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.

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M.E. quotes

General M.E. Quotes (on this page)

Quotes by M.E. sufferers

Quotes from M.E. political discussion groups

On so-called 'fatigue' in M.E...

On the supposed role of 'stress' in M.E...

Quotes on the outbreaks (and infectious nature) of M.E.

Quotes from M.E. sufferers on the negative effects of CBT and GET

M.E. vs MS quotes

Quotes on 'Are we just marking time?'

Quotes on the problems with the so-called "Fair name" campaign

Quotes on the problems with the use of 'ME/CFS' by M.E. advocates

Quotes on the topic of 'Who benefits from 'CFS' and 'ME/CFS'?'


Before reading these quotes, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research (and articles) 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/articles as ‘only relating to ‘CFS’ patients’ (including those which describe 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/articles 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/advocacy.

Note that the inclusion of a quote on this site does not necessarily denote support for all parts of the article it was taken from, or support for the terminology used in this article, nor total support for all articles created by this author.

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. and that M.E. activism also focuses entirely on M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research and articles 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. For more information see A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and the more detailed paper Putting Research and Articles on Myalgic Encephalomyelitis into Context.

General M.E. quotes

Over the course of two International Association of Chronic Fatigue Syndrome (IACFS, formerly the American Association of CFS) conferences, there have been suggestions that the name CFS be changed to M.E., while retaining the CFS definitions as a basis for such change. This does not seem to me to be a useful initiative: it would simply add credence to the mistaken assumption that M.E. and CFS represent the same disease processes. They do not.

M.E. is a clearly defined disease process. CFS by definition has always been a syndrome.

At one of the meetings held to determine the 1994 U.S. Centers for Disease Control and Prevention (CDC) definition of CFS, in response to my question from the floor, Dr. Keiji Fukuda stated that numerous M.E. epidemics—he cited the Los Angeles County Hospital epidemic of 1934, the Akureyri outbreak of 1947-48 and the 1955-58 Royal Free Hospitals epidemics-- were definitely not CFS epidemics. Dr. Fukuda was correct.

The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr Byron Hyde 2006

 

M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is definitely less fulminant than MS but more generalized. M.E. is less fulminant but more generalized than poliomyelitis. This relationship of M.E.-like illness to poliomyelitis is not new and is of course the reason that Alexander Gilliam, in his analysis of the Los Angeles County General Hospital M.E. epidemic in 1934, called M.E. atypical poliomyelitis.

The Nightingale Definition of Myalgic Encephalomyelitis (M.E.)  by Dr Byron Hyde 2006

 

Under epidemic and primary M.E. there is no consensus as to the viral or infectious cause. Much of this lack of consensus may be due to the non-separation of acute onset from gradual onset patients in the M.E. and CFS groups of patients. Primary M.E. is always an acute onset illness.

Doctors A. Gilliam, A. Melvin Ramsay and Elizabeth Dowsett, John Richardson of Newcastle-upon-Tyne, W.H. Lyle, Elizabeth Bell of Ruckhill Hospital, James Mowbray of St Mary’s and Peter Behan all believed that the majority of primary M.E. patients fell ill following exposure to an enterovirus (Poliovirus, ECHO, Coxsackie and the numbered viruses are the significant viruses in this group).

I share this belief. Unfortunately, it is very difficult to recover polio and enteroviruses from live patients. Dr. James Mowbray developed a test that demonstrated enterovirus infection in many M.E. patients but I do not believe he qualified his patients by acute or gradual onset type of illness. In my tests in Ruckhill Hospital in Glasgow, I found confirmation of enteroviral infection only in acute onset patients and not in any gradual onset [ie. CFS] patients. Few physicians realize that almost all cases of poliovirus recovered from poliomyelitis victims came from cadavers. At the very least, these enteroviruses must be recovered from patients during their onset illness and this has rarely been done. An exception is in the case of the Newton-le-Willows Lancashire epidemic where Dr. W. H. Lyle’s investigation recovered ECHO enterovirus. Recent publications by Dr. J. R. Kerr have also identified the fact that enteroviruses are one of the most likely causes of M.E. If this belief is correct, many if not most of the M.E. illnesses could be vanquished by simply adding essential enteroviral genetic material from these enteroviruses to complement polio immunization.

The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr Byron Hyde 2006

 

Myalgic Encephalomyelitis is not depression. Myalgic Encephalomyelitis is not hysteria. Myalgic Encephalomyelitis is not a conversion disorder nor is it a somatization disorder. Myalgic Encephalomyelitis is an acute onset diffuse injury of the brain. Psychiatrists should not ever be placed in charge of diagnosis and treatment of M.E. patients. It is simply not their area of expertise and their meddling has at times caused great harm to M.E. patients. Also, during the 20 years that I have investigated M.E. patients I have yet to see a single case of real M.E. that has responded to psychiatric pharmacological treatment.

The Nightingale Definition of Myalgic Encephalomyelitis (M.E.)  by Dr Byron Hyde 2006

 

Up to 1955, recognised M.E. was clearly previously associated with poliomyelitis. The viruses that cause paralytic poliomyelitis are some of the same viruses that cause M.E. But these enteroviruses that are capable of causing paralysis attach to more than one set of tissue receptors. These other receptors are found on different cells in the brain and spine as well as in other body areas. The symptoms described by M.E. sufferers are due to injury to these other cells.

