The pre-Pam Weintraub PLI (10/99)
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Mort Zuckerman
Oct 14, 2008, 9:20:45 AM10/14/08
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Subject: The pre-Pam Weintraub PLI (10/99)
Date: Oct 14, 2008 9:19 AM
"Efforts by many US UBRs and other scientists to identify
Borrelia burgdorferi genetic material for patenting and use in
vaccine development or diagnostic test kits which determine
immunological responses to these antigens and that are presently
of low scientific value but highly profitable, far exceed the
US Department of Health investment in finding a cure for Lyme
disease. The potential exists for biotechnology entrepreneurs
who are recipients of NIH funding for these endeavors to later
interpret the existence of LOADs infections based on the
patients serological response to their commercial test kits."--
1999, Kathleen M. Dickson
UBR = University-Based Researchers
LOADS = Lyme and/or Other Arthropod Diseases
http://www.lymenet.de/aktive/pli.htm
Pam Weintraub can tell us how I magically post-dated
the entire internet.
KMD
=====================================
http://groups.google.com/group/sci.med.diseases.lyme/browse_thread/thread/e53a00d9c6588919/63d1017e634b081e?hl=en&lnk=st&q=poughkeepsie+Lyme+initiative#63d1017e634b081e
The PLI republished in Germany (10/99):
http://www.lymenet.de/aktive/pli.htm
The Poughkeepsie Lyme Initiative V4.0 Part I
(V1.0 Pub date 10/99)
Persons who are ill with Lyme and/or Other Arthropod-borne Diseases
(LOADs) declare this initiative to reverse the effects of the
influence
of a group of university-based researchers (UBRs) who say "Lyme
disease" is “Overdiagnosed” and “Overtreated”. (1, 2,) It is not
yet known what are all the pathogens carried and transmitted via
tick attachment.(3,4) Therefore, manifestations of illness as a
result of infections transferred via tick bite must be evaluated
objectively/clinically.
It shall be recognized that the objectives of these UBRs do not
include
preserving patient wellness, but target the profitability of these
diseases. The vast percentage of NIH grants focuses on diagnostics
and vaccine candidate development and not in discovering cures for
Tick borne diseases. (5, 6, 7)
UBRs who report opinion papers in medical journals regarding outcomes
of certain subsets of LOADs patients deliberately and publicly
minimize
the effects of LOADs patients’ physical presentation under the
umbrella
of the broader term "Lyme Disease", as defined by the Center for
Disease Control (CDC) in its case definition. (1, 2, 8) In the
process, they discard other manifestations of Lyme disease and/or
Other Arthropod-borne Diseases (LOADs) with poorer outcomes which
are also described by the CDC as other clinical descriptions, by
assigning them other diagnoses, even psychiatric ones, without
objective
criteria for this reassignment. This activity is endorsed by the
United
States National Institutes of Health (NIH) and CDC.(9).
In addition to using various means to deny LOADs patients their
health,
the character and integrity of LOADs are assaulted, as they are
publicly
declared “not rational" as quoted in the press, when patients
advocate
for a clearer understanding of the results of LOADs infections and
cooperation in achieving recovery. (10)
International acceptance of the Human Rights Declaration demonstrates
acceptance of the respect and protection of the economic, social and
somatic (physical health and well-being) functional autonomy of all
people in their struggles against oppression; struggles which harms
or destroys life. LOADs patients frequently suffer the loss of all
three realms of autonomy due to the unscrupulous activities of this
body UBRs. These UBRs have chosen to pursue the financial advantages
and U.S. CDC and NIH approval in denying patients their right to
medical care by downplaying the severity seriousness of these diseases
as well as arbitrarily reassign the origin of LOADs patients'
physical complaints.
The effect of the influence of these UBRs, is to diminish LOADs
patients' chances for complete recovery and/or relief from their
debilitating symptoms and enables social and medical discrimination
against LOADs patients, which are violations of the Articles and
Prinicples of the International Human Rights Declaration listed
below.
LOADs patients will win back their respect as human beings who suffer
debilitating diseases which compromise physical and mental functioning
as well as see US Government funding more equally distributed to
those who seek to find a cure for LOADs, rather than be exclusively
distributed to those who are established to profit from prevention and
diagnostics. If funding discovering cures for illnesses such as LOADs
is not a goal of the US NIH and CDC, the US government should oversee
a shift in the goals of these entities to address these needs.
LOADs patients everywhere have the right to sustain a minimum level of
functioning and health until such time as cures are found. It is the
LOADs patients’ obligation to society and society's obligation to
LOADs patients that LOADs patients remain functional, if medical
intervention and treatment avails that functionality.
The empirical evidence therefore stands absolute. If antibiotic and/or
other treatment improves an LOADs patient's condition, the patient
should not be denied these medical interventions.
The following are the pertinent Human Rights Articles and Principles
that defend LOADs right to empirical treatment for Lyme Disease.
