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.

An important note

Before reading the research/advocacy information given in the links below, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The
A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.

M.E. overview

What is known medically and scientifically about M.E. so far?

Despite popular opinion, Myalgic Encephalomyelitis is not ‘medically unexplained’ nor ‘mysterious.’ There simply is no legitimate scientifically motivated debate about whether or not M.E. is a ‘real’ illness or not or has a biological basis. The psychological or behavioural theories of M.E. are no more scientifically viable than are the theories of a ‘flat earth.’ They are pure fiction.

The reality is that there is an abundance of research which shows that M.E. is an organic illness which can have profound effects on many bodily systems and many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research articles; some dating back to the 1950s and earlier.

 

Myalgic Encephalomyelitis is not the same thing as 'CFS'

When the terms CFS, CFIDS, ME/CFS, CFS/ME, Myalgic Encephalopathy or ME-CFS are used what is being referred to may be patients with/facts relating to any combination of: 1. Miscellaneous psychological and non-psychological fatigue states (including somatisation disorder) 2. A self limiting post-viral fatigue state or syndrome (eg. following glandular fever.) 3. A mixed bag of unrelated, misdiagnosed illnesses (each of which feature fatigue as well as a number of other common symptoms; poor sleep, headaches, muscle pain etc.) including Lyme disease, multiple sclerosis, Fibromyalgia, athletes over-training syndrome, depression, burnout, systemic fungal infections (candida) and even various cancers 4. Myalgic Encephalomyelitis patients.

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.). 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. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.

  • 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 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.

There are now more than nine different definitions of ‘CFS.’ All each of these flawed CFS definitions ‘define’ is a heterogeneous (mixed) population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue. The fact that a person qualifies for a diagnosis of CFS, based on any of the CFS definitions (a) does not mean that the patient has Myalgic Encephalomyelitis, and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’ A diagnosis of CFS – based on any of the CFS definitions – can only ever be a misdiagnosis.

There is no such disease/s as ‘CFS’ – the name CFS and the bogus disease category of CFS must be abandoned (along with the use of other vague and misleading umbrella terms such as ‘ME/CFS’ ‘CFS/ME’ 'CFIDS' and 'Myalgic Encephalopathy' and others), for the benefit of all the patient groups involved. Myalgic Encephalomyelitis is a distinct neurological disease, it is not the same thing as 'CFS.'




What does the term ICD-CFS mean?

The various definitions of ‘CFS’ do not define M.E. Myalgic Encephalomyelitis is an organic neurological disorder as defined at G.93.3 in the World Health Organization’s International Classification of Diseases (ICD). The definitions of ‘CFS’ do not reflect this. The ‘CFS’ definitions are not ‘watered down’ M.E. definitions, as some claim. They are not definitions of M.E. at all.

However, ever since an outbreak of M.E. in the US was given the label ‘CFS,’ the name/definition ‘CFS’ has prevailed for political reasons. ‘CFS’ is widely though wrongly applied to M.E. as well as to other diseases.

The overwhelming majority of ‘CFS’ research does not involve M.E. patients and is not relevant in any way to M.E. patients. However, a very small amount (a minuscule percentage) of research published under the name ‘CFS’ clearly does involve a significant number of M.E. patients as it details those abnormalities which are unique to M.E. Sometimes the term ‘ICD-CFS’ is used in those studies and articles which, while they use the term ‘CFS,’ do relate to some extent to authentic M.E. 

In addition to its use in relation to research, some people use the term ‘ICD-CFS’ to refer to the disease generally. The term is usually used by people who are aware of the psychological paradigm of ‘CFS,’ and who want to indicate a real, biological disease rather than a psychological one.  However, which exact disease or diseases are being referred to with this term varies considerably from one author to another. As with terms such as ‘ME/CFS’ the term ‘ICD-CFS’ only increases confusion as it has no agreed definition and many different groups use it to refer to very different, often very mixed, patient groups.

