What is Myalgic Encephalomyelitis? A historical, medical and political overview This paper provides a historical, medical and political overview of Myalgic Encephalomyelitis. A must-read paper for anyone with an interest in M.E.
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Copyright © Jodi Bassett 2004. This version updated March 2009. From www.hfme.org
Myalgic Encephalomyelitis (M.E.) is a debilitating acquired neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder with the code G.93.3. M.E. can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934. M.E. is similar in a number of significant ways to multiple sclerosis, Lupus and poliomyelitis (polio). M.E. can be extremely severe and disabling and in some cases the disease is fatal.
Is Myalgic Encephalomyelitis a new illness? What does the name M.E. mean?
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])
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 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. 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]).
Since 1956 the term Myalgic Encephalomyelitis has been used to describe the illness in the UK, Europe Canada and Australasia. This term has stood the test of time for more than 50 years. The recorded medical history of M.E. as a debilitating organic neurological illness affecting children and adults is substantial; it spans over 70 years and has been published in prestigious peer-reviewed journals all over the world (Hyde 1998, [Online]) (Hooper 2003a, [Online]) (Dowsett 2001b, [Online]). As microbiologist and M.E. expert Dr Elizabeth Dowsett explains: ‘There is ample evidence that M.E. is primarily a neurological illness, although non-neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised’ (n.d.b, [Online]).
Myalgic Encephalomyelitis is not defined by mere ‘fatigue’
Myalgic Encephalomyelitis is not synonymous with being tired all the time. If a person is very fatigued for an extended period of time this does not mean they are having a ‘bout’ of M.E. To suggest such a thing is no less absurd than to say that prolonged fatigue means a person is having a ‘bout’ of multiple sclerosis, Parkinson’s disease or Lupus. If a person is constantly fatigued this should not be taken to mean that they have M.E. no matter how severe or prolonged their fatigue is. Fatigue is a symptom of many different illnesses as well as a feature of normal everyday life – but it is not a defining symptom of M.E., nor even an essential symptom of M.E.
The terms ‘fatigue’ and ‘chronic fatigue’ were not associated with defining this illness at all until the new name (and definition) of ‘Chronic Fatigue Syndrome’ was created in 1988 in the USA (Hyde 2006, [online]). But M.E. and CFS are not synonymous terms.
‘Fatigue’ and feeling ‘tired all the time’ are not at all the same thing as the very specific type of paralytic muscle weakness or muscle fatigue which is characteristic of M.E. (and is caused by mitochondrial dysfunction) and which affects every organ and cell in the body; including the brain and the heart. This causes – or significantly contributes to – such problems in M.E. as; cardiac insufficiency (a type of heart failure), orthostatic intolerance (inability to maintain an upright posture), blackouts, reduced circulating blood volume (and pooling of the blood in the extremities), seizures (and other neurological phenomena), memory loss, problems chewing/swallowing, episodes of partial or total paralysis, muscle spasms/twitching, extreme pain, problems with digestion, vision disturbances, breathing difficulties, and so on. These problems are exacerbated by even trivial levels of physical and cognitive activity, sensory input and orthostatic stress beyond a patient’s individual limits. People with M.E. are made very ill and disabled by this problem with their cells; it affects virtually every bodily system and has also lead to death in some cases. Many patients are housebound and bedbound and often are so ill that they feel they are about to die. People with M.E would give anything to instead only be severely ‘fatigued’ or tired all the time (Bassett 2009, [Online]).
Fatigue or post-exertional fatigue (or malaise) may occur in many different illnesses such as various post-viral fatigue states or syndromes, Fibromyalgia, Lyme disease, and many others – but what is happening with M.E. patients is an entirely different (and unique) problem of a much greater magnitude. These terms are not accurate or specific enough to describe what is happening in M.E. M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system – not a problem of ‘chronic fatigue’ (Hyde 2006, [Online]) (Hooper 2006, [Online]) (Hooper & Marshall 2005a, [Online]) (Hyde 2003, [Online]) (Dowsett 2001, [Online]) (Hooper et al. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Dowsett 1996, p. 167) (Dowsett et al. 1990, pp. 285-291) (Dowsett n.d., [Online]).
If Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms, why do some groups claim that they are? What is CFS?
The disease category of 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.
Why were the renaming and redefining of the distinct neurological disease Myalgic Encephalomyelitis allowed – indeed intended – to become so muddied? Indeed why did Myalgic Encephalomyelitis suddenly need to be renamed or redefined at all? Money. There was an enormous rise in the reported incidence of Myalgic Encephalomyelitis in the late 1970s and 1980s, alarming medical insurance companies in the US. So it was at this time that certain psychiatrists and others involved in the medical insurance industry (on both sides of the Atlantic) began their campaign to reclassify the severely incapacitating and discrete neurological disorder known as Myalgic Encephalomyelitis as a psychological or ‘personality’ disorder, in order to side-step the financial responsibility of so many new claims (Marshall & Williams 2005a, [Online]). As 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 Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support [for M.E. patients]. Influenced by these psychiatrists, government bodies around the world have continued to propagate the same falsehoods with the result that patients are left without any hope of understanding or of health service provision or delivery. As a consequence, government funding into the biomedical aspects of the disorder is non-existent. (2003a, [Online]) (2001, [Online])
The psychiatrist Simon Wessely – arguably the most powerful and prolific author of papers which claim that M.E. is merely a psychological problem of ‘fatigue’ – began his rise to prominence in the UK at the same time the first CFS definition was being created in the USA (1988). Wessely, and his like-minded colleagues – a small group made up mostly but not exclusively of psychiatrists (colloquially known as the ‘Wessely School’) has gained dominance in the field of M.E. in the UK (and increasingly around the world) by producing vast numbers of papers which purport to be about M.E.
