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Why put together a M.E. website at all? 
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The idea behind this website was to try to create a guide to M.E. which doesn't just mindlessly repeat the same inaccurate myths and propaganda again and again and instead focuses on the available facts:
- There is an abundance of hard scientific evidence that proves beyond a doubt that M.E. is a severely debilitating (and potentially fatal) organic neurological illness that has occurred for centuries in both epidemic and sporadic forms. Enough scientific evidence exists now to prove this literally more than a THOUSAND times over. This evidence spans over 70 years and has been published in prestigious peer-reviewed journals all over the world.
- No evidence whatsoever exists to show that M.E. is caused or perpetuated by psychiatric or 'behavioural' problems. (Studies involving 'fatigue' sufferers who do not have M.E. have no more relevance to M.E. patients than patients with MS, or any other illness.) These theories exist solely because they are so financially and politically convenient and profitable on such a large scale. Scientifically they are no more viable than the theory of a ‘flat earth.'
The problem is not a lack of scientific evidence, but that the mountain of evidence which exists is continually ignored by many of those in positions of power who are abusing that power to further their own vested interests; helped immeasurably by the creation of the bogus disease category of 'CFS.'
This pretence of ignorance (particularly by government) has had devastating consequences for people with M.E. and has also meant that the number of M.E. sufferers continues to rise unabated. The general public worldwide - including sufferers themselves - have been lied to repeatedly about the reality of Myalgic Encephalomyelitis.
The decades of systemic abuse and neglect of the million or more people with M.E. worldwide has to stop. M.E. and CFS are not the same. Knowledge is power.
See What is M.E.? for more information. (See the section below for the references for this text.)
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What is Myalgic Encephalomyelitis?
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Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder with the code G.93.3. It can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934.
What defines M.E. is not mere 'fatigue' but a specific type of acquired damage to the brain (the central nervous system) caused by a virus; an enterovirus. Myalgic Encephalomyelitis is an acutely acquired illness initiated by a virus infection with multi system involvement which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions – this is always damaged in M.E. (Hence the name 'Myalgic Encephalomyelitis')
So although M.E. is primarily neurological, symptoms may be manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. Symptoms are also caused by a loss of normal internal homeostasis - the body/brain no longer responds appropriately to certain levels of: physical activity, cognitive exertion, sensory input and orthostatic stress.
This is not simply theory, but is based upon an enormous body of mutually supportive research and clinical information. Confirmation of this hypothesis is 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. Newer scientific evidence is increasingly strengthening this hypothesis. M.E. is not 'medically unexplained.' If all tests are normal, then a person does not have M.E.
M.E. is an infectious neurological illness which affects all races and socio-economic groups and has been diagnosed all over the world with a similar strike rate to multiple sclerosis. Children as young as five can get M.E., as well as adults of all ages.
M.E. can be extremely disabling. 25% of M.E. sufferers are severely affected and housebound and bedbound. In some cases Myalgic Encephalomyelitis is fatal.
M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Polio. Governments around the world are currently spending $0 a year on M.E. research. (See below for references for this text.)
For more information see:
What is Myalgic Encephalomyelitis? A historical, political and medical overview of M.E.
Myalgic Encephalomyelitis: The Medical Facts A purely medical overview of the illness including detailed research findings.
Testing for Myalgic Encephalomyelitis An overview of some of the series of tests which can be done to help confirm a suspected M.E. diagnosis.
Myalgic Encephalomyelitis Research and Articles A collection of literally HUNDREDS of some of the best M.E. research and articles, from some of the worlds leading researchers, doctors and M.E. advocates. Sections include: M.E. outbreaks, M.E. and children, viral research, cardiac research, the severity of M.E. and many more.
Putting Research and Articles into Context Because of the politics and financial interests involved in M.E. research it is important that before you read anything about the illness that you understand the context in which it was written.
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References and resources...
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All of the information concerning Myalgic Encephalomyelitis on this website is fully referenced and has been compiled using the highest quality resources available, produced by the world's leading M.E. experts.
More experienced and more knowledgeable M.E. experts than these – Dr Byron Hyde MD. and Dr. Elizabeth Dowsett MD. in particular – do not exist.
Between Dr Byron Hyde MD. and Dr. Elizabeth Dowsett MD. – and their mentors the late Dr John Richardson MD. and Dr Melvin Ramsay MD. (respectively) – these four doctors have been involved with M.E. research and M.E. patients for well over 100 years, collectively; from the 1950s to the current day. Between them they have examined more than 14 000 individual (sporadic and epidemic) M.E. patients, as well as each authoring numerous studies and articles on M.E., and books on M.E.
Again; more experienced, more knowledgeable and more credible M.E. experts than these simply do not exist.
