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Dr. Larry Fields,
Executive Secretary to the CFSAC
RE: Our recommendations and the CFSAC meeting of December 8, 2003

Please distribute this statement to the members of the CFS Advisory
Committee so they may consider these matters and our modest and
Practical recommendations, as they proceed with their work.

It is our hope that in developing policy initiatives for the
Department of Health serious consideration will be given to the
disaster that has gone before. There are millions now affected and
this disease continues to spread. The world awaits anxiously for
positive actions that will proceed toward the control and prevention
of this epidemic.

Thank you for your attention.

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THE COMMITTEE FOR JUSTICE
AND RECOGNITION OF MYALGIC ENCEPHALOMYELITIS


December 8, 2003


Public Statement

To

The CFS Advisory Committee,
US Department of Health and Human Services
and Dr Fields, for Secretary Thompson



Why Are We All Here

Since the 1934 California outbreak of Atypical Polio, a long record
of cases and outbreaks of our disease have been observed. There was
an increasing frequency of outbreaks during the 1950's, which brought
greater interest to our disease. Dr Melvin Ramsay and others further
defined the illness, and Myalgic Encephalomyelitis (ME) became the
recognized term for this neurologic infectious disease.

A number of distinguished doctors continued to study and report on ME
outbreaks, including Wallis, Acheson, Richardson, Parish, Henderson,
Shelokov, Dowsett, Ryll, Behan, and Hyde. Their writings have brought
us a wealth of information about Myalgic Encephalomyelitis, and a
continuous historical record of our disease over many decades.
Perhaps most impressive among them, Dr Richardson could attest that
the cases he saw in the year 2000 have the same disease as patients
that he and Dr Ramsay encountered in the 1950's: the neurological
disease defined as Myalgic Encephalomyelitis.

When the Tahoe Outbreak of 1984 signaled the onset of the massive
modern ME epidemic, the response of the CDC was the initiation of a
tragic, devastating and clear pattern of denial, misinformation and
distraction about this disease. The capstone was the fabrication of a
new illness, CFS, rather than the recognition and investigation of the
ME outbreaks. The immediate effect of these actions was to render
the medical community ignorant of the true nature of this disease, and
unaware of the established record of previous outbreaks and reports.
With this new CFS label, no one would realize that it referred to a
disease similar to multiple sclerosis, chronic non paralytic polio or
today's Post Polio. Clearly, in effect a program of deception.

The creation of "CFS" was immediately followed by the enlistment of
psychiatrists, and the redefinition and expansion of the disease
criteria. This redefinition created an opportunity to identify as
patients people with psychiatric disorders if that was convenient for
the researcher and sponsors. The effect was to pollute the subject
pool and thus confuse the results of research investigations. This
inclusion of the psychiatric brigade, that postulated theories and
promoted confusion, was to the delight and benefit of the Defense
department and an Insurance industry driven to limit their liabilities.

These major moves to confound and confuse, and to use the cover of the
psychological theories, can be seen as part of a deliberate protracted
plan. The expansion of the criteria would help provide ammunition to
waterdown the growing scientific data. Data, that demonstrate the
neurological, immunological and circulatory abnormalities that confirm
the Ramsay clinical criteria of Myalgic Encephalomyelitis. For the
insurance industry, the promotion of the psychological theories would
provide them with opportunities to limit disability coverage and avoid
liability payouts, and thus enhance the Bottom Line.

This period of time also coincides with the sudden explosion of huge
numbers of new ME cases among our young healthy military personnel.
Beginning in 1991, the numbers have now grown to nearly 200,000 Gulf
War ME victims. And we can see the wisdom of the defense department in
directly hiring the self proclaimed ME expert, the psychiatrist and
Insurance industry advisor, Simon Wessely. He has been quite useful
to help draw attention away from the exposures to toxic chemicals and
multiple vaccines.


By 1994, the tactics of deception included an overhaul of the "CFS"
criteria to put the focus on fatigue and stress. All the key features
that defined the neurological disease, ME, became optional. In a
stepwise progression, the program to obscure the ME epidemic and the
identity of the disease became broader and more determined. As doctors
and studies revealed more and more of the features and considerable
organic abnormalities of ME, so too, the designs and policies from the
CDC to confuse became more elaborate. By 2000, the proposal included
the creation of a wide umbrella of "unexplained" illnesses. Thereby,
a method to bury ME amongst a multitude of non-infectious,
non-neurologic and many psychological conditions. A category of
illnesses was created for which there would be little public interest
or empathy, once shrouded in the cloak of psychological theories.