=====================================================
UNITED NATIONS COMMISSIONER FOR HUMAN RIGHTS - The
International Human Rights Charter:
http://www.unhchr.ch/udhr/miscinfo/carta.htm
"The Declaration recognizes that the "inherent dignity of
all members of the human family is the foundation of freedom,
justice and peace in the world" and is linked to the
recognition of fundamental rights towards which every human
being aspires, namely the right to life, liberty and security
of person; the right to an adequate standard of living; the
right to seek and to enjoy in other countries asylum from
persecution; the right to own property; the right to freedom of
opinion and expression; the right to education, freedom of
thought, conscience and religion; and the right to freedom
from torture and degrading treatment, among others. These
are inherent rights to be enjoyed by all human beings of
the global village -- men, women and children, as well as
by any group of society, disadvantaged or not -- and not
"gifts" to be withdrawn, withheld or granted at someone's
whim or will."
--------------------------------------------------------------
International Covenant on Economic, Social and Cultural Rights
http://www.unhchr.ch/html/menu3/b/a_cescr.htm
Adopted and opened for signature, ratification and accession
by General Assembly resolution 2200A (XXI) of 16 December 1966
entry into force 3 January 1976, in accordance with article 27
http://www.un.org/Depts/Treaty/final/ts2/newfiles/part_boo/iv_boo/iv_...
ratified by the United States of America October 5, 1977
Preamble
The States Parties to the present Covenant,
Considering that, in accordance with the principles proclaimed
in the Charter of the United Nations, recognition of the inherent
dignity and of the equal and inalienable rights of all members
of the human family is the foundation of freedom, justice and
peace in the world,
Recognizing that these rights derive from the inherent dignity
of the human person,
Recognizing that, in accordance with the Universal Declaration
of Human Rights, the ideal of free human beings enjoying freedom
from fear and want can only be achieved if conditions are
created whereby everyone may enjoy his economic, social and
cultural rights, as well as his civil and political rights,
Considering the obligation of States under the Charter of the
United Nations to promote universal respect for, and observance
of, human rights and freedoms,
Realizing that the individual, having duties to other individuals
and to the community to which he belongs, is under a responsibility
to strive for the promotion and observance of the rights
recognized in the present Covenant,
Agree upon the following articles:
PART I
Article 1
1. All peoples have the right of self-determination. By virtue
of that right they freely determine their political status
and freely pursue their economic, social and cultural development.
2. All peoples may, for their own ends, freely dispose of their
natural wealth and resources without prejudice to any obligations
arising out of international economic co-operation, based upon
the principle of mutual benefit, and international law. In no
case may a people be deprived of its own means of subsistence.
3. The States Parties to the present Covenant, including those
having responsibility for the administration of Non-Self-Governing
and Trust Territories, shall promote the realization of the right
of self-determination, and shall respect that right, in
conformity with the provisions of the Charter of the United Nations.
PART II
Article 2
1. Each State Party to the present Covenant undertakes to take
steps, individually and through international assistance and
co-operation, especially economic and technical, to the
maximum of its available resources, with a view to achieving
progressively the full realization of the rights recognized
in the present Covenant by all appropriate means, including
particularly the adoption of legislative measures.
Article 12
1. The States Parties to the present Covenant recognize the
right of everyone to the enjoyment of the highest attainable
standard of physical and mental health.
2. The steps to be taken by the States Parties to the present
Covenant to achieve the full realization of this right shall
include those necessary for:
(a) The provision for the reduction of the stillbirth-rate
and of infant mortality and for the healthy development of the
child;
(b) The improvement of all aspects of environmental and
industrial hygiene;
(c) The prevention, treatment and control of epidemic,
endemic, occupational and other diseases;
(d) The creation of conditions which would assure to all
medical service and medical attention in the event of sickness.
========================================================
COMMISSION ON HUMAN RIGHTS Fifty-first session Item 14 of the
provisional agenda
HUMAN RIGHTS AND SCIENTIFIC AND TECHNOLOGICAL
DEVELOPMENTS
http://www.unhchr.ch/Huridocda/Huridoca.nsf/TestFrame/18a
999a107eda5e38025671600547e8f?Opendocument
Human rights and bioethics
12. At its forty-eighth session, in 1996 the Sub-Commission,
recognizing that everyone has the right to enjoy the benefits
of scientific progress and its applications and noting that
at the World Conference on Human Rights it was acknowledged
that certain advances, notably in the biomedical and life sciences
as well as in information technology, might have potentially
adverse consequences for the integrity, dignity and human
rights of the individual, decided to entrust one of the
members with the task of preparing, without financial
implications, a working paper on the potentially adverse
consequences of scientific progress and its applications
for the integrity, dignity and human rights of the individual,
and called on the international scientific community and the
international organizations concerned to cooperate
(decision 1996/110).
13. The Governments and organizations which sent replies to
the communication from the Secretary-General emphasized the
need to ensure that scientific progress benefits individuals
and develops in a manner respectful of fundamental human rights.