Wessely claims to specialise in M.E. but uses the term interchangeably with chronic fatigue, fatigue or tiredness plus terms such as neurasthenia, CFS and ‘CFS/ME’ (a confusing and misleading term he created himself). He claims that psychiatric states of ongoing fatigue and the distinct neurological disorder M.E. are synonymous. Despite all the existing contradictory evidence, Wessely (and members of the Wessely School) assert that M.E. is a behavioural disorder (with no physical signs of illness or abnormalities on testing) that is perpetuated by ‘aberrant illness beliefs’ and by ‘the misattribution of normal bodily sensations’ and that patients ‘seek and obtain secondary gain by adopting the sick role’ (Hooper & Marshall 2005a, [Online]).
The Wessely School and collaborators has assiduously attempted to obliterate recorded medical history of Myalgic Encephalomyelitis even though the existing evidence and studies were published in prestigious peer-reviewed journals and span over 70 years. Wessely’s claims (and those of his colleagues around the world) have flooded the UK (and worldwide) literature to the extent that medical journals rarely contain any factual and unbiased information on M.E. Thus most clinicians are effectively being deprived of the opportunity to obtain even the most basic facts about the illness.
For at least a decade, serious questions have been raised in international medical journals about possible scientific misconduct and flawed methodology in the work of Wessely and his colleagues. It is only relatively recently however that his long-term involvement as medical adviser – and board member – to a number of commercial bodies having a vested interest in how M.E. is managed have been exposed.
This is the sole reason why the charade that M.E. could be a psychiatric or behavioural ‘fatiguing’ disorder or even a ‘aberrant belief system’ continues: 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 because such a ‘theory’ is so financially and politically convenient and profitable on such a large scale to a number of extremely powerful corporations (Hooper et al 2001, [Online]). As Dr Elizabeth Dowsett comments, these ridiculous financially motivated theories bear as much relation to legitimate science ‘as Astrology does to Astronomy’ (1999b [Online]).
Professor Malcolm Hooper goes on to explain:
Increasingly, it is now "policy-makers" and Government advisers, not experienced clinicians, who determine how a disorder is classified and managed in the NHS: the determination of an illness classification and the provision of policy-driven "management" is a very profitable business. To the detriment of the sick, the deciding factor governing policies on medical research and on the management and treatment of patients is increasingly determined not by medical need but by economic considerations. There is a gross mismatch between the severity and complexity of M.E. and the medical and public perception of the disorder (2003a, [Online]).
Members of the ‘Wessely school’ in the UK including Wessely, Sharpe, Cleare and White, their US counterparts Reeves, Straus etc of the CDC, in Australia Lloyd, Hickie etc and the clinicians of the Nijmegen group in the Netherlands each support a bogus psychiatric or behavioural paradigm of ‘CFS’ and recommend rehabilitation-based approaches such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as the most useful interventions for ‘CFS’ patients. It is important to be aware that none of these groups is studying patients with M.E. Each of these groups uses a definition of ‘CFS,’ or has created their own, which does not select those with M.E. but instead selects those with various types of psychiatric and non-psychiatric fatigue. (These inappropriate interventions are at best useless and at worst extremely harmful or fatal for M.E. patients.)
The creation of the bogus disease category ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various unrelated psychiatric fatigue states and post-viral fatigue syndromes (etc) for the benefit of various (proven) financial and political interests. The resulting ‘confusion’ between the distinct neurological disease M.E. and the man-made bogus disease category of ‘CFS’ has caused an overwhelming additional burden of suffering for those who suffer from neurological M.E. and their families. It's a big huge mess, that is for certain - but it is not an accidental mess - that is for certain too (Hyde 2006a, [Online]) (Hooper 2006, [Online]) (Hyde 2003, [Online]) (Hooper 2003a, [Online]) (Dowsett 2001a, [Online]) (Hooper et al. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]).
What does a diagnosis of ‘Chronic Fatigue Syndrome’ actually mean?
There are now more than nine different definitions of ‘CFS.’ All each of these flawed CFS definitions ‘define’ is a heterogeneous (mixed) population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue. The fact that a person qualifies for a diagnosis of CFS, based on any of the CFS definitions (a) does not mean that the patient has Myalgic Encephalomyelitis, and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’ A diagnosis of CFS – based on any of the CFS definitions – can only ever be a misdiagnosis. All a diagnosis of ‘CFS’ actually means is that the patient has a gradual onset fatigue syndrome which is usually due to a missed major disease. As Dr Byron Hyde explains, the patient has:
Missed cardiac disease, b. Missed malignancy, c. Missed vascular disease, d. Missed brain lesion either of a vascular or space occupying lesion, e. Missed test positive rheumatologic disease, f. Missed test negative rheumatologic disease, g. Missed endocrine disease, h. Missed physiological disease, i. Missed genetic disease, j. Missed chronic infectious disease, k. Missed pharmacological or immunization induced disease, l. Missed social disease, m. Missed drug use disease or habituation, n. Missed dietary dysfunction diseases, o. Missed psychiatric disease (2006, [Online]).
Under the cover of ‘CFS’ certain vested interest groups have assiduously attempted to obliterate recorded medical history of Myalgic Encephalomyelitis; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years. As M.E. expert Dr Byron Hyde explains:
Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears (2006, [Online]).
The only way forward for M.E. patients and all of the diverse patient groups commonly misdiagnosed with ‘CFS’ (both of which are denied appropriate support, diagnosis and treatment, and may also be subject to serious medical abuse) is that the bogus disease category of ‘CFS’ must be abandoned. Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery and this process must begin with a correct diagnosis if at all possible. A correct diagnosis is half the battle won (Hyde 2006a, 2006b, [Online]) (Hooper 2006, [Online]) (Hyde 2003, [Online]) (Hooper 2003a, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Dowsett n.d., [Online]).
