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.

On so-called 'fatigue' in M.E..

General M.E. Quotes

Quotes by M.E. sufferers

Quotes from M.E. political discussion groups

On so-called 'fatigue' in M.E...

On the supposed role of 'stress' in M.E...

Quotes on the outbreaks (and infectious nature) of M.E.

Quotes from M.E. sufferers on the negative effects of CBT and GET

M.E. vs MS quotes

Quotes on 'Are we just marking time?'

Quotes on the problems with the so-called "Fair name" campaign

Quotes on the problems with the use of 'ME/CFS' by M.E. advocates

Quotes on the topic of 'Who benefits from 'CFS' and 'ME/CFS'?'


Before reading these quotes, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research (and articles) 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/articles as ‘only relating to ‘CFS’ patients’ (including those which describe 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/articles 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/advocacy.

Note that the inclusion of a quote on this site does not necessarily denote support for all parts of the article it was taken from, or support for the terminology used in this article, nor total support for all articles created by this author.

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. and that M.E. activism also focuses entirely on M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research and articles 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. For more information see A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and the more detailed paper Putting Research and Articles on Myalgic Encephalomyelitis into Context.

On so-called 'fatigue' in M.E..

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.

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

 

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

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

 

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

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

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

 

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

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

 

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

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

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

 

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

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

 

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."

Verillo and Gellman in 'CFS: A Treatment Guide' p 77

 

Over the course of two International Association of Chronic Fatigue Syndrome (IACFS, formerly the American Association of CFS) conferences, there have been suggestions that the name CFS be changed to M.E., while retaining the CFS definitions as a basis for such change. This does not seem to me to be a useful initiative: it would simply add credence to the mistaken assumption that M.E. and CFS represent the same disease processes. They do not.

M.E. is a clearly defined disease process. CFS by definition has always been a syndrome.

At one of the meetings held to determine the 1994 U.S. Centers for Disease Control and Prevention (CDC) definition of CFS, in response to my question from the floor, Dr. Keiji Fukuda stated that numerous M.E. epidemics—he cited the Los Angeles County Hospital epidemic of 1934, the Akureyri outbreak of 1947-48 and the 1955-58 Royal Free Hospitals epidemics-- were definitely not CFS epidemics. Dr. Fukuda was correct.

The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr Byron Hyde 2006

 

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. The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state. Patients who conform to any of these CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable.

The Complexities of Diagnosis  by Byron Hyde MD 2003

 

Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would have told the students to search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. Patients are now being diagnosed with CFS as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything.

The Complexities of Diagnosis by Byron Hyde MD 2003

 

The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine.

Dr Byron Hyde 2006

 

Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance.

Dr Byron Hyde 2006

 

The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.

The Complexities of Diagnosis  by Byron Hyde MD 2003

 

They didn’t understand that I wasn’t simply tired. I tried to explain the ‘fatigue’ to them as the ‘anaesthesia wave,’ likening it to that moment right before surgery when you realise you’re about to lose consciousness. I thought that might help them understand its severity, and my inability to ‘fight if off.’

Nadine Goranson in ‘Stricken’ (edited by Peggy Munson). p 59

 

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.’

Peggy Munson in ‘Stricken’ (edited by Peggy Munson). p 114

 

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.

Lynn Michell in ‘Shattered: Life with ME’ p xxii

 

[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.

Lynn Michell in ‘Shattered: Life with ME’ p 6

 

The M.E. Society of America write:

M.E. is not a fatigue state, and fatigue is not a defining symptom of M.E.

The defining characteristics of M.E. can be easily outlined without reference to "fatigue." Fatigue may be a minor symptom of M.E. [in some patients] just as vomiting or numbness may be symptoms of M.E., but fatigue cannot be a defining characteristic because not all patients have it, just as not all patients have vomiting or numbness [and because the symptom is minor or trivial compared to many others M.E. patients experience

 

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.

Lynn Michell in ‘Shattered: Life with ME’ p 28

 

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.

Lynn Michell in ‘Shattered: Life with ME’ p 88

 

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.

Sick, Not Tired by Ciara MacLaverty

 

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.

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

 

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.

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

 

There is no necessary connection between a need for rest and tiredness: Rest might equally well serve to curb the exacerbation of pain and, of exertion-induced complications.

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

 

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. Because of many doctors’ determined lack of understanding, suicide in M.E. patients is not uncommon.

Martin J Walker in ‘Skewed’ p xxiv

 

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.

Martin J Walker in ‘Skewed’ p 156

 

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.

A Rose By Any Other Name 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).

The Late Effects of ME 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!

Redefinitions of ME - a 20th Century Phenomenon by Dr Elizabeth Dowsett

 


With the rapid development of technology and access to international publication, the UK retained its reputation as a leading centre of ME 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 sufferers by USA scientists?

