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"...The failure to
agree on firm diagnostic criteria has distorted the data base for
epidemiological and other research, thus denying recognition of
the unique epidemiological pattern of myalgic encephalomyelitis."
-Dr. A. Melvin Ramsay-
MYALGIC (muscle pain)
+ ENCEPHALO (relating to the brain)
+ MYEL (relating to the spinal cord)
+ ITIS (inflammation)
= MYALGIC ENCEPHALOMYELITIS
(brain and spinal cord inflammation with muscle pain) |
At the heart of
confusion between ME and CFS lie the research and clinical
definitions. One of our goals in establishing NAME-US.org is
to present a clear understanding of the differences between
Myalgic Encephalomyelitis and the many illnesses that can fall
under the CFS umbrella. It is important to also note that a doctor
uses a clinical definition to diagnose patients, while a
researcher uses a research definition to select subjects for
research studies. While both types of definitions can appear
to be similar at first glance, there can be differences, and it is
in the details and vague areas that problems arise.
As stated in our
Goals, we support and advocate for the
international implementation of the most current and comprehensive
clinical definition,
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical
Working Case Definition, Diagnostic and Treatment Protocols; A
Consensus Document, produced by an eleven-member international
ME/CFS Expert Consensus panel selected by Health Canada, and
published in 2003. This definition places post-exertional
worsening of symptoms and prolonged recovery time after even minor
exertion, and neurological/cognitive manifestations as major
criteria in procuring a diagnosis. We also support
The Nightingale Definition of Myalgic Encephalomyelitis (M.E.),
which states, "...there
is always a measurable and persistent diffuse vascular injury of
the Central Nervous System in both the acute and chronic phases.
Primary M.E. is associated with immune and other
pathologies."
Conversely, the
CDC (Fukuda) definition places emphasis on fatigue, with
neurological signs being minor and optional.
Unfortunately, the most current
research definition used internationally dates back to 1994 (CDC,
Fukuda), which is a "CFS" definition that broadens the research
subjects to include patients that may not necessarily fit the
current and past definitions for ME. The practice of using
the CFS (Fukuda) research definition (and its predecessor, the
Holmes definition) has flooded the research subject pool with many
"fatiguing illnesses" that do not necessarily fit the past
and current definitions for the neurologically defined disease,
ME. This has only served to dilute and muddy research
results into a turbid confusion of mixed results. This also
does a disservice to those patients who do not fit into the
category of the historic ME definitions, the 2003
Consensus Document for ME/CFS and
The Nightingale Definition of Myalgic Encephalomyelitis (M.E.)
by pooling them all under an umbrella of "fatigue", rather than
searching into the specifics that distinguish them from each
other.
(See Dr. John Greensmith's comment on the NAME-US Hompage.)
Thus, we also support and
advocate for the adaptation of the 2003 Consensus Document for
ME/CFS and the 2006 Nightingale Definition to an
international research definition, basing future research on the
disruption of the central nervous system so prevalent in this
disease, rather than on degrees or variations of "fatigue," which
is merely one of many symptoms in this disease. Fatigue is
also a prevalent symptom in many other diseases and illnesses, as
well as a normal physiological state.
The links at the top of the
right sidebar of this page provide an overview of the various
definitions, and hopefully a better understanding of our goal to
refine and consolidate what has been learned in close to a century
about ME.
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Dr. E.G. Dowsett
from
A Rose By Any Other Name
"Historical Background:
The earliest definitions were brief but succinct, based on
clinical observation and accompanied by a checklist of symptoms.
Wallis (1955) provided a concise list with appropriate variations
for children and adolescents, while Ramsay (1956) introduced
the descriptive term (Myalgic Encephalomyelitis), which has stood
the test of time over half a century in the UK, Europe, Canada and
Austrialasia."
"Fatigue States:
These definitions first arose in the USA following the 1984 Lake
Tahoe epidemic (which was misattributed to a Herpes virus
infection). Both the earliest definition (Holmes et al,
1988) and its revision (Fukuda, 1994) elevated tonsillitis,
glandular enlargement and fatigue to unreal importance, while
overlooking the characteristic encephalitic features of the
genuine illness [M.E.]."
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"Clinical descriptions of
diseases have a way of protecting those of us
who are doctors from the intensity of suffering our patients
actually experience.
I have always wished that doctors could learn about disease
directly from patients...."
-Dr. David S. Bell-
The specificity of the CDC-1994
criteria for chronic fatigue syndrome: comparison of health
status in three groups of patients who fulfill the criteria.
Authors: Kennedy G, Abbot NC, Spence V, Underwood C and Belch
JJF
Institution: Vascular Diseases Research Unit, Department of
Medicine, University of Dundee "Conclusions:
Differences in simple, easily performed clinical outcome
measurements can be observed between groups of patients, all of
whom fulfill the CDC-1994 criteria for CFS. It is likely that
their response to treatment may also vary. The specificity of
the CFS case definition should be improved to define more
homogeneous groups of patients for the purposes of treatment and
research."
Read full abstract and comment.
See the
results of
3 research articles by Dr. Leonard Jason comparing patients
using various definitions for ME and CFS.
"Many patients with a diagnosis
of CFS today have non-diagnosed major diseases. These
patients warp any statistical or scientific examination of the
CFS patient. Most of the patients I have seen from Canada,
the United States, or from the United Kingdom with gradual onset
CFS illness have non-diagnosed major medical illness or
anomaly."
-Dr. Byron Hyde-
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