the important foundations for your recovery – they will serve you well.
I am painfully aware that many with CFS, ME and LC lack the energy and resources and may be dismayed by the prospect of the journey to wellness. For that reason, in this xvibook I have tried to describe the route to recovery that is the shortest, quickest and most frictionless. I have tried to give the Why in sufficient detail to provide sufferers with the intellectual imperative to make the necessary changes, but not to bog them down in detail. I then move on to the How. Again, I have consciously eschewed some of the detail so that readers do not lose the logical progression and maintain the momentum for recovery. I only include the absolute basic interventions which are universally necessary. I have learned this from over four decades of trial and error. Throughout, I direct readers to my other books should they wish for more detail, but it is not necessary to purchase these for most to recover. As already emphasised in the Contents section, this book is written on the need-to-know principle.
I start with the ‘Rules of the Game’ and move on the ‘Tools of the Trade’. These tools need to be safe, multi-tasking, easy to implement and available to all because most of my patients are unable to work and cannot afford expensive treatments. They are not RBs†; they are PBs. (Hereinafter in this book, ‘RB’ shall refer to ‘Rich Bastard’ and ‘PB’ shall refer to ‘Poor Bastard’. Isn’t the English language wonderful? In RB, the ‘B’ elicits disdain in the reader, whereas in PB, it evokes sympathy, even empathy!)
These Tools of the Trade are not just for those with CFS, ME and LC. They are also the starting point to prevent and treat all diseases of Westerners – degeneration, dementia, cancer and heart disease. It means I can tell my patients with complete confidence that, with all these regimes in place, they will also live to their full potential in terms of quality and quantity of life. Indeed, fatigue is often an early warning symptom of such disease, a symptom for which conventional medicine has little to offer with its symptom-suppressing prescription drugs. By suppressing symptoms, the warning signs are missed and the underlying pathology is accelerated.
We do not have enough therapists to treat the epidemics of CFS, ME and LC that now exist. There is only one person that will get you well and that is you. No-one is better xviimotivated. No-one is more in touch with their symptoms and response to interventions than you. No-one knows your body better than you. You must take full responsibility for your own recovery because it is a sad fact that doctors won’t. All the Tools of the Trade I give you are freely available (by which I mean you can access them without reference to a doctor), intrinsically safe and of proven effectiveness.
First you must learn to understand why you are suffering symptoms and why they are so important and learn to listen to them, not fight them. Do not suppress symptoms with drugs or addictions. Symptoms are the signposts which direct you to the path of recovery. Read on and learn of the mechanisms that result in symptoms because these have obvious implications for treatment. Keep on asking all the right questions because the answers will come, sometimes from the most unlikely direction. I too am constantly asking questions; I too am on a steep learning curve; but I trust and hope this book will launch you to good health.
Take a leap of faith and just do it.
Personal note from Craig
The advice not to fight your symptoms is of the utmost importance, but it does not mean ‘surrender’ to them. It means work out what they mean and then box clever. We have all been indoctrinated in the Western World that ‘fighting an illness’ means a particular thing – getting up again and again and pushing through the symptoms of pain and fatigue or whatever. This will not work with CFS, ME and LC. It will only serve to knock you back and often further down. You need to understand and address the mechanisms of those symptoms, and this is what this book is all about. I am reminded of what Napoleon said of Wellington after the Battle of Waterloo (perhaps apocryphally): ‘He won by sitting on his arse!’ Now I am not suggesting you sit on your arse, because you need to do things, some quite difficult things, in order to get better, but I hope you understand the point. Do not charge headlong into battle against CFS, ME or LC. You will lose. Instead, follow the strategy in this book and fight smart rather than hard. xviii
*The Three Little Pigs is a fable that dates back in printed form to 1840, but is thought to be much older than that and, in one of its earliest forms, is set on Dartmoor with three pixies and a fox.
†I read a newspaper article about a merchant bank that decided to target its 100 wealthiest clients for a new investment scheme. A ‘round robin’ letter was prepared and sent down to the communications department so it could be personalised using the ‘mail merge’ facility. The minion in that department forgot the substitution; consequently, the 100 wealthiest clients received a letter which opened up ‘Dear Rich Bastard’.
