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.

Other excellent books on Myalgic Encephalomyelitis

The Other excellent books on Myalgic Encephalomyelitis section includes:

Novels (etc) involving M.E. and/or M.E. sufferers:

Novels mentioning M.E. etc. reviewed on Amazon:

 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.

Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free Disease by Melvin Ramsay MD

The title of this book may be misinterpreted to mean that Ramsay is saying that M.E. and post-viral fatigue states are one and the same, but this is not the case! This book explains exactly why post viral fatigue and fatigue states (for example, as caused by glandular fever/mononucleosis) are NOT the same as authentic neurological Myalgic Encephalomyelitis.

This book is an essential read for anyone interested in the history of M.E. It really is mind-blowing to know how much was know about M.E. in 1986 - BEFORE the definitions of 'CFS' were released and it was claimed that this was such a 'mysterious' illness where 'no abnormalities' had been found on testing. This book clearly exposes the 1988 definition of CFS as pure fantasy, and as completely unscientific - along with each of the subsequent CFS definitions.

Melvin Ramsay was the recognized authority in ME from 1955 until his death in 1990. However, research has advanced further in the understanding of M.E. since this time (particularly regarding cardiac involvement in ME) and so this book is included on this list for its historical significance rather than this book constituting the totality of our current state of knowledge on the illness. Having said that, few authors or doctors involved in M.E. today are as accurate in their observations about the illness as Ramsay was, all those years ago. It really is still amazing how much of what we know now, was already known before 1986. M.E. NEVER WAS a mysterious and unexplained illness that may could be psychological! These theories have been disproven right from before they were invented.

See the Dr Ramsay page for an explanation of Dr Ramsay's contribution to M.E. research and advocacy - and to every patient with M.E. - in more detail. We are all deeply indebted to the many years of work on M.E. by Dr Ramsay.


Dr Hyde's ME textbook also contains papers by Dr Melvin Ramsay, as well as other more excellent papers by Dr Hyde and others. It is perhaps a better idea to read Ramsay's papers in this excellent 700 page + textbook rather than in this small book by Ramsay (which is very short and quite expensive).

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

CFS: A Treatment Guide by Verillo and Gellman

This book has case studies of people with ME, it details the history of the illness, has an 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 so on. The authors are both long-term sufferers and they say they tried to make this book the resource they wish they’d had years ago.

You can look up a particular symptom and read what causes it and what treatments may help with it or look at individual treatments. A wide variety of prescription pharmaceutical drugs are included, but so are vitamins, herb and so on. More than a hundred different treatments are featured.

Comments: I used to refer back to this book when I got a new symptom or a new medication. I haven't done so in some time however as I feel that this book is now very outdated in regards to the medical advice it gives. I've done a lot of reading about M.E. treatment in the last few years and I have learned that actially a lot of the information given in this book is misleading and very out of date. My health has improved so much with this new reading and I feel like this book's advice could hold people back from improvement.

So, the information on treatments in this book I can no longer recommend at all. What this book does do well is:

1. Describe some of the symptoms and their causes

2. Provide adice on diet

3. Provide advice on coping emotionally

Readability: High.

Any stupid bits? Unfortunately, as with every M.E. book that uses the term 'CFS' some parts of this book are about 'CFS' rather than M.E. About 70% is about M.E., and 30% is related to 'CFS' and incorrect as regards M.E.

It does has a really great bit about how we need to stop talking about ‘fatigue’ though.

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: Recommended. But make sure you know the basics of M.E. first so you know which bits to ignore as relating only to 'fatigue' or 'CFS.'

This book is available from Amazon..

Quote: {The term ME has been inserted here as what is being talked about is M.E., and not 'CFS.' The terminology is incorrect in this instance.]

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.

In short, a simple answer to the exercise question is, if you are severely or acutely ill, exercise can make matters worse-in some cases, much worse. The time to discuss an exercise program with your physician is when the illness is stabilised and clear signs of recovery are noted.