All of these developments would be consistent with a plan not to
discover the cause. Such a plan would be especially useful if there
are man-made products, chemical or biologic, that have contributed to
the explosion of this ME epidemic. Concealing the cause could protect
firms from liability.

A Clear Conflict

For several years at least during the 1990's Brian Mahy and his
assistant Bill Reeves were in charge of the CFS programs at the CDC.
A GAO investigation found that many millions of dollars authorized by
Congress for CFS was diverted and not used for CFS research. In
effect, years of effort and opportunity and hope were lost. Many
patients have died during this time.

Yet Mahy and Reeves have still not been prosecuted. In fact they
continue to hold senior positions at the CDC and command budgets. In
what could be a brilliant move, perhaps to avoid prison, Reeves sought
shelter as a whistle blower and implicated his partner Mahy. Some say
Reeves was right to come forward while others view his actions as
similar to a mafia hit-man that fingers his partner in exchange for
immunity.

The patient community is aware of the CDC's long-standing culture of
bias regarding our disease: the refusal to investigate the outbreaks,
the diversion of funding, the deceitful design of laboratory studies,
to the offensive and derogatory attitudes toward patients. This
attitude includes Reeves having fun by ridiculing patients at public
meetings.

In another area of growing unease between the public and health
officials, concerns the rapid growth of chronic diseases and the
parallel massive use of vaccines, creating a major public health
question. Many cases of ME are known to be triggered by a
vaccination. Multiple vaccinations is strongly associated with Gulf
War and Autism, together with the growing numbers with chronic
diseases. The recent UPI investigation confirms that the CDC is in
the vaccine business including a large amount of industry influence
over vaccine related policy at the CDC. These factors create an
unmistakable basis for conflict of interest and in particular
regarding ME a disease known to be associated with some vaccinations.

Sadly, the CDC has a history of being involved in concealing and
manipulating studies to protect industry. Also the history of the CDC
includes a program where for many years hundreds of people with
syphilis were enrolled, they were lied to about the program, they
did not receive medication but suffered and died. The people were not
told the purpose of the project was to study the untreated disease and
examine their bodies at autopsy. The project was not stopped until it
was exposed in the press. The CDC claimed it was done in the name
of science.

The CDC history and their record with the ME epidemic, and experiences
of ME patients, argue against allowing the CDC to have anything
further to do with decisions about our disease.

It is clear to us that there is a fundamental conflict between the
interests of the large and growing patient community disabled by ME
with their desire for progress, and the program of the CDC, which has
been to delay and derail the search for the cause and cure.

The trademark of the CDC strategy to cause confusion and to conceal
the identity of this ME epidemic was the change of name to Chronic
Fatigue Syndrome. The myriad series of events, delays, mistakes and
supposed bungling is so extensive that it fills an entire book,
Hillary Johnson's Osler's Web, published in 1996. This work is
essential reading for understanding of the medical, social, and
political history of ME, as well as providing a context for the
current events.

The Disaster of Policy

Without regard to the origins of the ME epidemic or why the health
authorities have worked to conceal the epidemic from the public, the
effects these policies on patients is devastating. As patients we know
the brutality of both the medical and social disasters imposed by
the CDC policies. They advise doctors not to do any of the numerous
tests that demonstrate the immune, infectious, central nervous system
and metabolic abnormalities that can support the diagnosis. Where does
this leave the doctor? If there are no specific tests recommended,
then this advice can encourage the doctor to be skeptical that the
condition exists, certainly could not be serious.

Where does this leave the patient? Without complete medical
investigation and tests, the doctor is unable to proceed with
treatments. Untrained and unsure of the disease, induced by CDC policy
the patient is not treated, leading to further deterioration. Severely
disabled and without the validation of medical testing, the patient is
confronted with an impossible task to obtain disability assistance.
Many become homeless and fatalities increase.

These policies have fostered a pervasive negative attitude toward ME
Patients, of which we are well aware. There exists the common
experience at hospitals: the snickering by staff when they learn you
have "CFS". Or worse, the woman who went to hospital with severe
respiratory symptoms, she was not properly treated, given a bottle of
syrup and sent home. She died a few hours later. She was not properly
treated because she was known at the hospital to have CFS.

Advance Your Understanding

At the present time the medical community is attempting to understand
the symptoms of ME, attempting to gain entry with their tools and
methods and physiologic models, in order to explain the disease to
their colleagues. This means that at the present time it is the
patient community that has a far greater understanding of the
realities of ME than the medical community. To us, ME is no mystery,
it is a lived experience. This is a fundamental aspect of the current
situation that must be accepted in order to gain a better
understanding of this disease. Doctors will learn much about this
disease by listening to patients. Progress in ME treatment and
research begs for the guidance of clinical science. The patients'
experiences are a valuable source of valid data.

