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In the late fall of 1990 I
had fallen ill with Mononucleosis. Unfortunately, this was not to
be diagnosed until the spring of the following year. Meaning, an
illness which is usually experianced for a few weeks became 7-8
months. Some if the the symptoms spoken of below appeared during
and after the mono was on its tail-end. These and new symptoms
continued to become steadily worse over a four-year period. It
was then new symptoms unexpectedly, as well as suddenly, arrived in
1994. After being given a diagnosis of Fibromyalgia from one
specialist and recieving little help, I obtained the name of another
through the Arthris Foundation. After looking over my an outline
I made from the original starting point of the symptoms, how
slowly/quickly each one progressed, what aggrivated them -- not only
confirmed in the Fibromyalgia diagnosis I was recently given...but was
also told I had Chronic Fatigue
Syndrome. Otherwise known the world over,
except from the U.S., as the neurological disease Myalgic
Encephalomyelitis. Further, the specialist commented from what he
saw, the Myalgic
Encephalomyelitis more than likely manifested during the Mononucleosis
viral illness. My primary care doctor agreed as well as others.
I've had this illness for over 15 years now.
Many of us who have M.E. have faced alot of descrimination from our
family, friends, and medical community because, trough no fault of
their own, the illness is grossly misunderstood. There are many
myths and misconceptions. The worst thing anyone can do is
dismess the individuals who struggle with this disease as having
psycological and mental problems which are causing them to be
ill. Mounting evidence has shown time and again Myalgic
Encephalomyelitis is a viable, biologically-based medical illness which
affects nearly every facet of the human bodily system. Suggesting
"excersize and a good diet" will make this illness "go away and all
will be well" is foolhardy. As spoken within the article below as
research has shown excersize not only does little, if any good in many
cases...the individual's overall condition is worsened. Stating
one should maintain a well-balanced diet would be common sense for all
people to consider. However, again, to comment this alone will
bring an ill person back to health with the illness disappeared does
little good. After all, how many persons with medical conditions
such as Cancer, Mutiple Scorolsis, Rheumatoid Arthrits, Diabeties
(Types 1 & II), Lupus, Migraines, GERDS, Scoliosis, Strabismus, and
a great deal of others would be told the same?
As a side note, the above many of theillnesses listed were once
dismissed as caused by emotional stress, or as I term it AIYHS (All In
Yourt Head Syndrome). Some, like Strabismus which is a condition
in which the eyes are unable to align themselves properly and often
become either "crossed" or "walled" (thereby compromising vision
severely), were blamed on the individual themselves at times.
Regarding Migraines, for the most part stress was considered the main
cause. However it wasn't until the '90s and early in this century
they were proven to be caused by a true disorder within the
neurological system. While stress may aggrivate the condition in
some there are a multitude of triggers. (My own are allergerns to
organic materials, sensativities to inorganic materials,
atmospheric/weather changes, barometric changes, ect.)
way to fight against ignorance is with knowledge. Below is a
rather informative article compossed by Jodi Basset regarding this
illness. I encourage readers to visit her website as well as
others -- including those I have listed on my Links page.
While my condition has been listed as moderately-severe
I realize there are others who are in much
more dire need at this period in time. It is for them I have
chosen to post this.
Become informed. Please help stop the widespread abuse and neglect of
What is Myalgic Encephalomyelitis?
Copyright © by Jodi Bassett
2004 on www.ahummingbirdsguide.com
This version updated September 2007
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.
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, ) (Dowsett 1999a, )
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, ) (Hyde 2006, ). The term Myalgic Encephalomyelitis means:
My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis =
inflammation (Hyde 2006, ). 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, ).
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, ).
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, )
(Hooper 2003a, ) (Dowsett 2001b, ).
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, ).
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
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, ). But M.E. and CFS are not synonymous
‘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 2007, ).
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, ) (Hooper 2006, ) (Hooper &
Marshall 2005a, ) (Hyde 2003, ) (Dowsett 2001, ) (Hooper et al. 2001, )
(Dowsett 2000, ) (Dowsett 1999a, 1999b, ) (Dowsett 1996, p. 167)
(Dowsett et al. 1990, pp. 285-291) (Dowsett n.d., ).
* For more
information see Myalgic Encephalomyelitis is not fatigue, or 'CFS'.
Many of the worlds leading M.E. experts have spoken out strongly
against ‘fatigue’ being claimed to be the defining/essential symptom of
M.E. see M.E. is not defined by 'fatigue' to read some of their
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.
So why was the renaming and
redefining of the distinct neurological disease Myalgic
Encephalomyelitis allowed – or indeed designed – 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 incidence of
Myalgic Encephalomyelitis in the late 1970s and the 1980s and 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, ). 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, ) (2001, )
For example, 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. For at least a decade, serious questions
have been raised (and published) 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 view is so financially and politically convenient
and profitable on such a large scale to a number of extremely powerful
corporations and government departments. As 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, ).