Dr. Paul Cheney remarks that "patients with this disease must, for many of them for the first time, place limits on their workstyles and lifestyles. Proper limit-setting , which is always individualised, is the key to improvement in this syndrome" (CFIDS Chronicle, March 1991).This comment comes after observation of thousands of patients, many of whom denied their illness for extended periods before adjusting to its limitations. Dr. Cheney has seen not only the successes inherent in making these adjustments, but the failures that resulted from attempting to ignore them. But first, we must address the question of what is meant by "proper limit-setting."

To set proper limits, we must start with a basic awareness of how [ME] affects the body and the [brain]. [ME] affects the ability to maintain homeostasis; that is, once the illness is established, it alters the body’s ability to adjust to changes in the environment. For example, a person with [ME] climbs a set of stairs and feels like he or she has just climbed Mount Everest. The out-of-breath, depleted feeling is the result of sluggish heart rate, which, in [ME] does not respond in time to greater demands for oxygen required by exertion. As a result., not enough oxygen is available, and a person with [ME] feels winded after even minimal strain. This type of delayed reaction also results from temperature changes. People with [ME] often remark that when they become cold, "it takes forever to warm up." The same is true for heat. Both temperature extremes produce symptoms as the body attempts to adjust.

People with [ME] often comment that they are either "on" or "off." Once they stop, they can’t get going again; and once they start, they can’t stop. In the Clinical and Scientific Basis of ME  /CFS, Dr. Byron Hyde, a well-known clinician and researcher of myalgic encephalomyelitis (ME) describes taking a walk with one of his patients. Dr. Hyde noticed when he stopped to look in a store window, his companion kept going. When asked why, Dr. Hyde’s companion replied that if he stopped, he would never get going again!

Once embarking on a project, a task, or a plan, it is difficult to stop. Even when performing easy activities such as taking a walk or balancing a chequebook, patients with [ME] often pas the point of endurance, and symptoms rapidly develop as a result.

Learning when we are "overdoing" it is how we define our own particular limits. This takes awareness, skill, and practice. Each person has limits that are defined by the severity of the illness. For a person who is bedbound, limits will be very different from those of someone who is able to work. Patients who are bedbound may find that extended telephone conversations, standing in the shower, or tackling stressful tasks such as filling out disability application forms produce exhaustion and a general exacerbation of symptoms. These patients may find that sitting in a plastic chair while showering, limiting conversations to 10 minutes, and resting before and after doing necessary paperwork [may help]. A patient who is mildly Ill and able to work may wish to cut back on work hours, take naps, and forgo activities that place excessive or inflexible demands on the body (such as team sports or other activities that do not allow the participant to "listen": to the body).

A former airline pilot refers to limit setting as living in a box. " As long as I’m in the box, I do alright. If I cross the margins of this box, I don’t do very well" (CFIDS Chronicle, March 1991). Defining the limits of your own particular box is the key to developing good coping strategies. Whatever produces a symptom on any particular day or at any particular hour is where you would define your limits, not by any abstract assessment of what you think you should be doing or a comparison with former capacities.

Osler's Web by Hillary Johnson

This book really gives you an understanding of how and why M.E. 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 - its lower than you could even imagine.

This is 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. Whether you have M.E. or one of the many other diseases commonly misdiagnosed as 'CFS' you'll be outraged.

It is also very important to read this book together with information which explains why 'CFS' as a concept must be abandoned and why renaming 'CFS' as M.E. or 'ME/CFS' is not the way forward.

You need to also know that:

-----

M.E. patients were treated appropriately and correctly diagnosed until around 1988, when there was an increase in the number of M.E. patients and outbreaks in the US. Some medical insurance companies (and others) decided that they would prefer not to lose many millions of dollars on so many new claims and so they created a new vague fictional disease category called 'Chronic Fatigue Syndrome' to try to confuse the issue of M.E. and to hide M.E. in plain sight.

Under the cover of 'CFS' certain vested interest groups have assiduously attempted to obliterate recorded medical history of M.E.; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years.