What do the terms CFIDS, ME/CFS, CFS/ME, Myalgic Encephalopathy and ME-CFS mean?
When the terms CFS, CFIDS, ME/CFS, CFS/ME, Myalgic Encephalopathy or ME-CFS are used what is being referred to may be patients with/facts relating to any combination of: 1. Miscellaneous psychological and non-psychological fatigue states (including somatisation disorder) 2. A self limiting post-viral fatigue state or syndrome (eg. following glandular fever.) 3. A mixed bag of unrelated, misdiagnosed illnesses (each of which feature fatigue as well as a number of other common symptoms; poor sleep, headaches, muscle pain etc.) including Lyme disease, multiple sclerosis, Fibromyalgia, athletes over-training syndrome, depression, burnout, systemic fungal infections (candida) and even various cancers 4. Myalgic Encephalomyelitis patients.
The terminology is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and CFS are very different and distinct, and it is the definitions of each of these terms which is of primary importance. The distinction must be made between terminology and definitions.
Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.
Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.
The only thing that makes any sense is for patients with Myalgic Encephalomyelitis, to be studied ONLY under the name Myalgic Encephalomyelitis – and for this term ONLY to be used to refer to a 100% M.E. patient group The only correct name for this illness – M.E. as per Ramsay/Richardson/Dowsett and Hyde – is Myalgic Encephalomyelitis. M.E. is not synonymous with CFS, nor is it a subgroup of CFS. (There is no such disease/s as “CFS.’) It is also important that the only terms which are used are those which do have an official and correct World Health Organization classification.
There is no such disease/s as ‘CFS’ – the name CFS and the bogus disease category of CFS must be abandoned (along with the use of other vague and misleading umbrella terms such as ‘ME/CFS’ ‘CFS/ME’ 'CFIDS' and 'Myalgic Encephalopathy' and others), for the benefit of all the patient groups involved.
What does the term ICD-CFS mean?
The various definitions of ‘CFS’ do not define M.E. Myalgic Encephalomyelitis is an organic neurological disorder as defined at G.93.3 in the World Health Organization’s International Classification of Diseases (ICD). The definitions of ‘CFS’ do not reflect this. The ‘CFS’ definitions are not ‘watered down’ M.E. definitions, as some claim. They are not definitions of M.E. at all.
However, ever since an outbreak of M.E. in the US was given the label ‘CFS,’ the name/definition ‘CFS’ has prevailed for political reasons. ‘CFS’ is widely though wrongly applied to M.E. as well as to other diseases.
The overwhelming majority of ‘CFS’ research does not involve M.E. patients and is not relevant in any way to M.E. patients. However, a very small amount (a minuscule percentage) of research published under the name ‘CFS’ clearly does involve a significant number of M.E. patients as it details those abnormalities which are unique to M.E. Sometimes the term ‘ICD-CFS’ is used in those studies and articles which, while they use the term ‘CFS,’ do relate to some extent to authentic M.E.
Problems with ‘CFS’ or so-called ‘ICD-CFS’ research
The overwhelming majority of ‘CFS’ research does not involve M.E. patients and is not relevant in any way to M.E. patients. A small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. Unless studies are based on an exclusively M.E. patient group, results cannot be interpreted and are meaningless for M.E. While it is important to be aware of the small amount of research findings that do hold some value for M.E. patients, using the term ‘ICD-CFS’ to refer to this research is misleading and in many ways just damaging as using terms and concepts like ‘ME/CFS’ or ‘CFS/ME.’
What does define Myalgic Encephalomyelitis? What is its symptomatology?
Myalgic encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions – this is always damaged in M.E. (Hence the name Myalgic Encephalomyelitis.) The CNS is diffusely injured at several levels, these include the cortex, the limbic system, the basal ganglia, the hypothalamus and areas of the spinal cord and its appendages. This persisting multilevel central nervous system (CNS) dysfunction is undoubtedly both the chief cause of disability in M.E. and the most critical in the definition of the entire disease process.
Myalgic Encephalomyelitis represents an acute change in the balance of neuropeptide messengers, and due to this, a resulting loss of the ability of the CNS (the brain) to adequately receive, interpret, store and recover information which enables it to control vital body functions (cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance etc). It is a loss of normal internal homeostasis. The individual can no longer function systemically within normal limits.
M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Again, although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E. Some individuals also have damage to skeletal and heart muscle. Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage.
M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) – and an associated injury of the immune system – by the chronic effects of a viral infection. There is also transient and/or permanent damage to many other organs and bodily systems (and so on) in M.E. M.E. affects the body systemically. Even minor levels of physical and cognitive activity, sensory input and orthostatic stress beyond a M.E. patient’s individual post-illness limits causes a worsening of the severity of the illness (and of symptoms) which can persist for days, weeks or months or longer. In addition to the risk of relapse, repeated or severe overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death in M.E.
M.E. is not stable from one hour, day, week or month to the next. It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these functions, that creates the high level of disability in M.E. It is also worth noting that of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of M.E. All of this is not simply theory, but is based upon an enormous body of mutually supportive clinical information. These are well-documented, scientifically sound explanations for why patients are bedridden, profoundly intellectually impaired, unable to maintain an upright posture and so on (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).
What are some of the symptoms of Myalgic Encephalomyelitis?