18. Referring to paragraph 34 of the Secretary-General's most
recent report (E/CN.4/1995/74), the Holy See stated that it
could be appropriate to recall what had constituted the main
argument of the Holy See's reply, namely the inherent dignity
of every human being from the first moment of conception, as the
basis for the right to life and the principle that should
inspire all research in the field of life sciences. The wording
of the last sentence of paragraph 34 appears somewhat to
distort the meaning of the Holy See's reply. The following
wording would be preferable: "... biogenetic research and
experimentation touched on vast areas of social life, and
determined conditions for the exercise of certain economic
and social rights".
19. The Council for International Organizations of Medical
Sciences (CIOMS) stated that bioethics in the health sector
should be guided by generally accepted principles, in
particular by the principle that an adequate level of
health care should be recognized as a universal and
fundamental human right. ............
27. Principle 1.4 includes the following provisions relating
to improving the cost-effectiveness of resource allocation
and health planning:
"With the development of relatively new methods for measuring
the burden of disease on human life that constitute potential
tools for guiding decisions for improving the cost-effectiveness
(efficiency) of resource allocation and health planning, it is
essential that the further refinement of these methods be guided
by the principles of equity and non-discrimination on such
grounds as age, sex, ethnic origin, personal status, etc.,
as well as efficiency, and that countries with an interest
in applying these tools be provided with the resources for
building capacities for undertaking these analyses in a manner
consonant with national and local needs."
28. With respect to applying bioethical concepts to relevant
aspects of human rights, principle 2.1 states that:
"important opportunities exist for applying bioethics
concept in developing the content of human rights relating
to health, health protection, and health care. Such rights
can be clustered into three categories, viz.:
- rights to health care and to the benefits of scientific progress;
- rights relating to information, association, and freedom of
action that could empower groups to protect and promote their
health; and
- rights relating to self-determination and integrity of the
person, including rights to liberty and security and the right
to private life."
========================================================
THE STATE OF LYME DISEASE
Lyme disease is an infectious disease. The spirochete Borrelia
burgdorferi which is transferred via tick attachment and causes
Lyme disease, is a slow-growing and persisting organism that can
appears to live intracellularly and has several other well-recognized
means of immune system evasion. Thus, one of the infecting
organisms upon tick bite, the Lyme disease spirochete, avoids
immune and antibiotic destruction (11,12,13,14).
Since it is not known what are all the pathogens transferred via
tick bite or attachment, empirical evidence of treatment outcomes
is the logical approach to treatment. Many LOADs patients have
been observed to require long courses of antibiotics. The
evidence is that a significant portion of LOADs patients have
had symptom resolution, even in the absense of positive serology,
as a result of this objective, clinical, and empirical
view of the condition of symptoms vs. treatment (15).
Substantial scientific evidence exists which supports persistent
infection (11,16). Scant evidence to support a Lyme disease
infection initiates strictly an autoimmune disease (17). A diagnostic
reassignment of LOADs to an autoimmune disease when symptoms of
the autoimmune disease overlap, exactly, those the symptoms
which persist in the undertreated LOADs patient, is financially
favorable to insurance companies, pharmaceutical companies, and
scientists and universities who are involved in anti-inflammatory
medicines trials or vaccine trials.
Denying treatment based on the opinion that LOADs exclusively becomes
an autoimmune disease without scientific proof is a Human Rights
abuse. (1,2)
Unethical associations between the medical community and insurance
companies have been overlooked by US legislators. (18,19). No
insurance
company should sponsor a treatment study of an illness wherein all
manifestations of an illness have not been accurately and collectively
considered in the study such that the study results could potentially
skew the reporting of treatment protocols (18). This
serves to enable the insurance company to declare treatment of the
various subsets of the illness, ie., “Lyme Disease”, the “case”
definition vs. clinical descriptions or subsets not included in the
study, to be “experimental” and deny coverage for treatment on
that basis. (20)
OUTER SURFACE PROTIEN A the Vaccine
At the present time, the primary candidate molecule for causing an
auto-immune condition or for creating a cross-reacting antibody, (an
antibody created against the host as well as the infectious organism-
or
an autoimmune condition) is recombinant Outer Surface Protein A, or
rOSP
A, the molecule that has been recombinantly designed for and is
currently marketed as a vaccine against Lyme disease. (17,21) This
means that a primary suspect in initiating an alleged autoimmune
process is the very vaccine molecule proposed by, and advocated
for public use of by, these same UBR scientists who say Lyme
disease is easily cured and that persons with continued symptoms
no longer have Lyme disease. (1,2)
This dismissal of selected facts and potentially harmful evidence
demonstrates a lack of medical integrity. Some UBRs and associated
vaccine trial administrators attempt to purvey the vaccine as a
remedy for the “anxiety” over Lyme Disease.
THE STANDARD OF CARE
The current international consensus on treatment for "Lyme
disease" and therefore Other Tick-borne Diseases, is that there is "No
Consensus." The annual Lyme Disease Foundation International
Conference
on Lyme and other Tick Borne Disorders avails LOADs patient-treating
physicians a forum for comparing their treatment approaches in the
Treatment Roundtables. Such a forum would not be necessary if there
was
single internationally accepted treatment protocol.