 

Problems with ‘CFS’ or so-called ‘ICD-CFS’ research

The overwhelming majority of ‘CFS’ research does not involve M.E. patients and is not relevant in any way to M.E. patients. A small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. Unless studies are based on an exclusively M.E. patient group, results cannot be interpreted and are meaningless for M.E. Thus while it is important to be aware of the small amount of research findings that do hold some value for M.E. patients, using the term ‘ICD-CFS’ to refer to this research is misleading and in many ways just damaging as using terms and concepts like ‘ME/CFS’ or ‘CFS/ME.’

For further details of the WHO ICD classifications of M.E. and ‘CFS’ worldwide (and why terms such as ‘ICD-CFS,’ ‘ME/CFS’ and Myalgic Encephalopathy’ must be avoided) please see the new paper by patient advocate Lesley Ben entitled: The World Health Organization’s International Classification of Diseases (WHO ICD), ME, ‘CFS,’ ‘ME/CFS’ and ‘ICD-CFS’ 

  • Virtually all of the research which does relate to M.E. (at least in part) but which uses the term/concept of ‘CFS’ (or ME/CFS, or CFIDS etc.) is also contaminated in some way by ‘CFS’ misinformation. Most often these papers contain a bizarre mix of facts relating to both M.E. and ‘CFS.’ For more information on some of the most common inaccuracies and ‘CFS’ propaganda included in this research, see the paper: Putting Research and Articles on Myalgic Encephalomyelitis into Context

 

What we know about M.E. so far includes that:

Myalgic encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection 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 CNS is diffusely injured at several levels, these include the cortex, the limbic system, the basal ganglia, the hypothalamus and areas of the spinal cord and its appendages. This persisting multilevel central nervous system (CNS) dysfunction is undoubtedly both the chief cause of disability in M.E. and the most critical in the definition of the entire disease process.

Myalgic Encephalomyelitis represents an acute change in the balance of neuropeptide messengers, and due to this, a resulting loss of the ability of the CNS (the brain) to adequately receive, interpret, store and recover information which enables it to control vital body functions (cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance etc). It is a loss of normal internal homeostasis. The individual can no longer function systemically within normal limits.

M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Again, although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E. Some individuals also have damage to skeletal and heart muscle. Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage.

M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) – and an associated injury of the immune system – by the chronic effects of a viral infection. There is also transient and/or permanent damage to many other organs and bodily systems (and so on) in M.E. M.E. affects the body systemically. Even minor levels of physical and cognitive activity, sensory input and orthostatic stress beyond a M.E. patient’s individual post-illness limits causes a worsening of the severity of the illness (and of symptoms) which can persist for days, weeks or months or longer. In addition to the risk of relapse, repeated or severe overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death in M.E.

M.E. is not stable from one hour, day, week or month to the next. It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these functions, that creates the high level of disability in M.E. It is also worth noting that of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of M.E.

All of this is not simply theory, but is based upon an enormous body of mutually supportive clinical information. These are well-documented, scientifically sound explanations for why patients are bedridden, profoundly intellectually impaired, unable to maintain an upright posture and so on.

 

What are some of the specific abnormalities that have been found in M.E. patients?

There is an abundance of research which shows that M.E. is an organic illness which can have profound effects on many bodily systems. These are well-documented, scientifically sound explanations for why patients are bedridden, profoundly intellectually impaired, unable to maintain an upright posture and so on. More than a thousand good articles now support the basic premises of M.E. Autopsies have also confirmed such reports of bodily damage and infection.

 

Many different organic abnormalities have been found in M.E. patients (in peer reviewed research). Patient advocates Margaret Williams and Eileen Marshall explain that:

  • there is evidence of disrupted biology at cell membrane level
  • there is evidence of abnormal brain metabolism
  • there is evidence of widespread cerebral hypoperfusion
  • there is evidence of central nervous system immune dysfunction
  • there is evidence of central nervous system inflammation and demyelination
  • there is evidence of hypomyelination
  • there is evidence that Myalgic Encephalomyelitis is a complex, serious multi-system autoimmune disorder (in Belgium, the disorder has now been placed between multiple sclerosis and Lupus)
  • there is evidence of significant neutrophil apoptosis
  • there is evidence that the immune system is chronically activated (eg. the CD4:CD8 ratio may be grossly elevated)
  • there is evidence that natural killer (NK) cell activity is impaired (ie. diminished)
  • there is evidence that the vascular biology is abnormal, with disrupted endothelial function
  • there is novel evidence of significantly elevated levels of isoprostanes
  • there is evidence of cardiac insufficiency and that patients are in a form of cardiac failure (which is exacerbated by even trivial levels of physical activity, cognitive activity and orthostatic stress)
  • there is evidence of autonomic dysfunction (especially thermodysregulation; frequency of micturition with nocturia; labile blood pressure; pooling of blood in the lower limbs; reduced blood volume (with orthostatic tachycardia and orthostatic hypotension. Findings of a circulating blood volume of only 75% of expected are common, and in some patients the level is only 50% of expected.)
  • there is evidence of respiratory dysfunction, with reduced lung function in all parameters tested
  • there is evidence of neuroendocrine dysfunction (notably HPA axis dysfunction)
  • there is evidence of recovery rates for oxygen saturation that are 60% lower than those in normal controls
  • there is evidence of delayed recovery of muscles after exercise. (Affecting all muscles including the heart.)
  • there is evidence of a sensitive marker of muscle inflammation
  • there is evidence that the size of the adrenal glands is reduced by 50%, with reduced cortisol levels
  • there is evidence of at least 35 abnormal genes, (these are acquired genetic changes, not hereditary), specifically those that are important in metabolism; there are more abnormal genes in Myalgic Encephalomyelitis than there are in cancer
  • there is evidence of serious cognitive impairment. (Worse than occurs in AIDS dementia)
  • there is evidence of adverse reactions to medicinal drugs, especially those acting on the CNS
  • there is evidence that symptoms fluctuate markedly from day to day and even from hour to hour (2006, [Online])

(Note that this is only a sample of some of the research available, not an exhaustive list.) It is known that Myalgic Encephalomyelitis is:

1.     An acute onset (biphasic) epidemic or endemic infectious disease process

 

2.     An autoimmune disease (with similarities to Lupus)

3.     An infectious neurological disease, affecting adults and children

4.     A disease which involves significant (and at times profound) cognitive impairment/dysfunction

5.     A persistent viral infection (most likely due to an enterovirus; the same type of virus which causes poliomyelitis and post-polio syndrome)

6.     A diffuse and measurable injury to the vascular system of the central nervous system (the brain)

7.     A central nervous system (CNS) disease (with similarities to MS)

8.     A variable (but always, serious) diffuse (acquired) brain injury

9.     A systemic illness (associated with organ pathology; particularly cardiac)

10.   A vascular disease

11.   A cardiovascular disease

12.   A type of cardiac insufficiency

13.   A mitochondrial disease

14.   A metabolic disorder

15.   A musculo-skeletal disorder

16.   A neuroendocrine disease

17.   A seizure disorder

18.   A sleep disorder

19.   A gastrointestinal disorder

20.   A respiratory disorder

21.   An allergic disorder

22.   A pain disorder

23.   A life-altering disease

24.   A chronic or lifelong disease associated with a high level of disability

25.   An unstable disease; from one hour/day/week or month to the next

26.    A potentially progressive or fatal disease (Hyde 2007, [Online]) (Hooper et al. 2001, [Online]) (Cheney 2007, [video recording]) (Ramsay 1986, [Online])

Myalgic Encephalomyelitis affects every cell in the body. For more information see the General articles and research overviews section. See also articles by: Dr. Elizabeth Dowsett and Byron Hyde MD.

 

 

Are there any tests which can be used to confirm a suspected M.E. diagnosis?

Yes. Whilst there is as yet no single, definitive laboratory test for M.E., there are a specific series of tests which enable a M.E. diagnosis to be confirmed. Virtually every M.E. patient will also have various abnormalities visible on physical exam.

