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Note:
In
this website, we firmly support the distinction between ME and CFS
as stated in
The Nightingale Definition of Myalgic Encephalomyelitis (M.E.).
However, we
occasionally use the proposed interim acronym "ME/CFS"
to reflect the current but ever-changing state of research of this
disease - that is, M.E. referring to historically defined M.
Encephalomyelitis (Acheson, Ramsay, Dowsett,
Richardson, etc.), also as referred to
in the peer-reviewed Canadian and
Pediatric
definitions, and as recognized as code G93.3 by the World Health
Organization (WHO). We do NOT recognize or promote the term M. Encephalopathy, as referred to
casually and sometimes professionally by a few groups but is NOT
recognized by any WHO code, as we feel it only adds to the
confusion that has hindered research into the recognized
disease, M. Encephalomyelitis. (It appears for now the
confusion and debate about terminology will continue until more is known about this entire group of neurol-immune illnesses.)
Unfortunately, much of the research has been conducted
under the "chronic fatigue syndrome" and "fatiguing illnesses"
umbrella, using sub-standard "CFS" research definitions. Thus, one of our ultimate goals
is to increase awareness that Myalgic Encephalomyelitis (M.E.) is
a separate, distinct and long-defined clinical entity, causing severe and prolonged
disability, distinguishable from a host of other
fatiguing illnesses, with unique objective and subjective
features,
with prevalence and severity in the U.S. and worldwide of a
magnitude that is deserving of its own research and diagnostic
categories.
We hope this website will help give patients, caregivers and
the general public a better understanding of this disabling
disease and the many issues that surround it.
Dr. Vance Spence:
"At present, the
composite term ME/CFS is used, though the conjunction of the two
terms is still problematic."
Dr. John
Greensmith explains: “M.E. is
recognised by the World Health Organisation as a neurological
illness, for which the physical cause is as yet unknown and is
categorised differently from Chronic Fatigue Syndrome.
Bundling them [fatiguing illnesses] all together weakens any research experimental
design, dilutes and distorts the findings, making it difficult, if
not impossible, to generalise to any
one particular illness and, therefore, hampers progress towards
finding an appropriate treatment or cure for every one of them,
packaged under the controversial umbrella term CFS, not just M.E."
(Read further
commentary on this subject by Dr. Greensmith in the
right sidebar of the ME/CFS Explained page.)
"Do not for one
minute believe that CFS is simply another name for Myalgic
Encephalomyelitis (M.E.). It is not. Though CFS is
based upon a typical M.E. epidemic, in my opinion it has always
been a confused and distorted view of reality." -
Dr. Byron Hyde
"...there are a
number of unique characteristics that differentiate ME from CFS...."
-Dr. Julie Gerberding, Director US Centers for Disease Control
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