Redefinitions of ME - a 20th Century Phenomenon by Dr Elizabeth Dowsett



The exclusion or downgrading of many characteristic ME 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 by some 250 times.  Major mistakes in these definitions include: (i)  overlooking the distinguishing encephalitic features of ME (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 symptoms.


Redefinitions of ME - a 20th Century Phenomenon by Dr Elizabeth Dowsett

 


To suggest that ME is merely one subgroup amongst this heterogenous collection of physiological and pathological states, makes thus making any attempt at differential diagnosis between them impossibly expensive to pursue.   (iv) to suggest that diagnosis must be delayed for 6 months, vitiates any real attempt at virus investigation, especially among the young. 


Redefinitions of ME - a 20th Century Phenomenon 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.

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

 



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.

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

 



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

Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! 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"

Differences between ME & CFS 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.

Mobility problems in ME 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.

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

 

 

[ME] 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 [ME] itself."

Now, do [ME] 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 ME 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 ME 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 [ME] from FM? Post-exertional  [symptom exacerbation].. Patients who have FM, but not [ME], 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 ME.] They do have other issues that overlap with [ME but] Q is what separates them. [ME] 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 Heart of the Matter: Dr Paul Cheney

 

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

The Complexities of Diagnosis by Byron Hyde MD

 

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.

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

 

 

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."

Hillary Johnson in ‘Osler’s Web’ p 34

 

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.

Hillary Johnson in ‘Osler’s Web’ p 219

 

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.

Hillary Johnson in ‘Osler’s Web’ p 438

 

Fatigue is a totally indefinable concept. Fatigue is impossible to measure or quantify. Fatigue is so non-specific that it can be a common element in any acute or chronic disease and many psychiatric diseases. Worse, it redirects the medical and public attention away from the obvious Central Nervous System changes in these patients. Much worse, it makes fun of a serious illness. It has turned out to be a damning indictment to all M.E. patients.

Dr Byron Hyde 2006

 

In all M.E. epidemic or endemic patients the patients represent acute onset illnesses. The fatigue criteria listed here can be found in hundreds of chronic illnesses and clearly defines nothing.

Dr Byron Hyde 2006

 

There is nothing in your experience of medical school, residency, or practice with its gruelling hours and sleep deprivation that even approaches [what] you feel with this illness. Fatigue is the most pathetically inadequate term.

ME sufferer Thomas English in ‘Osler’s Web’ by Hillary Johnson p 461

 

‘The patients are not chronically fatigued.’

Byron Hyde MD (on M.E. patients)

 

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

 

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

 

As Professor Malcolm Hooper explains

A political decision was taken to rename ME as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to ME: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored… To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to Government Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support. (2001, [Online])

 

'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 [ME]. 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 [ME]. The central and most disabling symptom of [ME] is NOT fatigue.'

Dr David Bell MD

 

Looking through the various CFS criteria, I was struck by the fact  that yes, they do all require constant/ 'debilitating' fatigue - but they don't really describe what this fatigue feels like or involves.  Sensations such as headaches, nausea, dizziness, muscular aches, phono- and photo-sensitivity, lack of ability to concentrate etc are listed as separate symptoms.  Apart from the fact that I don't see how they can say that the 'fatigue' is debilitating - surely whatever sensations that describes are more likely to be another symptom of the entire debilitation than a cause of it - the very fact that one of the criteria's crucial symptoms is so subject to interpretation is probably the cause of our current problem!

Virginia B, ME sufferer

 

me is nothing oike fatigue, word only cauuses confuson. Wish only hd fatigue:(

Severe M.E. sufferer


When I first found out what I had, I knew somebody was trying to hide something -- chronic fatigue my ass!

Terry Sweet, M.E. sufferer

 

"I think it is the obsession with fatigue that allows doctors and the general public to minimise the debilitation and our inability to exercise or snap out of it.  [...] Anyway, I guess my point is that if you minimise the illness as merely fatigue then many people (including the doctors)  will see it as something you can push through.  After all we live in a society that doesn't respect listening to you body and resting when you need it - so a whole illness that encourages that behaviour has got to be just laziness.  The protestant work ethic is alive and well and does not believe ME is anything but mental weakness."

Tatyana, M.E. sufferer

 

No one fears fatigue.

Jill McLaughlin (on Resact)

 

i feel sick,foggy, achy, weak, dizzy, jangly but not yummy old fatigue: like you get when you have walked to the beach, or dug a garden bed, or shopped til you dropped.

Barbara LR. M.E. sufferer

 

Advertising fatigue or studying it or analyzing it by fatigue scales or holding fatigue conferences or setting up fatigue clinics is not going to help those with underlying neurological illnesses.

Jill McLaughlin (on Resact)

 

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.