The Clinical and Scientific Basis of ME Dr Byron Hyde p. 115

 

On the lack of funding given to legitimate M.E. research, Dr Byron Hyde M.D. writes: Without heed, we are sitting on the edge of a cliff, waiting for disaster. For many sufferers of M.E. that disaster is already here, and few are listening.

The Clinical and Scientific Basis of ME p. 115

 

The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.

The Complexities of Diagnosis by Byron Hyde MD 2003

 

Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion. The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state. Patients who conform to any of these CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable.

The Complexities of Diagnosis  by Byron Hyde MD 2003

 

Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would have told the students to search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. Patients are now being diagnosed with CFS as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything.

The Complexities of Diagnosis  by Byron Hyde MD 2003

 

Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance.

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 by Dr Byron Hyde 2006

 

Children Fall Ill with Myalgic Encephalomyelitis: Knowing about the Akureyri epidemic and the Cumberland epidemic, it is curious that there should be any debate in the UK or anywhere else that M.E. is also a disease of children. All of these children, and the medical and scientific community as well, could benefit if funds were dedicated for the complete and integrated physical and technological examination of these [M.E.] victims. I call them victims since I believe the medical community as a whole have abandoned them, both children and adults. Lack of progress in developing both scientific and medical understanding and treatment protocols are what I believe to be the result of medical and psychiatric arrogance

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 by Dr Byron Hyde 2006

 

The body, its systems (such as the gastrointestinal system, the muscular system, the endocrine system, the cardiovascular and vascular systems) and its organs are dependent and their actions largely controlled by the brain. If the brain is physiologically injured, then so is the body. Depending upon which parts of the brain are physiologically injured different parts of the body will also be caused to malfunction.

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 by Dr Byron Hyde 2006

 

Recently an M.E. patient's spine has been examined in the UK and the inflammatory nature was also discovered. Myalgic Encephalitis is a diffuse inflammatory injury of the capillaries at the level of the basement membrane of the brain. It makes no sense to rename the horse and call it Myalgic Encephalopathy. All brain pathologies involving brain tissue are encephalopathies. Let us stop fussing around and get back to the real problem and that is investigating the patients.

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 by Dr Byron Hyde 2006

 

The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine.

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 by Dr Byron Hyde 2006

 

The vested interests of the Insurance companies and their advisers must be totally removed from all aspects of benefit assessments. There must be a proper recognition that these subverted processes have worked greatly to the disadvantage of people suffering from a major organic illness that requires essential support of which the easiest to provide is financial. The poverty and isolation to which many people have been reduced by ME is a scandal and obscenity.

Professor Malcolm Hooper 2006

 

Fatigue is a totally indefinable concept. Fatigue is impossible to measure or quantify. Fatigue is so non-specific that it can be a common element in any acute or chronic disease and many psychiatric diseases. Worse, it redirects the medical and public attention away from the obvious Central Nervous System changes in these patients. Much worse, it makes fun of a serious illness. It has turned out to be a damning indictment to all M.E. patients.

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 by Dr Byron Hyde 2006

 

In all M.E. epidemic or endemic patients the patients represent acute onset illnesses. The fatigue criteria listed here can be found in hundreds of chronic illnesses and clearly defines nothing.

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 by Dr Byron Hyde 2006

 

Psychiatric treatment is very useful and essential for psychiatric patients. Primary M.E. patients are simply not psychiatric patients. Unfortunately, it is not only psychiatrist physicians that have made themselves the tools of insurance companies.

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 by Dr Byron Hyde 2006

 

Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. M.E. and CFS should be separated as definitions. They are not the same.

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 by Dr Byron Hyde 2006

 

A political decision was taken to rename M.E. as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored.

What is M.E.? What is CFS? INFORMATION FOR CLINICIANS AND LAWYERS: Eileen Marshall, Margaret Williams and Professor Malcolm Hooper

 

The term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination.

Professor Malcolm Hooper 2006

 

Undoubtedly the perverse use of chronic fatigue syndrome, to impose a psychiatric definition for M.E. by allying it to fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those suffering from this illness. I would propose that the use of CFS should now be abandoned. and that the WHO definition is now accepted and used in all official documentations. The excellent work on the biological aspects of M.E., already carried out by several leading research groups, now requires significant funding.

Professor Malcolm Hooper 2006

 

On the lack of funding given to legitimate M.E. research, Dr Byron Hyde M.D. writes: Without heed, we are sitting on the edge of a cliff, waiting for disaster. For many sufferers of M.E. that disaster is already here, and few are listening.

The Clinical and Scientific Basis of M.E. p. 115

 

The insurance industry was concerned that, because there is no National Health Service in the US: "the field could change from an epidemiological investigation into a health insurance nightmare". The result was a determination to suppress the true symptomatology and to construct a new case "definition" for which insurers could not reasonably be liable: the condition was henceforth to be called 'chronic fatigue syndrome' or CFS and emphasis was to be on chronic "fatigue" as the primary symptom.

