The Best books on Myalgic Encephalomyelitis section includes:

• The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Edited by Byron Hyde, M.D*
• CFS: A Treatment Guide by Verillo and Gellman*
• Stricken: Voices from the Hidden Epidemic of CFIDS edited by Peggy Munson
• Shattered: Life with ME by Lynn Michell
• Osler's Web by Hillary Johnson
• Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness in MCS, GWS, ME and CFS by Martin J Walker
• Engaging with M.E. and What is ME? What is CFS? by Professor Malcolm Hooper, Eileen Mrashall and Margaret Williams

* Note: The two books The Clinical and Scientific Basis of M.E. /CFS edited by Byron Hyde MD. and CFS: A Treatment Guide by Verillo and Gellman are absolutely essential for everyone who has M.E., or has an interest in M.E. Also essential are the following papers by Dr Byron Hyde M.D. available for free online: A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome (an extract, PDF format) and The Complexities of Diagnosis (Word format) (PDF format) and last but by no means least, The Nightingale Definition of M.E.

The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Edited by Byron Hyde, M.D. , Nightingale Research Foundation, Ottawa, Canada

This book provides, in one superb 75-chapter source, an up-to-date, comprehensive account of current knowledge concerning  Myalgic Encephalomyelitis. This book contains the most comprehensive and accurate information available on the symptoms of M.E., the history of M.E. including a look at many of the outbreaks of the illness, epidemiology of M.E. (including the links with polio), issues of diagnosis, children with M.E., investigation, virology, immunology, muscle pathology, host response, food intolerance, brain mapping, neurophysiology, neuropsychology, sleep dysfunction and much more.

CFS: A Treatment Guide, by Verillo and Gellman

This book has case studies of people with ME (or ICD-CFS), it details the history of the illness, has an extremely in-depth discussion of symptoms cross referenced with treatment information, sections on food issues and avoiding chemicals in the home, sections on pharmaceuticals as well as other treatments from acupuncture to vitamins, tips on coping with ME emotionally and just about everything else you could think of as well! The authors are both long-term ME sufferers and they say they tried to make this book the resource they wish they’d had years ago.

This book contains detailed chapters or sections on almost every topic you could imagine; chemical sensitivities, food allergies and intolerances, recommended treatments and treatments to avoid or be cautious with, M.E. and children, advice on the importance of avoiding overexertion, advice on coping with M.E. emotionally and how M.E. can affect your relationships. Primarily however, this book is a very well organised and easy to use ‘Treatment Guide.’ You can either look up a particular symptom and read what causes it and what treatments may help with it, or you can look up individual treatments and read about their use in M.E., what their effects are, what are the likely side effects or negative effects of the treatment and much more. A wide variety of prescription pharmaceutical drugs are included, but so are vitamins, herb and information on alternative or complementary therapies such as acupuncture and massage. More than a hundred different treatments are featured. This is a book you will refer to again and again and is simply invaluable for every M.E. patient and physician.

Comments: Some of my friends and I refer to this book as the ME Bible it’s just so useful (along with Hyde's textbook of course!). I’m always referring back to it when I get a new symptom or a new medication. It is just brilliant; I couldn’t say enough good things! It has helped me out so many times my copy is very ratty looking!

Readability: Extremely high. Everything is so well organized and it has a perfect balance between making complicated medical information understandable but not making it feel dumbed down at all.

Any stupid bits? Nope, and it also has a really great bit about how we need to stop talking about ‘fatigue’ too.

Mentions of the severely affected: None at all really, it's the one thing that lets this book down, it's fantastic in every other way but it just doesn’t tell you how to deal with severe symptoms or illness at all really. It’s an enormous omission.

Rating: Highly recommended.

This book is available from Amazon..

Quote:

Single-photon emission computed tomographic (SPECT) scans have shown that in patients with [ME] who exercise, brain blood volume is reduced 1 to 3 days after exercising. In patients who are acutely or seriously ill, this could have profoundly negative effects on immune and endocrine system regulation. In patients with [ME], exercise also lowers cortisol levels, which makes it more difficult for the body to control inflammation. In addition, it increases erratic breathing and leads to a rapid progression to anaerobic metabolism, which produces ammonia and lactic acid. These negative results are the opposite of what would normally be expected.

Stricken: Voices from the Hidden Epidemic of CFIDS, edited by Peggy Munson

"In this unique and moving book, a South African journalist, a former marathon runner, a teenage girl, a public health activist living in the margins of race and gender, a cancer patient neglected by doctors for disdain for her chronic illness, a theologian relearning the art of spiritual empathy, and others, share their stories"

Comments: This is a book that leaves you changed after you’ve read it, it’s so powerful and compelling.

