Three Perspectives on Name (3) - EXCERPTS

Why the bogus disease category of 'CFS' must be abandoned

Jodi Bassett, September 2007 http://www.ahummingbirdsguide.com/cfsmustbeabandoned.htm

A brief history of Myalgic Encephalomyelitis up to 1988

The illness we now know as Myalgic Encephalomyelitis is not a new illness. M.E. is thought to have existed for centuries. (Hyde 1998, [Online]) (Dowsett 1999a, [Online])

One of the most fundamental facts about M.E. throughout its history is that it occurs in epidemics. This fact conveys, among other things, the infectious and contagious nature of the disease (Hyde 1998, [Online]). The usual incubation period of the virus infection involved is 4-7 days. There is a history of over sixty recorded outbreaks of the illness going back to 1934 when an epidemic of what seemed at first to be poliomyelitis was reported in Los Angeles. As with many of the other M.E. outbreaks the Los Angeles outbreak occurred during a local polio epidemic.

The presenting illness resembled polio and so for some years the illness was considered to be a variant of polio and classified as 'Atypical poliomyelitis' or 'Non-paralytic polio' (TCJRME 2007, [Online]) (Hyde 1998, [Online]) (Hyde 2006, [Online]). Many early outbreaks of M.E. were also individually named for their locations and so we also have outbreaks known as Tapanui flu in New Zealand, Akureyri or Icelandic disease in Iceland, Royal Free Disease in the UK, and so on. M.E. was also known as 'Atypical multiple sclerosis' at one time, because of the similarities between M.E. and MS (TCJRME 2007, [Online]) (Hyde 1998, [Online]).

A review of early M.E. outbreaks found that clinical symptoms were consistent in over sixty recorded epidemics spread all over the world (Hyde 1998, [Online]). Despite the different names being used, these were repeated outbreaks of the same illness. It was also confirmed that the epidemic cases of M.E., and the sporadic cases of M.E. each represented the same illness (Hyde 2006, [Online]) (Dowsett 1999a, [Online]).

In 1956 the name Myalgic Encephalomyelitis was created. The term was invented jointly by Dr A Melvin Ramsay who coined this name in relation to the Royal Free Hospital epidemics that occurred in London in 1955 - 1957 and by Dr John Richardson who observed the same type of illness in his rural practice in Newcastle-upon-Tyne area during the same period. It was obvious to these physicians that they were dealing with the consequences of an epidemic and endemic infectious neurological disease (Hyde 1998, [Online]) (Hyde 2006, [Online]). The term Myalgic Encephalomyelitis means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation (Hyde 2006, [Online]). As M.E. expert Dr Byron Hyde MD writes:

'The reason why these physicians were so sure that they were dealing with an inflammatory illness of the brain is that they examined patients in both epidemic and endemic situations with this curious diffuse brain injury. In the epidemic situation with patients falling acutely ill and in some cases dying, autopsies were performed and the diffuse inflammatory brain changes are on record (2006, [Online]).'

In 1957, the Wallis description of M.E. was created. In 1959 Sir Donald Acheson (a former UK Chief Medical Officer) conducted a major review of M.E. (Hooper et al. 2001, [Online]). In 1959 Dr. Donald Henderson (a CDC epidemiologist) and Dr. Alexis Shelakov (a NIH epidemiologist), published a comprehensive review paper in the New England Journal of Medicine describing several outbreaks. Dr. Henderson noted: 'The pattern of the epidemic, the absence of any common exposure factors and the high incidence among medical and hospital personnel were consistent only with an infectious disease transmitted from person to person' (McLaughlin 2004, [Online]). In 1962 the distinguished neurologist Lord Brain included M.E. in the standard textbook of neurology. In recognition of the large body of compelling research that was available, M.E. was formally classified as an organic disease of the central nervous system in the World Health Organisation's International Classification of Diseases in 1969 with the code G.93.3. In 1978 the Royal Society of Medicine held a symposium on Myalgic Encephalomyelitis at which M.E. was accepted as a distinct entity. The symposium proceedings were published in The Postgraduate Medical Journal later that same year. The Ramsay case description of M.E. was published in 1981 (Hooper et al. 2001, [Online]).

