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The Committee for
Justice
and Recognition of Myalgic Encephalomyelitis
The History, Science and Politics Affecting
Patients Disabled by M.E. around The Globe.
Myalgic
Encephalomyelitis is a disease that causes pathology to the brain and multiple
organs and systems, and has been classified as a disease of the nervous system
by the World Health Assembly. (Recognized within the section of neurologic diseases that includes; encephalitis, meningitis,
polioencephalitis, transverse myelitis,
multiple sclerosis, motor neurone, poliomyelitis, Parkinsons, Huntingtons,
epilepsy, Guillain-Barre, brainstem compression,
hydrocephalus, muscular dystrophy, cerebrovascular
disease, demyelinating diseases, Paraneoplastic
encephalopathy, Toxic encephalopathy, radiation myelopathy:
diseases often caused by viruses, bacteria or toxins). In contrast to these examples, since of the
recent worldwide epidemic, M.E. has become the most
common chronic disease of the Central Nervous System. Even so, this disease is
virtually unknown to the public and rare to find a doctor that can diagnose M.E.
The Committee is an international
patient based association dedicated to promoting Justice for the victims
of Myalgic Encephalomyelitis; and we are dedicated to achieve the full public Recognition
of the dangers of this worldwide disease epidemic. We will demand that the
national health agencies of all governments end the concealment and publicly
affirm that Myalgic Encephalomyelitis is a serious disease and an increasing
worldwide health disaster.
Toward that end The Committee will
disclose the truth about the disease and history of myalgic encephalomyelitis. We
will present the medical facts about M.E., and
examine the politics and motivations that have led to the public health
agencies’ mismanagement of, and dishonest response to this disease epidemic.
To advance the goals of Justice and
Recognition of M.E., the Committee will promote
patient advocacy efforts and support patient campaigns that demand the end to
the programs of delay and deception. We will promote efforts that demand that
the national health agencies support an urgent and vigorous investigation into
the causes and cures for this devastating epidemic. The greater concern for the
public worldwide is that the outbreaks of M.E.
continue, the numbers affected are growing and the epidemic spread may only be
at its beginning.
The Committee supports educational
efforts toward the recognition that Myalgic Encephalomyelitis is a complex
multi-systemic disease, producing neurological and metabolic dysfunctions. M.E. is a devastating disease from which few recover, and
results in a large number of people permanently disabled.
M.E. outbreaks and
sporadic disease has been documented for many decades. M.E.
appeared most commonly during local polio outbreaks, and at a high rate among
hospital personnel. At onset M.E. resembles polio,
and for many years was considered a variant of polio and classified as Atypical poliomyelitis.
Although Myalgic Encephalomyelitis had
been reported in the medical journals many times over the past century it was
considered a rare disease. Despite this profile, during the 1980’s M.E. exploded into an alarming worldwide epidemic. For
example during the last 20 years M.E. progressed from
a rare disease to now claim over a million victims in the
Upon this background of alarming
community outbreaks, pleas from doctors, a contagious pattern and an expanding
epidemic spread, the government health agencies did not act in a
straightforward manner to determine the nature, cause, and extent of the
epidemic, nor to alert and protect the public.
As the leading example, in the
These actions rendered doctors ignorant
of the history and the established neurological infectious nature of this
epidemic disease. This new name distracted doctors and the research
investigators with a major effort that proclaimed a “new illness” and focused
all attention on fatigue. These policies of concealment even go so far as to
advise doctors not to investigate patients for the infectious causes. Many
other governments immediately followed the same model. These policies have not
diminished this epidemic, or protected the public, or sought to determine the
cause of this disease. These policies reveal a clear pattern of malfeasance and
disregard for the public’s health.
Our evaluation brings us to the clear
conclusion that the greatest problem patients face in
receiving proper health care has more to do with the politics surrounding this
disease than the difficulties or the complexities of medical science.
We believe it is also our duty to alert
the general public that this devastating disease epidemic shows no sign of
ending, which means that all our fellow citizens are
at risk to be its next victim. Therefore we will promote patient and public
understanding of M.E., and demand that the national
health agencies end the policies and practices of deliberate roadblocks,
distraction and dishonesty. These policies have had enormous consequences and
continue to extract a tragic toll.