Chapter 1
The road map* for recovery
We have symptoms for very good reasons – they protect us from ourselves. Without the symptom of pain from a broken leg, we would continue to walk until the bone broke through the skin, infection would set in, and we would die. Symptoms point to underlying pathology, which is why symptom-suppressing prescription drugs are so dangerous. We use addictions to deal with fatigue and stress: caffeine, sugar and cocaine for a short-term hit of false energy; alcohol, nicotine and cannabis to mask symptoms of stress. Any such regular use, points to the start of pathology.
Doctors routinely muddle clinical pictures and diagnoses. A clinical picture is simply a collection of symptoms, but so often these are presented as a diagnosis. Patients tell me they have been ‘diagnosed’ with irritable bowel syndrome and given symptom-supressing drugs, but the actual diagnosis of food allergy or upper fermenting gut has not been considered. Patients are left with a lifetime of pills, which drive other diseases, instead of being cured by simple dietary changes. 2
‘Chronic fatigue syndrome’ (CFS) is not a diagnosis. It is a clinical picture which results from poor energy delivery mechanisms.
‘Myalgic encephalitis’ (or ‘encephalomyelitis’ – ME) is not a diagnosis. It is a clinical picture which results from CFS and inflammation. Inflammation occurs when the immune system is activated. This may be for reasons of allergy, autoimmunity, chronic infection, toxicity or healing and repair.
Long Covid (LC) is not a diagnosis. It is the clinical picture of ME but is given the name LC because it follows an acute Covid infection or mRNA gene therapy ‘vaccine’.
Fatigue is the symptom that protects us from ourselves
We all have a bucket of energy to spend in a day. If we spend more energy than is in the bucket, then we die.†
Spending energy is fun. It gets things done. So, symptoms of fatigue have to be very nasty, or we would push on through. Such symptoms prevent athletes from winning gold medals – they are very effective at saving our lives! This is why ‘graded exercise’ for CFS and ME is such a nonsense and also dangerous – it kicks another hole in an already small energy bucket. And this is also why pacing (see Chapter 9) is so important – it allows us to spend energy wisely.
At last, after much campaigning, the UK’s NICE (National Institute for Health and Care Excellence) has recognised the utter futility and danger of graded exercise therapy (GET) for CFS and ME patients in its new Guideline1 in which it states that:
1.11.14 Do not offer people with ME/CFS:
any programme .… that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy.3
Before I met him, Craig was persuaded to ‘have a go at GET’ (as his GP suggested). In typical fashion, he engaged fully and consequently, after 10 months of pushing and falling and pushing again, and falling again, he landed in bed… for nearly five years. Prior to engaging with GET, Craig was perfectly ambulant, and was looking for part-time employment. He could mow his lawn (and his lawn is 80 yards/metres long and at least 4 yards/metres wide) and he could drive his car for, say 3 hours, perfectly safely. He played his beloved tennis with his daughter and son.‡ All these things, and much more, and many future possibilities, were taken away from him by GET.
Evidence of harm caused by GET was submitted as part of the NICE review of ME/CFS guidance.2 It concluded that: ‘Fifty-one per cent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health.’ Indeed, in one of the those eight related studies (‘surveys’) reviewed, an astonishing 82% of patients reported a worsening of health following GET.3 In this paper, authors Keith Geraghty and colleagues, concluded that: ‘…graded exercise therapy brings about large negative responses in patients (54%–74%).’ But I digress. There is more on this in Chapter 23.
Inflammation produces symptoms which protect us from ourselves
Local inflammation is characterised by redness, heat, swelling, pain and loss of function. This makes us spare or rest the afflicted area, so we limp, hold ourselves in an awkward position, find other ways of doing things… or whatever.
General inflammation is characterised by malaise (feeling ’flu like), fever and ‘illness behaviour’, otherwise known as ‘man ’flu’. This makes us want to go to bed, wrap up warm, feel depressed and be antisocial. 4
The immune system is greatly demanding of energy and, when busy, this kicks an immunological hole in the energy bucket and that leads to more fatigue.
So, this gives us a road map for recovery:
First, spend energy wisely – This is called pacing. It is very boring but essential in the early days.
THEN improve energy delivery mechanisms.
THEN identify the holes in the energy bucket which may be the immunological hole (see Chapter 19) or the emotional hole (often post-traumatic stress – see Chapter 21).
To illustrate the overall principle, I refer to one of our favourite and most apposite quotations:
Annual income twenty pounds, annual expenditure nineteen pounds, nineteen and six, result happiness. Annual income twenty pounds, annual expenditure twenty pounds nought and six, result misery.