 

As M.E. expert Dr Byron Hyde MD explains: ‘The one essential characteristic of M.E. is acquired CNS dysfunction, [not] chronic fatigue. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological CNS changes: SPECT, xenon SPECT, PET, and neuropsychological testing.’ Thus it is these tests which are therefore most critical in the diagnosis of M.E., although various other types of tests are also useful. Some of the series of tests which can (in combination) help to confirm a M.E. diagnosis include:

*       SPECT and xenon SPECT scans of the brain

*       MRI and PET scans of the brain

*       EEG brain maps and QEEG brain maps

*       Neurological examination and the Romberg or tandem Romberg test

*       Various tests of the immune system (eg. natural killer cells)

*       Insulin levels and glucose tolerance tests

*       Erythrocyte sedimentation rate (ESR)

*       24 hour Holter monitor

*       Tilt table examination, exercise testing and chemical stress tests

*       Physical exam

While various ‘fatiguing conditions’ with a variety of different aetiology’s may be made up of vague and mild ‘everyday’ type symptoms, have no physical signs and no tests which can aid diagnosis, this is not the case with M.E. M.E. is a distinct neurological illness with a distinct list of symptoms, physical signs and diagnostic (and other) tests – it bears no relationship to such unrelated ‘fatiguing conditions.’ As M.E. authors Verillo and Gellman explain: ‘Contrary to popular belief, ME is a distinct, recognisable entity that can be diagnosed relatively early in the course of he disease, providing the physician has some experience with the illness.’ New clinical guidelines titled The Nightingale Definition of M.E.  also make diagnosis easier than ever before; even for those with no experience with the illness. If all tests are normal, then a diagnosis of M.E. cannot be correct.

 

Further recommended reading:

Putting Myalgic Encephalomyelitis research and articles into context Because of the politics and financial interests involved in M.E. research it is vitally important that before you read anything about the illness that you read this paper first and first understand the context in which it was written.

 

For more information about the series of tests which may aid diagnosis see:

 

The following texts provide overviews of what is known medically about M.E.:

Hundreds of individual research abstracts and articles by some of the world’s leading M.E. experts are also available to view on this site.

The following sections are particularly relevant with regard to GET:

Samples of some of the relevant research in these sections are reproduced below.

Hundreds of individual research abstracts and articles by some of the world’s leading M.E. experts and authors are also available to view; search for articles by topic or by author.

See: Myalgic Encephalomyelitis research and articles

This is 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.

 

Essential reading on M.E.:

The book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis Edited by Byron Hyde, M.D. is also vital reading for anyone with a real 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, psychiatry, 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. See the Review of this book for more information and for purchasing details.

General articles

*O* A Rose By Any Other Name by Dr Elizabeth Dowsett

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.

The tools we can use today to study the brain offer possibilities which were unimaginable 50 years ago2.  These include Molecular Biology: for example PCR – a microbiological technique capable of amplifying and identifying minute fragments of viral genes, hidden away in internal organs (such as brain, heart or muscle 3) while a test for rapid diagnosis (within five hours) is currently available.  These tests indicate that viruses from the polio group, or related to it, are involved both in the late effects of ME and the Post Polio Syndrome 4.  Brain Imaging: the use of CT, MRI, SPECT and PET scans clearly indicates that metabolic dysfunction in the brain stem and the spinal nerve radiations which transverse it, are initially associated with viral (inflammatory) damage and are the major cause of the cardinal symptoms of ME – central fatigue, stress induced weakness, autonomic nervous dysfunction and the breakdown of homoeostasis over hormonal and other vital functions5.


*O* The Late Effects Of M.E. - Can they be distinguished from the Post-Polio Syndrome? by Dr Elizabeth Dowsett

"The number likely to be affected by the post-polio syndrome has been calculated as between 200-270/100,000 currently[7], but no account has been taken of survivors from non-paralytic polio which could easily double that figure. Possible costing for ME support has been based on 3 times the cost of maintenance for multiple sclerosis on the supposition that ME is 3 times as common[4]. The only costs that we can be sure of are those derived from the failure of appropriate management, and of inappropriate assessments which waste vast sums of money and medical time while allowing patients to deteriorate unnecessarily.[16]
Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously![11,12,13]"


*O* Redefinitions of ME - a 20th Century Phenomenon by 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!"


*O* Research into ME - 1988-1998 Too much PHILOSPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett

WHAT IS RESEARCH? It is simply an attempt to discover the truth.  However, even in 1999, this search may still concentrate on  one of 2 alternate pathways:

a) The METAPHYSICAL (or philosophical) route which seeks to establish truth purely by reason and argument. b) The PHYSICAL (or scientific) path which sets out to determine facts by systematic investigation of material events and by experiment.