Many people have died from Myalgic
Encephalomyelitis and there are now millions disabled by this epidemic. It is
time to put an end to the cover-up of this epidemic.
We encourage patients from all countries
to work together to end this epidemic! Protect Yourselves. Learn about your
disease. Educate your doctors. Alert your fellow citizens to the dangers.
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Explore our Current Topics and Medical Library
Our Current Topics pages
should prove a valuable resource for patients and all those concerned with the
struggle to advance progress against this disease epidemic. Real advancement in
this struggle will require public awareness and support, and patients will be
further empowered by learning the true history of M.E.
and by gaining perspective of the appalling political dynamics surrounding our
disease. Patients, physicians and the public can discover much of the essential
reality of M.E. by reading the Epidemics page.
The Medical Fundamentals section
contains many important scientific and medical reports regarding the Diagnosis,
Neurology, Metabolism, Research, relationship to Polio and more. An excellent introduction for your doctors.
Many more pages are being prepared
for display. We are interested in your comments, ideas, suggestions and
questions so please contact The Committee.
Current Topics
Recent Epidemics; http://c4jrme.110mb.com/CurrentTopics3.htm
Why are the Epidemics so important – The
Epidemic Context
A Public Statement; http://c4jrme.110mb.com/CurrentTopics4.htm
The Definitions; http://c4jrme.110mb.com/CurrentTopics2.htm
The Medical Science
Open The
M.E. Medical Library - basic
science for Doctors and Patients
The Fundamentals of M.E.; http://c4jrme.110mb.com/melibrary.htm
The Diagnostic Protocol, Neurology, Metabolism,
Mitochondria, Immunology, History,
Medical Research, Similarities to
Poliomyelitis
Including:
Supplemental Articles, Recommended Books – M.E.
Experts Report -
List
of Resources - Research groups – Recognition of Medical Scientists http://c4jrme.110mb.com/supplement.htm
The History, Science and
Politics Affecting Patients Disabled by M.E. Around
The Globe.
The Committee for Justice
and Recognition of Myalgic Encephalomyelitis
Send your Concerns, Comments and Ideas to: TCJRME@yahoo.com
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** From Rare Disease to Worldwide Epidemic **
“ ME/CFS represents a
major world health and economic threat second only to AIDS ”
What are the dangers to you and your families –
Learn more of the Epidemic
Explosion and comments by the Experts; http://c4jrme.110mb.com/CurrentTopics3.htm
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Millions
Disabled by Myalgic Encephalomyelitis
Many
Names have been used at different times -
Atypical Poliomyelitis - Iceland Disease - Non-paralytic Poliomyelitis -
Royal Free Encephalomyelitis
- Epidemic Neuromyasthenia -
Epidemic Diencephalomyelitis -
Infectious Venulitis - Tapanui Flu -
Chronic Epstein-Barr Virus - Post Viral Syndrome - Gulf
War Syndrome - Myo-encephalopathy -
Saudi Flu - Chronic Fatigue Immune Dysfunction
Syndrome - Vegetative Vascular Dystonia -
Poliomyelitis-like Disease - Adult Acquired Autism - NK Cell Dysfunction
- RNaseL
Enzyme Dysfunction - XMRV neuroimmune disease
- Chronic Encephalomyelitis -
For decades this disease is most
accurately defined and best understood as Myalgic Encephalomyelitis
Myalgic
Encephalomyelitis is a Complex Disease
ME can be very similar to, or must be
differentiated from other conditions such as:
Multiple Sclerosis -
Parkinson’s - Systemic Lupus Erythematosus -
Tropical Spastic Pareparesis - Guillain-Barre
- Neuro
Behcets disease
- Addisons
Disease - Sarcoidosis -
Huntington’s - Amyotrophic Lateral Sclerosis/Motor Neurone - Encephalitis Lethargica - Polymyositis - Hypothyroidism -
Lymphoma - Brucellosis
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Learn more – visit the Medical Library; http://c4jrme.110mb.com/melibrary.htm
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Myalgic
Encephalomyelitis
International
Classification of Diseases, (ICD 9, 323.9) (ICD 10, G 93.3)
TCJRME
Home
Page http://c4jrme.110mb.com/
2003-2009
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