M.E. is a distinct, scientifically verifiable and measurable, acute onset, organic neurological disease. 'CFS' in contrast, is not a distinct disease. 'CFS' doesn't exist. Every diagnosis of CFS - based on any of the CFS definitions - can only ever be a misdiagnosis. A watebasket diagnosis.

The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has M.E., and (b) does not mean that the patient has any other distinct illness named CFS.' M.E. and 'CFS' are not the same.

Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.). According to the latest CDC estimates, 2.54% of the population qualify for a 'CFS' (mis)diagnosis.

The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled. 'CFS' is made up of people with cancer, MS, Lyme disease, depression and hundreds of other unrelated conditions.

Sub-grouping different types of 'CFS,' refining the bogus 'CFS' definitions further or renaming 'CFS' with some variation on the term M.E. (such as 'ME/CFS') would achieve nothing and only create yet more confusion and help to continue and further entrench the mistreatment and abuse.

The problem is not that 'CFS' patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as 'CFS' - that is the entire issue.

Due to outrageous political influences on medicine and govermnent policy, the vast majority of M.E. patients will not be able to be correctly diagnosed with M.E. Most M.E. patients will unfortunately be misdiagnosed with 'CFS.' It is extremely important to note, however, that only a very tiny percentage of those told they have 'CFS' will be M.E. patients. The overwhelming majority of those misdiagnosed with 'CFS' do NOT have M.E. 'CFS' is NOT just another term for M.E.

The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy. M.E. patients must again be diagnosed with M.E. and treated appropriately for M.E. based on actual M.E. research. For this to happen, there is a real need for patients (and others) to participate in genuine advocacy and activism.

The bogus disease category of 'CFS' must be abandoned. All those misdiagnosed with 'CFS' must immediately reject this harmful misdiagnosis and begin the search to find their correct diagnosis whether this be M.E., PVFS, depression, cancer, or any other disease. Correct diagnosis is vital in obtaining the correct treatment.


-----

M.E. is not the same thing as CFS or CFIDS or 'ME/CFS' but this book is a M.E. book in most of the descriptions of the disease, absolutely. We do know that M.E. is not caused by a retrovirus but an enterovirus with a 4 - 7 day incubation period however. For political information on M.E. and why M.E. is not 'CFS' see books and articles by Dr Hyde and Dr Dowsett.

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

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

'In 1997, New Labour brought to power a strange brew of liberalism, anti socialism, public relations and corporate lobby groups. While Thatcher had encouraged the pharmaceutical industry, Blair made it a partner in government. The National Health Service, set up originally to provide health care to the British people regardless of income, has been sold off bit by bit, mainly to pharmaceutical interests. The most serious consequence of letting corporate interests look after science, medicine and health is that the independence of science and any possible independence of health care have been obliterated. Corporate lobby groups, in bed with Big Pharma, insurance companies and New Labour, now press for the least expensive and the most profitable solutions to health care. They attack alternative medicine, and campaign for animal testing and vivisection. They have politicised science and now control both its methodology and the results of its research. Using spin, lies and propaganda they harass and isolate anyone who comes to conclusions critical of new technology or pharmascience. They preach zero risk and claim that new technologies can cause no harm.

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

ME: The New Plague by Jane Colby

"Explores the hidden links between ME and Polio, and shows how we are failing our children as we did in the polio years."


Comments: This is a fantastic book. It has lots of information on exercise and the role of CBT in ME (there isn’t one and exercise can be extremely harmful) and also talks about the importance of rest in great detail as well as giving you some interesting tips about how best to go about it for the greatest effect. Also, the links drawn between polio and ME and post-polio and post-ME are extremely compelling.

Any stupid bits? Bizarrely, the terms chronic fatigue and CFS are used interchangeably a fair bit – it’s clear that CFS is not just chronic fatigue in the writing, it’s more that CF is used as a shorthand for CFS. The book also says that most people recover substantially with rest but also that recovery can take many years and be very difficult, it’s quite contradictory on this point. Some of the doctors interviewed are also a bit unreliable on how they define ME, one of them saying that it is no different to post viral fatigue (which is not the reality) BUT contrasted with this are a lot of brilliant accounts of how truly severe ME can be so you are left (despite these other not so good and inaccurate parts) with a very accurate view of the illness nonetheless.

