INTRODUCTION TO M.E.
Myalgic Encephalomyelitis (ME)
is a neuroimmune disease with serious immune and cardiovascular
abnormalities with resulting serious CNS (central nervous
system) consequences due to brain injury. The disease
snatches the vital life out of patients on the level of diseases
like MS, AIDS, mitochondrial diseases, and cancer. The pain,
cognitive impairment and exhaustion are often literally
unspeakable. Most times ME strikes relatively quickly
(within hours, days, weeks). Once active and productive
children and adults are robbed of vitality, with disability
ranging from completely bedridden to somewhat functional.
Variable disability usually progresses to premature death.
(See Causes of
Death)
The cause of ME is unknown, but collective research
suggests that a triggering initial immune system insult -
usually a virus, but sometimes toxic exposure, bacterial
infection, trauma, or other physical stressors - for unknown
reasons in some patients causes immune system dysfunction
that results in a cascade of CNS damage and a vicious cycle
among interconnected bodywide systems that explains the
many and varied symptoms of M.E.
Myalgic Encephalomyelitis is a
clear-cut diagnosis with tests that can show the
effects of ME such as:
SPECT
and PET Scans,
Natural Killer Cell
Function test,
Rnase-L antiviral dysregulation,
Spinal fluid protein
abnormalities,
and
Blood Flow.
Infectious onset is most commonly observed. Antivirals and
immune modulators have shown promise, but funding for clinical
trials has been scarce. Few patients
have had the resources and professional care to obtain
effective treatments off-label.
Thus, most diagnostic tools and treatments have
been denied to the majority of patients, due in large part to
government and insurance industry politics. As a result,
most patients are left to suffer lifelong disabling chronic
progressive illness, and die significantly earlier than the norm with minimal or no treatment.
Many lose some or all of their livelihoods: jobs, homes, families. Most are
maligned in the same ways that MS and AIDS patients were in
previous decades. Most have significantly shortened life
spans (averaging roughly around age 55) due to complications arising from
ME
- usually cancer or heart failure, and often suicide due to little hope
of treatment for sometimes unbearable pain and prolonged poor
quality of life. And no one is
immune; anyone of any race, age or gender can get ME.
Despite advances in investigation into diseases such as MS
and AIDS, the US government remains in the dark ages of medical
research when it comes to ME Independent researchers
worldwide have long known ME, historically described as Atypical MS, Atypical polio,
epidemic neuromyasthenia. Many other
historic descriptions
have implicated
infectious onset with chronic neurological and multi-system consequences.
(See our Epidemics
and Definitions
pages for ME history.)
During cluster outbreaks in the mid-1980s, the US government ignored
ME
experts, renamed and redefined this illness
in several regions of the US after a common symptom in numerous other
diseases, i.e. fatigue, thus minimizing a disabling, possibly
infectious disease. It was a huge blunder - many claim
deliberate - that has cost many lives, and continues to cause
untold suffering. "cfs" was never accurate and is no
longer viable. Norway's Directorate of Health
apologized for past disregard of ME patients; US and other
countries' health agencies need to follow
Norway's example.
Over
late, the US government has recently elevated ME's priority,
and the US Food and Drug Administration (FDA) now considers ME/cfs
as
"serious and life threatening", finally allowing treatments
to be fast-tracked, after decades of delay.
ME has been classified as a neurological
disease in the World Health Organization's
International Classification of Diseases since 1969. It
is one of our goals is for this fact to
become common knowledge in the medical community.
Thankfully, there are many private and independent
researchers in the US and abroad who are bringing to
light the seriousness and severity of the neuroimmune, cardiovascular,
endocrine, gastrointestinal and other body wide system damage
found in ME patients. Better diagnostic tools and
treatments are finally being developed.
The pages of this website describe just a few research
findings, and attempt to summarize the early discoveries that
have led researchers to the present. They also offer
information to patients and doctors, and direct the reader to
more comprehensive information sources about ME and "cfs".
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 -
"Hopefully one day, my
dream is that our medical community will produce a
formal apology to the patients that—not having
believed them all these years—they are facing a real
illness." -Dr.
Jose Montoya
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