What is M.E.? What is CFS? INFORMATION FOR CLINICIANS AND LAWYERS: Eileen Marshall, Margaret Williams and Professor Malcolm Hooper

 

The first definition of CFS (1988 Holmes et al) concentrated on "fatigue" persisting for at least six months; it expressly excluded the cardinal features of M.E. which had been documented for decades despite the fact that ten years earlier, the UK Royal Society of Medicine had accepted M.E. as a distinct nosological entity.

What is M.E.? What is CFS? INFORMATION FOR CLINICIANS AND LAWYERS: Eileen Marshall, Margaret Williams and Professor Malcolm Hooper

 

The present confusion has been compounded by the fact that the term "CFS" has been included by the WHO in the latest revision of the International Classification of Diseases as one of the terms by which M.E. has become known. In practice, this has come to mean that when referring to "CFS", some doctors (mostly some UK psychiatrists led by Simon Wessely) are talking about psychiatric illness involving "chronic fatigue", whilst international experts are talking about ICD-CFS, which is synonymous with M.E.

What is M.E.? What is CFS? INFORMATION FOR CLINICIANS AND LAWYERS: Eileen Marshall, Margaret Williams and Professor Malcolm Hooper

 

M.E. is different in clinical presentation from other chronic fatigue syndromes. The evidence speaks for itself. Other postviral fatigue states are clinically in contrast to the three cardinal features of M.E.

What is M.E.? What is CFS? INFORMATION FOR CLINICIANS AND LAWYERS: Eileen Marshall, Margaret Williams and Professor Malcolm Hooper

 

All definitions which wear the 'f' word (ie. fatigue) in their name are not M.E. nor neurological. They are definitions of fatigue conditions. And when these definitions were written it was not neurological M.E. which they were attempting to define.

The Committee for Justice and Recognition of Myalgic Encephalomyelitis

 

When Holmes et al. 1988 was written - the condition which they were trying to define was Chronic Epstein Barr Virus. The principal symptom was 'fatigue'. It is interesting to note that those who were familiar with M.E. on the committee refused to sign off on this definition - as they pointed out that it was not a definition of M.E.

The Committee for Justice and Recognition of Myalgic Encephalomyelitis

 

In 1991 Sharpe, Archard, Banatvala, Wessely, David, White et al. wrote the Oxford Criteria calling it 'A report - chronic fatigue syndrome: guidelines for research.’ Fatigue was defined as being synonymous with tiredness and weariness (that is not organic in origin). A clear description of the relationship of fatigue to activity is preferred to the term fatiguability they said. (Hyde et al. 1992). This makes fatigue a psychiatric condition - a form of avoidance or symptom of depression.

The Committee for Justice and Recognition of Myalgic Encephalomyelitis

 

Both the earliest definition (HOLMES et al, 1988) and its revision (FUKUDA, 1994) elevated tonsillitis, glandular enlargement and fatigue to unreal importance while overlooking the characteristic encephalitic features of the genuine illness. These mistakes also inflated the possibility of a psychiatric diagnosis, leading to the incorporation of such a heterogeneous population of psychiatric and non-psychiatric causes later on, that research groups of different persuasions were unable to compare results or evaluate treatment.

A Rose By Any Other Name: Dr Elizabeth Dowsett

 

If the cause of a disease, the way in which it is acquired and the processes by which damage is caused are known, no definition is needed. To the very few physicians still practicing today who began seeing patients with this illness some 40 years ago and who have continued to record and publish their clinical findings throughout, the current enthusiasm for renaming and reassigning this serious disability to subgroups of putative and vague "fatigue" entities, must appear more of a marketing exercise than a rational basis for essential international research. It was not always so unnecessarily complicated!

Redefinitions of M.E. - a 20th Century Phenomenon by Dr Elizabeth Dowsett

 

With the rapid development of technology and access to international publication, the UK retained its reputation as a leading centre of M.E. research and remained able to report clinical studies backed up by molecular biology, brain imaging, sophisticated hormonal and other biochemical studies. At this point, with sound evidence of an infective cause, the way in which such infection is spread and the pathogenisis of the disease, why were we urged to adopt the "fatigue definitions" inflicted upon M.E. sufferers by USA scientists?

Redefinitions of M.E. - a 20th Century Phenomenon by Dr Elizabeth Dowsett

 

To suggest that M.E. is merely one subgroup amongst this heterogenous collection of physiological and pathological states, makes thus making any attempt at differential diagnosis between them impossibly expensive to pursue; to suggest that diagnosis must be delayed for 6 months, vitiates any real attempt at virus investigation, especially among the young.

Redefinitions of M.E. - a 20th Century Phenomenon by Dr Elizabeth Dowsett

 

The term "Myalgic encephalomyelitis" (M.E.) was henceforth used in the UK, Canada and Australasia to define an illness which, following a virus infection, leads to multisystem involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs but which is primarily due to central nervous system dysfunction and subsequent breakdown in bodily homoeostasis. Confirmation of this hypothesis was supported by electrical tests of muscle and of brain function (including the subsequent development of PET and SPECT scans) and by biochemical and hormonal assays.

Research into M.E. 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett

 

The "Fatigue" definitions still in use, outrageously distort the true prevalence of the illness (ME) by up to 100 times.

Research into M.E. 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett

 

M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile.

Dr Elizabeth Dowsett

 

There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised.

