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. is not defined by 'fatigue'

From: What is Myalgic Encephalomyelitis?  (on this site)

Myalgic Encephalomyelitis has nothing to do with ‘fatigue’

If you are tired all the time, you do not have ME. The terms ‘fatigue’ and ‘chronic fatigue’ were not associated with this illness at all until the name Chronic Fatigue Syndrome was coined in 1988 (this despite the fact the illness had already been legitimately named Myalgic Encephalomyelitis in 1956) (Hyde 2005, [online]). The ‘f’ word was selected in 1988 entirely for what it could achieve politically: it was never intended to be a genuine medical description of the symptomatology of the illness. In reality having M.E. is like having parts of Multiple Sclerosis, AIDS, Alzheimers, Arthritis and Epilepsy all mixed together at once, with some extra horrific symptoms thrown in that are entirely its own.

M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system – not a problem of ‘chronic fatigue.’

Fatigue is a symptom common to hundreds of diseases and to normal life, but is not a distinguishing feature of Myalgic Encephalomyelitis.

 

What is chronic fatigue, and what is Myalgic Encephalomyelitis?

Chronic fatigue is a symptom of many different illnesses and has a large number of different and unrelated causes. People with chronic fatigue may be fatigued because of vitamin deficiency, sleep disorder, depression, cancer, burn-out, Multiple Sclerosis, and a large number of other psychiatric and miscellaneous non-psychiatric illnesses. Up to 20% of the population may suffer from some form of chronic fatigue.

Myalgic Encephalomyelitis in contrast is not merely a symptom but is instead an illness which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder.

Myalgic encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by 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) which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis. M.E. is primarily neurological, but symptoms may also be manifested by cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. More than 64 distinct symptoms have been authentically documented in M.E., several of which are unique to the illness. M.E. is not defined by fatigue thus the presence or absence of fatigue is largely irrelevant in determining a M.E. diagnosis. M.E. can occur in both epidemic and sporadic forms and over 60 outbreaks of the illness have been recorded worldwide since 1934. M.E. can be extremely disabling and in some cases the illness is fatal. (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Dowsett 2001, 2000, 1999.b, b [Online]) Less than 1% of the population has Myalgic Encephalomyelitis.

 

The symptom of chronic fatigue and the distinct neurological illness M.E. each have a very different; cause, symptoms, aetiology, pathology (tests results), response to treatment, long and short term prognosis – and World Health Organization classification. Clearly it is a stretch of credibility to say that people with the symptom of chronic fatigue and those with M.E. share any real similarities – let alone that they could somehow represent the exact same patient group and be able to be studied interchangeably.

(Note too that each of the core features of M.E. (unlike ‘fatigue’ which is unmeasurable) may be clearly measured and verified using a series of objective tests, see: What is M.E.? for more information.)

It’s not only that M.E. is ‘more than just fatigue’ as you hear so often, the real issue that we all seem to have missed entirely – is that it’s not fatigue at all.

 

"…the primary symptom is severe fatigue…"

The defining feature of M.E. is not fatigue (or tiredness or a lack of 'energy' or 'stamina'). M.E. is characterised primarily by damage to the central nervous system (the brain) which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis. The ‘f’ word was selected entirely for what it could achieve politically: it was never intended to be a genuine medical description of the symptomatology of this illness.


 Testing for Myalgic Encephalomyelitis By Jodi Bassett

'When discussing ME diagnosis (and testing) it is important to note that contrary to much of the propaganda surrounding the illness, it is not ‘fatigue’ or ‘tiredness’ that is the one essential characteristic of M.E. but central nervous system (CNS) dysfunction. It is this that must always be present for a legitimate diagnosis of M.E. to be made. The presence or absence of ‘fatigue’ is largely irrelevant in determining a M.E. diagnosis except in that its presence may of course make the diagnosis of a large number of well-known fatigue causing illnesses (depression, vitamin deficiency, multiple sclerosis or malignancy for example) considerably more likely. (Hyde & Jain, 1992)

As leading M.E. expert Dr Byron Hyde 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.’ (2003) 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.'


Byron Hyde MD in The Clinical and Scientific Basis of Myalgic Encephalomyelitis Edited by Byron Hyde, M.D p x, p xi, p 11-12, p18, p 43

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 M.E. nor clarifies the illness. The term ‘fatigue’ does cause disparagement to those who study this serious debilitating illness and those who suffer from it.

'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.'

'(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.'

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

'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'


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

'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.'