Government officials will also learn much about this disease by
listening to patient representatives directly affected by this disease
and by the actions of this committee. As patients we are from all
walks of life and from every region, state and congressional district,
and at the present time there is no immunity to ME. There is no
shield from its tragic progression. The preliminary follow-up from
the Tahoe Outbreak shows 10% have developed brain tumors and
lymphoma. The Gulf War vets comprise the greatest Outbreak of ME
and now over 20,000 have died.

Our numbers continue to grow, and as time passes since this epidemic
began the deaths due to Myalgic Encephalomyelitis are raising rapidly.
Advance your understanding. Recognize the epidemic of Myalgic
Encephalomyelitis. Protect the Public.


Why Are We All Here

We are here today, because a widespread epidemic of Myalgic
Encephalomyelitis has descended upon this country. In less than
twenty years time there are now over 1 million victims in the US alone
and millions more worldwide. We are here because the national health
agencies have not addressed this danger to the public health nor
sought to find the cause or remedies for the suffering.

We are here to inform the public that the national health agency
policies are subjecting patients to a systematic denial of medical
services and are maintaining doctors all across this country ignorant
about this disease. These health agency policies have ensured that the
cause of this disease is not discovered. These policies impact the
health of thousands already disabled by ME and continue to place
everyone at risk.

A principal issue must not be overlooked: Why has ME, which has an
historical relationship to Polio, exploded into a worldwide epidemic,
and what is the inordinate fear of the DHHS to recognize this and
discover its cause?

TCJRME is here to make plain to this DHHS Advisory Committee and to
the public some of the basic facts pertinent to the Patient community
disabled by this epidemic. Issues, events and the record of inaction
by our national health agencies must be brought out into the daylight
and dealt with honestly.

For the health and welfare of our fellow citizens, we insist that
these matters be taken up now. We will not wait any longer for
improvements, they must proceed now. We are here for progress. Now!

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The Committee for Justice and Recognition of Myalgic Encephalomyelitis
RECOMMENDS THE FOLLOWING ACTIONS:


First and foremost - End the Lies - Too Many Have Died

That the Advisory Committee recognize Myalgic Encephalomyelitis
as the disease that has spread as an epidemic over the country during
the last two decades and abolish forever the use of the term Chronic
fatigue syndrome.


Immediately form a panel of clinicians to establish a treatment
experience exercise.

That as quickly as possible this project enroll at least 100 doctors
and 10,000 patients to evaluate 10 or more treatment regimes that are
being used by clinicians in the field. These treatment approaches
normally include multiple products. As information from patients
suggests these should include; antibiotics, antivirals, immune
modifiers, EFA's, antioxidants, cellular and mitochondrial energy
products, and detoxifying agents. A report detailing a one year
experience would provide a broad amount of useful and practical
information for patients and doctors that has not been available in
any organized form for the million Americans devastated by this
disease.


That this Advisory committee ignite a search for the cause.

Since the federal agencies have not undertaken this task and have
worked to avoid supporting or investigating the infectious agents
involved, it is time to request a major funding of independent
research laboratories for a thorough search for bacteria or virus,
conventional or novel, as well as chemical toxins and vaccine
substances. Clearly, 50 laboratories and 50 million dollars over 5
years will bring some answers well worth the effort, considering that
the entire public is at risk. In the past 20 years we have seen
community outbreaks and we are dealing with a disease that was very
rare but has exploded into a million in this country alone, and it
continues unchecked leaving all citizens at risk.


That this Advisory committee Inform the Medical community.

That this body make available the new Clinical Case document developed
by the Canadian Health department Expert Panel to all physicians
making inquiries about this disease. This is the most advanced and
up-to-date and practical information source on this disease that can
quickly educate doctors, and will help save lives.


We demand that Reeves must be removed from this committee.

For the integrity of this committee Bill Reeves must be removed. He
is widely viewed as a criminal to the patient community and as an
obscenity to humanity. His involvement with the practices and
actions at the CDC which have contributed to thousands of deaths
is not acceptable. In the same way that it would be understandable
that Adolf Hitler would not be allowed on any Jewish welfare commission.


These are immediate recommendations for action.
There have been too many years of inaction from the national health
agencies. There are now millions worldwide disabled by this epidemic
of Myalgic Encephalomyelitis. Now is time for progress.



The Committee for Justice
and Recognition of Myalgic Encephalomyelitis


 TCJRME@yahoo.com



We have raised various topics here and can provide further information
regarding any of the issues raised in this statement.


CC:
Senator Harry Reid
Congressman Bob Filner
United Press International

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