Time to put the exercise cure to rest? by Dr Elizabeth Dowsett

 

(ME) Compensates for Idiopathic Cardiomyopathy "Let me first of all define heart failure. There are two kinds of heart failure. There's the kind that any cardiologist can diagnose in about a minute. That you do NOT have. Which is why cardiologists missed this. What you have is Compensated Idiopathic Cardiomyopathy." [Idiopathic: cause unknown; Cardiomyopathy: structural or functional disease of heart muscle] "And your primary means of compensation—now this is the big twist—are you ready? Have you got your seat belt on? The primary methodology for compensation for this disorder is in fact (ME) itself."

The Heart of the Matter by Dr Paul Cheney

 

Now, do [ME] patients prefer to stand up or lie down? Of course, they prefer to lie down. Do you know why? "Do you know what your cardiac output does when you stand up? It drops 30%. In all humans, without exception. When [disabled ME patients] stand up, [they're] on the edge of organ failure due to low cardiac output."

The Heart of the Matter by Dr Paul Cheney

 

According to the textbook of medicine, the list of things associated with cardiomyopathy is as long as your arm and covers three pages. But most of the things listed are infectious diseases, and viruses are at the top of the list. ICM appears to be caused, in the minds of most physicians, by a post-viral infectious disorder that evolves following a viral infection, sometimes at a relatively young age. Doesn't that sound a little bit like [ME]?

The Heart of the Matter by Dr Paul Cheney

 

The one essential characteristic of M.E. is acquired CNS dysfunction, [not] chronic fatigue.

The Complexities of Diagnosis by Byron Hyde MD

 

The term "fatigue" does not do justice to what people with [M.E.] actually experience. People with [M.E.] often find themselves at a loss for words when it comes to describing how they feel. Patients come to doctors saying they feel "crushed," "totally wiped out," "comatose," or "paralysed" or use descriptive phrases such as "I feel like I’ve been hit by a truck," " I can’t get out of bed," or "I can’t lift my toothbrush." The truth is that [M.E. symptomatology] is unique. In its severe form it can be all-encompassing, which can be devastating. It can rob a person of livelihood, family, career, hope, will, and feeling. The terms currently available do not convey the profound loss produced by [M.E.]. More than an understatement, however, the word "fatigue" is misleading because its widespread use has led to a dismissive attitude on the part of the medical establishment. Verillo and Gellman in 'CFS: A Treatment Guide' p 77

The term "fatigue" does not do justice to what people with [M.E.] actually experience. There is nothing normal or natural about the [symptoms] experienced by people with [M.E.]. Unlike the state of tiredness a person might feel after a busy day, the [symptoms] produced by [M.E. are] not relieved by a good night’s sleep, a workout, a protein snack, a change in lifestyle, a vacation, or any of the other measures that normally help the healthy person "recharge." The reason none of these measures work is self-evident. [M.E. symptomatology is] not the natural product of exertion. It is a reflection of the profound metabolic, neurologic, and immunologic dysfunction wrought by illness.

Verillo and Gellman p 77

 

A list of [M.E.] symptoms is misleading. At first glance it appears that almost every symptom possible is part of the list. This is another reason many physicians have not accepted the reality of [M.E.] - there are simply too many symptoms. But a patient relating these symptoms does not list them in a random manner. They fit a precise pattern that is nearly identical from one patient to the next. The pattern of symptoms is so reproducible in the usual case that patients are able to diagnose [M.E.] in others in an instant.

David S. Bell, M.D

 

Dr Melvin Ramsay on Myalgic Encephalomyelitis: "The degree of physical incapacity varies greatly, but the [level of severity] is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis."

 

There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion.

Dr Elizabeth Dowsett

 

(Hillary Johnson 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" in Osler's Web

 

'This is a period of hidden-interest conflicts in medicine, of undeclared vested interests, covert agencies and propaganda.'

Martin J. Walker in 'Skewed'

 

"Outbreaks of M.E. 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."

Jane Colby in 'M.E. The New Plague'

 

"Myalgic Encephalopathy is not the same as Myalgic Encephalomyelitis. Encephalopathy can mean 'brain abnormal state' and this meaning would therefore endorse treatments such as CBT and GET - which do not work in those with neurological M.E. (which meets the Ramsay criteria). This change of name to 'opathy' can therefore be seen to endorse psychological therapies as treatment."

The Committee for Justice and Recognition of Myalgic Encephalomyelitis

 

'Fatigue' is the wrong word. Fatigue is a silly word.

Dr Elizabeth Dowsett in M.E.: The New Plague (p167)

 

Right back in 1970, it was shown by Gatmaitan, Chason and Lerner that when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented. In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts. We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with M.E.

Jane Colby in’ M.E.: The New Plague’ (p35)

 

"Suppose that, in the 'bad old days' before polio vaccination, a parent whose child had died had been told: "She stopped breathing on purpose you know." A public outcry would surely have ensued. And imagine if the next remark had been: "Tell me, did you encourage her in this belief that she couldn't breathe?" The mere idea of such an attitude, quite properly, takes the breath away. Yet children with severe M.E., unable to walk or even to eat, are often considered to be shamming and all sorts of bizarre startegies have been used to try to expose this".

