INTRODUCTION TO M.E.
MYALGIC (muscle pain)
+
ENCEPHALO (relating to the brain)
+ MYEL (relating to the spinal cord)
+ ITIS (inflammation)
= MYALGIC ENCEPHALOMYELITIS
= Brain
and spinal cord inflammation with associated muscle pain |
OVERVIEW
Myalgic Encephalomyelitis (ME)
is a chronic degenerative neuro-immune disease described in
medical literature as early as 1935. A child or adult with
ME has 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
unrelenting pain,
cognitive impairment and exhaustion of ME are often literally
unspeakable. Most times ME strikes relatively quickly
(within hours, days, weeks). Once active and productive
children and adults are suddenly robbed of vitality, with disability
ranging from completely bedridden to somewhat functional.
Variable disability and lack of treatments results in lowered or
poor quality of life, and usually progresses to premature death
due to direct and indirect complications of the disease.
Among the leading causes of death are heart failure and cancer,
average life span 58.7 and 47.8 respectively, which is
considerably younger than the general population (heart failure,
83.1; cancer, 72 - See
Mortality).
Direct and indirect costs to society (US):
$18 - $24 Billion annually.
CAUSE
The cause of ME is unknown, but collective research
suggests that an initial immune system insult - usually a virus,
but sometimes toxic exposure, bacterial infection, trauma, or
other physical stressors - trigger a cascade of immune system dysfunction
that results in a cascade of CNS damage. A vicious cycle
among these and other interconnected bodywide systems explains the
many and varied symptoms of M.E.
DIAGNOSIS
Since 1969, Myalgic
Encephalomyelitis has been listed in
Diseases of the Nervous System of the
WHO ICD (World Health Organization International
Classification of Diseases), current diagnostic code,
G93.3 (323.9 in the US). Just a few among many tests that can show the
effects of ME are:
SPECT
and PET Scans,
Natural Killer Cell
Function test,
Rnase-L
enzyme dysregulation,
Spinal fluid protein
abnormalities,
Blood Flow,
and Serial
Exercise tests.
Infectious onset is most commonly observed. The hallmark
symptom is Post-Exertional
Neuroimmune Exhaustion (PENE, in lay terms: post-exertional
major exacerbation of symptoms) - exertion being anything from
talking or listening, to walking across a room to going to the grocery store, depending
on an individual's disease length and severity. Hypersensitivity to even minor sensory stimulation, an
almost universal ME symptom, can cause PENE. Orthostatic
intolerance (symptoms worsen in an upright position) is also
common. These and
many more symptoms
usually result in the patient being bedbound or homebound.
PENE can be objectively documented by
serial exercise tests,
can last anywhere from days to weeks, and can be immediate or
delayed by 24 hours or more. Symptoms can vary from hour
to hour, day to day, month to month. Aerobic activity and
repeated activity beyond an individual's threshold worsens
prognosis. (See
Ramsay)
TREATMENT
Antivirals and
immune modulators have shown exciting promise, but funding for clinical
trials has been scarce. Few patients
have had the resources and professional care to obtain
effective treatments off-label.
Otherwise, treatments are palliative at best - sleep
aids, pain killers, nutritional supplements, and most effective,
according to many patient surveys, rest and slow pacing of
alternating mild activity and rest. Even then, most
patients report 30% or less of their pre-illness function and
productivity.
NO
TREATMENTS SINCE 1935?! WHY NOT?!
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. And as a result, most have significantly
shortened life spans (averaging roughly around age 57) due to
complications arising from ME - usually cancer, heart failure,
other organ failure, various complications, 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 of or attempted to treat ME, historically described as Atypical MS, Atypical polio,
epidemic neuromyasthenia, non-HIV AIDS. Many other
historic descriptions
have implicated
infectious onset with chronic neurological and multi-system
impacts.
(See our Epidemics
and Definitions
pages for brief 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 (we
believe rightly so) - that has cost many lives, and continues to cause
untold suffering and cost lives. 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. But ME
patients are still waiting for that promise to come to fruition;
it is painfully slow.
Thankfully, there are many private and
independent
researchers in the US and abroad who are shining a light on
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 slowly being developed, while researchers and
patients alike are astounded that male pattern baldness receives
nearly three times the funding of ME!
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.
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
|