Presently there is no absolute known cure for all cases or clinical
descriptions of LOADs as they manifest beyond the first 30 days after
infection. No single treatment regimen has been proven to eradicate
all
of the Borrelia burgdorferi (Bb) organisms that infect LOADs
patients.
Other pathogens conveyed upon tick attachment are unknown.
There is no absolute test that determines whether patients do or do
not
have an infection of Bb, nor is it known what are all possible
infecting
pathogens. For these reasons, no one person is expert in the standard
of care of for clinical descriptions of Lyme disease and/or concurrent
Tick-borne diseases (TBDs).
LOADs patients have the right to be treated with antibiotics and
other mechanisms of immune and health enhancement if they feel
they would like to at least try being treated, or have discovered
that treatment effects improvement in their symptoms until cures
are found, as is the agreement signed by the US
Government in the Human Rights Declaration.
Since an entirely effective medical treatment regimen has not yet
been determined, the empirical evidence in the individual patient
case,
or patient response to available therapeutic intervention, with
informed
consent of the patient, must determine the course of the LOADs
patients’ treatment.
========================================================
HUMAN RIGHTS VIOLATIONS IN LYME DISEASE
DENIAL OF ACCESS TO HEALTH CARE
Patients who had “Lyme disease”, as per the CDC case definition, or
one
of
the CDC-described clinical descriptions of subsets of the disease as
determined by clinical determination from which they did not recover
fully, and who then went on to have a symptom set that matches Chronic
Fatigue Syndrome or Fibromyalgia, and who were then not followed with
medical work up to rule out other causes of chronic fatigue and
chronic
pain, and as a result of this diagnostic reassignment were denied
antibiotic treatment for a possible persisting infection, experience
medical negligence and a deliberate denial of their Human Rights
to the best available medical treatment to alleviate their symptoms.
The objective of medicine is still to effect healing. It is a Human
Rights abuse for a physician to arbitrarily replace the diagnosis
of a clinical subset of Lyme Disease with a diagnosis of an autoimmune
illness that has no distinguishing clinical nor laboratory evidence,
when one of the two possible illnesses is treatable. (Human Rights
Declaration, Article 12, 1)
The correct and logical approach is to try to effect
patient recovery, or, at least, a dimunition in disabling symptoms.
Choosing an autoimmune disease as the diagnosis serves the goals
of insurance companies and the goals of the CDC, which is to
downplay the seriousness of TBDs and deny symptom-relieving
treatment.
LOADs patients, through this activity of reassigning their diagnoses
of
an infectious disease to an auto-immune illness, are being denied
the right to obtain medical treatment for difficult- to- cure disease,
and possibly, set of diseases, which affect patients' ability to be
functioning, contributing members of society, and is known to
require the highest standard of treatment. Treatment of an
illness with the highest medical standard of treatment available
is a Human Right agreed to by the United States upon ratification
of the the International Declaration of Human Rights.
The view that persons with diseases should be left untreated for the
purpose of human experimentation or eliminating immunologically
incompetent individuals. The latter philosophy has begun to re-emerge
sporadically in western society in the agenda of some proponents of a
global world order in which preservation of the environment has
priority over the preservation of human life. Such agendas clearly
are not consistent with the protection of Human Rights as a means
of preventing violent conflicts and the destruction of natural
resources.
INDEPENDENT MEDICAL EVALUATIONS
AND PAID TESTIMONY
If it financially serves insurance companies by not paying for
treatment, and financially benefits the physicians who provide
them with paid testimony by performing independent medical
evaluations, the evaluation is not independent. If it
financially serves insurance companies to hire physicians
to provide testimony in legal disputes in which it is declared
that an LOADs patient has some other disease for which there
is no diagnostic laboratory confirming evidence (Chronic
Fatigue/Immune Dysfunction Syndrome (CF/IDS), Fibromyalgia
(FM) or even Depression), or that laboratory evidence is
“false positive” because the patient no longer meets the
CDC “Case” definition, and the illness is subsequent to
a Lyme disease infection, and it is concluded that longer
courses of antibiotic treatment are not necessary, the
testimony is not objective and possibly perjurious.
It is not logical for a diagnostician to transfer the
determination of one difficult to detect infection,
Lyme disease, to one that has no laboratory means of
detection at all and for the diagnostician to expect to
maintain credibility. This is particularly questionable testimony
when the physician testifying is paid substantial sums for, and is
sought for this service on the basis of a history of
performing this service. When self-proclaimed experts
are consistently chosen to give testimony which
results in a denial of the necessity of treatment,
and the expert charges a fee for this testimony, the
testimony is not independent.
If it financially serves insurance companies to retain medical
experts who cite opinion papers published in medical journals
as the basis for the medical opinion of these retained experts
and these are studies which have excluded subsets of patients with
LOADs, and/or in which the diagnoses of LOADs patients
is arbitrarily reassigned to an auto-immune illness, the
insurance company experts are only expert at providing
medical opinion that fits the fiscal
objectives of the insurance company.