Jane Colby in 'M.E.: The New Plague' (p22)

 

"Right back in 1970, it was shown by Gatmaitan, Chason and Lerner that when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented. In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts. We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with M.E.".

Jane Colby in 'M.E.: The New Plague' (p35)

 

"In 1995 I called the CDC and asked them for data from the polio epidemics in the 1950s, year by year, and discovered that the attack rate of M.E. was about fifteen times higher in the late 1980s-early than the attack rate of polio in the early 1950s. We don't get paralyzed in the formal sense; we just drop out and disappear"

Hillary Johnson, author of 'Osler's Web'

 

"An infectious pathogen can and will infect a multitude of people--but only a few get symptoms, and only a few of them actually become seriously ill. This is how infectious diseases work. If all were immunologically vulnerable to every infectious pathogen, the human race would never have survived. No species would. So given this information, you would have to say, this is a huge disease and remarkably common"

Hillary Johnson, author of 'Osler's Web'

.

"The most important thing is not to have (patients) do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA"

Dr Paul Cheney

 

I’ve lost count of the times medical staff have said to me: "I don’t really know very much about M.E. You get tired a lot, don’t you?" No. I’m 35 and haven’t been "tired" in the conventional sense of the word since I was a teenager. As anyone with severe M.E. will tell you, it has nothing to do with being tired and everything to do with being physically ill. On the many occasions I am unable to watch TV or hold a conversation, sit upright or walk more than a few steps, it is not because I am "tired". Trust me, "fatigue" or "tiredness" don’t even register on the scale of how life-shattering an illness this can be. Tiredness is to M.E. what forgetfulness is to Alzheimer’s disease.

Sick, Not Tired by Ciara MacLaverty

 

As anyone with severe M.E. will tell you, it has nothing to do with being tired and everything to do with being physically ill. On the many occasions I am unable to watch TV or hold a conversation, sit upright or walk more than a few steps, it is not because I am "tired". Trust me, "fatigue" or "tiredness" don’t even register on the scale of how life-shattering an illness this can be.

Sick, Not Tired by Ciara MacLaverty

 

Within a short time of the re-classification of M.E., the voluntary agencies and the charities that dealt with M.E. sufferers were inundated with new members who were suffering from a wide range and different levels of tiredness-related illnesses. This had two immediate consequences; first, the most chronically ill M.E. sufferers were pushed from the central focus of campaigns by more able bodied ‘fatigue’ sufferers; secondly, by changing the name [and more importantly the definition] of the illness and thereby enrolling a greater number of affected individuals, the research waters became impossibly muddied and full of people whose illnesses had different causes, different symptoms and a variety of outcomes.

Martin J Walker in ‘Skewed’ p 156

 

The final statement of Holmes et al re-defined M.E. This new definition was perfect for the insurance companies but from this point onwards, those who had the serious and debilitating illness known as M.E. were lost, as were the origins and the cause of their illness. The North American CDC and the medical insurance industry had escaped from having to acknowledge the serious nature of an increasingly reported and specific disorder, together with the consequent need to supply treatment for it. Under cover of the most ubiquitous term ‘fatigue,’ they had wiped out an illness.

Martin J Walker in ‘Skewed’ p 156

 

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 M.E. I have acquaintances who say, ‘Oh I feel tired at 4pm too, and would love a snooze.’ But that’s not it. People with M.E. 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.

Lynn Michell in ‘Shattered: Life with M.E.’ p 88

 

In the mid 1980’s, the incidence of M.E. had increased by some seven times in Canada and the UK, while in the USA a major outbreak at Lake Tahoe (wrongly ascribed at first to a herpes virus) led to calls for a new name and new definition for the disease, more descriptive of herpes infection. This definition based on "fatigue" (a symptom common to hundreds of diseases and to normal life, but not a distinguishing feature of myalgic encephalomyelitis) was designed to facilitate research funded by the manufacturers of new anti-herpes drugs. However, a "fatigue" definition (which also omits any reference to children) has proved disastrous for research in the current decade.

Research into M.E. 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett

 

Professor Malcolm Hooper explains: A political decision was taken to rename M.E. as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored… To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to Government Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support.

 

"The proper term for my selective difficulty in dealing with numbers is "acalculia." But I prefer to believe that I multiply and divide numbers the way a new Chinese immigrant speaks English, as if I’d never really seen the alphabet before, as if I couldn’t quite form the sounds. So I think of my math as having an accent."

Floyd Skloot: In the Shadow of Memory

 

"When syphillis was gravely untreatable, Sir William Osler said, "To understand syphillis is to understand all of medicine." Explains Dr. David Bell, "I cannot think of a better description of CFIDS. Virtually every organ system is involved." Since few doctors ‘understand all of medicine’ these days, CFIDS has been approached from a number of different angles, with specialists entering the labyrinth of illness from all sides."

Peggy Munson in Stricken

 

"The only doctor supplying real relief from the grueling pain is one who ends it permanently. People with CFIDS need more options. ...CFIDS must be seen simply for what it is: a devestating physical illness that can make the most mentally stable people contemplate suicide....sometimes the grief from my losses is unbearable."