The metaphysical approach bears much the same relationship to the scientific as ASTROLOGY (which involves the influence of the stars on human affairs) does to ASTROPHYSICS (which determines the chemical and physical composition of astral bodies).

...1988 The metaphysical approach ousts science once again.  Although research funding  for the study of ME is minimal in the UK, the major sources (totalling some £5 million in recent years) are non governmental agencies such as the Pharmaceutical and other industries.  The major beneficiaries are, without doubt, members of the psychiatric profession who have exhumed ancient terms such as “hysteria” and invented new ones such as “somatisation” to explain that patients suffering from ME perpetuate their own illness.  Previously reputable medical journals concur with this strange philosophy(11.)

A new definition for ME.  Following successful immunisation against poliomyelitis in the early 1960s and the removal of 3 strains of polio virus from general circulation in the countries  concerned, the related non polio entero viruses rapidly filled the vacancy.  By 1961, the prevalence of diseases (such as viral meningitis) caused by these agents soared to new heights.  In the mid 1980’s, the incidence of ME 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”(10.) (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.  Whether in its original form or in the 4 redefinitions which have followed,  most research workers, led by the Americans are now calling for an urgent change (omitting “fatigue”) so that like can be compared with like in international ME research.


Brain problems in ME – is there a simple explanation? by Dr Elizabeth Dowsett

"A good memory demands normal functioning of almost all areas of the cerebral cortex, the basal nerve centres of the mid brain (eg the thalamus and hippocampus) and their interconnecting pathways through the brain stem. Fluctuations of metabolic activity in these areas (often made worse by physical and mental exhaustion) have been reported in SPECT scans of patients with ME,(2) the vast majority of whom complain of difficulty with short-term memory."


*O*O* 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

‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality. The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine. It is my opinion that 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.’

*HIGHLY RECOMMENDED*


*O*  The Complexities of Diagnosis by Byron Hyde MD

(Taken from: Handbook of Chronic Fatigue Syndrome by Leonard A. Jason, Patricia A. Fennell and Renée R. Taylor)

The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state as described in four definitions starting with that published by Dr. Gary Holmes of the CDC and others in 1988 (Holmes, Kaplan, Gantz, et al., 1988; Holmes, Kaplan, Schonberger, et .al., 1988). The definition created by Lloyd, Hickie, Boughton, Spencer, and Wakefield (1990) is also widely used in Australia. There are two subsequent definitions. The Oxford definition of 1991 (Sharpe et al., 1991) and the 1994 NIH/CDC definitions (Fukuda et al., 1994) are basically, with a few modifications, copies of the first definition. Where the one essential characteristic of ME is acquired CNS dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of these four CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable.

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, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say, "You have CFS and nothing can be done about it."

[On the differences between ME and CFS]


*O* Are Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Synonymous Terms? by Byron Hyde MD

Abstract: At the 1998 M.E. /CFS conference in Australia, both Myalgic Encephalomyelitis and Chronic Fatigue Syndrome were used to describe a chronic illness. This paper is a discussion on the similarities and differences in these two terms that may lead to scientific difficulties. The author suggests that the definitional criteria and epidemic history of Myalgic Encephalomyelitis (M.E.) and the inclusion criteria are significantly different from the CDC definitions and history. The three typical phases of M.E. are discussed. A brief review of some of the known deaths in phase 2 of M.E. are also mentioned.


*O* Three Babuska Clusters of Enteroviral-Associated Myalgic Encephalomyelitis by Byron Hyde MD

Although physicians associated with Nightingale have been studying both M.E. and CFS patients since 1984, it was only in 1995 that we began to include in the investigation of each new Nightingale M.E. patient, an evaluation by PCR for chronic persisting enteroviral infection. The material employed was frozen blood serum that was evaluated by the research team of the viral laboratory of Ruchill Hospital in Glasgow. These patients were re-evaluated approximately once or twice a year for a period of three years. Blood serum from control patients of similar age and sex were submitted with serum from M.E. patients. Blood from other patients with various autoimmune diseases or neurological illnesses were also submitted along with our samples. The names were changed in repeat samples. The serum received at Ruchill Hospital was divided into reserves and two blinded samples of this serum were investigated by PCR in different laboratories. Only when each sample source was found to be positive for the same enteroviral code was the serum accepted as having a specific circulating enterovirus.