Mr Micawber in David Copperfield by Charles Dickens
And so, it is with energy:
When the gap is positive, we have energy.
When the gap narrows, we have misery and fatigue.
When the gap is negative, we die.
In treating CFS, ME or LC, and indeed in postponing death, we have to maximise energy delivery mechanisms and minimise useless or unwanted energy expenditure in order to create a positive gap. However, first we have to recognise the symptoms of the above because these will guide us to the best treatments. 5
Where do you go from here? The road map
As I have said, CFS is not a diagnosis. It is a clinical picture made up of symptoms which result from poor energy delivery mechanisms. Symptoms are found in Chapter 2 and treatments are found in Chapters 3-9.
Likewise, ME and LC are not diagnoses. They are clinical pictures which result from CFS plus inflammation. Inflammation occurs when the immune system is activated. Again as I have said, this may be for reasons of allergy, autoimmunity, chronic infection, toxicity or healing and repair. Symptoms of ME and LC are found in Chapter 10. You must still do all the treatments in Chapters 3-9, and then add in the treatments found in Chapters 11-20 that are relevant to your case.
CFS, ME and LC sufferers must all consider the emotional holes in the energy bucket (see Chapter 21). CFS, ME and LC sufferers can expect to get better, as shown in Chapter 22 (the journey to recovery). The politics of CFS, ME and LC are discussed briefly in Chapter 23.
Summary
To overcome CFS, ME or LC, you need a road map.Craig says: Do not try random interventions ‘willy nilly’§. This is from my own experience before I met Sarah.This book is a road map developed over decades of experience and academic study.This road map works.287References
1. NICE Guideline [NG206] on ME/CFS. National Institute for Health and Care Excellence, UK. www.nice.org.uk/guidance/ng206/chapter/Recommendations#managing-mecfs (accessed 1 October 2023)
2. Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME 2011; 19(2): 59-11. www.researchgate.net/publication/216572185_Reporting_of_Harms_Associated_with_Graded_Exercise_Therapy_and_Cognitive_Behavioural_Therapy_in_Myalgic_EncephalomyelitisChronic_Fatigue_Syndrome
3. Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. Journal of Health Psychology 2017; 24(10). doi: 10.1177/1359105317726152 http://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
*Historical note: The Romans knew the value of a good road map. The Dura-Europos map is the oldest known map of (a part of) Europe in its original form. It is a fragment of a map drawn onto a leather portion of a shield by a Roman soldier in c 235 AD. It depicts several towns along the northwest coast of the Black Sea. Better still, the Tabula Peutingeriana, dating to about 350 AD, plots the extent of the Cursus publicus, the Roman road network that ran from Europe and North Africa to West Asia. It is not to scale, or even correct in its orientation – the Mediterranean Sea is a thin sliver and the Italian Peninsula runs east-west – but it did the job, much as the London Underground map does the job today, being itself not to scale nor perfectly oriented. But, the trophy for the oldest known road map goes to the Ancient Egyptians: the Turin Papyrus Map was drawn around 1160 BC and depicts routes (roads) along dry river beds through a mining region of Thebes.
†Historical note: The first recorded example of this is the athlete Pheidippides running from Marathon to Athens after the battle, to announce the Greek victory with the word ‘Nenikēkamen!’ (Attic: νενικήκαμεν; We’ve won!), whereupon he promptly died of exhaustion.
‡The saying goes, you should leave Oxford with a First, a Blue or a spouse. Craig missed out on an Oxford Blue in Lawn Tennis – he was first reserve in the University Team but never actually played a rubber as none of his team mates were ever injured or sick. However, as Meatloaf says in his song of the same title ‘Two out of three ain’t bad’ and Craig is happy with his First and even happier with his spouse!
§Linguistic note: ‘Willy-nilly’ derives from the obsolete phrase ‘will I, nill I’, or ‘I am willing, I am unwilling’.
Chapter 2
Chronic fatigue syndrome
The symptoms of poor energy delivery mechanisms
I am somewhat exhausted; I wonder how a battery feels when it pours electricity into a non-conductor?
Sir Arthur Conan Doyle, British writer and physician (22 May 1859 – 7 July 1930)
Most, if not all, of my CFS, ME and LC patients know exactly how that battery feels. These are the symptoms described in this chapter. It is important to understand these symptoms because the starting point to treat all such is the same – improve energy delivery mechanisms.