Members of the "Wessely school’ in
the UK including Wessely, Sharpe, Cleare and White (etc.), their
counterparts (and sometime collaborators) in the US; Reeves and Straus
(etc. of the CDC) in Australia Lloyd and 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 has
created their own definition of ‘CFS’ (or uses one) which does not
select those with M.E. but instead selects various types of psychiatric
and non-psychiatric fatigue sufferers.
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, ) (Hooper 2006, ) (Hyde 2003, ) (Hooper 2003a, ) (Dowsett
2001a, ) (Hooper et al. 2001, ) (Dowsett 2000, ) (Dowsett 1999a, 1999b,
* To read about
the vast difference between M.E. and CFS (and how such a small (but
powerful) group of vested interest psychiatrists have come to influence
the opinions of the worldwide medical community about M.E.) see: Smoke
and mirrors and also A Brief History of Myalgic Encephalomyelitis &
An Irreverent History of CFS by Dr Byron Hyde
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 M.D. explains, the patient has:
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, ).
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 MD 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, ).
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, ) (Hooper 2006, ) (Hyde 2003, ) (Hooper
2003a, ) (Dowsett 2001a, ) (Dowsett 2000, ) (Dowsett 1999a, 1999b, )
* An additional
note on ‘fatigue’: Just as some M.E. sufferers will experience other
minor and non-essential symptoms such as vomiting or night sweats some
of the time, but others will not, the same is true of fatigue. The
diagnosis of M.E. is determined upon the presence of certain
neurological, cognitive, cardiac, cardiovascular, immunological,
endocrinological, respiratory, hormonal, muscular, gastrointestinal and
other symptoms (and so on) – the presence or absence of mere ‘fatigue’
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.
encephalomyelitis is a systemic acutely acquired illness initiated by a
virus infection which is characterised by damage to the brain stem
which results in dysfunctions and damage to many of the body’s vital
systems and a loss of normal internal homeostasis. M.E. can occur in
both epidemic and sporadic forms and can be extremely disabling and in
some cases the disease is fatal. M.E. is a chronic/lifelong disease
that affects adults and children. If all tests are normal, then a
diagnosis of M.E. cannot be correct.
Fatigue Syndrome is a man-made construct created in the US in 1988. It
is not a distinct disease, but a mere diagnosis of exclusion based on
the presence of the symptom of fatigue. If serious abnormalities are
found on testing, a person no longer qualifies for a diagnosis of
‘CFS.’ In essence, every diagnosis of CFS can only ever be a
misdiagnosis. A diagnosis of ‘CFS’ does not mean a person has any
distinct disease, including M.E.
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.
* For more
information on the name Myalgic Encephalomyelitis (and the problems
with some of these other terms including ME’opathy) see: Meitis? A
slender string to our bow, The Terminology of ME & CFS, and ME and
CFS, The Definitions. See On the name MEitis for more articles.
* For more
information on why 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), see: The misdiagnosis of CFS, Why the disease category of
‘CFS’ must be abandoned and Smoke and Mirrors
What does the
term ICD-CFS mean?
The definitions of CFS do not
define M.E. but because an outbreak of M.E. in the US was labelled as
being ‘CFS’ at the time (and for other reasons to do with political
considerations), some researchers have produced valuable research into
M.E. under the name ‘CFS.’ The vast majority (an estimated 95%) of
‘CFS’ research however, does not involve M.E. patients and is not
relevant in any way to M.E. patients. So sometimes the new term
‘ICD-CFS’ is used to refer to those studies and articles which while
they use the term ‘CFS’ do relate in some way (in whole or in part) to
people with authentic Myalgic Encephalomyelitis – as per the World
Health Organization’s classification of M.E. as an organic neurological
disorder at G.93.3
* It should be
noted however, that virtually all of the research which does relate to
M.E. but which uses the term ‘CFS’ (or ME/CFS, or CFIDS etc.) is also
contaminated in some way by CFS propaganda. For more information on
some of the most common inaccuracies and ‘CFS’ propaganda included in
genuine ‘ICD-CFS’ research, see the paper: Putting Research and
Articles on Myalgic Encephalomyelitis into Context
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.
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
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, ) (Hyde 2006, ) (Hyde 2003, ) (Dowsett
2001a, ) (Dowsett 2000, ) (Dowsett 1999a, 1999b, ) (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, ) (Dowsett &
Ramsay n.d., pp. 81-84) (Richardson n.d., pp. 85-92).