Mentions of the severely affected: Some very good ones. This is about the only book I know of that refers to the comatose state that can occur in ME.

Rating: A fantastic ME book with lots to offer, particularly parents of children with ME. Although there are also many worrying parts.

Quote: "Outbreaks of ME can be linked with outbreaks of different enteroviruses right back to 1948, when they were first grown in tissue culture and could be identified. Doctors would often diagnose polio but eventually conclude they were seeing 'an unusual' poliovirus. Their clinical acumen was spot on, even though they lacked our present technology."
 
This book is out of print but second-hand copies are available from Amazon.

In the Shadow of Memory, The Night Side and A World of Light by Floyd Skloot

In the Shadow of Memory by Floyd Skloot

17 essays reflecting on the author’s life experiences, some of them about living with his ME symptoms, particularly his cognitive ones.

Comments: I love this book.

Readability: Very high, he has a really easy to read style, he's extremely likable as well. Even the essays that aren’t about ME are good, he has some fascinating family members and family stories to say the least.

Any stupid bits? None.

Mentions of the severely affected: None really, Skloot focuses almost completely on his own cognitive deficits and to a much lesser extent his physical limitations as well. He doesn’t really acknowledge that he is moderately affected compared to many but then, his style is not about giving lectures and lots of facts and figures – just convincing with compelling and credible personal experience – and I think it works.

Rating: A really great read, fantastic for understanding how ME affects your brain. No other book explains cognitive problems in ME as well as he does. It gives you a deeper understanding of how changed the ME brain is, and from that, better ideas on how to cope with it. There is also an absolutely brilliant piece describing the latest physical he was forced to undergo to keep his disability payments – it’s a book worth reading for that particular essay alone.

Quote: "I used to be able to think. My brains circuits were all connected and I had a spark, a quickness of mind that let me focus well in the world. I could reason and total up numbers; I could find the right word, could hold a thought in mind, match faces with names, converse coherently in crowded hallways, learn new tasks. I had a memory and an intuition I could trust. All that changed when I contracted the virus that targeted my brain. More than a decade later, most of the damage is hidden. My cerebral cortex, the grey matter that MIT neuroscientist Steven Pinker likens to "a large sheet of two-dimensional tissue that has been wadded up to fit inside the sperical scull, " is riddled instead of whole. […] Invisible to the naked eye but readily seen through brain imaging technology are areas of scar tissue that constrict blood flow. The lesions in my grey matter appear as a scatter of white spots like bubbles or a ghostly pattern of potshots."

This book is available from Amazon..

 

The Night Side: CFS and the Illness Experience by Floyd Skloot

Same as the previous one, 12 essays reflecting on the author’s life experiences, some of them about living with his ME symptoms, particularly his cognitive ones.

Comments: A really great read, fantastic for understanding how ME affects your brain. In this book Skloot also talks a lot about the search for a cure and how far you’ll go and all the mad things you’ll do to try to find one – whatever it takes. There’s a real optimism you can relate to but at the same time he never implies that it’s an easy illness to ‘cure’. Far from it.

Rating: If I had to choose between "In the Shadow of Memory" and this one, I think I’d have to choose the former, but both are excellent books well worth reading.

Quote: "Years have passed, patience has been exercised, but my body still doesn’t work right. Though I have no reason to believe it ever will again, I keep checking."

This book is available from Amazon.

 

A World of Light by Floyd Skloot.

Same as the previous two, a collection of essays reflecting on the author’s life experiences.

This time however, things are a bit different and his illness barely gets a mention (as he has decided to stop writing about it at this time, for reasons explained in the book). If you liked his previous two books, especially the essays which did not involve Skloot's illness (as I did), then this is another great read and more of the same, of the same quality. If you are more interested in writings which relate to M.E., then you'd be better off choosing either of his previous two books instead.