More than 64 distinct symptoms have been authentically documented in M.E. At first glance it may seem that every symptom possible is mentioned, but although people with M.E. have a lot of different minor symptoms because of the way the central nervous system (which controls virtually every bodily system) is affected, the major symptoms of M.E. really are quite distinct and almost identical from one patient to the next. (Hooper & Montague 2001a, [Online]) (Hyde 2006, [Online]) Individual symptoms of Myalgic Encephalomyelitis include:
Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacusis, tinnitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm.
Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances. Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (eg. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ) in M.E. (Bassett 2009, [Online]).
What other features define or characterise Myalgic Encephalomyelitis?
What characterises M.E. every bit as much as the individual neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on. In other words, the pattern of symptom exacerbations, relapses and of disease progression.
The way the bodies of people with M.E. react to these activities/stimuli post-illness is unique in a number of ways. Along with a specific type of damage to the brain (the central nervous system) this characteristic is one of the defining features of the illness which must be present for a correct diagnosis of M.E. to be made. The main characteristics of the pattern of symptom exacerbations, relapses and disease progression (and so on) in Myalgic Encephalomyelitis include:
For the full-length version of this text and for a full list of references for this text see: The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List.
What causes Myalgic Encephalomyelitis?
M.E. expert Dr Byron Hyde explains that:
[The] prodromal phase is associated with a short onset or triggering illness. This onset illness usually takes the form of either, or any combination, of the following, (a) an upper respiratory illness, (b) a gastrointestinal upset, (c) vertigo and (d) a moderate to severe meningitic type headache. The usual incubation period of the triggering illness is 4-7 days. The second and third phases of the illness are usually always different in nature from the onset illness and usually become apparent within 1-4 weeks after the onset of the infectious triggering illness (1998 [Online]).
Despite popular opinion (and the vast amount of ‘CFS’ government and media propaganda) there is no link however between contracting M.E. and being a 'perfectionist' or having a ‘type A’ or over-achiever personality. M.E. also cannot be caused by a period of long-term or intense stress, trauma or abuse in childhood, becoming run-down, working too hard or not eating healthily. Myalgic Encephalomyelitis is not a form of ‘burnout’ or nervous exhaustion, or the natural result of a body no longer able to cope with long-term stress.
Research also shows that it is simply not possible that M.E. could be caused by the Epstein-Barr virus, any of the herpes viruses (including HHV6), glandular fever/mononucleosis, Cytomegalovirus (CMV), Ross River virus, Q fever, hepatitis, chicken pox, influenza or any of the bacteria which can result in Lyme disease (or other tick-borne bacterial infections). M.E. is also not a form of chemical poisoning.
M.E. is undoubtedly caused by a virus, a virus with an incubation period of 4-7 days. There is also ample evidence that M.E. is caused by the same type of virus that causes polio; an enterovirus (Hyde 2006, [Online]) (Hyde 2007, [Online]) (Hooper 2006, [Online]) (Hooper & Marshall 2005a, [Online]) (Hyde 2003a, [Online]) (Dowsett 2001a, [Online]) (Hooper et al. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Ryll 1994, [Online]).
What does cause Myalgic Encephalomyelitis? Are there outbreaks of M.E.?
One of the most fundamental facts about M.E. throughout its history is that it occurs in epidemics. 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 (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]).
M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) by the chronic effects of a viral infection. The world’s leading M.E. experts, namely Ramsay, Richardson, Dowsett and Hyde, (and others) have all indicated that M.E. is caused by an enterovirus. The evidence which exists to support the concept of M.E. as an enteroviral disease is compelling (Hyde 2007, [Online]) (Hyde 2006, [Online]). An enterovirus explains the; age variation, sex variation, obvious resistance of some family members to the infection and the effect of physical activity (particularly in the early stages of the illness) in creating more long-term/severe M.E. illness in the host (Hyde & Jain 1992a, p. 40). There is also the evidence that; M.E. epidemics very often followed polio epidemics, M.E. resembles polio at onset, serological studies have shown that communities affected by an outbreak of M.E. were effectively blocked (or immune) from the effects of a subsequent polio outbreak, evidence of enteroviral infection has been found in the brain tissue of M.E. patients at autopsy, and so on (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Hyde 2003, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Hyde et al. 1992, pp. 25-37) (Dowsett et al. 1990, pp. 285-291) (Ramsay 1986, [Online]).
The US Centres for Disease Control (CDC) placed ‘CFS’ on its "Priority One; New and Emerging" list of infectious diseases some years ago; a list that also includes Lyme disease, hepatitis C, and malaria’ (Gellman & Verillo 1997, p. 19). But no real research into transmissibility (or more importantly on reducing infection rates) has been done by any government on patients with M.E. (or ‘CFS’) despite ample evidence that this is an infectious disease. There have been many well-documented clusters or outbreaks of the illness, reports of as many as 4.5% of M.E. sufferers contracting the illness immediately after blood transfusions (or after needle-stick injuries involving the blood of M.E. patients), evidence of the disease spreading through casual contact amongst family members and so on (Johnson, 1996) (Carruthers et al. 2003, p.79).
As Dr Elizabeth Dowsett explains: ‘The problem we face is that, in spite of overwhelming epidemiological and technical evidence of an infectious case, the truth is being suppressed by the government and the 'official' M.E. charities as 'too scary' for the general public.’ (n.d.a, [Online]) This pretence of ignorance on behalf of government worldwide has had enormous consequences; only in the UK are people with M.E. specifically banned from donating blood for example. So it is that the number of people infected with M.E. continues to rise unabated and largely unnoticed by the public (Johnson, 1996).
Is Myalgic Encephalomyelitis difficult to diagnose? What tests can be used to diagnose 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. There is just no other illness that is even remotely like M.E.