* What is
Homeostasis? Homeostasis is the property of a living organism, to
regulate its internal environment to maintain a stable, constant
condition, by means of multiple dynamic equilibrium adjustments,
controlled by interrelated regulation mechanisms. Homeostasis is one of
the fundamental characteristics of living things. It is the maintenance
of the internal environment within tolerable limits.
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, ) (Hyde 2006, ) Individual symptoms of Myalgic Encephalomyelitis
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, hyperacuity,
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
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
A. People with M.E. are unable to
maintain their pre-illness activity levels. This is an acute change;
M.E. patients can only achieve 50%, or less, of their pre-illness
activity levels post-M.E.
B. People with M.E. are limited in
how physically active they can be but they are also limited in similar
way with; cognitive exertion, sensory input and orthostatic stress.
C. When a person with M.E. is
active beyond their individual (physical, cognitive, sensory or
orthostatic) limits this causes a worsening of various neurological,
cognitive, cardiac, cardiovascular, immunological, endocrinological,
respiratory, hormonal, muscular, gastrointestinal and other symptoms.
D. The level of physical activity,
cognitive exertion, sensory input or orthostatic stress needed to cause
a significant or severe worsening of symptoms varies from patient to
patient, but is often trivial compared to a patient’s pre-illness
tolerances and abilities.
E. The severity of M.E. waxes and
wanes throughout the hour/day/week and month.
F. The worsening of the illness
caused by overexertion can be acute, but often does not reach its peak
until 24 - 48 hours (or more) later.
G. If people with M.E. push past
their individual limits too deeply or too often, the effects of
overexertion can also accumulate over longer periods of time and lead
to disease progression, or death.
H. The activity limits of M.E. are
not short term, a gradual (or sudden) increase in activity levels
beyond a patient’s individual limits can only cause relapse, disease
progression or death in patients with M.E.
I. The symptoms of M.E. do not
resolve with rest. The symptoms and disability of M.E. are not just
caused by overexertion, there is also a base level of illness which can
be quite severe even at rest.
J. Repeated overexertion can harm
your chances for future improvement in M.E. M.E. 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.
L. Not every M.E. sufferer has
‘safe’ activity limits within which they will not exacerbate their
illness, this is not the case for the very severely affected.
the onset of Myalgic Encephalomyelitis?
M.E. expert Dr Byron Hyde explains
[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 ).
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
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 – and there is
very good evidence to suggest that the culprit is an enterovirus (Hyde
2006, ) (Hyde 2007, ) (Hooper 2006, ) (Hooper & Marshall 2005a, )
(Hyde 2003a, ) (Dowsett 2001a, ) (Hooper et al. 2001, ) (Dowsett 2000,
) (Dowsett 1999a, 1999b, ) (Ryll 1994, ).
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 the 1930’s. In 1934 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
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, ) (Hyde 1998, ) (Hyde 2006, ). 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, ) (Hyde 1998, ).
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, ). 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, )
(Dowsett 1999a, ).
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. A significant number
of the world’s leading M.E. experts believe that M.E., like
poliomyelitis, is caused by an enterovirus. The evidence which exists
to support this theory is compelling (Hyde 2007, ) (Hyde 2006, ). An
enterovirus would explain 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, ) (Hyde 2006, ) (Hyde 2003,
) (Dowsett 2001a, ) (Dowsett 2000, ) (Dowsett 1999a, 1999b, ) (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, ).
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.’ (1999b, ) 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
Encephalomyelitis difficult to diagnose? What tests can be used to
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, ) (Hyde 2006, ) (Hooper et al.
2001, ) (Chabursky et al. 1992, p.22). As M.E. expert Dr Byron Hyde MD
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, ).
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, ) (Hyde 2006, ) (Hooper & Marshall 2005a, ) (Hyde 2003, )
(Dowsett 2001a, ) (Dowsett 2000, ) (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, ) (Dowsett n.d., ) (Dowsett & Ramsay
n.d., pp. 81-84) (Richardson n.d., pp. 85-92).
scientific tests are available which can aid in the diagnosis of M.E.
(and easily prove the severe abnormalities across many different bodily
systems seen in M.E.), but unfortunately many patients are not given
access to these tests. For more information on the lack of access to
appropriate testing for M.E. patients see: The Montague/Hooper Paper
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, ) (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, ). (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 )
(Hyde 1992, pp. x - xxi).
* The CDC have
recently released vastly inflated estimates for ‘CFS’ but it should be
noted that the number of people suffering with mild fatigue has no more
relevance to patients with M.E. to those with MS or AIDS or any other
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 ).
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, ).