This book is available from Amazon.

Lost Voices - The stories of families living with myalgic encephalomyelitis from IiME

Comment from IiME:

Invest in ME are offering a new book - "Lost Voices - The stories of families living with myalgic encephalomyelitis" - which we hope will help healthcare professionals, media, ME Support groups and people with ME in their quest to improve education and assist with publicising of the illness myalgic encephalomyelitis (ME).
 
The name 'Lost Voices' refers both to the fact that people who are severely ill with ME are generally not in a position to make themselves heard, and also to the way that the  prejudiced denial of ME - as an 'aberrant belief' rather than a devastating physical illness - has meant that often others are incapable of actually hearing and seeing what is being said and shown - our voices drop into a void.
 
The book is an A4 landscape size with a laminated card cover with pictures, mostly in colour.
 
'Lost Voices' is primarily written by people affected by severe ME- whether as sufferers, carers or families.
 
The book provides the following -
 
 - It provides an opportunity for people who are usually invisible and unheard to speak for themselves, so that their situation can be seen and understood more clearly.
 
 - It  clearly and movingly shows the evidence of the devastating impact this physical disease has on individuals and their carers and families.
 
 - It will bring to more public notice the plight of ME sufferers.
 
- It will help change a widespread lack of comprehension based on general misinformation, vague definitions, guessed numbers and statistics, to the development of empathy and concern for those who are so ill.
 
- It can educate the medical profession, the public and others such as wider family.
 
- It will, hopefully, encourage a sense of community among ME sufferers and those supporting them.
 
The stories and photographs are provided by carers, families and, as far as possible, people with ME themselves. 'Lost Voices' represents different families, showing the impact of the illness on all family members and sufferers and carers.
 
To order this booklet contact Invest in ME at
info@investinme.org or use the web ordering page at http://www.investinme.org/LostVoicesBook/Order.htm.
 
Price £8.00 for UK delivery (£9 for delivery to Europe and £13 for delivery outside Europe).  Prices include p&p.

America's Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS by Neenyah Ostrom  

This book is not essential reading, but it is very interesting reading. This isn't a pure M.E. book but parts do relate to M.E.

This book is available from Amazon.

Enteroviral and Toxin Mediated Myalgic Encephalomyelitis and Other Organ Pathologies by John Richardson

This book is important to the study of M.E., as is Dr John Richardson. Dr Hyde and others speak very highly of him and his work, and the importance of it.

However, this is not a book that is at all useful for your average sufferer. Despite the title, this book contains only a very small amount of information on M.E.(and it was nowhere near relevant enough to justify the purchase of this book, for me)

Rating: For real ME experts only. Not useful for the vast majority of sufferers.

This book is available from Amazon.

Engaging with M.E. and What is ME? What is CFS? by Professor Malcolm Hooper, Eileen Mrashall and Margaret Williams

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 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...

Professor Hooper's lecture "Engaging with M.E.' is now available for free online thanks to Gordon D McHendry. Click here.

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 (if somewhat problematic and outdated) 'What is ME? What is CFS? Information for Clinicians and Lawyers' is also available for free online. See also: The Mental Health Movement by Professor Hooper.

Diana's Story by Deric Longden (a novel)

The only novel I know of written with a main character who has ME, and severe ME at that! The book is told from Longden’s point of view and based on his own life experiences caring for his real-life wife’s severe ME.

Comment: You'd think a book like this might be very depressing, but Longden writes every sentence so lightly and wittily, even the tragic bits are sort of funny. The humour doesn't detract from the seriousness of the illness though somehow, it really is superbly written. As much as it’s about ME, it’s also about how strong love can really be, it’s a beautiful love story despite all the tragic and horrible bits.

Readability: It’s very easy to read and not very long.

Any stupid bits? None.

Mentions of the severely affected: Lots of them all through the book! Some great hospital scenes too.

Rating: It’s so rare to actually relate to a character in a book! This is a good one to give to family and friends too I think. I’d highly recommend it.