*O* What is ME? What is CFS? Information for Clinicians & Lawyers  by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, 2001

Lawyers may wish to consider if a small group of exceptionally influential doctors should be allowed to determine public policy without there being some external moderation. They may wish to consider why disease definition has become socially constructed, resulting in political tensions between sufferers, medical science and the modern State, a consequence of which is the intentional construction of "mental illness" by some groups of medical professionals resulting in stigma caused by the on-going denial. (172)
If clinicians and lawyers are unaware of this background and accept the readily proffered psychiatric explanations as if objective and based on sound scientific research, they will be unable to support their patients / clients with ME / ICD-CFS and will risk failing in their professional duty in this difficult area.


*O* The Montague/Hooper Paper by Sally Montague and Professor Malcolm Hooper, 2001

Full title: CONCERNS ABOUT THE FORTHCOMING UK CHIEF MEDICAL OFFICER’S REPORT ON MYALGIC ENCEPHALOMYELITIS (ME) AND CHRONIC FATIGUE SYNDROME (CFS), NOTABLY THE INTENTION TO ADVISE CLINICIANS THAT ONLY LIMITED INVESTIGATIONS ARE NECESSARY

We are unable to agree with advice to clinicians that only limited investigations are necessary or appropriate for ME/CFS sufferers and believe that such a view is medically and scientifically untenable; hence we believe there is a legitimate case for making this known in advance of the Report being issued. In our opinion, it is entirely unacceptable to advise clinicians that investigations on ME/CFS patients should be limited to a minimal basic routine screen, especially as basic screening is known to be often normal in ME/CFS.

In our opinion, when taken in consideration of all that is already known about the biomarkers of ME/CFS, the evidence of serious pathology presented at Seattle emphasises the unacceptability of advising that such pathology should not be fully investigated. It also underlines the fallaciousness of advising that such substantial pathology can be satisfactorily treated by cognitive behavioural therapy or graded exercise; thus we believe it is imperative for people to be aware that the most influential members of the CMO’s Working Group are apparently still determined to proceed along such avenues despite all the evidence which has been put before them.

[Includes a summary of much of the medical research into ME/ICD-CFS]


CONCEPTS OF ACCOUNTABILITY? by Professor Malcolm Hooper and The Hooper Team, 2001

This present document should be read in conjunction with the amended original Montague / Hooper paper

Montague and Hooper believe that by seeking to equate one specific syndrome or subgroup with another syndrome or subgroup which does not have the same features, the CMO’s Working Group may be doing a grave disservice to both patients and medical science: they believe it is scientifically unacceptable that one name should refer to two different case definitions, each of which having different symptom profiles.  Montague and Hooper are concerned at the repeated refusal by the CMO’s Key Group to acknowledge the clinical difference between ME and other forms of CFS, a difference which many believe has important implications for management and treatment outcomes, as well as for service provision.

[A solid overview of the medical and political facts surrounding M.E. and CFS in the UK.]


*O* Myalgic Encephalomyelitis (ME): a review with emphasis on key findings in biomedical research by Professor Hooper 2006, printed in the BMJ

‘Undoubtedly the perverse use of chronic fatigue syndrome, to impose a psychiatric definition for ME/CFS 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, following the Minister of Health’s assurances, the WHO definition is now accepted and used in all official documentations. The excellent work on the biological aspects of ME, already carried out by several leading research groups, now requires significant funding.’

J. Clin. Pathol. published online 25 Aug 2006; doi:10.1136/jcp.2006.042408 Available: http://jcp.bmjjournals.com/cgi/content/abstract/jcp.2006.042408v1


Full title: A CONSIDERATION OF THE ROLE OF PROFESSOR SIMON WESSELY AND OTHER MEMBERS OF THE “WESSELY SCHOOL” IN THE PERCEPTION OF MYALGIC ENCEPHALOMYELITIS (ME) IN THE UK

To the detriment of the sick, the deciding factor governing policies on medical research and on the management and treatment of patients is increasingly determined not by medical need but by economic considerations. Evidence is presented in this document to show that:

In the UK, patients with myalgic encephalomyelitis (ME, also known as Chronic Fatigue Syndrome or CFS), particularly children, have suffered gross and barbaric abuse and persistent denigration as a consequence of the beliefs of certain psychiatrists who are attempting to control the national agenda for this complex and severe neuro-immunological disorder. These psychiatrists are shown to be clearly in breach of the first tenet of medicine --- first do no harm--- in that by their words and deeds they have wreaked havoc in the lives of ME/ICD-CFS patients and their families by their arrogant pursuit of a psychiatric construct of the disorder which ignores the abundant clinical and scientific evidence (widely presented in the international medical and scientific literature) of the organic nature of ME/ICD-CFS

There have been persistent and frequently covert attempts by these psychiatrists to subvert the international classification of this disorder, with destructive consequences for those affected. 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

Influenced by these psychiatrists, Government bodies such as the Medical Research Council 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

This coterie of psychiatrists has proven affiliations with corporate industry and has insidiously infiltrated all the major institutions, directing funding for research into an exclusively psychiatric model of the disorder, focusing on “management strategies” involving psychiatric techniques, even though such techniques have been shown to be at best of no lasting value and at worst to be harmful to patients with ME/ICD-CFS


Ignoring the Evidence by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, 2003
 
A response to the final version of the MRC 'CFS/ME' Research Advisory Group Strategy

Having read the report, we conclude that it is like the proverbial curate’s egg:  “good in parts”.  However, in terms of demonstrating an understanding of ME/ICD-CFS and a grasp of the issues (and thus of providing hope of real progress to those whose life is blighted by it), the bad parts seem to outweigh the good: essentially the report is, as widely predicted, simply “more of the same” from a Government agency which is under the nominal political control of the Labour Science Minister Lord (David) Sainsbury (whose Linbury Trust has for so long financially supported those UK psychiatrists of the “Wessely School” who claim that ME does not exist and that “CFS” is a mental disorder which must be managed by cognitive behavioural therapy and graded exercise).


*O* The Terminology of ME & CFS by Professor Malcolm Hooper (undated)

Despite the claims of some psychiatrists, it is not true that there is no evidence of inflammation of the brain and spinal cord in ME; there is, but these psychiatrists ignore or deny that evidence.  It is true that there is no evidence of inflammation of the brain or spinal cord in states of chronic fatigue or "tiredness". 

It is also true that neither the 1991 (Oxford) criteria nor the 1994 (CDC) criteria select those with ME, as they both expressly include those with somatisation disorders and they expressly exclude those with any physical signs of disease (as is the case in ME), so by definition, patients with signs of neurological disease have been excluded from study. 

It is also true that Professor Simon Wessely and his colleagues use the terms "fatigue", "chronic fatigue", "the chronic fatigue syndrome (CFS)" and "myalgic encephalomyelitis (ME)" as synonymous.  Such obfuscation has greatly hindered research.


*O* Engaging with M.E.by Professor Malcolm Hooper
 
This is a fully referenced 85 page document which contains colour photographs. It is dedicated to Derek Peters of the Northern Ireland Campaign for ME/CFS Healthcare (who sponsored the publication), to the late Dr John Richardson (a compassionate clinician and champion of more than 4000 ME sufferers for over 50 years) and to “all who suffer with and care for people with ME, who have taught me so much about courage, endurance and being fully human”.

In his customary robust form, Hooper deals with facts, not beliefs or speculation and those facts are soundly based on biochemistry, which those who promote a primary psychiatric pathoaetiology will find difficult to refute with any degree of credibility.

Hooper is explicit: in addition to his scientific investigations of sufferers (which he details in the text), he writes that he has examined much of the ME literature and is “fully persuaded of the organic nature of this illness and the folly and cruelty of attempting to regard it otherwise”.

He explains how he came to be involved with ME and overlapping conditions, and how he discovered “new and disturbing areas of suffering, abandonment by conventional medicine, and heroic persistence in mutual support and the search for understanding, diagnosis, treatment and hope for the future”. (Taken from the 25% Group website)


Dr Paul Cheney on cardiac issues and M.E. and the related Peckerman et al. study.

CFS 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 CFS itself."