Cesar Quintero

 

I miss fatigue. I miss feeling tired. I am never tired anymore with M.E. just very ill. It’s true I can’t do anything, but this is because I am ill and my heart and body don’t work properly, not because I am tired at all. I miss real fatigue. It is a joke the linking of ME and fatigue....  now everyone tired thinks they have it when M.E. in reality has nothing to do with fatigue whatsoever and all those tired people are missing out on being diagnosed with what they really have.

M.E. sufferer

 

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.

Hillary Johnson in Osler's Web

 

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.

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

 

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.

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

 

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.

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

 

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’]

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

 

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

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

 

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.

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

 

I too am hopeful that this illness will be treated with respect and recognized for the devastating handicap that it is... CHRONIC FATIGUE????? I don't think so!

Barbara Gilliam, M.E. sufferer

 

"The term[s] 'fatigue' and 'chronic fatigue' never existed in this entity until it was put into [the name] in 1988.The whole concept of fatigue has warped our understanding of this illness." 

Byron Hyde, M.D.

 

"Patients are united in their dislike of the term 'fatigue'."

Thomas Hennessy, Jr., RESCIND, Inc.

 

The word fatigue is so harmful not just to M.E. sufferers but also to all those people who really do have fatigue and who read the descriptions of ME and think ‘that’s what I have’ when in reality, they don’t have the main features of true ME at all.

Fatigue doesn’t describe the main feature of M.E., it never has and it never will. If your worst symptom is fatigue you have a different illness.

M.E. sufferer

 

Dr David Bell M.D., who specialises in treating ME patients (and has also written several books on the subject), 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. 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)

 

Lynn Michell summarises what the ME patients she interviewed for her recent book, said about the illness: (note the last sentence)

Most descriptions of ME miss the essence of it and fall short of capturing its reality. Part of the problem is the word ‘fatigue.’ It is both a red herring band a hopelessly inadequate description of how people feel. ME sufferers are not tired in a floppy, nice-to-have-a-nap kind of way, such as after the flu when bed feels good and snuggling under the covers for a few days brings a gradual return to well-being.

It is as if someone has frayed the ends of every nerve in the body and left them raw and exposed. It brings an overwhelming need to close down sensory input and, for many, to retreat from everyday ordinary stressors - conversation, noise, light, movement, TV - since they are agonising to deal with. Everyone said that they were not fatigued. (2003, p.24)

 

The prominent association of fatigue with psychiatric disorders has greatly contributed to the erroneous psychological attributions of the illness, much to the detriment of patients. This has led to the trivialization of the illness as little more than a manageable, unexplained fatigue state and the misperception that it may be treatable by little more than counselling, OTC medications, antidepressants and lifestyle changes.

Jill McLaughlin on M.E.

 

 It is the use of increasingly wider, less specific criteria and the focus on fatigue has created much confusion and misunderstanding during the past decade.

Jill McLaughlin

 

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.

The Committee for Justice and Recognition of Myalgic Encephalomyelitis

 

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.

The Committee for Justice and Recognition of Myalgic Encephalomyelitis

 

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.

The Committee for Justice and Recognition of Myalgic Encephalomyelitis

 

“This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization.” 

Laura Hillenbrand, Bestselling author of Seabiscuit

 

 

Definition of 'fatigue'

Fatigue: Physical or mental weariness resulting from exertion (American heritage dictionary, 2000). A feeling of excessive tiredness or lethargy, with a desire to rest, perhaps to sleep. Often it causes yawning (Wikipedia, 2001[Online]).

 

M.E. Is Not Fatigue (From the M.E. society of America)

1. M.E. is not a fatigue state, and fatigue is not a defining symptom of M.E. We do not support use of the word "fatigue" either to name this illness or to describe this illness. Patients and patient groups who want to "change the name" must first take responsibility accurately to describe the symptomatology. This is a disease wherein extending beyond a certain threshold of activity leads to symptoms, which can be described in specific, accurate terminology without reference to broad or demeaning terminology such as "fatigue" or "poor stamina."

M.E. is a disease, and patients are sick, with often excruciating symptoms that can be clearly articulated. The defining characteristic of M.E. is that patients relapse with physical exertion and develop disease progression with continued physical exertion. Hence, the defining characteristic is exercise intolerance, post-exertional muscle weakness, generalized weakness, faintness, and pain; and post-exertional relapsing of symptoms.

The symptoms of the disease are exacerbated by physical exertion, mental exertion, mental stress, or orthostatic stress. In severe cases, even slight orthostatic stress triggers relapses. Symptoms may range from mild, to severe, to life-threatening (such as tachyarrythmias or siezures). The level of activity that precipitates these symptoms may vary greatly in afflicted individuals, and the symptoms that relapse may vary.


For more information on so-called 'fatigue' in M.E. see: ‘What is Myalgic Encephalomyelitis?’

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The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

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