Poor energy delivery to the body
Energy is produced in almost every cell in the body.
Poor energy delivery results in physical fatigue. We all feel tired at the end of the day, but pathological fatigue is characterised by delay – overdo it one day and we ‘pay’ for it the next day, and possibly for several days. This is called ‘post-exertional malaise’. Part of the mechanism of this has to do with lactic acid. Over 90% of all our energy comes from aerobic metabolism – we ‘burn’ fuel, acetate with oxygen in our mitochondrial engines to make energy.* One molecule of acetate creates 32-36 molecules of ATP, the energy molecule, depending on the efficiency of our engines. If our engines are overwhelmed, then we move temporarily to anaerobic energy 7production. This is horribly inefficient: 1 molecule of acetate fuel generates just 2 molecules of ATP by this route. The anaerobic process also makes lactic acid. Not only is this painful, but it also blocks our mitochondrial engines. This might seem like a rotten piece of design, but actually it protects us from ourselves – this is the mechanism by which we are stopped in our tracks by pain and fatigue before we go into negative energy balance and die!
This mechanism further explains the imperative to pace activity. Lactic acid is painful and has to be converted back to acetate. This process is called the Cori cycle and it takes 6 molecules to achieve. Think of ATP, the energy molecule, as money. To achieve an 8action we can ‘borrow’ 2 molecules of ATP, but we have to pay it back with 6 molecules. This is like borrowing energy from a loan shark.
Poor energy delivery to muscles
Poor energy delivery to muscles results in weak muscles with no stamina. Overdo things slightly and you get lactic acid burn. This is painful.
Poor energy delivery to the brain
Many sufferers of CFS, ME and LC are convinced that they are developing dementia. Indeed, dementia is the symptom that occurs when energy delivery to the brain is impaired. It can be reversed by improving energy delivery mechanisms. We all know the symptoms: foggy brain, inability to concentrate or multitask and, sometimes, an inability to find the right word, or maybe use of ‘opposite’ words to those intended, poor short-term memory and so on. Some individuals cannot even follow the plot of a film on TV. It is scary.
Personal note from Craig
At one point, in around 2001, I was totally bedridden, and this lasted for a number of years. My cognitive ability was so low that at one point I could not count from one to 10. This level of brain fog lasted for about 10 months. It was very scary. I thought my brain was totally shot. It wasn’t – but it did need vastly improved energy delivery. And when that energy started to get through, my brain fog lifted, and I began to help Sarah with her website and her books. During the first Covid lockdown, I wrote a mathematics book, Rockets and Raindrops, about varying mass problems. This was one of my lifetime ambitions and for two brief periods, Rockets and Raindrops was seventh and 15th in Amazon worldwide sales in the ‘Applied Mathematics’ category, due to large orders from Japanese schools! My point is that I truly believe that, no matter how bad 9things are, you can always improve. You can still realise dreams. I was desolate during the early 2000s and had given up on any kind of recovery. If someone had predicted all of the above, I would have probably sworn at them and thrown whatever I could at them. But I stuck with the road map, as provided by Sarah, and I was supported and loved by my incredible wife, Penny, and spurred on by my amazing children, Gina and Conor, who ‘took’ me for who I was, as children do. Please, dear reader, never ever give up. There are good days ahead of you, waiting for you to be there. By the way, as of today (13 November 2023), Rockets and Raindrops is placed at position 5105 in the ‘Applied Mathematics’ category on Amazon.
Low brain energy can also result in intolerance of light, noise, smell and sometimes touch. The business of processing information requires large amounts of energy. About one third of the resources of the brain go into transforming the signal that arises from light on the retina to a three-dimensional depiction of the world around us. My worst afflicted patients only feel comfortable in a darkened room.
Then the brain gives us symptoms to stop us spending energy, such as depression (which makes us antisocial) and procrastination.
I think the symptom of feeling stressed is one that the brain gives us when it knows it does not have the energy to deal with demands.
Poor energy delivery to the heart
Poor energy delivery to the heart manifests in two ways – with POTs (postural orthostatic tachycardia syndrome) and pain. Heart muscle pain is called angina.