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  Dr Byron Hyde MD


CFS: A Treatment Guide by Verillo and Gellman p 77

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

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

Considering the lack of adequate terminology to describe [ME symptomatology], it is incumbent on the [ME] community - clinicians and patients alike-to find new terms and expressions to convey what is meant by "fatigue."'


Stricken: Voices from the Hidden Epidemic of CFIDS edited by Peggy Munson p 114

'The symptoms of [ME] resemble and improbably hypoxic state, so far from normal tiredness, so much more of an all-body impairment, than the word fatigue could ever convey. As Chris Norris wrote in New York Magazine, ‘If this is fatigue, its relationship to workaday weariness is as Satre’s nausea to an upset tummy. I have been tired before. This is not tired.’


Shattered: Life with ME by Lynn Michell  p xxii, p 6, p 28

'At the turn of the millennium, the public still lacks a real grasp on what [ME] patients are dealing with. Because of illusions that [ME] is simply a disease of tired people the public has large been deprived of accurate information.

[Legitimate descriptions of the illness are] a far cry from the hopelessly inadequate description of ME as ‘chronic fatigue.’ The distinction between fatigue and ME needs emphasising. If you are tired all the time, you do not have ME. If you are feeling drained following a viral illness but are recovering over weeks or months, you do not have ME.'

'This is not fatigue. This is a state of overstimulation which results in near or total collapse. One of the things that has been shown over and over again is that biologically [people with ME] have an inability to respond to stressors [or stimulus.] Although ME is sometimes described as a stress-related illness, what stress means in this context is ‘the non-specific response of the body to any demand.’ So, while healthy people cope with the demands which assault their senses, responding appropriately to what is relevant while ignoring what is not, people with ME have lost the ability to manage the sensory input of their environment.'

'A central problem is the word ‘fatigue’ which doesn’t come close to describing how sufferers can feel – comatose might be better. Like most people with ME I have acquaintances who say, ‘Oh I feel tired at 4pm too, and would love a snooze.’ But that’s not it. People with ME are so finished that they have to lie down. There is no other option. Minds and bodies do not function. This is nothing like fatigue.'


Sick, Not Tired by Ciara MacLaverty

'If the medical administrative staff are anything like the students they work for, they will be told little or nothing about Myalgic Encephalomyelitis (ME), the illness that has kept me largely bed-bound for the past 15 years. I’ve lost count of the times medical staff have said to me: "I don’t really know very much about ME. You get tired a lot, don’t you?"

No. I’m 35 and haven’t been "tired" in the conventional sense of the word since I was a teenager. As anyone with severe ME will tell you, it has nothing to do with being tired and everything to do with being physically ill.

On the many occasions I am unable to watch TV or hold a conversation, sit upright or walk more than a few steps, it is not because I am "tired". It is due to the fact that there is some catastrophic, metabolic imbalance within my cells that leaves me feeling poisoned and weak to the point of collapse. Muddying the waters further is the fact (sorely lamented by many sufferers) that ME is sometimes referred to as Chronic Fatigue Syndrome. Trust me, "fatigue" or "tiredness" don’t even register on the scale of how life-shattering an illness this can be. Tiredness is to ME what forgetfulness is to Alzheimer’s disease.'


A Review of OSLER'S WEB: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Maryann Spurgin

Circa 1984, around the time when San Francisco immunologist Jay Levy was investigating the cause of the "gay pneumonia," University of California medical school professor Carol Jessop began seeing women patients who presented a baffling array of signs and symptoms: fever, lymphadenopathy, sore throat, visual and other neurological disturbances, and paralytic muscle weakness. The worsening of these symptoms upon minor physical exertion formed a common denominator in all cases. But when Jessop began subjecting the patients to exhaustive tests to rule out autoimmune and other diseases, male colleagues scoffed, calling the tests "million dollar workups on neurotic women." That derisive attitude set the tone for both medical and media discussions of an enigmatic illness for years to come. The problem was exacerbated by the 1988 Centers for Disease Control case definition -- set in stone in the Annals of Internal Medicine -- when the C.D.C.'s Gary Holmes labeled with the word "fatigue" a crippling disease of probable infectious etiology.

"Chronic Fatigue Syndrome" (C.F.S.) is a name that reveals just how tenuous the connection between words and their referents can be. It is difficult to imagine clinical severity after hearing a name that denotes tiredness.