Peggy Munson in Stricken

 

"I had no idea that my place in epidemiological and cultural history would play a giant role in the was my illness was perceived. I simply collided with a pathogen. In 1992, on a day in May, the sky started spinning"

Peggy Munson in Stricken

 

"Unfortunately the silence and invisibility of CFIDS patients has effectively been perceived as tacit agreement with the status quo."

Peggy Munson in Stricken

 

"...And from where does this burnout arise you might ask? Try years of explaining my nvisible symptoms to a society that just didn’t buy it. Basically every day I had to defend my credibility....This took a toll....I have given the "I know I look fine but really I am very, very sick and spend half my existance bedridden" speech literally thousands of times. Each time I hope I get the understanding nod, not the dreaded squinting of disbelieving eyes. Each eye squint cuts away at my self esteem."

June Stein in Stricken

 

"Most New Age "positive thinking" is just Christian Science-derived denial dressed up in more exotic, and modern, clothing. It’s sexy because they claim they can heal our deepest pain. It sounds too good to be true, and it is."

Caitlin MacEwan in Stricken

 

Suppose that, in the 'bad old days' before polio vaccination, a parent whose child had died had been told: "She stopped breathing on purpose you know." A public outcry would surely have ensued. And imagine if the next remark had been: "Tell me, did you encourage her in this belief that she couldn't breathe?" The mere idea of such an attitude, quite properly, takes the breath away. Yet children with severe ME, unable to walk or even to eat, are often considered to be shamming and all sorts of bizarre startegies have been used to try to expose this. Some have been left lying on hospital floors in an attempt to make them get up and put themselves to bed; some have been told that their parents do not want them at home until they behave and stop pretending to be ill; some have been refused liquid feeding and starved in an attempt to make them eat when they have lost the ability to swallow. And their parents have been suspected in colluding in, if not causing, a phantom illness. All this is happening because of the tragic conviction that these children are psychologically rather than physically ill. [...] How is it that we could think that pain and severe disability is such a desirable state to be in that thousands of children all over the country would choose, quite independently of one another, to invent it?

Jane Colby in ME: The New Plague (p22)

 

Right back in 1970, it was shown by Gatmaitan, Chason and Lerner that when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented. In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts. We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with ME.

Jane Colby in ME: The New Plague (p35)

 

'Fatigue' is the wrong word. Fatigue is a silly word.

Dr Elizabeth Dowsett in ME: The New Plague (p167)

 

[There] are deaths from ME. The point is that people dissociate these. There are cardiac deaths, there are brain deaths, there are tumour deaths, there are liver deaths, all kinds of deaths. They never get realted to ME in any statistics but death certificates are erronous today because so few post mortems are being done. One of the reasons is that people are afraid of legislation if an error is made.

Dr Elizabeth Dowsett in ME: The New Plague (p172)

"In nearly every patient there are signs of disease of the central nervous system"

A New Clinical Entity? Editorial: Lancet 26 May 1956

 

"For the patients, there is no question that the illness exists. For the physicians who see these patients, the similarities among them allow ready identification of a distinct clinical illness. For those who scoff at this concept, one can only query as to what happened to their curiosity and their ability to listen to their patients"

James F Jones: Physician, National Jewish Centre for Immunology, Denver, Colorado: Statement to the House Appropriations Subcommittee, 25th April 1989; published in CFIDS Chronicle, Spring 1989 pp 28-30)

  

"The crucial differentiation between ME and other forms of postviral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of the symptoms is not found in post viral fatigue states"

Dr Melvin Ramsay

 

"A patient examined in the morning might have nystagmus, which would disappear at midday, recur later, disappear later and recur the next day"

A. Jain: Clinical Observations of Central Nervous System Dysfunction in Post-Infectious Acute Onset ME. In: The Clinical and Scientific Basis of Myalgic Encephalomyelitis ed: BM Hyde, J Goldstein, P Levine pub: The Nightingale Research Foundation, Ottawa, Canada 1992)

 

"The worst cases have both an MS-like and an AIDS-like clinical appearance. The most difficult thing to treat is the severe pain. Most have abnormal neurological examination. 80% of cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self"

Paul Cheney, Professor of Medicine, Capital University, USA: Testimony Before the FDA Scientific Advisory Committee, 18 February 1993

 

"In my experience, (ME) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages"

Dr Daniel L Peterson: Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

 

"I take great issue with the current recommendations that no additional testing should ever be done. I believe there are indications for more advanced testing"

Dr Daniel Peterson: JCFS 1995: 1:3-4:123-125).

 

"The signal abnormalities in [ME] patients most closely resemble those seen in AIDS encephalopathy. Patients often experience rejection by family, friends and physicians. The illness is hardly 'imaginary' "

Anthony Komaroff, Assistant Professor of Medicine, Harvard Medical School: Clinical Crossroads: Conference Report: JAMA 1997:278:14:1179-1185

 

"The most important thing is not to have (patients) do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA"

Paul Cheney, Professor of Medicine, Capital University, USA: Presentation in Orlando, Florida, February 1999 at the International Congress of Bioenergetic Medicine

 

"In ME, there are chronic sequelae and the effects may be neurological, hormonal, autoimmune and myalgic, which may affect the myocardium"

Dr John Richardson: Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies. The Haworth Press Inc, New York, 2001

 

"There is considerable evidence already that the immune system is in a state of chronic activation in many patients with (ME)"

Anthony Komaroff, Assistant Professor of Medicine, Harvard Medical School: American Medical Association Statement, Co-Cure, 17 July 2001

 

"The prominent association of fatigue with psychiatric disorders has greatly contributed to the erroneous psychological attributions of the illness, much to the detriment of patients. This has led to the trivialization of the illness as little more than a manageable, unexplained fatigue state (rather than the prominent more specific - and debilitating - neurological features of M.E), and the misperception that it may be treatable by little more than counseling, OTC medications, antidepressants and lifestyle changes."