POTs
The heart is a muscle – impair energy delivery and it can no longer beat powerfully. This presents with low blood pressure. I reckon a BP of 100/60 mm Hg or less is pathological. 10
There is much less work involved in pumping blood round the body on the flat, so the severely afflicted person spends their life horizontal. We all know this. We rest sitting down with our feet up. Problems arise when we stand up (the ‘postural orthostatic’ bit) – circulating blood in the vertical position means the heart has to increase output by about 20%. However, our sick CFS heart cannot increase energy delivery mechanisms – it is already working to its full ability. The only way it can increase cardiac output in the short term is to beat faster (the ‘tachycardia’ bit). But beating faster is also demanding of energy; this is not sustainable. It beats less strongly, blood pressure falls and, unless our sick patient lies down quickly, they faint and drop unconscious. This mechanism has been confirmed by Dr Peckerman who measured cardiac output by impedance cardiography and found that:
…cardiac output in healthy people will vary from 7 litres per min when lying down to 5 litres per min when standing. In healthy people this drop is not enough to affect function. But in CFSs the drop may be from 5 litres lying down to 3.5 litres standing up. At this level the sufferer has a cardiac output which causes borderline organ failure. In CFS the low cardiac output is caused by poor muscle function and therefore strictly speaking is a cardiomyopathy. This means the function of the heart will be very abnormal, but traditional tests of heart failure, such as ECG, ECHOs, angiograms etc, will be normal.1
I have a few patients for whom the symptoms of POTs do not resolve despite doing all they can to improve energy delivery mechanisms. It may be due to an infection of the vagus nerve; this is impossible to prove but biologically plausible since herpes viruses target nerves. Indeed, Michael Van Elzakker has hypothesised that in ME, which is driven by infection (that is to say, the clinical picture is one of poor energy delivery and inflammation), the vagus nerve has been infected and this also results in POTs.2
Another possibility is that this autonomic dysfunction may be related to over-breathing (see Chapter 6: Oxygen).
Some of these patients respond to TENS stimulation of the vagus nerve. This is work in progress. 11
Angina
The term ‘angina’ simply means pain in the heart. It is caused by lactic acid burn. The cardiologists recognise the clinical picture of angina as a result of poor blood supply to the heart when demands exceed oxygen delivery. There is a switch into metabolism without oxygen (anaerobic) and lactic acid is painful.
The patient with atherosclerosis (blocked arteries) immediately feels the pain, stops activity, and the oxygen supply is restored as demand falls and a normal mitochondrial aerobic engine clears the lactic acid. This take seconds to minutes. It is a very different picture for the mitochondriac – that is, the CFS sufferer. They get lactic acid burn when energy demand exceeds energy delivery because the mitochondrial engine is slow – too slow even to clear the lactic acid. They suffer angina which lasts minutes to hours. They are not diagnosed with angina by cardiologists because the clinical picture does not fit and imaging of the arteries (angiography) shows coronary arteries to be normal. They are instead diagnosed (please try not to laugh at this point) with ‘atypical chest pain’. But we now know this is loan-shark pain – not a diagnosis, but a clinical picture.
Poor energy delivery to the liver
At rest the brain consumes 20% of total body energy production, the heart 7% and the liver up to 27%. Much of this is to maintain our internal homeostasis (metabolic balance), including detoxification – that is, the clearing out of unusable/toxic substances that we take in and our body creates. Poor energy delivery means we become slow detoxifiers and symptomatic of this is intolerance of drugs, including alcohol, antidepressants, statins and many more. Many patients are told that their symptoms can be improved with antidepressants, they then find they are intolerant of these, stop them and are accused of not complying with treatment. Further medical support may then be withheld. 12
Poor energy delivery to the immune system
Our immune system is our standing army with which we fight acute infection. Armies need white cell officers and soldiers with mobility, intelligence, communication skills, weapons and firepower. Having destroyed the enemy, our white cell troops then heal and repair the damage. These processes all require energy. Poor energy delivery is a cause of immune suppression. It may also lead to poor decision making, risking civil war (autoimmunity) or damage to non-threatening tourists (allergy).
Poor energy delivery to cells and organs
If energy delivery to cells is slow, then organs go slow. Ultimately this leads to organ failure, degeneration and cancer.
Summary
All the consequences of poor energy delivery described in this chapter explain why improving energy delivery is the starting point for treating not just fatigue syndromes but all disease processes. In summary:
Poor energy delivery affects all parts of the body and gives rise to symptoms.These symptoms include: painfatigueweaknessbrain foganginaPOTspoor detoxification and subsequent lack of tolerance of drugsweakened immune system and(in the longer term) organ failure leading to degeneration and cancer.So, having described what poor energy delivery can look like, let’s go on to describe the mechanisms of such poor energy delivery and how to fix them. We must understand the mechanisms in order to put them right.