'Fatigue is not a disease. It is a symptom of many diseases. Since there is no single underlying condition behind fatigue, by equating C.F.S. with unexplained fatigue, federal officials can say that there is no single underlying condition behind C.F.S. While there is nothing unreasonable about the claim that C.F.S. has multiple causes what is unreasonable is the notion that C.F.S. is many unrelated diseases grouped by their shared symptom, fatigue. After excluding patients with the disease by excluding the whole complex of classic symptoms and complications that accompany C.F.S., federal officials went on to include those who don't have the disease via the symptom of fatigue. With the latter they "recognize" the disease without recognizing it: A truly effective system of repression is one that propagates the impression of its openness and fairness.'

'There is no necessary connection between a need for rest and tiredness: Rest might equally well serve to curb the exacerbation of pain and, speaking in more conceptually rigorous terms about C.F.S., of exertion-induced complications.'


Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness in MCS, GWS, ME and CFS by Martin J Walker p xxiv, p 156

'The most striking feature of the illness was an incapacitating post-exercise muscle [weakness or paralysis] recovery from which is delayed for at least 24 hours, which is quite distinct from everyday ‘fatigue.’ All muscles are affected, including the heart. People with M.E. may suffer permanent damage to skeletal or cardiac muscles, as well as to the liver, pancreas, endocrine glands and lymphoid tissues. Because of damage to the hypothalamus, pituitary and adrenal glands there is not only muscle but joint pain. Pain is often extreme and intractable and many patients can walk only very short distances and require a wheelchair.

Sufferers sometimes have sudden attacks of breathlessness, problems with swallowing and voice production. Cycles of severe relapse, together with the evolution of further symptoms over time, are common in M.E. Death occurs almost entirely from end-organ damage, mainly cardiac or pancreatic failure.'

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

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


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 Late Effects of ME by Dr Elizabeth Dowsett
 
'It has to be accepted that some degree of encephalitis has occurred in all these cases and that the areas chiefly affected include the upper spinal motor and sensory nerve roots and the spinal nerve networks traversing the adjacent brain stem a (nerve centre controlling all vital bodily functions which is always damaged).'


 
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!

With the rapid development of technology and access to international publication, the UK retained its reputation as a leading centre of ME/CFS research and remained able to report clinical studies backed up by molecular biology, brain imaging, sophisticated hormonal and other biochemical studies.  At this point, with sound evidence of an infective cause, the way in which such infection is spread and the pathogenisis of the disease, why were we urged to adopt the “fatigue definitions” inflicted upon ME/CFS sufferers by USA scientists?
 
The exclusion or downgrading of many characteristic ME/CFS symptoms led to an unreal emphasis on psychiatric explanations and diminished estimates of the real prevalence.  Attempts to correct this initial “Fatigue” definition in the UK (Sharpe et al 1991) the USA (Fukada et al 1994) and in Australia (Hickie et al 1995) became so inclusive of a heterogeneous population of sufferers from psychiatric and miscellaneous non psychiatric states as to elevate the suggested prevalence of ME/CFS by some 250 times.  Major mistakes in these definitions include: (i)  overlooking the distinguishing encephalitic features of ME CFS (ii) elevating “fatigue” (an inescapable accompaniment of normal human existence and of  cardiovascular, metabolic malignant, psychiatric, neurological and other disabling conditions) to unreal diagnostic importance among ME/CFS symptoms.
 

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

The term “Myalgic encephalomyelitis” (ME) 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.  Sophisticated tests of cognitive function (psychometric tests) were also developed. 

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.

The “Fatigue” definitions still in use, outrageously distort the true prevalence of the illness by up to 100 times 



Differences between ME & CFS by Dr Elizabeth Dowsett
 
"There are actually 30 well documented causes of ‘chronic fatigue’. To say that ME is a ‘subset’ of CFS is just as ridiculous as to say it is a ‘subset’ of diabetes or Japanese B encephalitis or one of the manifestly absurd psychiatric diagnosis, such as, ‘personality disorder’ or ‘somatisation’.

ME 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"
 

 
Mobility problems in ME by Dr Elizabeth Dowsett

ME (Myalgic encephalomyelitis) is a common chronic neurological disablement which affects between 300 and 500,000 individuals of all ages in the UK, most of them in the most socially and economically active population groups. The symptoms of this multi system disease are characterised by post encephalitic damage to the brain stem (1) (which contains major nerve centres controlling bodily homeostais) and through which many spinal nerve tracts connect with higher centres in the brain. Some individuals have, in addition, damage to skeletal and heart muscle.



