Wednesday, May 9, 2007

The Myths about M.E. and the symptoms of M.E.

The myths about M.E. and the symptoms of M.E. written by Jodi Bassett, May
2007

Because of the vast amount of inaccurate information being propagated about
M.E. by various vested interest groups (helped immeasurably by the creation
of a number of vague umbrella terms such as 'CFS' 'ME/CFS' 'CFS/ME' 'CFIDS'
and Myalgic 'Encephalopathy' etc.) it is important to explain briefly what
are the myths about M.E., and the symptoms of M.E.

M.E. has nothing to do with being tired all the time. If you are very
fatigued for an extended period of time this does not mean you are having a
'bout' of M.E. To suggest such a thing is no less absurd than to say that
prolonged fatigue means you are having a 'bout' of multiple sclerosis,
Parkinson's disease or Lupus. If you are constantly fatigued you do not have
M.E. no matter how severe or prolonged your 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.

There are a number of post-viral fatigue states or fatigue 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, the
science is very clear on this point. People suffering with any of these
post-viral fatigue states or fatigue syndromes do not have M.E. M.E. is also
not the same condition as Lyme disease, athletes over-training syndrome,
burnout, depression, somatisation disorder, candida, multiple chemical
sensitivity syndrome or Fibromyalgia, or indeed any other illness. 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).

M.E. is also not defined by 'fatigue following exertion which can last up to
24 hours' as the bogus definitions of 'CFS' describe. Fatigue following
activity (or post-exertional fatigue or malaise) is a common symptom of a
large number of different illnesses - but what is happening in M.E. is quite
different. Overexertion does not cause fatigue in M.E. but instead a
worsening of the severity of the illness generally and of various
neurological, cognitive, cardiac, cardiovascular, immunological, muscular
and gastrointestinal (and other) symptoms. The severity of these symptoms
can range from mild to severe to life-threatening. The effects of
overexertion can last for hours, days, weeks or even many months in M.E., or
can even be permanent. The onset of these post-exertional effects can be
significantly delayed so that very often the worsening of the illness caused
by overexertion has not even begun within 24 hours in M.E., let alone been
completely resolved in that time. The reaction people with M.E. have to
physical and mental activity, sensory input and orthostatic stress not only
has nothing to do with mere fatigue (or 'malaise') but is in fact unique to
M.E. in a number of ways.

This reaction is so abnormal in fact that exercise testing is one of the
series of tests which can be used to help confirm a M.E. diagnosis, as are
various tests which measure the abnormal responses to orthostatic stress
seen in M.E. This is simply not the case in post-viral fatigue syndromes,
Lyme disease, Fibromyalgia and so on. These patient groups do not exhibit
the same measurable pathological abnormalities as M.E. patients in these
(and other) tests. Recent research has also shown that postural stress
exacerbates cardiac insufficiency in M.E. and that this cardiac
insufficiency is the cause of many of the symptoms and much of the
disability of M.E. This pathology is also not seen in any of those illnesses
causing fatigue after exertion which are commonly misdiagnosed as 'CFS.' The
way people with M.E. respond to physical activity and orthostatic stress
(etc.) is profoundly different than in these other illnesses; it is an
entirely different problem, of a much greater magnitude.

What defines M.E. is not 'chronic fatigue' but a specific type of acquired
damage to the brain. M.E. is an acutely acquired illness with multi system
involvement 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.)

This diffuse brain injury is initiated by a virus infection which targets
the brain; M.E. represents a major attack on the central nervous system
(CNS) by the chronic effects of a viral infection. M.E. is an infectious and
primarily neurological disease process which occurs in epidemic and sporadic
forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934.
M.E. is primarily neurological, but because the brain controls all vital
bodily functions every bodily system is affected and so symptoms can also be
manifested by virtually all bodily systems including: cognitive, cardiac,
cardiovascular, immunological, endocrinological, respiratory, hormonal,
gastrointestinal and musculo-skeletal dysfunctions and damage. Symptoms are
also caused by a loss of normal internal homeostasis in M.E.; the body/brain
no longer responds appropriately to (to varying extents): physical activity,
cognitive exertion, sensory input and orthostatic stress.