Myalgic Encephalomyelitis from 1988 to the present

Modern technology has now served to confirm and to detail the meticulous clinical and scientific observations made about M.E. before 1988, and the name Myalgic Encephalomyelitis has stood the test of time scientifically for more than 50 years. What we now know about Myalgic encephalomyelitis includesthat;

M.E. is a systemic acutely acquired illness initiated by a virus infection which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions - this is always damaged in M.E. (Hence the name Myalgic Encephalomyelitis.) The CNS is diffusely (and MEASURABLY) injured at several levels, these include the cortex, the limbic system, the basal ganglia, the hypothalamus and areas of the spinal cord and its appendages. This persisting multilevel central nervous system (CNS) dysfunction is undoubtedly both the chief cause of disability in M.E. and the most critical in the definition of the entire disease process. Myalgic Encephalomyelitis causes a loss of normal internal homeostasis. The individual can no longer function systemically within normal limits.

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

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

M.E. is a distinct, recognisable disease entity that is not difficult to diagnose and can in fact be diagnosed relatively early in the course of the disease (within just a few weeks) - providing that the physician has some experience with the illness. Although there is as yet no single test which can be used to diagnose M.E. there are a series of tests which can confirm a suspected M.E. diagnosis. Virtually every M.E. patient will also have various abnormalities visible on physical exam. If all tests are normal, if specific abnormalities are not seen on certain of these tests (eg. brain scans), then a diagnosis of M.E. cannot be correct. M.E. is similar in a number of significant ways to multiple sclerosis, Lupus and poliomyelitis (polio). There is good evidence to suggest that M.E. is caused by an enterovirus; the same type of virus which causes polio (Bassett 2007, [Online]).

This is not simply theory, but is based upon an enormous body of mutually supportive clinical information which has been published in prestigious peer-reviewed journals all over the world and spans over 70 years, Confirmation of this hypothesis is now supported by electrical tests of muscle and of brain function (CT, MRI, SPECT and PET scans) and by biochemical and hormonal assays, and so on (Chabursky et al. 1992 p. 20) (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Hyde 2003, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Hyde 1992 pp. x-xxi) (Hyde & Jain 1992 pp. 38 - 43) (Hyde et al. 1992, pp. 25-37) (Dowsett et al. 1990, pp. 285-291) (Ramsay 1986, [Online]) (Dowsett & Ramsay n.d., pp. 81-84) (Richardson n.d., pp. 85-92).

But despite the long history of M.E., and the overwhelming irrefutable evidence that M.E. a distinct organic neurological disease, the perception and treatment of M.E. by the public, the medical profession, the government and the media has changed profoundly since 1988.

It is common to read written material on M.E. in the media and produced by government etc. which does not include even one legitimate fact about the illness and is made up entirely of myths and propaganda.

People with the symptom of chronic fatigue and those with authentic neurological Myalgic Encephalomyelitis share few if any similarities.

The new name CFS and the CFS casedefinition was created by the CDC in the US in 1988 by a board of eighteen members (many of them psychiatrists); few of which had studied either an epidemic of M.E., or any patients with the illness. This new criteria failed to select patients using any past or current relevant research or lab work, excluded the cardinal symptoms and signs of M.E. and instead focused almost entirely on 'fatigued persons.'

CFS was created in a response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. The three more experienced members of the board refused to sign the final document and withdrew themselves from the (CDC) definitional committee because the proposed new name and definition for the illness were just too different from the M.E. with which they were so familiar (Hooper et al. 2001 [Online]).

In the two most commonly used definitions of CFS - the US 1994 Fukada (or CDC) definition and the 1991 UK Oxford definition - the only essential symptom required for the diagnosis of CFS to be made is 'chronic fatigue.'

Despite the fact that it was an outbreak of M.E. which these CFS definitions were created to define the vast majority (an estimated 95% at least) of the research and articles available today which use the term CFS are not in any way concerned with, or relevant to, Myalgic Encephalomyelitis patients - yet these 'CFS' studies are what is used to determine the treatments that people with M.E. are recommended, or forced, to participate in. The small amount of research done under the name CFS which does relate to M.E. is also virtually always tainted by CFS propaganda. The creation of 'CFS' is an abuse of basic science. Despite the high level of disability and the vast number of patients involved, governments around the world are currently spending $0 a year on M.E. research.

So why were a group of psychiatrists allowed to redefine a disease of infectious origin?

Professor Malcolm Hooper explains:

'In the 1980s in the US (where there is no NHS and most of the costs of health care are borne by insurance companies), the incidence of ME escalated rapidly, so a political decision was taken to rename M.E. as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored. To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to government, resulting in the withdrawal and erosion of both social and financial support (2003a, [Online]) (2001, [Online]).'

This is the reason why the charade that M.E. could be a psychiatric or behavioural disorder or even a 'aberrant belief system' involving mere 'fatigue' exists; not because there is good scientific evidence - or any evidence - for the theory, or because the evidence proving organic causes and effects is lacking; but purely because such a view is so financially and politically convenient and profitable on such a large scale to a number of extremely powerful corporations and government departments (Hooper et al 2001, [Online]).