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

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


Dr Paul Cheney on heart issues
 
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."

Now, do CFIDS patients prefer to stand up or lie down? Of course, they prefer to lie down. Do you know why? "Do you know what your cardiac output does when you stand up? It drops 30%. In all humans, without exception. So very critical to this technology is that it's the only one that could be done upright [again, four positions on the tilt table are best; standing up and laying down at a minimum]. And what they found is absolutely astonishing, truly astonishing. When [disabled CFIDS patients] stand up, [they're] on the edge of organ failure due to low cardiac output."

The NJ team looked to see if there were any symptoms that were 100% observable in the group of disabled cases, but not in the others. They found that there was only one symptom (among the loooong list of CFIDS symptoms) that was seen in 100% of the patients with the Q problem. Only one. Post-exertional [symptom exacerbation]. That is, when you push yourself physically, you get worse.

What distinguishes CFIDS from FM? Post-exertional  [symptom exacerbation].. Patients who have FM, but not CFIDS, can exercise—it helps them. FM patients do not have a Q problem. MCS patients do not have a Q problem. [Unless they also have CFIDS.] They do have other issues that overlap with CFIDS. Martin Pall's conceptual framework allows us to lump these people all together (FM, MCS, GWS, CFIDS). However, Q is what separates them. CFIDS patients have a big Q problem, and post-exertional  [symptom exacerbation]. is the one [thing] that correlates with Q.  

Post-exertional  [symptom exacerbation] is the number one symptom reported by people with ICM. Among the disabled CFS patients [the severe group], 80% had muscle pain, 75% had joint pain, 72% memory & concentration problems, 70% unrefreshing sleep, 62% generalized weakness, 60% headaches, 60% lymph node swelling, 68% fever and chills, and, 50% had sore throat. Though some symptoms were certainly more common among the disabled patients, the symptoms varied—with the exception of post-exertional  [symptom exacerbation]. They all had that.


The Complexities of Diagnosis by Byron Hyde MD

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


 
 
Probably the best descriptive definition of M.E. is found in Ramsay's book mentioned earlieri or in the Doctoral Thesis of Dr. Andrew Wallace,vii a Scottish physician who immigrated to Adelaide, Australia. Wallace's thesis discusses an epidemic in Cumberland in Northern England. It is unfortunate that more M.E. physicians have not read it. This thesis is important since it not only represents one of the best descriptions of the epidemic M.E. disease but also documents deaths associated with this illness. The deaths although few in number are important since not only do they give us a useful pathological insight, they also underline the potential and usually unrecognized severity of M.E. Documented deaths have occurred in several M.E. epidemics, but are best documented in the Cumberland epidemic and were well known in the Akureyri epidemic. All of these deaths involved CNS injury. The Akureyri epidemic involved at least 7 prepubertal children in Friedrikshavn who developed M.E. followed by Parkinson-like illness and died. x Documented deaths in sporadic cases of M.E. are known, but it is my experience that treating physicians often become vitriolic when the deaths are attributed to M.E by the families of the deceased. M.E. and CFS may be the only illnesses in history from which some physicians believe the patient is invulnerable to death.
 

 
Osler's Web by Hillary Johnson p 34, p 219, p 438

'Peterson tried to convey the quality of the pervasive symptom, calling it ‘absolutely striking – like nothing you have ever heard in taking histories before. This isn’t tiredness. This is a carpenter who says, "I can’t raise my arm to hammer," or a marathon runner who says, "I can’t make it to the corner."

The euphemistic, benign sounding name [and more importantly, the focus on ‘fatigue’] suggested a trivial, volitional disability, one that could be shrugged off with vitamins, aerobic exercise, stress reduction, a good night’s sleep or sheer willpower. By casting its victims in the role of shirkers who chose to defy the nation’s Protestant work ethic, the name, in addition, had the subtle effect of inspiring hostility toward the victim. As one psychologist well versed in standardised systems of evaluating the psychological import of words noted, ‘Chronic Fatigue Syndrome has a real negative impact. The word ‘chronic’ is associated with chronic complainers, chronic whiners. And ‘fatigue’ is even worse.

Cheney was not particularly interested in a patient’s level of ‘fatigue.’ He graded the disease instead by its progressive phases which be believed began with a mononucleosis-type illness and an up-regulated or hyperactive immune system. Then over the years it progressed to a neuralgic, MS like illness, with mild to severe dementia and an AIDS-like or down-regulated immune system. Cheney selected his patients based on their neurological signs and symptoms. All of this was a departure from the CDC’s criteria, which essentially looked fro one thing – disabling, unexplained fatigue – and excluded patients who exhibited unambiguous signs of disease.