This book is available from Amazon.

The Bounty Hunters by Gurli Bagnall (a novel)

(Also known as: With Criminal Intent)

"The story is fiction based on fact. It takes place in New Zealand in the years 2002 and 2003, and concerns a pharmaceutical company which manufactures a range of drugs that cause serious physical and mental illnesses. To suppress complaints about the serious adverse reactions and give the company a financial edge in the market, political co-operation has been bought from three high ranking members of parliament.

The matter is brought to the attention of an investigative journalist, John Harmon, after the suicide of a woman who had taken the latest and still experimental drug, bendiazide. Harmon finds that the prescribing doctor, Brian Jackson, is particularly active in the testing field. He works for a number of companies who pay him $2000 for each patient upon whom he tests their drugs, earning him in the vicinity of $500,000 per annum. In exchange, he supplies the manufacturing companies with glowing reports which ensure approval for the marketing of the substances in question.

A suicide . . . leaks about the drug companies practices . . . a terrible beating . . . the disappearance of the Prime Minister, his colleagues and their families . . . everything culminates in a hold-your-breath court trial."

Comments: This is one of only a few novels I know of which mention ME. I started out intending to read only a few pages of this book and then go on and do something else but right from the start this book was really hard to put down. Although the storyline is not directly related to Myalgic Encephalomyelitis (although it does get a few mentions) the themes of corporate and governmental dishonesty and greed is something people with ME can easily relate to (unfortunately).

Mentions of the severely affected: Yes. One person with ME dies in the book and the pathology found in their autopsy is discussed.

Rating: An excellent read for anyone, but particularly relevant and satisfying to anyone who has been touched by similar medical betrayals and denials by government and others. Recommended.

Availability: Copies of 'The Bounty Hunters' are available in e-book format for just $4.95. Hard copies of the book 'The Bounty Hunters' can also be obtained, email for details.


Gurli Bagnall is a long-standing patient advocate and as well as this book she has also written a collection of excellent essays and papers on ME (and benzodiazepines) which are available on this page.

stranger and stranger by Robert McMullen (non-fiction/a memoir)

'The true story of an unlikely encounter in an extraordinary life' - written by a ME sufferer.

Synopsis (back-cover text)

“Could I ask how old you are and what you do? And no, in case you’re wondering, I’m not some desperate sad case who befriends whomever he can because he’s got no mates and spends all his time on-line. [Not strictly true – certainly not the bit about being sad and desperate.] It’s just that I was flattered by your compliment of my review.”

When Rob receives an email from an unknown woman, complimenting him on an internet book review, it leads to an unlikely exchange between two distant strangers. Rob is chronically unwell with a mysterious illness, while Rose lives on the other side of the country. But who is she? What does she want? And where is their friendship heading?

Through a series of annotated emails, poems, paradoxes, quizzes and quotations, Rob narrates the true story of how their lives came together in a way that is funny, touching and completely unforgettable.

You can read an excerpt of "stranger and stranger" on-line. CLICK HERE CLICK HERE to launch a new window.

"stranger and stranger" has been self-published by the author through BookForce.co.uk. BookForce.co.uk is the UK distributor. If you are a bookseller and are interested to stock "stranger and stranger" please contact BookForce on +44 (0)207 529 3749 or email authorsales@bookforce.co.uk. It is also available through BookSurge.com, a US based print-on-demand publishing company which has recently been acquired by Amazon. It is appropriate that this book should be published through an Amazon company, as it was on Amazon.co.uk that Robert posted the review which led to the correspondence that this book describes.

Because "stranger and stranger" is self-published, the author is very much dependent on word of mouth for publicity. If you have read and enjoyed his book, please CLICK HERE to email this book to your friends.


Note that I haven't actually read this book yet (just all the excerpts from it and comments from the author and all the reviews of it on Amazon.com etc.) but judging from what I have read, I think it sounds like a great book and so I'd very much like to read it someday and am happy to recommend it to others.

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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