Jill McLaughlin on Co-Cure 22nd September 2004

 

"Currently the US is way behind other technologically developed countries in the terminology, official criteria and research efforts for (ME). Why is this? It is because you continue to focus on the word Fatigue. It has been said many thousand times that Fatigue is NOT a medical term."

Beverly Bugos, PhD: Testimony Presented to the CFSAC at the September 27, 2004 Meeting (Co-Cure 29th September 2004)

 

"Many STILL do not believe it is a "real" illness. Why should they – fatigue isn't an illness, it is a symptom -- as well as a normal physiological state.

It is not that people are stupid or uncaring. It is not that they do not care, they do not understand. I know for a fact that if I had not experienced the illness firsthand and learned about it, with what has been in the media and "out there" in general, I would believe what most people do.

Even saying the illness is serious and debilitating is insufficient - so is mental illness. And truth of the matter it is, it is "fatigue" that has caused the psychiatric overlay and wasted a disproportionate amount of our meager funds studying the efficacy of psychotherapy rather than trying to find viable treatments.

The fatigue model has failed and should not be accepted as a name or the basis for studying the illness. Advertising fatigue or studying it or analyzing it by fatigue scales or holding fatigue conferences or setting up fatigue clinics is not going to help those with underlying neurological illnesses.

And wait for the science? There will not likely ever be a marker for fatigue. The discovery of a diagnostic marker may take decades (similar to the numerous other diseases still waiting for definitive markers), especially given current pathetic (ME) funding levels.The definition of insanity is doing the same thing and expecting different results.

Meanwhile will look forward to the day where we no longer have to keep repeating the same things over and over to those who appear to be neither influenced by evidence nor swayed by logic. Meanwhile we will continue to listen to patients and do what it takes to overcome these hurdles and put even awareness back on the right track."

Jill McLaughlin, 13 May 2004

 

Disease Resembling Poliomyelitis: 1947-1948: Akureyri Disease: This epidemic was described by J Sigurjonsson in Iceland as a Disease Resembling Poliomyelitis. Much to the disagreement of Sigurjonsson and other physicians in Iceland this disease came to be called Akureyri Disease. It was very similar if not identical to later epidemics of Myalgic Encephalomyelitis.

This epidemic started in a local residential school that was located a few hundred feet north of the hospital refuge dump. The epidemic started shortly after the return to school for the autumn session and probably followed significant immunization. Since the epidemic started among school children before it spread to the adults and then to neighbouring towns, there should be no controversy that this type of illness effects children. As in the LA epidemic, the disease manifested both diffuse central and peripheral nervous system symptoms. It was termed an "itis" or an inflammation of the nervous system. This was the first epidemic to demonstrate that we were dealing with a diffuse brain injury and specifically in the area that affected normal sleep and normal muscle physiology. Almost no patients died but all were left disabled and in many cases the disability persists until today, 55 years later.

Three children from this epidemic in the town of Friedrickshavn, became moribund and were unable to leave their beds, they eventually died of Parkinson's-like illness and were autopsied. Parkinson's Disease is almost unheard of in children. There can be no doubt that we were dealing with a diffuse inflammatory brain injury and at least some of these cases, involved the basal ganglia. However for the large number of those who fell ill in Akureyri and neighbouring towns on the north shore of Iceland, the symptoms and signs were those of Myalgic Encephalitis and it was a disease that trapped both child and adult in its icy grips. All true disease processes have variability from minor to major illness, from acute to chronic sequelae. I have seen at least two children in the UK who fell ill with M.E. but could have just as well be diagnosed as Von Economo's Encephalitis-like or Parkinson's-like illness.

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 by Dr Byron Hyde 2006

 

Children Fall Ill with Myalgic Encephalomyelitis: Knowing about the Akureyri epidemic and the Cumberland epidemic, it is curious that there should be any debate in the UK or anywhere else that M.E. is also a disease of children. In March 2006 I was in court giving evidence for a M.E. patient and Dr Salit who frequently sees M.E. patients for the insurance industry and who attended against the patient, made the statement that children do not fall ill with M.E. He uses the term CFS since as he stated, no physician of merit uses Myalgic Encephalomyelitis. He obviously does not appear to know the history of this illness.

The diagnostic problem of identification of M.E. illness is totally social. Why are these children and their parents too often conveniently diagnosed as psychiatric cases? Rather than separating the children from the mothers, rather than calling the parents examples of Munchausen’s-by-proxy they could be and should be investigated and they are not.

How should these children and adults be investigated? If they truly have brain dysfunction as I say they do, then their brain function should be abnormal, this should be measurable and these patients should be investigated. Only if we subgroup these patients can we begin to scientifically treat them.