These activities are deliberate means of denying patients
treatment of LOADs and are therefore a Human Rights violation.
All communities worldwide should be aware of these
mechanisms of denying or reassigning diagnosis and thus
restricting treatment, as it may not be restricted to practice
in LOADs cases. Just as the discovery of new types of
rthropod-borne infections is rising exponentially,
so too is the potential for the type of human rights abuses
that LOADs patients now suffer.
VIOLATIONS TO HUMAN DIGNITY
Using positions of medical scientific authority to publicly
declare that LOADs patients are not chronically infected without
scientific proof, instead declaring them "not rational", is an
offense against human dignity. When LOADs patients are so criticized,
they are being kept from medical treatment resulting in an inadequate
standard of living as they become progessively more disabled by
their illness. The results of such public declarations and
unsubstantiated opinions in medical journal articles is medical
negligence and potentially effects a lack of medical objectivity
of their present and future medical conditions.
When it is inferred that patients, instead, suffer from Depression
are not rational, are hypochondriacal, have a psychiatric disorder, or
psychosomatic syndrome rather than an infectious disease, it is
implied
that patients are partially responsible for their condition and
patients
therefore suffer detrimental social and economic effects. This is a
violation of human dignity, as it results in prejudice and thus a
restriction of economic and social autonomy and access to objective
medical care.
OFFENSES TO PRINCIPLE 1.4 HUMAN RIGHTS AND SCIENTIFIC AND
TECHNOLOGICAL DEVELOPMENTS (Human rights and bioethics) IN
LYME DISEASE
Offenses that occur in LOADs:
1) Not reporting cases of Lyme disease to the CDC for the
purposes of surveillance. This affects the accuartel determination
of the burden of Lyme disease and/or other TBDs in the United States.
It violates Principle 1.4 (Human rights and bioethics) as it
interferes
with resource allocation.
2) Not recording or reporting adverse vaccine reactions. This is a
Human Rights violation in that it prevents the delivery of
data which may protect others from the harm of such a vaccine.
Physicians who prefer to remain non-objective and adhere to the dogma
that Lyme disease is over-diagnosed and over-treated without fully
understanding the rationale (it is not possible to understand this
rationale unless one is aware that Lyme disease can have several
subsets of clinical presentations, which were artfully not
identified in the journal articles so entitled); who have
participated in Lyme disease vaccine trials, and who have not
reported or recorded adverse vaccine reactions in patients,
violate these Principles, as well as being illegal in the
United States.
The anecdotal evidence is that some patients who were both infected
with
Borrelia burgdorferi and administered recombinant OSP A, the vaccine,
suffer adverse effects. The evidence exists for this in animal
studies (21). It is a violation of Principle 1.4 to not report
the adverse effects of new biotechnology products, such that
they continue to be used and threaten the well-being of others.
3) Investing excessive US NIH funding for developing
commercially valuable biotechnology to the near exclusion
of funding endeavors to discover specific cures for Lyme
and other TBDs or funding research that excludes clinical
description subsets of Lyme disease.
Efforts by many US UBRs and other scientists to identify
Borrelia burgdorferi genetic material for patenting and use in
vaccine development or diagnostic test kits which determine
immunological responses to these antigens and that are presently
of low scientific value but highly profitable, far exceed the
US Department of Health investment in finding a cure for Lyme
disease. The potential exists for biotechnology entrepreneurs
who are recipients of NIH funding for these endeavors to later
interpret the existence of LOADs infections based on the
patients serological response to their commercial test kits.
4) Replacing the diagnosis of a patient with an infectious
disease with a diagnosis of a disease that is thought
to be an autoimmune disease also effects a false
record of the prevalence of both the infectious disease
and the autoimmune illnesses and inappropriately shifts
the balance of funding away from the study of the infectious
disease. (1)
It shall be recognized by the example of the Human Rights abuses
in Lyme and/or Other Arthropod-borne Diseases, that the potential
exists to interpret the definitions and clinical manifestations
of other diseases to suit the potential profitability of those
diseases.