Readability: Very high, each essay is extremely intelligently written and the format makes it easy to read a chapter at a time. It's even available in a more MCS friendly version.

Any stupid bits? Not one, although of course the terminology is an issue and some facts to relate more to 'CFIDS' rather than M.E. and more emphasis on M.E. would have made it even better.

Mentions of the severely affected: This is the BEST book for really getting across how severe ME can be, so far, both from the medical information given and from individual case studies as well. You get a real sense of how horrific ME really is, something lacking in almost every other book on the subject.

Rating: An absolute must-have. This book really changed the way I thought about a lot of issues relating to ME, it leaves you feeling so empowered and determined not to put up with any more crap! Very highly recommended.

Quote: "I had no way of talking about what was happening, not only because I developed language-retrieval problems, but because there was no accurate symptomatic vocabulary.... I became incommunicado, and many people did simply assume the worst, approaching me with suspicion, refusing to utter the name of my diagnosis, and experiencing shame, along with me, for standing up for my rights in public. This illness does not befit exhibitionistic martyrs, as some might think, It is generally, rather, a lonely and private agony"

Available from Peggy Munsons website www.angelfire.com/ri/strickenbk

You can also read a sample of the book on the publishers website.

This book is available from Amazon..

See also: Pathogenesis by Peggy Munson

This is a book of poetry by Peggy Munson, author of 'Stricken' - some of which expresses what it is like to live with severe Myalgic Encephalomyelitis. It has had some really wonderful reviews too.

This book is available from Amazon..

Shattered: Life with ME by Lynn Michell

"In Shattered Lynn Michell tells of haunting episodes in her own life with ME, a ‘still life’ suspended by a strangely capricious illness, as well as the stories of many others – men women and young people. These voices convey the complexity of ME, an illness which deals out a slightly different hand of cards each time it strikes"

Comments: This book has some of the best descriptions of what it feels like to have ME that I’ve ever read, especially the sensory overload elements of it.

Readability: High, it’s a very well written and easy to read book. (illness allowing obviously!)

Any stupid bits? A few small but very iffy bits (courtesy of the always worrying Dr Charles Shepherd) but the rest of the book is excellent so just ignore those bits completely.

Mentions of the severely affected: Yes! This book describes severe ME really well. There are some fantastic descriptions of what it means to have severe ME and it also talks about how rarely we hear these stories, how much we need to start hearing them and realizing how severe this illness can be. Brilliant stuff.

Rating: Highly recommended.

Quote: " I am confined to bed for 80 – 95 per cent of my day and often when I make any degree of effort, however small (e.g. Getting up, going for a short walk, talking on the phone) within minutes my body often gears up into what I term ‘the hyper’. The ‘hyper’ is like a full-blown panic attack without the psychological element. I am not frightened or nervous in any way but my body becomes both taut and shaky; waves of prickly run from the soles of my feet to my scalp; my mind suddenly becomes less ‘brain fogged’ and my thoughts race and jump about. I feel ransacked by adrenaline, but profoundly weak. It is as if my nervous system is going into crisis mode in a desperate attempt to process everyday information such as polite information or the layout of an unfamiliar room."

Available from MERGE at www.meresearch.org.uk

Osler's Web, by Hillary Johnson

"A relentless, meticulous, and highly persuasive expose by a journalist who spent nine years investigating the medical research establishment’s failure to take seriously Chronic Fatigue Syndrome (CFS)"

Comments: This book really gives you an understanding of how and why ME (or ICD-CFS) has been stigmatized, ridiculed and ignored as much as it has. It makes it very clear that it was not a mistake or an oversight at all but that it was in fact utterly deliberate. The pure stupidity and lack of basic human compassion involved is astounding. It’s important to know how we’ve ended up in this mess so we can see how we might get ourselves out I think. It’s also important that we not underestimate how low these people will go - it's lower than you could ever imagine.

Readability: Really, really poor but just because it's so very long. It’s a huge book.

Any stupid bits? Yes and no. This would would have been so wonderful if it had rejected the terminology of mere 'fatigue' and made it clearer to outsiders that 'fatigue' is not the defining feature of ME, or even an essential symptom of ME. (That ME never was and is not 'fatigue' and that the name CFS has always been completely inappropriate.)

It would also have been even better had the long history of ME been given far far more time and weight. If it had been made clearer that this wasn't a new disease, but the cover-up of an existing disease that was well-documented as an organic neurological condition which occurs in epidemic and sporadic forms.

But even with all that, this is still an amazing book.

