The Hummingbirds' Foundation for M.E. (HFME)

For more information about the HFME, the aims of the HFME, how to contribute to or join the HFME, please see the About HFME page.

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. M.E. is classified in the current WHO International Classification of Diseases with the neurological 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.

M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Poliomyelitis (polio). Earlier names for M.E. were ‘atypical multiple sclerosis’ and ‘atypical polio.’

What defines M.E. is a specific type of acquired damage to the brain (the central nervous system) caused by a virus; an enterovirus.

Myalgic Encephalomyelitis is an acute (sudden) onset neurological disease 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').

The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. This neurological damage has been confirmed in autopsies of M.E. patients.

Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis.

More than 64 individual symptoms of M.E. have been scientifically documented.

Encephalomyelitis can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases there is. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication. In some cases Myalgic Encephalomyelitis is fatal.

Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.
     However, the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input. 
     This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.
     If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive. 
    M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.

Myalgic Encephalomyelitis is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose (within just a few weeks of onset) using a series of objective tests. If all tests are normal, then a person does not have M.E.

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 and by biochemical and hormonal assays.

M.E. is an infectious neurological disease 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.

Governments around the world are currently spending $0 a year on M.E. research. (See below for references for this text.)

What is M.E.?  A historical, political and medical overview of M.E. 

M.E.: The medical facts A purely medical overview of the illness including detailed research findings. 

Testing for M.E. An overview of some of the series of tests which can be done to confirm a suspected M.E. diagnosis.

M.E. 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.

Hummingbirds - an essay expanding on the idea of hummingbirds as a metaphor for Myalgic Encephalomyelitis. See also: The Hummingbird Gallery

M.E. vs MS: Similarities and differences M.E. and MS are very similar diseases medically in many ways. However, for reasons that have nothing to do with science, the two diseases are treated very differently politically and socially. The contrast could not be more stark. M.E. patients are treated terribly (and often abused terribly, even unto death in some cases), yet there is no public outcry as there would be if MS patients were treated in this same way. Thus people with M.E. find themselves in the terrible position of actually ENVYING people who have MS.

Who benefits from 'CFS' and 'ME/CFS'? For whose benefit was ‘Chronic Fatigue Syndrome’ created, and for whose benefit is it so heavily promoted despite its utter lack of scientific credibility? Who benefits from Myalgic Encephalomyelitis and ‘CFS’ being mixed together through unscientific concepts such as ‘CFS/ME’ and ‘ME/CFS’ and Myalgic ‘Encephalopathy’? Who benefits from the facts of M.E. remaining ignored, obscured and hidden in plain sight?

Smoke and mirrors This paper looks at the lack of evidence (and financial and political motivations) behind the scientifically unsupportable 'behavioural' model of M.E. and outlines a strategy for the resolution of the confusion caused by the bogus 'CFS' disease category.

The misdiagnosis of CFS None of the definitions of CFS defines M.E., so what do they define? What does a diagnosis of 'CFS' actually mean? See also: Where to after a 'CFS' (mis)diagnosis?

Why the fictional disease category of ‘CFS’ must be abandoned

The ultra-comprehensive M.E. symptom list. 

The myths about M.E.

The effects of CBT and GET on patients with M.E. 

The CBT and GET database is a comprehensive guide to the use of CBT and GET on patients with Myalgic Encephalomyelitis. It contains excerpts and links to literally hundreds of articles and research studies which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the scinetifically unsupportable 'behavioural' paradigm of M.E. and the use of these inappropriate and potentially devastating or fatal interventions. 

Problems with the so-called "Fair name" campaign: Why it is in the best interests of all patient groups involved to reject and strongly oppose this misleading and counter-productive proposal to rename ‘CFS’ as ‘ME/CFS’

A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy 

Treating M.E. - The Basics 

The Ultra-comprehensive M.E. Symptom List 

Treating M.E. - Avoiding Overexertion 

3 Part M.E. Ability and Severity Scale

A Million Stories Untold  A must-read for friends and family members of M.E. patients.

Problems with 'our' M.E. (or 'CFS' 'CFIDS' or 'ME/CFS' etc.) advocacy groups

Problems with the use of 'ME/CFS' by M.E. advocates

Are we just 'marking time?'  Why are we waiting to act when a series of tests for M.E. exist RIGHT NOW, and the need for activism and action is so very urgent?

