The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

The best books on Myalgic Encephalomyelitis

The Best books on Myalgic Encephalomyelitis section includes:

 

* Note: The two books The Clinical and Scientific Basis of M.E. and Missed Diagnoses: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome 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. 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 and The Complexities of Diagnosis.

Dr Hyde's latest paper is also a MUST-READ: The Nightingale Definition of M.E.

The book Missed Diagnoses: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome contains a copy of The Complexities of Diagnosis plus The Nightingale Definition of M.E.  and the second edition also contains a further new paper on M.E. (a chapter from a recent book)

Also essential reading are all of the papers by Dr Elizabeth Dowsett. See: The Late Effects of ME and Redefinitions of ME - a 20th Century Phenomenon and other papers on the Dr Dowsett page.


Before reading the research/advocacy information given in the book reviews and books below, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.

The Clinical and Scientific Basis of Myalgic Encephalomyelitis Edited by Byron Hyde M.D

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.

This is a simply essential reference book for doctors, and M.E. patients, and easily surpasses all others of its type (as there really are no others of its type).

This book contains the accumulated knowledge of many of the worlds leading M.E. experts but the brilliant chapters written by Dr Hyde alone (the world's leading M.E. specialist) make this book worth the purchase price. No other doctor has captured the complex neurological (and other) disabilities of M.E. so well.

If you buy or read just one M.E. book make it this one. This book cannot be recommended highly enough.

Click here to read the full review of this book, including purchasing details, and a list of quotes/excerpts from the book.

Missed Diagnoses Myalgic Encephalomyelitis & Chronic Fatigue Syndrome by Byron Hyde MD

This book is essential reading for doctors and patients alike, and those interested in M.E. as well as those interested in 'CFS' or that have been misdiagnosed as 'CFS.'

(As this book explains, there is no such distinct disease as 'CFS' - and every diagnosis of 'CFS' is a MISdiagnosis. This book also explains that M.E. is not a similar disease to 'CFS' nor a mere 'fatiguing disorder.')

The Nightingale Definition of Myalgic Encephalomyelitis paper in particular cannot be recommended highly enough.

Finally this is a modern and TESTABLE definition of Myalgic Encephalomyelitis, created by the world's leading and most experienced M.E. expert, Dr Byron Hyde. This is NOT a redefinition of CFS but is instead a pure M.E. definition.

It draws on the long history of M.E., collates the evidence from each of the world's leading M.E. experts (past and present) and combines this with details of the most modern medical tests. This definition also rightly gives no importance at all to the bogus notion of mere `fatigue' having any importance in the diagnosis/definition - unlike each of the `CFS' definitions, including unfortunately the Canadian `ME/CFS' definition which just mixes in a few M.E. facts with what is still primarily a `CFS' redefinition.

Dr Hyde explains that:

"I believe it essential to define clearly Myalgic Encephalomyelitis, returning the definition to its clinical and historic roots and complementing this information with the certitude of modern scientific testing. That is what the Nightingale definition of M.E. sets out to do. But let me first ask you a very important question.

What is the purpose of any medical definition? What is the purpose of any disease definition if it is not to allow the physician to rapidly and accurately diagnose a specific illness in order to attempt to effectively treat the patient before the illness becomes chronic or to call in the appropriate specialists? Our definition solves this problem."

"There is a third purpose for any disease definition. That is to clearly define the disease so that various physicians and researchers can clearly understand that they are talking about the same illness spectrum and so launch research into what will become an effective treatment. Our definition gives a clear baseline for investigation.

The Nightingale definition is based upon the following two criteria: (a) The excellent scientific and clinical work of respected physicians and scientists who investigated the various M.E. epidemics. (b) The results of modern scientific testing techniques and the knowledge accruing from examining thousands of M.E. patients using these and more historical techniques. The proposed M.E. definition is designed to improve early diagnosis and treatment for the tens of thousands of patients stricken with M.E. It is not a new definition of CFS nor should it be conceived as a rewording of any previous CFS definition.

The definition is set out in such a fashion as to enable the physician to make a bedside or office clinical diagnosis and then to scientifically test the hypothesis. This will allow the physician an early diagnostic understanding of this complex illness and a scientific and technological method to investigate and confirm the diagnosis. It is well known by all serious physicians that in order to assist any patient in a partial or full recovery the illness must be (a) prevented from occurring by either immunization or understanding and avoiding the causes, (b) or diagnosed and treated immediately following onset. The Nightingale Definition assists the physician both in diagnosis and early treatment.

What follows is the primary M.E. definition for adults. I believe it essential to define clearly Myalgic Encephalomyelitis. That is what the Nightingale definition of M.E. sets out to do........

To various degrees many if not all of the above historic findings have been observed and discussed by Doctors Alexander Gilliam, Bjorn Sigurdsson, Alberto Marinacci, Andrew Lachlan Wallis, A Melvin Ramsay (Elizabeth Dowsett), John Richardson, Elizabeth Bell, Alexis Shelokov, David C Poskanzer, W.H. Lyle, Sir E. Donald Acheson, Louis Leon-Sotomayor, J. Gordon Parish and many others."


'The Complexities of Diagnosis' is also very, very good overall and is also recommended. (This piece does very unfortunately use the misleading and confusing term 'ME/CFS' throughout, but the content of the paper makes it crystal clear that M.E. and 'CFS' are not at all the same.)

Buy this book, and an extra copy for your doctor. See also the free downloads of some parts of it available online on the Dr Hyde page.

This book is available from Lulu.

Caring for the M.E. Patient by Jodi Bassett

Click here for purchasing information.

This book provides essential information for anyone who knows, loves or provides care for someone with M.E. - sourced from the world's leading M.E. experts.