Although there is as yet no single test which can be used to diagnose M.E. there are (as with Lupus and multiple sclerosis and ovarian cancer and many other illnesses) 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 (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Hooper et al. 2001, [Online]) (Chabursky et al. 1992, p.22). As M.E. expert Dr Byron Hyde explains:
The one essential characteristic of M.E. is acquired CNS dysfunction. 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 changes: SPECT, xenon SPECT, PET, and neuropsychological testing (2003, [Online]).
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. New TESTABLE definitions such as The Nightingale Definition of M.E. now also make diagnosis easier than ever before; even for those with no experience with the illness (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Hooper & Marshall 2005a, [Online]) (Hyde 2003, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online]) (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Hyde et al. 1992, pp. 25-37) (Dowsett et al. 1990, pp. 285-291) (Ramsay 1986, [Online]) (Dowsett n.d., [Online]) (Dowsett & Ramsay n.d., pp. 81-84) (Richardson n.d., pp. 85-92).
How common is Myalgic Encephalomyelitis? Who get M.E. and how?
Although the illness we now know as Myalgic Encephalomyelitis has existed for centuries, for much of that time it was a relatively uncommon disease. Following the mass polio vaccination programs of the 1960s cases of polio were greatly reduced and outbreaks of M.E. seemed to be similarly affected. It wasn’t until the late 1970s that M.E. began its dramatic increase in incidence worldwide. Over 20 years later, M.E. is a worldwide epidemic of devastating proportions. Many people have died from M.E. and there are now many hundreds of thousands of people severely disabled by this epidemic (TCJRME 2007, [Online]) (Hyde 1992, p. xi).
The main period of infectivity of M.E. peaks at the time just before symptoms appear through to the initial acute phase of the illness (which lasts for several months or in some cases years). M.E. appears to be highly infective but also highly selective. The major mode of infectivity is by airborne or respiratory route. Modes of transmission are thought to include: casual contact (respiratory), salivary transmission (eg. kissing), sexual transmission and transmission through blood products. (Hyde et al. 1992, pp. 25 - 37) (A recent study of 752 patients found that 4.5% of them – almost one in twenty – had had a blood transfusion days or a week before experiencing acute onset of M.E., for example) (Carruthers et al. 2003, [Online]). (Hyde et al. 1992, pp. 25 - 37).
M.E. has a similar strike rate to multiple sclerosis (or possibly somewhat higher), and is estimated to affect roughly 0.2% of the population. Children and teenagers are also susceptible to the illness and children as young as five have been diagnosed with M.E. (M.E. can occur in children younger than five, but this is thought to be rare.) All ages are affected but most commonly sufferers are under 45 at onset. Women are affected around three times as often as men, a ratio common in autoimmune disorders, although in children the sexes seem to be afflicted equally. M.E. affects all races and socio-economic groups and has been diagnosed all over the world. There are more than a million M.E. sufferers worldwide (Hooper et al. 2001 [Online]) (Hyde 1992, pp. x - xxi).
Are there any treatments for Myalgic Encephalomyelitis?
Whilst there is no cure as yet, or treatments which can dramatically influence the course of the illness due to the appalling lack of funding into research; intelligent nutritional, pharmaceutical and other interventions can make a significant difference to a patient's life. Appropriate biomedical diagnostic testing should be done as a matter of course (and repeated regularly) to ensure that the aspects of the illness which are able to be treated can be diagnosed, monitored and then treated as appropriate. Testing is also important so that dangerous deficiencies and dysfunctions (which may place the patient at significant risk) are not overlooked (Hooper at al. 2001 [Online]). For information on treatment see: Treating M.E. - The Basics.
What is known about Myalgic Encephalomyelitis so far?
There is an abundance of research which shows that M.E. is an organic illness which can have profound effects on many bodily systems. These are well-documented, scientifically sound explanations for why patients are bedridden, profoundly intellectually impaired, unable to maintain an upright posture and so on. More than a thousand good articles now support the basic premises of M.E. Autopsies have also confirmed such reports of bodily damage and infection (Hooper & Williams 2005a, [Online]).
Many different organic abnormalities have been found in M.E. patients (in peer reviewed research). Patient advocates Margaret Williams and Eileen Marshall explain that:
(Note that this is only a sample of some of the research available, not an exhaustive list.) It is known that Myalgic Encephalomyelitis is:
1. An acute onset (biphasic) epidemic or endemic infectious disease process
2. An autoimmune disease (with similarities to Lupus)
3. An infectious neurological disease, affecting adults and children
4. A disease which involves significant (and at times profound) cognitive impairment/dysfunction
5. A persistent viral infection (most likely due to an enterovirus; the same type of virus which causes poliomyelitis and post-polio syndrome)
6. A diffuse and measurable injury to the vascular system of the central nervous system (the brain)
7. A central nervous system (CNS) disease (with similarities to MS)
8. A variable (but always, serious) diffuse (acquired) brain injury
9. A systemic illness (associated with organ pathology; particularly cardiac)
10. A vascular disease
11. A cardiovascular disease
12. A type of cardiac insufficiency
13. A mitochondrial disease
14. A metabolic disorder
15. A musculo-skeletal disorder
16. A neuroendocrine disease
17. A seizure disorder
18. A sleep disorder
19. A gastrointestinal disorder
20. A respiratory disorder
21. An allergic disorder
22. A pain disorder
23. A life-altering disease
24. A chronic or lifelong disease associated with a high level of disability
25. An unstable disease; from one hour/day/week or month to the next
26. A potentially progressive or fatal disease (Hyde 2007, [Online]) (Hooper et al. 2001, [Online]) (Cheney 2007, [video recording]) (Ramsay 1986, [Online])
Myalgic Encephalomyelitis affects every cell in the body. For more information see the General articles and research overviews section. See also articles by: Dr. Elizabeth Dowsett and Byron Hyde MD.