It should also be remembered that the body, its systems (such as the gastrointestinal system, the muscular system, the endocrine system, the cardiovascular and vascular systems) and its organs are dependent and their actions largely controlled by the brain. If the brain is physiologically injured, then so is the body. Depending upon which parts of the brain are physiologically injured different parts of the body will also be caused to malfunction.

Today, any children or adults with the symptom picture of chronic ongoing Myalgic Encephalomyelitis do not have to die in order for us to examine their brains; we can examine their brains with technological instruments. Let us for this moment only consider the children. All of these children, and the medical and scientific community as well, could benefit if funds were dedicated for the complete and integrated physical and technological examination of these victims. I call them victims since I believe the medical community as a whole have abandoned them, both children and adults. Lack of progress in developing both scientific and medical understanding and treatment protocols are what I believe to be the result of medical and psychiatric arrogance.

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 by Dr Byron Hyde 2006

 

Criticism of the name, Myalgic Encephalomyelitis: The reason why these physicians were so sure that they were dealing with an inflammatory illness of the brain is that they examined patients in both epidemic and endemic situations with this curious diffuse brain injury. In the epidemic situation with patients falling acutely ill and in some cases dying, autopsies were performed and the diffuse inflammatory brain changes are on record.

Recently an M.E. patient's spine has been examined in the UK and the inflammatory nature was also discovered. Myalgic Encephalitis is a diffuse inflammatory injury of the capillaries at the level of the basement membrane of the brain. It makes no sense to rename the horse and call it Myalgic Encephalopathy. All brain pathologies involving brain tissue are encephalopathies. Let us stop fussing around and get back to the real problem and that is investigating the patients, segregating them into sub-type injuries and working on the treatment of these children and adults.

Were these epidemics that I have spoken about cases of Myalgic Encephalomyelitis? They were. I have personally visited all of these cases except for the Cumberland epidemic and Wallis left us such a good description of that epidemic that there can be no doubt. I have personally gone to Los Angeles and examined patients from the Los Angeles epidemic. I have gone to Iceland and examined patients from the Akureyri epidemic. I have examined patients from the Royal Free Hospital epidemics, from the Newcastle sporadic illnesses. Many are the same or similar and many of them had been rejected or shunned because they were not true poliomyelitis. However they were all cases of Myalgic Encephalomyelitis.

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 by Dr Byron Hyde 2006

 

The incubation period from time of contact with the infection until the appearance of the illness is approximately 4-7 days,

In its epidemic form M.E. was most commonly seen in (a) Health Care Workers, (b) children and older students in residential schools, nurses residences and hospitals, (c) in military barracks where students or soldiers were housed in close proximity further supporting the belief in its infectious nature.

Although M.E. was not caused by poliovirus in the Akureyri epidemic, infection with M.E. somehow protected the patients from the polio epidemic that swept though Iceland in the 1950s. Polioviruses represent three of approximately 100 different enteroviruses. This was the reason why many in the UK believed that some of these epidemics were probably caused by a less lethal non-polio form of enteroviruses such as ECHO, Coxsackie, the numbered and new enteroviruses.

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 by Dr Byron Hyde 2006

 

M.E. is not caused by the Epstein Barr virus: The Lake Tahoe epidemic that started in August 1984 also started amongst students. In this case the epidemic began in a high school girls' basketball team that was travelling in a bus to play various other teams. The epidemic spread rapidly with an incubation period of approximately a week. As in many of the other epidemics, it then spread to the general community. After the epidemic started it then involved three high schools, both students and teachers and ultimately spread to the community. For some reason it was considered to be an epidemic of infectious mononucleosis. This is an illness caused by a virus Epstein Barr Syndrome. Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately. Anyone who realizes that infectious mononucleosis is caused by the herpes family virus, Epstein Barr Virus (EBV), and that the incubation period of this illness is approximately 40 days, should have realized that you simply cannot have a rapidly spreading viral epidemic with a virus with a latent period of 40 days. Neither Dr Straus nor Dr Holmes, senior government physicians, should have fallen into such a trap. They only had to go to the excellent CDC library to realize that rather than spending half a million dollars or so on a publication that they should have known would not have incriminated EBV.

Yet this epidemic somehow spread the myth that this illness was caused by EBV. Today, as I write this short history of M.E. the vast majority of physicians and the public still associate Epstein Barr Virus with [M.E.]. Such is the perseverance of error.

M.E. is not caused by Human Herpes Virus 6: This virus was not associated with [ME] until after the 1990 period. HHV6 is the virus that causes the benign childhood illness, Roseola. By 1986 HHV6 was already known to have an incubation period of 9 days due to human experimentation when the actual virus was injected into several children. See (Gorbac, Second Edition, Infectious Diseases, page 1335). When acquired by random infection, the incubation period of HHV6 Roseola was more like 12 days. So once again anyone with access to a library or a computer would have soon dispelled any view that HHV6 was a cause of M.E. epidemics where the incubation was approximately 7 days or less.

Is it possible that Steven Strauss and the other intelligentsia of the National Institute of Health (NIH) in Bethesda and CDC in Atlanta and elsewhere didn't have access to libraries and the Internet? Maybe we should start a public request to ask for donations for them.

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 by Dr Byron Hyde 2006

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Exciting book news!

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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