The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by one of the world's leading M.E. experts, Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E.  I recommend her book to all and wish it every best success."


From the back cover:

For friends, family and partners: Your friend or family member may be just as ill and disabled as someone with M.S., yet have almost no appropriate social support at all. They may also be dealing with serious medical neglect or even overt abuse. This happens due to the deliberate, financially and politically motivated confusion between the distinct and measurable neurological disease M.E. and the vague fatigue-based wastebasket diagnosis of 'CFS'. These are two entirely different entities. Find out what is really going on and why.

Learning the facts is not time-consuming or complicated, and may improve both the patient's quality of life, and your relationship with them. You can help the person in your life that has M.E. Supporting your ill friend or family member more fully by being aware of the basic facts of M.E. could make all the difference in the world to them. This book shows you how.

For medical professionals: Patients with M.E. have some care needs which are common to a variety of other diseases, and others that are unique and with which hospital staff, doctors or carers may be wholly unfamiliar. If you are providing care for someone with M.E., you will find knowledge of some of the basic M.E. facts vital in order to avoid additional unnecessary suffering and disability.

Taking a small amount of time to learn the facts about the disease can make an enormous difference to the M.E. patient's quality of life and prognosis. It could even be life-saving. Providing appropriate care and support for the M.E. patient could make all the difference in the world to them. This book shows you how.

Stricken 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"

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

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.

This is a good 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.

This book is very good in some parts. 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! Brilliant book.

(M.E. is not the same thing as CFS or CFIDS, but this book is a M.E. book in the descriptions of the disease, absolutely. For high quality political information on M.E. see books and articles by Dr Hyde, however.)

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. My review:

Noelle Kocot describes Munson's work as "free from a lot of the burden of contemporary poetry conventions, [existing] like a small island in the fiery sun, alone, yet willing to be utterly beautiful, utterly strange and utterly itself."

After reading this book, I'd have to agree. I know very little about poetry, and to be honest I dislike most of the poetry I’ve read, but I got so much out of this little book. Peggy’s use of words is so unique. So clever. I’m now a dedicated poetry convert!

Pathogenesis made me cry within just a few minutes of starting reading. Admittedly I have the same devastating and disabling neurological disease (Myalgic Encephalomyelitis) to a similar severity as Peggy, so I could really relate, but even without that, this book is just so powerful. I can't imagine anyone with any compassion or humanity coming away unaffected.

It's unlike any other poetry I have read, it is so beautiful.... and at the same time so, so sad. Readers get a brief taste of what it is like to live with a devastating neurological and cardiovascular disease, as well as how much the extreme level of suffering is increased when you have a disease that is subject to a publically accepted campaign of misinformation, misrepresentation and outright lies, for mere financial gain. When you are so ill but get almost no appropriate medical care, or are treated unfairly and cruelly by friends and family, because of these same scientifically unsupportable lies.

The last poem in the book in particular just kills me.

The book is also beautifully and simply designed.

Peggy Munson is immensely talented. Those not familiar with severe M.E. can have no idea what an achievement this small book is, and how much pain and suffering must have gone into the writing of it: just a few minutes at a time each day. Each minute spent writing having an immense physical cost as well as being very difficult due to the profound cognitive problems caused by M.E.

If you are a poet, I think this book will inspire you to write. If you love poetry or just love the clever and unusual use of words, I highly recommend this book. It’s a little gem.

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"

This book has some of the best descriptions of what it feels like to have M.E. that I've ever read, especially the sensory overload elements of it.

It's a very well written and easy to read book too. (Illness allowing obviously!)

It does contain a few small but very iffy bits (courtesy of the always worrying 'ME/CFS' supporter Dr Charles Shepherd) but the rest of the book is excellent so just ignore those bits completely and concentrate on all the solid content, I say.

This book describes severe ME really well. A topic avoided by almost all M.E. books. 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. It is brilliant stuff.

It is so helpful to hear legitimate descriptions of severe M.E. when that is what you are dealing with. Just to know you are not alone is so powerful.

This book is highly recommended.

Quotes:

"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."

"At the turn of the millennium, the public still lacks a real grasp on what ME patients are dealing with. Because of illusions that ME is simply a disease of tired people the public has large been deprived of accurate information."

"[Legitimate descriptions of the illness are] a far cry from the hopelessly inadequate description of ME as `chronic fatigue.' The distinction between fatigue and ME needs emphasising. If you are tired all the time, you do not have ME. If you are feeling drained following a viral illness but are recovering over weeks or months, you do not have ME."

"This is not fatigue. This is a state of overstimulation which results in near or total collapse. One of the things that has been shown over and over again is that biologically [people with ME] have an inability to respond to stressors [or stimulus.] Although ME is sometimes described as a stress-related illness, what stress means in this context is `the non-specific response of the body to any demand.' So, while healthy people cope with the demands which assault their senses, responding appropriately to what is relevant while ignoring what is not, people with ME have lost the ability to manage the sensory input of their environment."

"A central problem is the word `fatigue' which doesn't come close to describing how sufferers can feel - comatose might be better. Like most people with ME I have acquaintances who say, `Oh I feel tired at 4pm too, and would love a snooze.' But that's not it. People with ME are so finished that they have to lie down. There is no other option. Minds and bodies do not function. This is nothing like fatigue."

" 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."


How good are those quotes! Typing them out made me so ill at the time but it was worth it as they really are very good and sum up so much of what M.E. patients are saying and thinking - that never makes it into a public forum. Thank you Lynn Mitchell for all your hard work.

If you have an interest in M.E. you may also like to read books and articles by Dr Hyde and Dr Dowsett, the world's leading M.E. experts.

Available from MERGE at
www.meresearch.org.uk

This book is also available from Amazon..

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The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95