References
1. Peckerman A, LaManca JL, Dahl KA, et al. Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome. Am J Med Sci 2003; 326(2): 55-60. doi: 10.1097/00000441-200308000-00001. https://pubmed.ncbi.nlm.nih.gov/12920435/
2. VanElzakker MB. Chronic fatigue syndrome from vagus nerve infection: a psychoneuroimmunological hypothesis. Med Hypotheses 2013; 81(3): 414-423. https://pubmed.ncbi.nlm.nih.gov/23790471/
*Footnote: There is much more about mitochondria and their function in Chapter 5 but a brief summary is called for here in order to cement understanding of this key biochemical process and its implications for CFS, ME and LC sufferers. Mitochondrial failure is the central cause of CFS, ME and LC. The biochemistry, Krebs cycle etcetera alluded to here is one that doctors and chemists learn the night before the examination, and then forget. It is very detailed and one does not need to know those details but rather one needs only to know the overview and the implications of all of this to you, the sufferer.
The dominant role of mitochondria is to produce ATP (adenosine-triphosphate). This is achieved (in normal circumstances) by oxidising (or ‘burning’) acetate (derived from glucose and fatty acids) in the presence of oxygen. This is known as aerobic respiration. ATP is crucial to all body functions: it is the energy molecule and powers all such body functions. In these (good) normal circumstances, the word equation for this process of aerobic respiration is:
Glucose + Oxygen → Carbon dioxide + Water + 32-36 molecules of ATP (aerobic respiration)
However, when one (anyone) has overdone things, then the system moves temporarily to anaerobic (without oxygen) respiration. For CFS, ME and LC sufferers, this switch to anaerobic respiration happens much more quickly than usual (for example, maybe walking five paces will cause such a switch) and also it takes much longer for the CFS, ME and LC sufferer to switch back to aerobic respirations (often days, if not longer). The problem with anaerobic respiration is that it only produces 2 molecules of ATP as seen in its word equation as below:
Glucose → 2 Lactic acid + 2 ATP (anaerobic respiration)
But it is worse than that. As already mentioned, the lactic acid causes pain (the burn that athletes know so well) and also it takes 6 molecules of ATP to convert the lactic acid back to acetate, ready to be oxidised in aerobic respiration. One has effectively lost 4 molecules of ATP in this transaction. So, you are left with pain and a long recovery period from that pain. I have written extensively on this subject and you will find the links to my three published papers at the start of Chapter 5. You do not need to know the detail. But perhaps it will reassure you that the detail is there. Once you feel better, maybe you could go back and read those three papers and understand why you do feel better.
Chapter 3
The mechanisms of poor energy delivery and how to treat them
This chapter gives an overview.* Don’t expect to understand all of this now. Reading the rest of the book will make it all clear, but it is useful at the outset to see what goes wrong and how to fix it, in general terms, before we delve into more detail. You may find Table 3.1, which summaries this overview, the most perused section of this book in time.
I like to use the car analogy. For our car to go well we need: Fuel in the tank, a functioning engine, an accelerator pedal, a gear box, service and repair, and regular use. The equivalents in our body are: What we eat and drink, the metabolic systems and 15processes that turn fuel into energy, an optimally functioning thyroid gland and adrenal glands, sufficient sleep and detoxification processes, and appropriately paced exercise. Table 3.1 provides the detail together with how to fix the problems that arise.