The misdiagnosis of CFS None of the definitions of CFS defines M.E., so what do they define? What does a diagnosis of 'CFS' actually mean? This paper explains why every diagnosis of 'CFS' can only ever be a misdiagnosis.

See also: Where to after a 'CFS' (mis)diagnosis?

Why the disease category of ‘CFS’ must be abandoned M.E. and 'CFS' are not the same. This paper discusses why renaming, refining or sub-grouping 'CFS' cannot work and why 'CFS' must be abandoned. 

Who benefits from 'CFS' and 'ME/CFS'? For whose benefit was ‘Chronic Fatigue Syndrome’ created, and for whose benefit is it so heavily promoted despite its utter lack of scientific credibility? Who benefits from Myalgic Encephalomyelitis and ‘CFS’ being mixed together through unscientific concepts such as ‘CFS/ME’ and ‘ME/CFS’ and Myalgic ‘Encephalopathy’? Who benefits from the facts of M.E. remaining ignored, obscured and hidden in plain sight?

Background information: What is CFS? What is M.E.?

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 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.

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 (or wastebasket diagnosis) 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.).

Every diagnosis of ‘CFS’ can only ever be a misdiagnosis. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled, with conditions such as post-viral fatigue syndromes, Lyme disease, vitamin deficiencies, Fibromyalgia, Athlete's over training syndrome, depression (and other organic psychiatric disease), Bechet's disease, Multiple Sclerosis, cancer and so on. Patients given a misdiagnosis of 'CFS' must not be abused, ridiculed or neglected, as happens so often now. These patients deserve to be correctly diagnosed and treated for the distinct conditions they have, finally. The bogus concept of 'CFS' must be abandoned. All a diagnosis of ‘CFS’ actually means is that the patient has a gradual onset fatigue syndrome which is usually due to a missed major disease.

The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. 

Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute (sudden) and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can 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 sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E.

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

 

Under the cover of ‘CFS’ certain vested interest groups have assiduously attempted to obliterate recorded medical history of Myalgic Encephalomyelitis; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years. As M.E. expert Dr Byron Hyde explains:

Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. 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. 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. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears.

M.E. is a clearly defined disease process. CFS by definition has always been a syndrome. Although the authors of these 'CFS' 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.

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 only way forward for M.E. patients and all of the diverse patient groups commonly misdiagnosed with ‘CFS’ (both of which are denied appropriate support, diagnosis and treatment, and may also be subject to serious medical abuse) is that the bogus disease category of ‘CFS’ must be abandoned. Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery and this process must begin with a correct diagnosis if at all possible. A correct diagnosis is half the battle won.

This website is very large. In order for site visitors to find the information they need more quickly, the Information Guides page features sections relevant to each of the different types of visitors to the site. Guides available so far include the following: (click on the most appropriate description)

You may also like to browse the site using the HFME site map, or by doing searches for relevant keywords.

The book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis by Dr Byron Hyde is vital reading for anyone with an interest in M.E.

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. See the Review of this book for more information and for purchasing details. Dr Byron Hyde is the world's preeminent ME authority.

See also: A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome and The Complexities of Diagnosis by Dr Byron Hyde (and more) available online. Dr Hyde's latest paper on M.E. is also a must-read: The Nightingale Definition of M.E.

*HIGHLY RECOMMENDED*

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 and Dr. Elizabeth Dowsett in particular – do not exist.

Between Dr Byron Hyde and Dr. Elizabeth Dowsett, and their mentors the late Dr John Richardson and Dr Melvin Ramsay (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 present day. Between them they have examined more than 15 000 individual (sporadic and epidemic) M.E. patients, as well as each authoring numerous studies and articles on M.E. Again, more experienced, more knowledgeable and more credible M.E. experts than these simply do not exist.

For more information see the References page.

"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

"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

"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

"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

"In the 1980s in the US (where there is no NHS and most of the costs of health care are borne by insurance companies), the incidence of ME escalated rapidly, so 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 [for M.E. patients]. Influenced by these psychiatrists, government bodies around the world have continued to propagate the same falsehoods with the result that patients are left without any hope of understanding or of health service provision or delivery. As a consequence, government funding into the biomedical aspects of the disorder is non-existent." Professor Malcolm Hooper

'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

"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

Because hummingbirds are tough little things with a lot more strength, bravery and determination than most people ever give them credit for - a lot like many of the people who have Myalgic Encephalomyelitis.