Is there a legitimate scientific debate about whether or not M.E. is a ‘real’ medical condition?
Despite popular opinion, there simply is no legitimate scientifically motivated debate about whether or not M.E. is a ‘real’ illness or not or has a biological basis. The psychological or behavioural theories of M.E. are no more scientifically viable than are the theories of a ‘flat earth.’ They are pure fiction.
Similar Medical Conditions?
There are a number of post-viral fatigue states or syndromes which may follow common infections such as mononucleosis/glandular fever, hepatitis, Q fever, Ross river virus and so on. M.E. is an entirely different condition to these self-limiting fatigue syndromes however (and is not caused by the Epstein Barr virus or any of the herpes or hepatitis viruses). People suffering with any of these post-viral fatigue syndromes do not have M.E.
Myalgic Encephalomyelitis does have some limited similarities – to varying degrees – to illnesses such as multiple sclerosis, Lupus, post-polio syndrome, Gulf War Syndrome and chronic Lyme disease, and others. But this does not mean that they represent the same etiological or pathobiological process. They do not. M.E. is a distinct neurological illness with a distinct; onset, symptoms, aetiology, pathology, response to treatment, long and short term prognosis – and World Health Organization classification (G.93.3) (Hyde 2006, [Online]) (Hyde 2007, [Online]) (Hooper 2006, [Online]) (Hooper & Marshall 2005a, [Online]) (Hyde 2003a, [Online]) (Dowsett 2001a, [Online]) (Hooper et al. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online])
How well is research into Myalgic Encephalomyelitis research funded by government?
Governments around the world are currently spending $0 a year on M.E. research. Considering the brutal severity of the illness, the vast numbers of patients involved, this is a worldwide disgrace.
Abuse and Myalgic Encephalomyelitis
Two of the most common interventions people with M.E. are recommended to participate in are cognitive behavioural therapy (CBT) and graded exercise therapy (GET).
However, despite the misleading claims to the contrary made by various vested interest groups, no evidence exists which shows that CBT and GET are appropriate, useful or safe treatments for Myalgic Encephalomyelitis patients. Studies by these groups (and others) involving miscellaneous psychiatric and non-psychiatric ‘fatigue’ sufferers, and their positive response to these treatments, have no more relevance to M.E. sufferers than they do to diabetes patients, patients with multiple sclerosis or any other illness. Thus, patients with M.E. are routinely being prescribed these treatments on what amounts to a ‘random’ basis medically.
As (bad) luck would have it, graded exercise programs are probably the single most inappropriate ‘treatment’ that a M.E. sufferer could be recommended to undertake. Permanent damage may be caused, as well as disease progression. Patient accounts of leaving exercise programs much more severely ill than when they began them; wheelchair-bound or bed-bound or needing intensive care or cardiac care units, are common. The damage caused is often severe and either long-term or permanent; thus some patients are still dealing with the effects of inappropriate advice to exercise five or ten or more YEARS afterward and for some patients this damage is permanent. Sudden deaths have also been reported in a small percentage of M.E. patients following exercise. CBT and GET are at best useless and at worst extremely harmful for Myalgic Encephalomyelitis patients. Despite this, people with M.E. are routinely being recommended these ‘treatments’ while also being assured that they are completely safe. These interventions are also not just being offered to M.E. patients solely on a voluntary basis; many have been treated as psychiatric patients against their will (or against the will of the parents of children with M.E.). In some cases it is a condition of receiving medical insurance or government welfare entitlements that M.E. patients first undergo ‘rehabilitation’ such as CBT and GET programs, particularly in the UK.
If a prescription drug had anything like the appalling track record exercise has with people with M.E. (or even a small fraction of it; even 2%) it would be an enormous worldwide scandal. The drug would be immediately banned, there would be some form of inquiry and serious criminal charges may well be laid. Yet the rate of people with M.E. recommended or even forced to exercise continues to rise, and with the full support of government etc. This is despite the fact that legitimate research clearly shows that along with the huge risk involved, it has a ZERO percent chance of providing any benefit to people with authentic M.E. That this can be allowed to go on in such a supposedly enlightened day and age as ours defies belief.
It is also of great concern that so many M.E. patients are ONLY offered ‘treatments’ such as CBT and GET – while access to even basic appropriate medical care is withheld. Of the 25% of patients who are severely affected by the illness (and are bed-bound and housebound) around the majority have no contact with the health service at all as they are seldom able to obtain housecalls, for example (Dunn 2005, [Online]). Many sufferers are also refused the basic welfare support to which they are entitled. Thus a significant percentage of very physically ill and vulnerable M.E. patients are simply left to suffer and die at home without any medical care or welfare or social support (Hooper 2003a, [Online]).
It is only Myalgic Encephalomyelitis patients who are negatively affected by the bogus creation of ‘CFS’?
Other patient groups misdiagnosed as CFS are also denied appropriate diagnosis and treatment and they may also routinely be subjected to inappropriate psychological interventions such as CBT and GET. There are also a variety of negative impacts on doctors and the public (and others) caused by the ‘CFS’ insurance scam. Truly the only groups which gain from the ‘CFS’ confusion are insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.
How severe is Myalgic Encephalomyelitis?
Although some people do have more moderate versions of the illness, symptoms are extremely severe for at least 25-30% of the people who have M.E.; significant numbers of whom are housebound and bedbound.
Dr. Paul Cheney stated before a US FDA Scientific Advisory Committee:
I have evaluated over 2,500 cases. At worst, it is a nightmare of increasing disability with both physical and neurocognitive components. The worst cases have both an MS-like and an AIDS-like clinical appearance. We have lost five cases in the last six months. 80% of cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self. (Hooper et al. 2001 [Online])
Dr Dan Peterson found that: ‘M.E. patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses.’ An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or haemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that M.E. patients scored the lowest. "In other words", said one M.E. expert in a radio interview, “this disease is actually more debilitating than just about any other medical problem in the world” (Munson 2000, p. 4).