Table 3.1: Overview of energy delivery and how to fix the problems that occur in CFS/ME/LC
Sort out the upper fermenting gut (see Chapter 4 for what this is) with the PK diet plus:
Vitamin C 5 grams (g) during the day
Lugol’s iodine 15 % 3 drops at night
NB: Vitamin C and iodine must be separated by at least 2 hours as they knock each other out
A basic package of supplements to compensate for the deficiencies of modern food (Appendices)You need a non-fermenting upper gut to absorb these:
Multivitamins
Minerals
Essential fatty acids (omega-6 and omega-3)
Vitamin D 10,000 iu
Magnesium 300 mg (with breakfast)
Vitamin D 10,000 iu for its absorption (with breakfast)
OilCo-enzyme Q 10 and niacinamide (vitamin B3)Co-enzyme Q10 100 mg (with breakfast) Niacinamide 1500 mg (with breakfast)Fuel deliveryFuel delivery into mitochondria, which are within cellsAcetyl L carnitine 1 g (with breakfast) D-ribose 5-15 g daily – this is the raw material to make de novo ATP should one really over-do things; it helps prevent post-exertional malaise. NB: One can use this as a rescue remedy – Craig carries 5 g dissolved in mineral water in a hip flask, just in case Freedom from blocking by: a) lactic acidMust pace activity – yes, I know this is boring! b) toxins from the upper fermenting gut (alcohol, D lactate, hydrogen sulphide, ammoniacal compounds)Sort out the upper fermenting gut with:
PK diet
Vitamin C 5 g by day
Lugol’s iodine 15% 3 drops at night
Make sure you use ketones as a fuel (sugar as a fuel generates free radicals) – PK diet again.
Addition antioxidant glutathione 250 mg
d) social drugs: sugar, alcohol, caffeine, nicotine, chocolate as well as street drugsAddictions are good servants but bad masters.
Use very occasionally to enhance a jolly
e) prescription drugs: the vast majority do not address root causes and accelerate underlying pathologyWork out if/why you need these. See our book Ecological Medicine for guidance on this. With its help, get symptom free and aim to stop them all 17 f) pesticides and volatile organic compoundsAvoid
Get rid of stored toxins with heating regimes – Epsom salt baths, infrared sauna-ing, keeping warm, sunshine, heat belts or lamps – then wash off (see Chapter 14: Detoxing)
g) toxic metalsAvoid
Measure
Get rid of stored metals with chelation and food clays (see Chapter 14)
Improve ability to detoxGlutathione 250 mg
Vitamin B12 injections (great for the foggy brain)
Sulphur as DMSO (dimethylsulphoxide)
Methylation – measure homocysteine
Avoid electromagnetic radiation: 5G, mobile phones, cordless phones and wifi – disrupts the electrical potential across all cell membranesAvoid
See my webpage for how1
Reduce inflammation – it increases the friction in the system and blocks mitochondria with inflammatory mediatorsReduce inflammation as shown in Chapter 13 Get all the above in the correct 3D position – this requires fourth phase water (see page 155)Heat from infrared (keeping warm, sunshine, heat belts or lamps)
DMSO 20 ml daily
Re-educate the mitochondriaMicro-immunotherapy remedies MISEN and MIREG (see Chapter 19)The accelerator pedalThyroid gland: The underactive thyroid is common and thyroid hormones work by stimulating mitochondria so you must sort these out firstThyroid glandulars (see Chapter 7) 18The gear boxAdrenal glands: Adrenal fatigue is commonAdrenal glandulars (see Chapter 7):
Pregnenolone 25-100 mg
DHEA 25-100 mg
Ashwaganda 1-4 g
Ginseng 1-4 g
Measure homocysteine – should lie between 5 and 10 mcmol/l
NB: Everyone should know their homocysteine
Use it or lose itExercise and pacing – we lose muscle with age and diseaseDo the right sort of exercise to build up and/or slow down muscle loss (see Chapter 9)What to do first: Fixing problems in the right order
Not only are all the steps in Table 3.1 essential for recovery but they must also all be done in the right order. You cannot correct mitochondrial function without both the right fuel in the tank (the PK diet) and an upper gut which can absorb the necessary raw materials (so, sort out the upper fermenting gut). The PK diet must therefore be done before the mitochondrial support package.
In addition, you cannot correct thyroid and adrenal function until you have mitochondria in a fit state to respond. So, the mitochondria must be corrected before you move onto the thyroid and adrenals.
This all takes time. Furthermore, any one of the above interventions may trigger a ‘healing crisis’, where you feel worse before you feel better (see Appendix 2). 19
With all of the above, start low and build up slow. The sicker you are the lower you start and the slower you go.
You may get worse initially. I call these ‘DDD (diet, detox and die-off) reactions’ – see Appendix 2. The sickest patients are the most likely to experience such reactions. Sadly they must expect the bumpiest ride. This is when symptoms which should signpost recovery make life very confusing and you need to be convinced of the correctness of your interventions to stay on the wagon.
Table 3.2: An approximate time scale
Carry on for life
Rehydrate with Sunshine salt after exercise
Younger athletes
