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"Where
the one essential characteristic of M.E. is acquired CNS
[central nervous system] dysfunction,
that of CFS is primarily chronic fatigue." |
Dr. Byron Hyde of the
Nightingale
Research Foundation makes the above very simple yet
profound statement in his essay,
The Complexities of Diagnosis (Chapter 3 in
Handbook of Chronic Fatigue Syndrome).
While just about all patients with M.E. will fit the
definition for CFS, not all of those with CFS will fit the
definition for M.E. (But technically, the
CDC CFS definition excludes those patients with other serious
illnesses that include fatigue as a symptom. Therefore a patient formally diagnosed with M.E.,
a serious neurological illness of CNS dysfunction - debilitating fatigue
being merely one of
MANY disabling symptoms - would be ruled out of the CFS definition.
See Dr.
Hyde's comment in
sidebar.) If a patient does not fit the definition for M.E.
and is given a diagnosis of CFS without further investigation into
the cause of the symptoms, it would be tragic if a treatable
illness was missed. And this has happened on numerous
occasions (see
below for examples). For a
more complete understanding, see the
Definitions pages,
where the various definitions list diagnostic requirements.
ME and CFS are described by some as
a "medically unexplained" illness with no biomarkers. Do
not accept this; it is far from the truth. The
research cited on our Research pages
and
other
websites, as well as specialized and more in-depth testing
as suggested in the
Consensus Document
(listed on the Test Abnormalities
page of this website) and in the
Nightingale Definition explain many of the symptoms ME and CFS-labeled patients
suffer - tests that, when interpreted together, can
give the patient and doctor a more complete picture of what's
going on in patients' bodies. It may also help differentiate
whether the patient has M.E., or chronic fatigue arising from some
other serious illness that may be treatable.
Descriptions are as
individual as the patient
There are as many descriptions
of this disease as there are patients, because symptom prominence
varies from patient to patient. But they all will have a
common theme: crushing exhaustion that never goes away, no matter
how much you rest; that the simplest things most people take for
granted physically and mentally now seem like insurmountable
tasks. For example, taking out the trash has become like a
march up a mountain, or deciding what you need at the grocery
store makes your brain swirl like a page-long physics equation.
And once you have tackled one or two of those chores, you feel an
overwhelming compulsion to lie down and rest, even though you know
it will do little good. And usually there is widespread
muscle pain that seems to radiate right out of the spine and into
the muscles throughout some or all parts of the body. A
severe hangover that never goes away, that varies in intensity
day-to-day, even hour-to-hour, is how ME and CFS are often
described, or "the flu that never goes away," year after year.
Add to that many of the symptoms on the
Symptoms List of this
website - some coming and going or waxing and waning, others ever-present, always
aggravated by tasks you used to give barely a passing thought to - and you have a person in a state of debility that has been
compared by researchers and clinicians to MS, cancer and AIDS.
Many scientists would describe
ME or CFS in less personal, more technical terms. Words like "post-exertional
malaise" and "neurocognitive impairment" sound fairly
important, but simply do not convey what the patient is really
experiencing. But the clinicians and researchers who have
collectively worked with thousands of ME and CFS-labeled patients know that, "There is no word in
the the English lexicon that describes the lack of stamina, the
paucity of energy, the absolute malaise and turpitude that
accompanies this illness." (-Dr. Charles Lapp-)
Then what's the difference
between M.E. and CFS?
M.E. experts from the U.K.,
U.S.,
Canada, Australia and many other countries who
have studied this disease have stated that it's the
definitions
that determine the diagnosis. The current
Consensus Document
and most M.E. definitions (Ramsay,
Dowsett
and historic) require the major
criteria of severe muscle fatigue following minimal exertion with
prolonged recovery time, and
neurological disturbances, especially
autonomic, cognitive and sensory functions, and variable
involvement of
cardiac and other systems, with a prolonged
relapsing course. This is a very specific list of criteria,
and a major point to note is that the CNS (central nervous system)
dysfunction of M.E. can be measured. (See
below.)
Alternately,
CFS definitions
present the major criterion of fatigue that lasts 6 months and
reduces the level of function by at least 50%. Post-exertional malaise
and neurological abnormalities are considered minor and optional criteria.
So this broad definition could encompass any of many illnesses
in which fatigue plays a role. Fatigue is not only a symptom
of numerous illnesses, but it is something experienced by normal,
healthy people. And there are no reliable objective ways to
measure fatigue.
Dr. Byron
Hyde, author of the
Nightingale Definition of M.E. states that, "I do not describe a patient as having M.E.
unless there is an abnormal SPECT. If the SPECT is normal,
I often repeat it along with xenon SPECT. If the brain
scans remain normal, I conclude that it is unlikely to be M.E.
I then refer to the patient as a CFS patient and search for
other causes of the fatigue syndrome." (See examples of
SPECT,
xenon SPECT and other neuroimages of ME and CFS patients on the
Neurology Research
page.)
Dr. Hyde
has described patients that have come to him with a "CFS" or
psychiatric diagnosis that he has investigated more thoroughly.
Some he has diagnosed with M.E. after thorough interview,
including determining acute or gradual onset, neurological,
cardiac and other screening. But in many others he has
found underlying, treatable causes for their debilitating
fatigue. Some examples he gives are:
1) One man
came to him diagnosed as a psychiatric patient which Dr. Hyde
initially agreed with, due to the man's obvious irrational
behavior during Dr. Hyde's interview with him. The man
said he slept a lot, was still tired after sleeping and felt he
had "chronic fatigue syndrome," since he met the CDC CFS case
definition criteria. Dr. Hyde simply listened to the man
and observed his behavior over the course of two hours. He
gave the man a requisition for a few tests which within
days revealed he was severely diabetic with extreme
hyperlipidemia (high cholesterol/triglycierides, etc.). Within
weeks of beginning treatment, the man was behaving rationally,
and it was further determined he had had a recent myocardial
infarction (heart attack).
2) A woman
from the U.S. who had been diagnosed with "CFS" by several ME/CFS
physicians came to Dr. Hyde with significant brain dysfunction
and overwhelming fatigue. He had Doppler tests done on her
the same day that found "80% obstruction of both internal
carotids, and complete obstruction of the basilar artery feeding
the brain." Internists, neurologists and ME/CFS
specialists in the U.S. had all missed the obvious. "The
obstruction in one of the arteries was removed and she
improved."
Drs. Hyde,
Dowsett and others state that doctors should also take a
complete patient history to determine other significant factors
that distinguish M.E. from CFS and other fatiguing illnesses.
(See
sidebar)
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