Many different organic
abnormalities have been found in M.E. patients (in peer reviewed
research). Patient advocates Margaret Williams and Eileen Marshall
* there is
evidence of disrupted biology at cell membrane level
* there is
evidence of abnormal brain metabolism
* there is
evidence of widespread cerebral hypoperfusion
* there is
evidence of central nervous system immune dysfunction
* there is
evidence of central nervous system inflammation and demyelination
* there is
evidence of hypomyelination
* there is
evidence that Myalgic Encephalomyelitis is a complex, serious
multi-system autoimmune disorder (in Belgium, the disorder has now been
placed between multiple sclerosis and Lupus)
* there is
evidence of significant neutrophil apoptosis
* there is
evidence that the immune system is chronically activated (eg. the
CD4:CD8 ratio may be grossly elevated)
* there is
evidence that natural killer (NK) cell activity is impaired (ie.
* there is
evidence that the vascular biology is abnormal, with disrupted
* there is
novel evidence of significantly elevated levels of isoprostanes
* there is
evidence of cardiac insufficiency and that patients are in a form of
cardiac failure (which is exacerbated by even trivial levels of
physical activity, cognitive activity and orthostatic stress)
* there is
evidence of autonomic dysfunction (especially thermodysregulation;
frequency of micturition with nocturia; labile blood pressure; pooling
of blood in the lower limbs; reduced blood volume (with orthostatic
tachycardia and orthostatic hypotension. Findings of a circulating
blood volume of only 75% of expected are common, and in some patients
the level is only 50% of expected.)
* there is
evidence of respiratory dysfunction, with reduced lung function in all
* there is
evidence of neuroendocrine dysfunction (notably HPA axis dysfunction)
* there is
evidence of recovery rates for oxygen saturation that are 60% lower
than those in normal controls
* there is
evidence of delayed recovery of muscles after exercise. (Affecting all
muscles including the heart.)
* there is
evidence of a sensitive marker of muscle inflammation
* there is
evidence that the size of the adrenal glands is reduced by 50%, with
reduced cortisol levels
* there is
evidence of at least 35 abnormal genes, (these are acquired genetic
changes, not hereditary), specifically those that are important in
metabolism; there are more abnormal genes in Myalgic Encephalomyelitis
than there are in cancer
* there is
evidence of serious cognitive impairment. (Worse than occurs in AIDS
* there is
evidence of adverse reactions to medicinal drugs, especially those
acting on the CNS
* there is
evidence that symptoms fluctuate markedly from day to day and even from
hour to hour (2006, )
(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
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
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
13. A mitochondrial disease
14. A metabolic disorder
15. A musculo-skeletal
16. A neuroendocrine disease
17. A seizure disorder
18. A sleep disorder
19. A gastrointestinal
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, ) (Hooper et al. 2001, )
(Cheney 2007, [video recording]) (Ramsay 1986, )
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
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
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, ) (Hyde 2007, ) (Hooper 2006, ) (Hooper & Marshall
2005a, ) (Hyde 2003a, ) (Dowsett 2001a, ) (Hooper et al. 2001, )
(Dowsett 2000, ) (Dowsett 1999a, 1999b, )
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.
* See Research
and Articles in Context for more information about research into M.E.
and the challenges involved. See the Donations page to make a donation
towards M.E. research and advocacy.
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, ). 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, ).
* These brief
comments on the effects of CBT and GET are taken from the more detailed
paper: The effects of CBT and GET on patients with Myalgic
Encephalomyelitis, see this paper for more information.
* For more
information about the effects of overexertion on M.E. patients,
including statements/research from some of the world’s leading M.E.
experts about why overexertion is so physically harmful, see: Smoke and
Mirrors. (This paper also includes links to many different patient
accounts of the effects of overexertion on people with M.E.).
* A recent
example of a M.E. sufferer being taken into psychiatric care against
their will is the case of Sophia Mirza in the UK. Tragically, Sophia
died of her illness shortly after being wrongly sectioned under the
Mental Health Act. Sophia was severely ill with M.E. and bedbound but
she was refused even basic medial care, and this is believed to have
contributed greatly to her death. For more information on this tragic
case, and entirely avoidable death, see: Inquest Implications,
Civilization: Another word for barbarism and The Story of Sophia and
M.E. For more information about forced exercise and other ‘treatments’
used on M.E. patients see the 100+ page CBT and GET Database.
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
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 )
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, ). 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
* For more
information on severe M.E. see The severity of M.E. and M.E. Fatalities
* It should
also be noted that even those patients with moderate M.E. are far more
severely affected than many patients with a variety of other illnesses.
Of course severe M.E. is even worse, but moderate M.E. can also cause
severe symptoms and a relatively high level of disability and
suffering, compared to many other illnesses.
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
M.D. 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).
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, ).
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, ). 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.
Where do we go
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/s 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
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, )
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
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
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, ).
That is what is needed; people
from all over the world to stand up for the truth about Myalgic
Encephalomyelitis. 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.
So what you can do to help is to PLEASE help to spread the truth about Myalgic
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
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