The Hummingbirds' Foundation for M.E.

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

The Clinical and Scientific Basis of M.E. - Review

The Clinical and Scientific Basis of Myalgic Encephalomyelitis edited by Byron Hyde, M.D., Nightingale Research Foundation, Ottawa, Canada

This book provides, in one superb 75-chapter source, an up-to-date, comprehensive account of current knowledge concerning  Myalgic Encephalomyelitis. This book contains the most comprehensive and accurate information available on the symptoms of M.E., the history of M.E. including a look at many of the outbreaks of the illness, epidemiology of M.E. (including the links with polio), issues of diagnosis, children with M.E., investigation, virology, immunology, muscle pathology, host response, food intolerance, brain mapping, neurophysiology, neuropsychology, sleep dysfunction and much more. This is an essential reference book for medical, government and public library reference rooms. This text is a unique vehicle for researchers, physicians and other health education and government officials, and is also easily understandable by the general public with an interest in M.E.

This is a simply essential reference book for doctors, and M.E. patients, and easily surpasses all others of its type (as there really are no others of its type). This book contains the accumulated knowledge of many of the worlds leading M.E. experts but the brilliant chapters written by Dr Hyde alone (arguably the world's leading M.E. specialist) make this book worth the purchase price. No other doctor has captured the complex neurological (and other) disabilities of M.E. so well.

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


Availability of this book:

See The Nightingale Foundation Website for more information and purchasing details. All funds from the purchase of this book (when purchased from the Nightingale Foundation) also benefit further research into the illness and assist in the promotion of greater understanding about the illness.

Secondhand copies of this book may also be available through www.amazon.com (although this way no donation is made to M.E. advocacy and the price may actually be more expensive than a new copy at times, so make sure you check the Nightingale website first.)

Some quotes/excerpts from this book are reprinted below. This book is also referenced/quoted in: What is Myalgic Encephalomyelitis?  Testing for Myalgic Encephalomyelitis and The Ultra-comprehensive M.E. Symptom List on this site (among others).


Byron Hyde M.D. is the world's preeminent ME authority.

See the Byron Hyde MD page to read more articles by Dr Hyde.

Quotes from the book

Fatigue is immeasurable and largely indefinable. Fatigue is a normal phenomenon as well as being associated with almost all chronic disease states. Fatigue, which is simply one of the common features of healthy life and disease, neither defines [ME] nor clarifies the illness. The term ‘fatigue’ does cause disparagement to those who study this serious debilitating illness and those who suffer from it.

Byron Hyde MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p x

 

ME [is] a loss of the ability of the central nervous system (CNS) to adequately receive, interpret, store and recover information. This dysfunction also results in the inability of the CNS to consistently programme and achieve normal smooth end organ response. [It is a] loss of normal internal homeostasis. The neurochemical homeostatic events continue to be employed uselessly and to the detriment of the organism. This modulatory biochemical complex, biologically derived over the millennium to assist the organism, destabilises the autonomic neuronal outflow and the individual can no longer function systemically within normal limits.

Byron Hyde MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p xi

 

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

 

(Commenting on the CDC definition of CFS:) The problem with fatigue is that it is neither specific, definable nor scientifically measurable. Fatigue is both a normal and a pathological feature of every day life. Every normal person gets fatigued. Fatigue is a common feature of much major psychiatric disease and major medical disease. Since fatigue is such an integral part of many illnesses, by calling fatigue the primary characteristic, the authors necessitated the elimination of hundreds of other diseases. To truly follow the criteria set out by the CDC definition probably makes CFS the most expensive illness to investigate of any known disease. Fatigue is not an object, it is simply a modifier in search of a noun.

Also, taking fatigue as the flagship symptom of a disease not only bestows the disease with a certain Rip Van Winkle humour, but it removes the urgency of the fact that the majority of ME symptoms are in effect CNS symptoms. To most physical ME scientists and clinicians, ME represents a major attack on the CNS by the chronic effects of a viral infection.

Byron Hyde MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p 11-12

 

[ME] is a systemic disease with many systemic features, but it is characterised primarily by CNS dysfunction [and not by] fatigue.

Byron Hyde MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p18

 

[ME patients] can frequently tell you the hour, day and year when the illness started. The onset is frequently dramatic and they can usually be diagnosed within 2 weeks of the onset of their illness.

Byron Hyde MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p22

 

Delayed onset M.E.