*O* Worldwide Epidemic/Over 1 Million in U.S. Atypical Polio, Myalgic Encephalomyelitis, Gulf War Syndrome Vaccines and Toxic Chemicals Government Agencies Obscuring the Evidence

We are here today, because a widespread epidemic of Myalgic Encephalomyelitis has descended upon this country. In less than twenty years time there are now over 1 million victims in the US alone and millions more worldwide. We are here because the national health agencies have not addressed this danger to the public health nor sought to find the cause or remedies for the suffering.

We are here to inform the public that the national health agency policies are subjecting patients to a systematic denial of medical services and are maintaining doctors all across this country ignorant about this disease. These health agency policies have ensured that the cause of this disease is not discovered. These policies impact the health of thousands already disabled by ME and continue to place everyone at risk.

A principal issue must not be overlooked: Why has ME, which has an historical relationship to Polio, exploded into a worldwide epidemic, and what is the inordinate fear of the DHHS to recognize this and discover its cause?


*O* A Public Statement to Government Health Ministers and an ALERT to citizens worldwide

Just twenty years ago an Epidemic of the infectious neurologic disease Atypical Polio began to skyrocket like never before and the Government agencies have been covering it up ever since. Thousands have died and millions are now disabled.


*O* ME and CFS, The Definitions

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


A Landmark in ME History

A New Clinical Entity ? THE LANCET. LONDON : SATURDAY, MAY 26, 1956


The Neurology of ME

Neurological Dysfunction in Chronic Fatigue Syndrome. Abhijit Chaudhuri, DM, MD, MRCP; Peter 0. Behan, DSc, MD, FACP, FRCP Journal of Chronic Fatigue Syndrome, Vol. 6, No. 3/4, 2000, pp. 51-68


How Serious is ME

The complete answer to this question is clearly important and not yet fully established. However the families of patients that have succumb to this disease may hold a different opinion. These few brief reports on this page will help demonstrate the diverse course and consequence of infection with Myalgic Encephalomyelitis. ME has a variety of manifestations and outcomes, some patients improve but many more follow a chronic trajectory. Lifelong disability is common.

The full range of symptoms and consequences of ME are too numerous to fully discuss here, however the most dangerous can be described as related to three factors. Infection of the brain, Metabolic changes and Immune dysfunction.

[Contains research]


Sophisted Investigation by Cesar Quintero

Much reported controversy surrounds the public health agencies and their handling of investigation into the disease Myalgic Encephalomyelitis.   Surely the most advanced nations with legions of medical scientists would be motivated to meet the challenge and discover the cause of an epidemic striking down its citizens, which leaves large numbers permanently disabled.  Yet the response of the public health agencies has caused particular skepticism.  This has raised many questions.

 Now this question may sound very odd, but consider: How would you Disguise a Disease ?

I doubt there could be too many ways . . . But if that were your intent, Let's see, where would you start --

Camouflage! First declare it is a New illness. (Brilliant!) Declare that there is no epidemic! (Tremendous) Spread the word it is not serious. (Spectacular!!!) Create a smokescreen by using a vague definition so that you can mix in many non-cases, and thus claim it is very hard to identify; then

Cover your tracks! Give the Disguised Disease a variety of New names. (Yes, a trivial absurd name, splendid!) Disassociate it from its previous established name, research, case studies, descriptions and diagnostic ICD classification. (Fantastic) Lets see what else could we do to disguise a disease

Create Confusion! We could tell Drs that this disease is "mysterious" and that there is no need to investigate, "Don't do any testing" (you won't find anything) Its a Mystery.


A Million Stories Untold - on this site.


Fatigue Schmatigue - on this site.


Smoke and Mirrors - on this site.


What is ME? - on this site.


M.E: The Medical Facts - on this site.


The Ultra-comprehensive ME Symptom List. - on this site.


3 Part ME Ability and Severity Scale - on this site.


A Summary of the Research suitable for doctors and patients from the Clinical Working Case Definition of 'ME/CFS'.


Advances in the biomedical investigation of ME from MERGE


Severely Overlooked by Science — An Overview of Research on Severely-ill People with ME

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Exciting book news!

Click here to purchase the first HFME book!


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