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.

Chronic Fatigue Syndrome is a man-made construct created in the US in 1988.

The only way forward, for the benefit of society and every patient group involved, is that:

1. The fictional disease category of 'CFS' must be abandoned. Patients with fatigue (and other symptoms) caused by a variety of different illnesses need to be diagnosed correctly with these illnesses if they are to have any chance of recovery; not given a meaningless Oxford or Fukuda 'CFS' misdiagnosis. (Some of the conditions commonly misdiagnosed as 'CFS' are very well defined and well-known illnesses and very treatable - but ONLY once they have been correctly diagnosed). Patients with M.E. need to be given this same opportunity.

Patients with depression need to be diagnosed with depression and then treated for depression. Patients with cancer should be diagnosed with cancer and then treated as is appropriate for the kind of cancer they have, and so on. Each of the patient groups involved must be correctly diagnosed and then treated as appropriate based on legitimate and unbiased science involving theSAME patient group.

Physicians who diagnose 'CFS' in any patient experiencing new onset fatigue without looking and testing for the true cause of the symptoms do their patients - and themselves - a great disservice. Some of the conditions commonly misdiagnosed as CFS are very well defined and well-known illnesses and very treatable - but only once they have been correctly diagnosed. Some conditions are also very serious or can even be fatal if not correctly diagnosed and managed, including Myalgic Encephalomyelitis. (It is not uncommon for people with cancer - which causes significant fatigue - to be misdiagnosed with CFS and to die needlessly due to a lack of appropriate treatment, for example.)

Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery. This process must begin with a correct diagnosis if at all possible. A correct diagnosis is half the battle won. A diagnosis of CFS - based on any of the definitions of CFS - can only ever be a misdiagnosis. Doctors must return to the age-old medical principals of correct diagnosis (a) careful history, (b) detailed physical examination and (c) appropriate investigation (Hyde 2006, [Online])

2. The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization (WHO) classification of M.E. as an organic neurological illness must be accepted and adhered to in all official documentations and government policy. There were sound medical reasons for the creation of the name in 1956, and for the classification of the illness by the WHO in 1969; neither of which has changed in the interim. Professor Malcolm Hooper explains:

The term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. The currently version ICD-10 lists M.E. under G.93.3 - neurological conditions. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination. (2006, [online])

Despite misleading claims made to the contrary by vested interest groups, there is well-documented evidence of inflammation of the brain and spinal cord in M.E. spanning over 50 years, but it is true that there is no evidence of inflammation of the brain or spinal cord in states of 'chronic fatigue' or 'tiredness' and other non-M.E. illnesses which may be commonly misdiagnosed as 'CFS' (Hooper n.d., [Online]) (Hyde 2006, [Online]).

M.E. is a distinct recognisable entity, with several unique features, which can be diagnosed relatively early in the course of the disease providing the physician has some experience with the illness. M.E. can easily be distinguished from various chronic fatigue states, and other unrelated 'fatiguing' illnesses. People with M.E. must be diagnosed with M.E. and treated for M.E., based on research which also involves M.E. patients again, finally. The M.E. community does not need to wait for official 'permission' to renew the name and scientifically and historically correct definition of M.E., these rights exist today (as they have since 1969) under the WHO ICD.

3. People with M.E. must also immediately stop being treated as if they are mentally ill, or suffer with a behavioural illness, or as if their physical symptoms do not exist or can be improved with 'positive thinking' or exercise - or mixed in with various non-M.E. 'fatigue' sufferers in any way.

People with M.E. must also be given access to basic medical care, financial support and other appropriate services (including funding for legitimate M.E. research) on an equal level to what is available for those with comparable illnesses (eg. multiple sclerosis or Lupus). The facts about M.E. must again be taught to medical students, and included in mainstream medical journals and already practicing physicians must be brought up to speed about M.E. It must be as unacceptable for physicians to be ignorant about M.E. as multiple sclerosis, diabetes or any other common and serious disease. M.E. expert Dr Elizabeth Dowsett explains that:

M.E. Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously! (2001a, [Online])

Myalgic Encephalomyelitis is a distinct infectious neurological disease - not a problem of medically unexplained 'fatigue.' Patients with M.E. must be treated based on the scientific facts, rather than misinformation and falsehoods based on political and financial considerations.

For the benefit of all of the patients groups involved, the medical community and society at large, the bogus disease category of CFS must be abandoned. There is no other logical or ethical solution