There is no difference from the acute onset M.E. in its characteristics however M.E. follows:

  1. Mononucleosis-like [or glandular fever-like] illness: six months to two years earlier, a mononucleosis-like illness occurred that may have persisted with marked prostration for two or more months followed by a complete clinical recovery. [Note that this is not a true mononucleosis or glandular fever infection, merely an illness/infection which presents with similar symptoms and so is mononucleosis-LIKE.]
  2. Encephalitis: Six months to two years earlier, and encephalitic illness occurred, severe in nature but of very short duration, usually less than one week of prostration, followed by a complete clinical remission without any persisting sequelae.
  3. Subclinical Poliomyelitis: Many years earlier, when in childhood, the individual had a parent, sibling or close contact who had paralytic poliomyelitis. The M.E. patient never demonstrated any poliomyelitis-type illness. This delayed acute onset group may be the same group as the post-polio patients but who had suffered a subclinical case of poliomyelitis. Up to one third of adult M.E. patients may fit into this group.

Byron Hyde MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. pp. 21 - 22

 

The morbidity of up to 25% [of those patients sent to Dr Hyde as possible CFS] may arise from the following illnesses:

Multiple sclerosis

Thyroid illness

Localised and Metastatic malignancies

Brain tumours, including astrocytomas, gliomas

Transverse Myelitis

Myopathic illnesses including:

Myasthenia gravis

Mitochondrial myopathies

Post-infectious polymyositis

Vitamin B12 deficiency disorders:

Pernicious anaemia

Intentional dietary deprivation

Intestinal disease associated with or independent of M.E.

Rheumatoid illness or lupus (SLE)

Sarcoma

Renal or liver disease

Infectious illnesses including:

Toxoplasmosis

AIDS

Lyme disease (Borrelia burgdorferi)

Tuberculosis

Brucellosis

Various psychiatric and social psychiatric states including:

Anxiety neurosis

Uncomplicated endogenous or reactive depression

Psychopathic personality disorder

Schizophrenia and other psychiatric disease

Byron Hyde MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p 22

 

Central nervous system dysfunction, and in particular, inconsistent CNS dysfunction is, undoubtedly both the chief cause of disability in [ME] and the most critical in the definition of the entire disease process. Of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of [ME]. When this simple fact is understood, it become immediately apparent why this is such a devastating disease for children, students and adults, both within and outside the educational system. Today, few work situations exist where consistent use of education and developed cognitive skills are not necessary to maintain a place in the work force.

Patients can return to work with pain, with muscle spasm, with fatigue, with motor dysfunction, but when the patient consistently has difficulty in making new memories, recalling old memories and coordinating new and old information he becomes of little use in the modern work force. It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these dysfunctions, that creates ‘the most chronic of chronic disabilities.’ It is these combined acquired, chronic brain and physical dysfunctions that define [ME].

Byron Hyde MD and Anil Jain MD in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p 43

 

It is a fact that the majority of M.E. patients are not in high-stress occupations as the popular press frequently suggests, but are teachers, nurses, physicians, and other health care workers. This group represents those most closely related to infectious illness, frequent immunisations and those most frequently immunised.

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

 

There appears to be somewhat of an occupational bias towards teachers (students) and health care workers in the incidence of Myalgic Encephalomyelitis cases (and outbreaks). These higher risk groups do not work in environments which are more stressful than the average job, but these are jobs which require higher rates of immunisation than others. This relationship with inoculation is often seen in infectious illnesses.

Paraphrased from The Clinical and Scientific Basis of ME Dr Byron Hyde MD

 

Dr Sheila Bastien PhD. is unarguably the expert in this field with over 20 years experience in neuropsychological testing and more than 6 years experience in applying these tests to M.E. patients. She explains in The Clinical and Scientific Basis of ME that: 

Deterioration of IQ levels, as well as cognitive and motor dysfunction in these patients, suggest a pathological process in the brain. The pattern of focal and lateral impairments is consistent with patients who have this particular neurologic dysfunction. The impairment pattern is consistent across the study group [of M.E. patients] although impairment levels vary. This pattern is not seen in other diseases or injuries, such as Alzheimers, stroke, head injuries, multiple sclerosis, systemic lupus erythematosis, personality disorders, depression, psychosis, malingering, anxiety or panic disorders, somatisation or situational stress disorders. The pattern of impairment is one of focal and lateral deficits, consistent with a multi-focal organic brain syndrome. Tests suggest that the most impaired focal areas are the left temporal, right paretal, and left temporal lobes; although there are lesser bilateral impairments in the opposite lobes as well. (pp. 453 - 454)

 

To suggest that the diagnosis of M.E. is covered by the term ‘fatigue of mind and muscle’ is equivalent to defining diabetes as merely polydipsia and polyuria and ignoring the eye, the renal, the CNS and arterial consequences which may ensue.

J. Richardson in ‘The Clinical and Scientific basis of ME edited by Byron Hyde MD. p 92

 

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)

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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."

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