Spin...@yahoogroups.com, kshe...@calea.org, fit...@gmail.com,
patrick.f...@usdoj.gov, model...@sbcglobal.net,
jdr...@nejm.org, let...@courant.com, Jgerb...@cdc.gov,
michae...@po.state.ct.us, con...@po.state.ct.us, executive-
edi...@nytimes.com, managin...@nytimes.com, news-
ti...@nytimes.com, the-...@nytimes.com, biz...@nytimes.com,
for...@nytimes.com, me...@nytimes.com, nati...@nytimes.com,
dv...@cdc.gov, brigidc...@optonline.net, tr...@hotmail.com,
illino...@aol.com, jle...@courant.com, tinaj...@yahoo.com,
jhorn...@fff.org, thomas...@usdoj.gov,
thoma...@po.state.ct.us, kur...@washpost.com,
georg...@washpost.com, p...@allegorypress.com,
commissi...@po.state.ct.us, FalN...@aol.com,
brans...@comcast.net, vts...@comcast.net, o...@po.state.ct.us,
freet...@charter.net, scott....@po.state.ct.us,
govern...@po.state.ct.us, attorney...@po.state.ct.us,
randall...@usdoj.gov
Cc: fra...@ucia.gov, dr-ahma...@president.ir,
eugener...@washpost.com, hor...@courant.com,
bmi...@newstimes.com, tr...@hotmail.com, rast...@aol.com,
billc...@gmail.com, amcg...@rms-law.com, rjmu...@aol.com,
paulcrai...@yahoo.com, sidney_b...@yahoo.com,
criminal...@usdoj.gov, karla.d...@usdoj.gov,
christophe...@usdoj.gov, richar...@yale.edu,
harol...@yale.edu, james.p...@yale.edu, inq...@aldf.com,
ly...@idsociety.org
Subject: The pre-Pam Weintraub PLI (10/99)
Date: Oct 14, 2008 9:19 AM
"Efforts by many US UBRs and other scientists to identify
Borrelia burgdorferi genetic material for patenting and use in
vaccine development or diagnostic test kits which determine
immunological responses to these antigens and that are presently
of low scientific value but highly profitable, far exceed the
US Department of Health investment in finding a cure for Lyme
disease. The potential exists for biotechnology entrepreneurs
who are recipients of NIH funding for these endeavors to later
interpret the existence of LOADs infections based on the
patients serological response to their commercial test kits."--
1999, Kathleen M. Dickson
UBR = University-Based Researchers
LOADS = Lyme and/or Other Arthropod Diseases
http://www.lymenet.de/aktive/pli.htm
Pam Weintraub can tell us how I magically post-dated
the entire internet.
KMD
=====================================
http://groups.google.com/group/sci.med.diseases.lyme/browse_thread/thread/e53a00d9c6588919/63d1017e634b081e?hl=en&lnk=st&q=poughkeepsie+Lyme+initiative#63d1017e634b081e
The PLI republished in Germany (10/99):
http://www.lymenet.de/aktive/pli.htm
The Poughkeepsie Lyme Initiative V4.0 Part I
(V1.0 Pub date 10/99)
Persons who are ill with Lyme and/or Other Arthropod-borne Diseases
(LOADs) declare this initiative to reverse the effects of the
influence
of a group of university-based researchers (UBRs) who say "Lyme
disease" is “Overdiagnosed” and “Overtreated”. (1, 2,) It is not
yet known what are all the pathogens carried and transmitted via
tick attachment.(3,4) Therefore, manifestations of illness as a
result of infections transferred via tick bite must be evaluated
objectively/clinically.
It shall be recognized that the objectives of these UBRs do not
include
preserving patient wellness, but target the profitability of these
diseases. The vast percentage of NIH grants focuses on diagnostics
and vaccine candidate development and not in discovering cures for
Tick borne diseases. (5, 6, 7)
UBRs who report opinion papers in medical journals regarding outcomes
of certain subsets of LOADs patients deliberately and publicly
minimize
the effects of LOADs patients’ physical presentation under the
umbrella
of the broader term "Lyme Disease", as defined by the Center for
Disease Control (CDC) in its case definition. (1, 2, 8) In the
process, they discard other manifestations of Lyme disease and/or
Other Arthropod-borne Diseases (LOADs) with poorer outcomes which
are also described by the CDC as other clinical descriptions, by
assigning them other diagnoses, even psychiatric ones, without
objective
criteria for this reassignment. This activity is endorsed by the
United
States National Institutes of Health (NIH) and CDC.(9).
In addition to using various means to deny LOADs patients their
health,
the character and integrity of LOADs are assaulted, as they are
publicly
declared “not rational" as quoted in the press, when patients
advocate
for a clearer understanding of the results of LOADs infections and
cooperation in achieving recovery. (10)
International acceptance of the Human Rights Declaration demonstrates
acceptance of the respect and protection of the economic, social and
somatic (physical health and well-being) functional autonomy of all
people in their struggles against oppression; struggles which harms
or destroys life. LOADs patients frequently suffer the loss of all
three realms of autonomy due to the unscrupulous activities of this
body UBRs. These UBRs have chosen to pursue the financial advantages
and U.S. CDC and NIH approval in denying patients their right to
medical care by downplaying the severity seriousness of these diseases
as well as arbitrarily reassign the origin of LOADs patients'
physical complaints.
The effect of the influence of these UBRs, is to diminish LOADs
patients' chances for complete recovery and/or relief from their
debilitating symptoms and enables social and medical discrimination
against LOADs patients, which are violations of the Articles and
Prinicples of the International Human Rights Declaration listed
below.
LOADs patients will win back their respect as human beings who suffer
debilitating diseases which compromise physical and mental functioning
as well as see US Government funding more equally distributed to
those who seek to find a cure for LOADs, rather than be exclusively
distributed to those who are established to profit from prevention and
diagnostics. If funding discovering cures for illnesses such as LOADs
is not a goal of the US NIH and CDC, the US government should oversee
a shift in the goals of these entities to address these needs.
