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The
National
Alliance for Myalgic Encephalomyelitis
was established
to address the issues of recognition and definition, and to raise
awareness of this
devastating neuroimmune disease that has afflicted nearly a
million people in the U.S.
and millions worldwide.
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"M.E., whether we are discussing
primary or
secondary forms, involves a significant diffuse
injury of the Central Nervous System
and an associated injury of the Immune System."
-Dr.
Byron Hyde-
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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, NOT M. Encephalopathy, as referred to
casually and sometimes professionally by a few groups but is NOT
recognized by any WHO code. (It appears for now the
confusion and debate about terminology will continue until more is
known about this entire group of neurological 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.
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 -
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Grassroots Congressional
Action for 2008
Myalgic Encephalomyelitis is a
neurological disease with serious CNS consequences due to brain
injury with serious cardiovascular and immunological consequences.
The disease snatches the vital life out of patients on the level
of other diseases like MS, AIDS, and mitochondrial myopathies.
Myalgic Encephalomyelitis is a
clear-cut, definitive diagnosis with tests that can show the
effects of M.E. such as: SPECT & PET Scans, Natural Killer Cell
Function test, Rnase-L antiviral dysregulation, and Blood Flow.
What is needed is recovery of the clearly delineated
Dr. Melvin Ramsay criteria
& focus which has been carried through by
Dr. Byron Hyde &
augmented by the 2003
Consensus Criteria. And also, it needs to be common knowledge
that M. E. is a neurological disease like MS and has been
classified as such in the World Health Organization's
International Classification of Diseases since 1969, no matter
the denial in the US.
Ignoring a real disease, Myalgic Encephalomyelitis, and
naming an illness after a common symptom in numerous other
diseases is no longer viable or truthful. And it cannot be papered
over by any large publicity campaign nor a flawed CDC gene study
which highlights "allostatic stress."
Read more, and
Click here to participate!
Issues Involving the Name Change Recommendations
"Researchers and clinicians need to
be aware of the strong sentiments that patients have for [the
name, definition and classification of] Myalgic Encephalomyelitis,
which is historically correct (Ramsay, 1981) and has been used
internationally (Hyde, Goldstein, & Levine, 1992)."
- Leonard A. Jason,
Nicole Porter, Jennifer Okasinski, & Mary Benton - DePaul
University -
Dr. David S. Bell
writes: "In recent years there has been, in
my opinion, an apathy that has crept in and pervaded some parts of
the support community. Perhaps it has been due to ill health,
perhaps the patient community is giving up, discouraged by a
perceived lack of progress. Maybe it is that the old-timers are
just getting older. But whatever the reason, people need to
remember that nearly everything good that has come to patients
with [ME] CFS has come via the support community. So, support
people, don’t give up. Don’t get discouraged. Follow your hopes/dreams/ passions,
and if this includes activism,
get
involved." |
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