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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 admit 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 ME, 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 ME, 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 ME 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. ME
is a devastating disease from which few recover, and results in a large number
of people permanently disabled.
ME outbreaks and sporadic disease has
been documented for many decades. ME appeared most commonly during local polio
outbreaks, and at a high rate among hospital personnel. At onset ME 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 ME exploded
into an alarming worldwide epidemic. For example during the last 20 years ME progressed
from a rare disease to now claim over a million victims in the USA alone.
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 USA, the
Centers for Disease Control (CDC) is the agency entrusted to actively
investigate precisely this type of major health hazard. Rather than fulfilling
its mandate, for some reason, the CDC abandoned their duty and proceeded to
avoid its investigation. They then proceeded to develop and implement policies
designed to disguise the disease, and confuse the medical community and the
public. The centerpiece of this program of confusion and distraction was forged
by changing the name of ME to CFS, interpreted by all as an innocuous,
unexplainable fatigue condition. This instantly cut off the disease from its
history and prior medical investigations and reports. Replacing knowledge with
ignorance.
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 ME, 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 ME 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 ME 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://www.oocities.org/tcjrme/CurrentTopics3.html
Why are the Epidemics so important – The Epidemic Context
A Public Statement; http://www.oocities.org/tcjrme/CurrentTopics4.html
The Definitions; http://www.oocities.org/tcjrme/CurrentTopics2.html
The Medical Science
Open The
ME Medical Library - basic science for Doctors and Patients
The Fundamentals of M.E.; http://www.oocities.org/tcjrme/fundamentals.html
The Diagnostic Protocol, Neurology,
Metabolism, Immunology, History,
Medical Research, Similarities
to Poliomyelitis
Including: Supplemental Articles, Recommended Books
– ME Experts Report -
List of Resources - Research groups – Recognition of Medical Scientists
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://www.oocities.org/tcjrme/CurrentTopics3.html
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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 -
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 -
Learn more – visit the
Medical Library; http://www.oocities.org/tcjrme/fundamentals.html
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Myalgic
Encephalomyelitis
International
Classification of Diseases, (ICD 9, 323.9) (ICD 10, G 93.3)
TCJRME
Home Page http://www.oocities.org/tcjrme
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