LOADs patients everywhere have the right to sustain a minimum level of
functioning and health until such time as cures are found. It is the
LOADs patients’ obligation to society and society's obligation to
LOADs patients that LOADs patients remain functional, if medical
intervention and treatment avails that functionality.
The empirical evidence therefore stands absolute. If antibiotic and/or
other treatment improves an LOADs patient's condition, the patient
should not be denied these medical interventions.
The following are the pertinent Human Rights Articles and Principles
that defend LOADs right to empirical treatment for Lyme Disease.
=====================================================
UNITED NATIONS COMMISSIONER FOR HUMAN RIGHTS - The
International Human Rights Charter:
http://www.unhchr.ch/udhr/miscinfo/carta.htm
"The Declaration recognizes that the "inherent dignity of
all members of the human family is the foundation of freedom,
justice and peace in the world" and is linked to the
recognition of fundamental rights towards which every human
being aspires, namely the right to life, liberty and security
of person; the right to an adequate standard of living; the
right to seek and to enjoy in other countries asylum from
persecution; the right to own property; the right to freedom of
opinion and expression; the right to education, freedom of
thought, conscience and religion; and the right to freedom
from torture and degrading treatment, among others. These
are inherent rights to be enjoyed by all human beings of
the global village -- men, women and children, as well as
by any group of society, disadvantaged or not -- and not
"gifts" to be withdrawn, withheld or granted at someone's
whim or will."
--------------------------------------------------------------
International Covenant on Economic, Social and Cultural Rights
http://www.unhchr.ch/html/menu3/b/a_cescr.htm
Adopted and opened for signature, ratification and accession
by General Assembly resolution 2200A (XXI) of 16 December 1966
entry into force 3 January 1976, in accordance with article 27
http://www.un.org/Depts/Treaty/final/ts2/newfiles/part_boo/iv_boo/iv_...
ratified by the United States of America October 5, 1977
Preamble
The States Parties to the present Covenant,
Considering that, in accordance with the principles proclaimed
in the Charter of the United Nations, recognition of the inherent
dignity and of the equal and inalienable rights of all members
of the human family is the foundation of freedom, justice and
peace in the world,
Recognizing that these rights derive from the inherent dignity
of the human person,
Recognizing that, in accordance with the Universal Declaration
of Human Rights, the ideal of free human beings enjoying freedom
from fear and want can only be achieved if conditions are
created whereby everyone may enjoy his economic, social and
cultural rights, as well as his civil and political rights,
Considering the obligation of States under the Charter of the
United Nations to promote universal respect for, and observance
of, human rights and freedoms,
Realizing that the individual, having duties to other individuals
and to the community to which he belongs, is under a responsibility
to strive for the promotion and observance of the rights
recognized in the present Covenant,
Agree upon the following articles:
PART I
Article 1
1. All peoples have the right of self-determination. By virtue
of that right they freely determine their political status
and freely pursue their economic, social and cultural development.
2. All peoples may, for their own ends, freely dispose of their
natural wealth and resources without prejudice to any obligations
arising out of international economic co-operation, based upon
the principle of mutual benefit, and international law. In no
case may a people be deprived of its own means of subsistence.
3. The States Parties to the present Covenant, including those
having responsibility for the administration of Non-Self-Governing
and Trust Territories, shall promote the realization of the right
of self-determination, and shall respect that right, in
conformity with the provisions of the Charter of the United Nations.
PART II
Article 2
1. Each State Party to the present Covenant undertakes to take
steps, individually and through international assistance and
co-operation, especially economic and technical, to the
maximum of its available resources, with a view to achieving
progressively the full realization of the rights recognized
in the present Covenant by all appropriate means, including
particularly the adoption of legislative measures.
Article 12
1. The States Parties to the present Covenant recognize the
right of everyone to the enjoyment of the highest attainable
standard of physical and mental health.
2. The steps to be taken by the States Parties to the present
Covenant to achieve the full realization of this right shall
include those necessary for:
(a) The provision for the reduction of the stillbirth-rate
and of infant mortality and for the healthy development of the
child;
(b) The improvement of all aspects of environmental and
industrial hygiene;
(c) The prevention, treatment and control of epidemic,
endemic, occupational and other diseases;
(d) The creation of conditions which would assure to all
medical service and medical attention in the event of sickness.