Mentions of the severely affected: A few quite good ones.

Rating: A must read if you are well enough to tackle such a long non-fiction book, it'll just blow your mind and really fire you up about how badly we have all been treated historically and the…well you’d have to call them evil, people behind it all. A fantastic book to fire up your activism urges.

Quote: (On how the name CFS was chosen) "[By] a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about cost to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the greatest tragedies in the history of medicine"

Click here to read another review of Osler's Web, written by Maryann Spurgin, Ph. D.

Second-hand copies of this book are available from Amazon.

Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness in MCS, GWS, ME and CFS by Martin J Walker

"A detailed investigation into the psychiatric diagnosis of a range of illnesses which some have suggested are actually caused by chemicals. The book traces the chemical companies’ arguments against their products causing illnesses and it tracks the growth of the theory promoted by them that individuals who report symptoms of chemically induced ill health have personality disorders. The book asks how psychiatric theories of ‘unexplained illness’ have managed to gain ascendancy and shape the diagnosis, research funding and public perception of these illnesses in Britain"

Comments: If you’ve always wondered why the psychologisers think the way they do despite the truckloads of evidence proving them wrong then you need to read this book. You’ll be amazed to see how obvious all the vested interests and bias are when you read about them.

Readability: I found it a bit hard going, there’s just so much packed into it, but it was well worth persevering with.

Any stupid bits? None.

Mentions of the severely affected: Well the book is not really about actually describing the illness itself, but it does contain some heartbreaking examples of children ill with ME being forced to exercise with devastating consequences which do get the message across strongly.

Rating: The UK version of Osler’s Web, this book is a must-have. It will absolutely blow your mind and make you furious that people aren’t forced to declare their competing interests when they state their ‘opinions’! You’ll never look at certain ME ‘advocates’ the same way again (particularly Dr Shepherd).

Quote: "This is a period of hidden-interest conflicts in medicine, of undeclared vested interests, covert agencies and propaganda. All these factors led to the growth of ‘health fraud’ movements in Britain and North America, which piggy-backed onto the already established industry-organised anti-ecology campaigns which had come into existence in the post-Silent Springs era.

The ‘health fraud’ movement had two principal functions: to protect and defend the professional status of orthodox physicians and pharmaceutical medicine, and to protect and defend industry, especially the chemical industry, particularly in relation to claims that chemicals cause ill health.

Only a few ‘health fraud’ activists and environmental health greenwashers can lay claim to serious scientific or academic work. Some of the main activists, however, can boast hundreds of publications, books or papers which appear to make them the world’s greatest experts on a subject."

Available from MERGE at www.meresearch.org.uk and also http://www.cygnus-books.co.uk (both as a book and as a cheaper digital download)

You can also read excerpts from the book and also some other reviews of it,  here and here 

Martin Walker's 2005 new book, 'Brave New World of Zero Risk: Covert strategies in British science policy' is now available as a FREE download on the Zero Risk Group website at http://www.zero-risk.org

This book examines the contemporary corporate politics of science in two areas, that of MMR (mumps, measles and rubella) vaccination and the illness ME (myalgic encephalomyelitis). It shows how those who have fought for independent science have been bullied, attacked and discredited, using political strategies that have nothing to do with science and everything to do with power and profit.'

A review of this book is coming soon.

Also available is An Interview with Martin J. Walker By Louise Mclean, Editor, Zeus Information Service

Engaging with M.E. and What is ME? What is CFS? by Professor Malcolm Hooper

This description of Engaging with M.E. from MEAaction UK:

This is a fully referenced 85 page document which contains colour photographs.  It is dedicated to Derek Peters of the Northern Ireland Campaign for ME/CFS Healthcare (who sponsored the publication), to the late Dr John Richardson (a compassionate clinician and champion of more than 4,000 ME sufferers for over 50 years) and to “all who suffer with and care for people with ME, who have taught me so much about courage, endurance and being fully human”. In his customary robust form, Hooper deals with facts, not beliefs or speculation and those facts are soundly based on biochemistry, which those who promote a primary psychiatric pathoaetiology will find difficult to refute with any degree of credibility.

Click here to read on...

A lecture by Professor Hooper entitled 'Engaging with M.E.' is also available for free download or for purchase at cost price on DVD. *highly recommended*

Copies of both these titles may be obtained (price £3.50 plus £1.05 postage) from Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, School of Sciences, University of Sunderland, SUNDERLAND, SR2  3SD, UK.

The equally brilliant 'What is ME? What is CFS? Information for Clinicians and Lawyers' is also available for free online.

Book Reviews Introduction

The BEST Books on M.E.,