The papers on this site merely provide a brief summary of some of the most important facts of M.E. They have been created – by a well-read layperson – purely for the benefit of those individuals without the time, inclination or ability to read each of the large number of far more complex and lengthy source papers. A full list of references is given at the end of each paper however, and these original references are very highly recommended as essential additional reading for any physician (or anyone else) with a real interest in Myalgic Encephalomyelitis.
To read a fully referenced version of all of the information about M.E. given on this page, see the paper: Myalgic Encephalomyelitis is not fatigue, or 'CFS'
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Breaking news!!!
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More M.E. inspired features, articles and research...
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Articles (etc) specifically for M.E. sufferers
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Essential additional reading on M.E.
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The book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis edited by Dr Byron Hyde M.D. is vital reading for anyone with an interest in M.E.
This book provides, in one superb 75-chapter source, an up-to-date, comprehensive account of current knowledge concerning the history, epidemiology, 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. All funds from the sale of this book go towards M.E. research and advocacy. See the Review of this book for more information and for purchasing details. (There is currently a special offer on this book and it is available for just $49!)
Dr Byron Hyde M.D. is the world's preeminent ME authority.
See also: A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome (an extract) and The Complexities of Diagnosis by Dr Byron Hyde M.D. (and more) available online. *HIGHLY RECOMMENDED*
Dr Hyde's latest paper is also a MUST-READ: The Nightingale Definition of M.E.
More essential reading on M.E.: What is ME? What is CFS? Information for Clinicians & Lawyers by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, The Mental Health Movement: Persecution of Patients? by Professor Malcolm Hooper, Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! and The Late Effects Of M.E. and A Rose by Any Other Name and Redefinitions of ME - a 20th Century Phenomenon by Dr Elizabeth Dowsett, Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis (174 pages) by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, Worldwide Epidemic:an ALERT to citizens worldwide and; ME and CFS, the Definitions from the Committee for Justice and Recognition of M.E., and A New and Simple Definition of Myalgic Encephalomyelitis by Dr Byron Hyde MD.
To read more articles by any of these authors see: Articles sorted by Author
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A short note on terminology and definitions...
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It is important to be aware that Myalgic Encephalomyelitis and 'CFS' are not synonymous terms and should not be used interchangeably, and that 'fatigue' is not a defining nor even essential feature of M.E. M.E. is defined by a variety of serious (testable) neurological, cardiac, cardiovascular, metabolic and other abnormalities - not by mere 'fatigue.'
Myalgic Encephalomyelitis 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.
CFS was created in the 1980s in the US in response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has Myalgic Encephalomyelitis (M.E.), and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’
The bogus disease category of ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with psychiatric fatigue states and various unrelated fatigue syndromes for the benefit of insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.
The terminology is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and CFS are very different and distinct, and it is the definitions of each of these terms which is of primary importance. The distinction must be made between terminology and definitions.
- Myalgic Encephalomyelitis is a systemic acquired illness initiated by a virus infection which is characterised by (scientifically measurable) damage to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. The onset of M.E. is always acute. M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can always be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct. M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or fatal. M.E. is a chronic/lifelong disease that affects adults and children. Fatigue is not a defining symptom of M.E., nor even an essential symptom of M.E. There are more than 64 M.E. symptoms, some of which are unique to the disease. People with M.E would give anything to instead only be severely ‘fatigued’ or tired all the time.
- Chronic Fatigue Syndrome is a (financially motivated) man-made construct created in the US in 1988. It is not a distinct disease, but a mere diagnosis of exclusion based on the presence of the symptom of fatigue. CFS cannot be diagnosed until after 6 months have passed. If serious abnormalities are found on testing, a person no longer qualifies for a diagnosis of ‘CFS.’ (The fatigue in ‘CFS’ can only ever be ‘medically unexplained.’) The onset of ‘CFS’ may be gradual or acute. A diagnosis of ‘CFS’ does not mean that a person has any distinct disease, including M.E. Every diagnosis of CFS can only ever be a misdiagnosis. ‘CFS’ is made up of people with a vast array of unrelated psychological and non-psychological illnesses (such as Lyme disease, Fibromyalgia, post-viral fatigue syndromes etc.) with little in common but the symptom of fatigue.
For more information on why the bogus disease category of 'CFS' must be abandoned for the benefit of all the patient groups involved, (along with the use of other vague and misleading umbrella terms such as ‘ME/CFS’ ‘CFS/ME’ 'CFIDS' and 'Myalgic Encephalopathy' and others) see: The misdiagnosis of CFS, Why the disease category of ‘CFS’ must be abandoned and What is M.E.? Extra extended version.
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