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

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


The Doctor's Guide to CFS by David S. Bell MD

Dr David Bell  shuns the use of the word fatigue, describing it as:

A very inappropriate term for what patients experience. It's not really fatigue at all, which is defined as a normal recovery state from exertion and that is precisely what does NOT happen in this illness. They may say they're fatigued, but what's really restricting their activity may be pain, tremulousness or weakness - a sense that they are on the verge of collapse. That is not fatigue as we commonly think of it. (1995)
 
'It is the use of the term 'fatigue' that causes the greatest confusion in regard to disability status. Technically, fatigue is a state of recovery, and this does not occur in persons with CFS. Occupational medicine physicians may argue that it is appropriate to work with fatigue, with the assumption that normal fatigue, like normal muscle weakness, will respond to increased activity. While this is appropriate for normal fatigue, it is usually not the case with CFS. The central and most disabling symptom of CFS is NOT fatigue.'

'The name "chronic fatigue syndrome," contributes to the controversy by implying that simple fatigue or tiredness is the central disabling symptom.'


Sophisticated Investigation Cesar Quintero

Paralysis from polio occurred in about 1 percent of those that contracted the polio virus. At the time that polio epidemics were studied many of the herpes viruses had not been discovered, were they there then contributing to these plagues. Do certain herpes viruses have a special relationship with the polio viruses in the same way HIV and HHV6 work together.

We may never know if the government continues to cover up the existence of ME by calling it fatigue and confusing the public and doctors and fostering mythical subgroups. Confusing the understanding of this disease by opening the door for the inclusion of a multitude of unexplained fatigue conditions and somatic syndromes that will choke off the support and investigation of Myalgic Encephalomyelitis.


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

The most apparent features are extreme post-exertional muscle fatiguability [or weakness or paralysis], which is quite distinct from chronic "fatigue" or tiredness, together with recurrent nausea and profound, incapacitating malaise. It is striking how consistent are the symptoms that characterize this condition.

In the US in the late 1970s and 1980s there seemed to be a remarkable rise in incidence of a condition indistinguishable from ME, with manifestations of serious neuro-immune disease and profound incapacity, to the extent that the powerful insurance industry became alarmed. The insurance industry was concerned that, because there is no National Health Service in the US: "the field could change from an epidemiological investigation into a health insurance nightmare". The result was a determination to suppress the true symptomatology and to construct a new case "definition" for which insurers could not reasonably be liable: the condition was henceforth to be called 'chronic fatigue syndrome' or CFS and emphasis was to be on chronic "fatigue" as the primary symptom.

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

The present confusion has been compounded by the fact that the term "CFS" has been included by the WHO in the latest revision of the International Classification of Diseases as one of the terms by which ME has become known. In practice, this has come to mean that when referring to "CFS", some doctors (mostly some UK psychiatrists led by Simon Wessely) are talking about psychiatric illness involving "chronic fatigue", whilst international experts are talking about ICD-CFS, which is synonymous with ME. [Which has nothing to do with mere ‘chronic fatigue’]

It is important to be familiar with the fact that "chronic fatigue" and chronic "fatigue syndromes" do not equate with chronic fatigue syndrome (CFS) or with ME.

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


The Committee for Justice and Recognition of Myalgic Encephalomyelitis

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.

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

In 1991 Sharpe, Archard, Banatvala, Wessely, David, White et al. wrote the Oxford Criteria calling it 'A report - chronic fatigue syndrome: guidelines for research.’ Only consultant neurologist Lane attended the meeting. P. Behan, Professor of Neurology, contributed to it but was unable to attend the meeting and signed it. Seven were psychiatrists or psychologists. Two broad syndromes were defined - Chronic fatigue syndrome and Post-infectious fatigue syndrome (PIFS). Signs: There were no clinical signs characteristic of the condition, but it recommended that patients be fully examined, and the presence or absence of signs reported. Fatigue was defined as being synonymous with tiredness and weariness (that is not organic in origin). A clear description of the relationship of fatigue to activity is preferred to the term fatiguability they said. (Hyde et al. 1992). This makes fatigue a psychiatric condition - a form of avoidance or symptom of depression.


For more information on so-called 'fatigue' in M.E. see:
 

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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:

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