In the 1980s Mark Loveless, an infectious disease specialist and head of the AIDS and M.E. Clinic at Oregon Health Sciences University, found that M.E. patients whom he saw had far lower scores on the Karnofsky performance scale than his HIV patients even in the last week of their life. He testified that a M.E. patient, ‘feels effectively the same every day as an AIDS patient feels two weeks before death’ (Hooper & Marshall 2005a, [Online]).
But in M.E., this extremely high level of illness is not short-term – it does not always lead to death – it can instead continue uninterrupted for decades.
Recovery from Myalgic Encephalomyelitis
Myalgic Encephalomyelitis patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis. As M.E. expert Dr Melvin Ramsay explains; ‘The degree of physical incapacity varies greatly, but the [level of severity] is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them’ (1986, [Online]).
M.E. can be progressive, degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, or relapsing and remitting. Some patients experience spontaneous remissions albeit most often at a greatly reduced level of functioning compared to pre-illness and such patients remain susceptible to relapses for the remainder of their lives – M.E. is a chronic/life-long disability where relapse is always possible. Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes M.E. is fatal. As Dr Elizabeth Dowsett explains:
After a variable interval, a multi-system syndrome may develop, involving permanent damage to skeletal or cardiac muscle and to other "end organs" such as the liver, pancreas, endocrine glands and lymphoid tissues, signifying the further development of a lengthy chronic, mainly neurological condition with evidence of metabolic dysfunction in the brain stem. Yet, stabilisation, albeit at a low level, can still be achieved by appropriate management and support. The death rate of 10% occurs almost entirely from end-organ damage within this group (mainly from cardiac or pancreatic failure) (2001a, [Online]).
Clearly, many people with M.E. are significantly or severely disabled. But what is so tragic about this high level of suffering is that so much of it is needless. The correct type of support (financial, medical and practical) can do much to prevent the physical, occupational and other deterioration in the quality of life for M.E. patients and can stabilise the illness (Dowsett 2002b, [Online]). Many deaths from M.E. could also have been prevented if only those patients had been given a basic level of support and care made available to patients with illnesses with comparable care needs such as multiple sclerosis and motor neurone disease.
Certain groups and individuals are benefiting enormously from this fraudulent artificial ‘CFS’ construct.
To say that these groups and individuals actually believe what they are saying and that is it based on science or reality is ridiculous. To say that it is merely a misunderstanding or a mistake is also ridiculous. The ‘CFS’ construct is complete fiction, and exists purely because it is so financially and politically beneficial to a number of powerful groups.
The artificial ‘CFS’ construct is no more a scientifically accurate description of M.E. than it is a scientifically accurate description of MS, Lupus or polio. This pretence of ignorance about M.E. and about the reality of ‘CFS’ (particularly by government) has had devastating consequences for people with M.E. – and all those with non-M.E. illnesses who are misdiagnosed as having ‘CFS’ – and has also meant that the number of M.E. sufferers continues to rise unabated and largely unrecognised. The general public worldwide – including sufferers themselves – have been lied to repeatedly about the reality of Myalgic Encephalomyelitis.
The decades of systemic abuse and neglect of the million or more people with M.E. worldwide has to stop. M.E. and CFS are not the same. Concepts such as ‘ME/CFS,’ ‘CFS/ME,’ Myalgic ‘Encephalopathy’ and ‘CFIDS’ are also unhelpful and unscientific and only add to the obfuscation.
‘CFS’ is merely a scam invented by insurance companies motivated by profit without regard for truth or ethics. These groups are acting without any regard for the (extreme) suffering and the additional avoidable deaths they are causing. These groups are acting criminally. This scam is tissue thin and very easily discovered if one merely takes a small amount of time to look at all of the evidence.
Why is almost nobody doing this? Why is the world letting these groups get away with such a heinous scam and such appalling abuse on a massive scale? Why isn’t the world caring enough or smart enough or gutsy enough to see through these slick and well-funded misinformation campaigns, and to act? How can this be, when the lies are so flimsy and scientifically laughable? Have we learned nothing from the devastating corporate cover-ups of the truth about tobacco and asbestos in our recent past? Where is the World Health Organisation? Where are our human rights groups? Where is our media? Where are our uncompromising investigative journalists?
Will it take another 20 years? How much more extreme do the suffering and abuse have to be? How many more hundreds of thousands of children and adults worldwide have to be affected? How many more patients will have to die needlessly before something is finally done? How much longer will we leave the fox in charge of the hen house? It’s beyond sick.
Where do we go from here?
Sub-grouping different types of ’CFS,’ refining the bogus ‘CFS’ definitions further or renaming ‘CFS’ with some variation on the term M.E. would achieve nothing and only create yet more confusion and mistreatment. The problem is not that ‘CFS’ patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease as ‘CFS’ – that is the entire issue, and the vast majority of patients misdiagnosed with CFS do not have M.E. and so have no more right to that term than to ‘cancer’ or ‘diabetes.’ The only way forward, for the benefit of society and every patient group involved, is that:
1. The bogus disease category of ‘CFS’ must be abandoned completely. 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. Patients with M.E. need this same opportunity. Each of the patient groups involved must again be correctly diagnosed and then treated as appropriate based on legitimate and unbiased science involving the SAME patient group.
2. The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy. As Professor Malcolm Hooper explains:
The term myalgic encephalomyelitis 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])
3. People with M.E. must 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’ and exercise – or mixed in with various ‘fatigue’ sufferers in any way or patients with any other illness than authentic Myalgic Encephalomyelitis. 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 so on.