At first glance a list of M.E. symptoms it may seem that every symptom
possible is mentioned, but the seemingly random list of symptoms in fact
form unique and distinct patterns - they are anything but 'random' for those
with knowledge of the illness and/or of how the illness effects the body's
various systems. Different people have a lot of different symptoms but the
general pattern and evolution of major symptoms are remarkably coherent from
patient to patient in M.E.; they fit a precise pattern that is nearly
identical from one patient to the next.

There is just no other illness that is even remotely like M.E.

M.E. is a distinct, recognisable disease entity which contrary to popular
belief 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. (The usual case of
M.E. is so distinct that people with M.E. can recognise fellow sufferers
almost in an instant.) Although there is (as yet) no single test which can
be used to diagnose M.E. there are a series of tests which can confirm a
suspected M.E. diagnosis. 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. (See Testing for Myalgic Encephalomyelitis for
more information.)

All of this is not simply theory, but is based upon an enormous body of
clinical information which has been published in prestigious peer-reviewed
journals all over the world and spans over 60 years. Confirmation of this
hypothesis is supported by electrical tests of muscle and of brain function
(including the subsequent development of PET and SPECT scans) and by
biochemical and hormonal assays. Newer scientific evidence is increasingly
strengthening this hypothesis. M.E. is neither 'mysterious' nor 'medically
unexplained. Many aspects of the pathophysiology of the disease have,
indeed, been medically explained in volumes of research articles. These are
well-documented, scientifically sound explanations for why patients are
bedridden, profoundly intellectually impaired, unable to maintain an upright
posture and so on.

M.E. affects all races and socio-economic groups and has been diagnosed all
over the world with a similar strike rate to multiple sclerosis. Children as
young as five can get M.E., as well as adults of all ages. M.E. can be
extremely disabling. 25% of M.E. sufferers are severely affected and
housebound and bedbound. In some cases Myalgic Encephalomyelitis can also be
progressive, or fatal. Governments around the world are currently spending
$0 a year on M.E. research.

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Note 1:

For more information about the medical and political facts of M.E. (and for
references) see: Testing for Myalgic Encephalomyelitis, Putting Research and
Articles into Context, The Ultra-comprehensive Myalgic Encephalomyelitis
Symptom List and What is Myalgic Encephalomyelitis?

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Note 2:

Note that many different illnesses may share a percentage of the individual
neurological, gastrointestinal or cognitive features of M.E., (and so on)
but there is no other illness which encompasses each of the specific
neurological, cognitive, immunological, gastrointestinal, cardiac and
cardiovascular, endocrinological, respiratory, hormonal and other features
and symptoms which make up M.E. This specific combination of symptoms is not
seen in any other illness. There are also a number of characteristics of
M.E. which are unique to the illness; most notably the way in which people
with M.E. react to physical and mental activity, and orthostatic stress etc.
and the way in which even low levels of these activities (beyond a person's
individual limits) can negatively affect long-term prognosis. The acute
onset of M.E. also sets it apart from many other illnesses commonly
associated with a gradual onset, as do many other characteristics. See: M.E.
and other illnesses and The misdiagnosis of CFS for more information.

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Note 3:

What is CFS? 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. 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 (a symptom seen in
many illnesses but not a defining feature of M.E. nor even an essential
symptom of M.E.). The 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. CFS
and M.E. are NOT the same. For more information on this topic, including how
the CFS scam also negatively affects the media, doctors and the public etc.,
see: The misdiagnosis of CFS, Smoke and mirrors and Why the disease category
of 'CFS' must be abandoned. The truth about the organic and distinct
neurological illness M.E. must not be allowed to be buried under cover of
'fatigue' and 'CFS' for another 20 years!


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3 comments:

nhd106 said...

h

my78novata said...

great info to sort out

gehi6 said...

Hmm, this is a very interesting description of still another looks like very disabling condition.  I was in the welfare system when I got very ill the last time and even though I did not even start to recover for about a year the only thing I could tie it to was a firm diagnosis of mono, the only clue, but I found through research that a number of people had more trouble with chronic reoccurring mono symptoms than doctors seemed to know about.  I thought it was useless to seek further testing, because rest and limiting activity would restore me in tme to some degree of normalcy.  You have certainly researched all these medical conditions far more deeply than hardly anyone I have run into.  I didn't ever have these exchanges with doctors beause all my diagnoses were so vague as to be useless.  I just kept having to insist that something was still wrong, then they would be reduce to declaring, 'it is all in your mind, then.'  But it stands to reason that encepatlitis and other such maladies could leave the person seriously impaired.  Gerry