What can you do to help?
Unlike people with HIV/AIDS, people with M.E. do not have an initial period of their illness where they are only mildly affected. M.E. is severely disabling even in the first week of illness. People with M.E. are almost all far too ill to stage huge protests, rallies and marches. Many with M.E. cannot even read enough to be able to understand what is happening, or they aren’t even aware that high quality scientific information on M.E. exists. Almost all so-called patient advocacy groups worldwide have sold patients out to the highest bidder and are now actively collaborating with our abusers. These groups are no longer advocates for patients with M.E. – indeed they are working directly AGAINST the interest of people with M.E. (These groups also do not help all those misdiagnosed with ‘CFS’ who do not have M.E.) The media has also sold-out and betrayed M.E. patients. The list goes on.
People with M.E. have only a tiny minority of the medical, scientific, legal and other potentially supporting professions – or the public – on their side. As the Committee for Justice and Recognition of Myalgic Encephalomyelitis explain:
There is no immunity to M.E. The next victim of this horrible disease could be your sister, your friend, your brother, your grandchildren, your neighbour [or] your co-worker. M.E. is an infectious disease that has become a widespread epidemic that is not going away. We must join together, alert the public and demand action (2007, [Online]).
That is what is needed, for people from all over the world to stand up for Myalgic Encephalomyelitis. We must all stand up for the truth, individual physicians, journalists, politicians, human rights campaigners, patients, families and friends of patients and the public – whether they are affected yet by M.E. or not. That is the only way change will occur, through education and people simply refusing to accept what is happening any more.
Yes there are powerful and immensely wealthy vested interest groups out there which will fight the truth every step of the way, but we have science, reality and ethics completely on our side and that is also very powerful. However, for this to be of any use to us, we must first make ourselves aware of the facts and then use them
So what you can do to help is to PLEASE help to spread the truth about Myalgic Encephalomyelitis and try to expose the lie of ‘CFS.’ You can also help by NOT supporting the bogus concepts of ‘CFS,’ ‘ME/CFS,’ ‘subgroups of ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ and Myalgic ‘Encephalopathy.’ Do not support groups which promote these concepts. Do not give public or financial help to our abusers.
This appalling abuse and neglect of so many severely ill people on such an industrial scale is truly inhuman and has already gone on for far too long.
People with M.E. desperately need your help.
For more information about the medical and political facts of M.E. see: What is Myalgic Encephalomyelitis? Extra extended version, Who benefits from 'CFS' and 'ME/CFS'?, The misdiagnosis of CFS, Why the bogus disease category of ‘CFS’ must be abandoned, Smoke and mirrors, M.E. The Medical Facts - Extended, The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List, Testing for Myalgic Encephalomyelitis and Putting research and articles into context.
To read a list of all the articles on this site suitable for different groups such as M.E. patients, carers, friends and family, the ‘CFS’ misdiagnosed, doctors or severe M.E. patients and so on, see the Information Guides page.
All of the information concerning Myalgic Encephalomyelitis on this website is fully referenced and has been compiled using the highest quality resources available, produced by the world's leading M.E. experts. More experienced and more knowledgeable M.E. experts than these – Dr Byron Hyde and Dr. Elizabeth Dowsett in particular – do not exist. Between Dr Byron Hyde and Dr. Elizabeth Dowsett, and their mentors the late Dr John Richardson and Dr Melvin Ramsay (respectively), these four doctors have been involved with M.E. research and M.E. patients for well over 100 years collectively, from the 1950s to the present day. Between them they have examined more than 15 000 individual (sporadic and epidemic) M.E. patients, as well as each authoring numerous studies and articles on M.E., and books (or chapters in books) on M.E. Again, more experienced, more knowledgeable and more credible M.E. experts than these simply do not exist.
This paper is merely intended to provide a brief summary of some of the most important facts of M.E. It has been created for the benefit of those people without the time, inclination or ability to read each of these far more detailed and lengthy references created by the world’s leading M.E. experts. The original documents used to create this paper are essential additional reading however for any physician (or anyone else) with a real interest in Myalgic Encephalomyelitis. For more information see the References page.
Before reading this research/advocacy information, 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/articles and books 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 (etc.) 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.
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.
“People in positions of power are misusing that power against sick people and are using it to further their own vested interests. No-one in authority is listening, at least not until they themselves or their own family join the ranks of the persecuted, when they too come up against a wall of utter indifference.’ Professor Hooper 2003
‘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 term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination. Professor Malcolm Hooper 2006
M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis. It has an UNIQUE Neuro-hormonal profile. .Dr Elizabeth Dowsett
M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is less fulminant than MS but more generalized. M.E. is less fulminant but more generalized than poliomyelitis. This relationship of M.E.-like illness to poliomyelitis is not new and is of course the reason that Alexander Gilliam, in his analysis of the Los Angeles County General Hospital M.E. epidemic in 1934, called M.E. atypical poliomyelitis. Dr Byron Hyde 2006
The vested interests of the Insurance companies and their advisers must be totally removed from all aspects of benefit assessments. There must be a proper recognition that these subverted processes have worked greatly to the disadvantage of people suffering from a major organic illness that requires essential support of which the easiest to provide is financial. The poverty and isolation to which many people have been reduced by ME is a scandal and obscenity. Professor Malcolm Hooper 2006
‘Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would 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’ Dr Byron Hyde 2003
Note that this list may contain some references which are not directly referenced in this paper (as this list also serves as a reference list for several other papers).
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Copyright © by Jodi Bassett January 2009 on http://www.hfme.org/
This version updated May 2009
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