========================================================
COMMISSION ON HUMAN RIGHTS Fifty-first session Item 14 of the
provisional agenda
HUMAN RIGHTS AND SCIENTIFIC AND TECHNOLOGICAL
DEVELOPMENTS
http://www.unhchr.ch/Huridocda/Huridoca.nsf/TestFrame/18a
999a107eda5e38025671600547e8f?Opendocument
Human rights and bioethics
12. At its forty-eighth session, in 1996 the Sub-Commission,
recognizing that everyone has the right to enjoy the benefits
of scientific progress and its applications and noting that
at the World Conference on Human Rights it was acknowledged
that certain advances, notably in the biomedical and life sciences
as well as in information technology, might have potentially
adverse consequences for the integrity, dignity and human
rights of the individual, decided to entrust one of the
members with the task of preparing, without financial
implications, a working paper on the potentially adverse
consequences of scientific progress and its applications
for the integrity, dignity and human rights of the individual,
and called on the international scientific community and the
international organizations concerned to cooperate
(decision 1996/110).
13. The Governments and organizations which sent replies to
the communication from the Secretary-General emphasized the
need to ensure that scientific progress benefits individuals
and develops in a manner respectful of fundamental human rights.
18. Referring to paragraph 34 of the Secretary-General's most
recent report (E/CN.4/1995/74), the Holy See stated that it
could be appropriate to recall what had constituted the main
argument of the Holy See's reply, namely the inherent dignity
of every human being from the first moment of conception, as the
basis for the right to life and the principle that should
inspire all research in the field of life sciences. The wording
of the last sentence of paragraph 34 appears somewhat to
distort the meaning of the Holy See's reply. The following
wording would be preferable: "... biogenetic research and
experimentation touched on vast areas of social life, and
determined conditions for the exercise of certain economic
and social rights".
19. The Council for International Organizations of Medical
Sciences (CIOMS) stated that bioethics in the health sector
should be guided by generally accepted principles, in
particular by the principle that an adequate level of
health care should be recognized as a universal and
fundamental human right. ............
27. Principle 1.4 includes the following provisions relating
to improving the cost-effectiveness of resource allocation
and health planning:
"With the development of relatively new methods for measuring
the burden of disease on human life that constitute potential
tools for guiding decisions for improving the cost-effectiveness
(efficiency) of resource allocation and health planning, it is
essential that the further refinement of these methods be guided
by the principles of equity and non-discrimination on such
grounds as age, sex, ethnic origin, personal status, etc.,
as well as efficiency, and that countries with an interest
in applying these tools be provided with the resources for
building capacities for undertaking these analyses in a manner
consonant with national and local needs."
28. With respect to applying bioethical concepts to relevant
aspects of human rights, principle 2.1 states that:
"important opportunities exist for applying bioethics
concept in developing the content of human rights relating
to health, health protection, and health care. Such rights
can be clustered into three categories, viz.:
- rights to health care and to the benefits of scientific progress;
- rights relating to information, association, and freedom of
action that could empower groups to protect and promote their
health; and
- rights relating to self-determination and integrity of the
person, including rights to liberty and security and the right
to private life."
========================================================
THE STATE OF LYME DISEASE
Lyme disease is an infectious disease. The spirochete Borrelia
burgdorferi which is transferred via tick attachment and causes
Lyme disease, is a slow-growing and persisting organism that can
appears to live intracellularly and has several other well-recognized
means of immune system evasion. Thus, one of the infecting
organisms upon tick bite, the Lyme disease spirochete, avoids
immune and antibiotic destruction (11,12,13,14).
Since it is not known what are all the pathogens transferred via
tick bite or attachment, empirical evidence of treatment outcomes
is the logical approach to treatment. Many LOADs patients have
been observed to require long courses of antibiotics. The
evidence is that a significant portion of LOADs patients have
had symptom resolution, even in the absense of positive serology,
as a result of this objective, clinical, and empirical
view of the condition of symptoms vs. treatment (15).
Substantial scientific evidence exists which supports persistent
infection (11,16). Scant evidence to support a Lyme disease
infection initiates strictly an autoimmune disease (17). A diagnostic
reassignment of LOADs to an autoimmune disease when symptoms of
the autoimmune disease overlap, exactly, those the symptoms
which persist in the undertreated LOADs patient, is financially
favorable to insurance companies, pharmaceutical companies, and
scientists and universities who are involved in anti-inflammatory
medicines trials or vaccine trials.
Denying treatment based on the opinion that LOADs exclusively becomes
an autoimmune disease without scientific proof is a Human Rights
abuse. (1,2)
Unethical associations between the medical community and insurance
companies have been overlooked by US legislators. (18,19). No
insurance
company should sponsor a treatment study of an illness wherein all
manifestations of an illness have not been accurately and collectively
considered in the study such that the study results could potentially
skew the reporting of treatment protocols (18). This
serves to enable the insurance company to declare treatment of the
various subsets of the illness, ie., “Lyme Disease”, the “case”
definition vs. clinical descriptions or subsets not included in the
study, to be “experimental” and deny coverage for treatment on
that basis. (20)
OUTER SURFACE PROTIEN A the Vaccine
At the present time, the primary candidate molecule for causing an
auto-immune condition or for creating a cross-reacting antibody, (an
antibody created against the host as well as the infectious organism-
or
an autoimmune condition) is recombinant Outer Surface Protein A, or
rOSP
A, the molecule that has been recombinantly designed for and is
currently marketed as a vaccine against Lyme disease. (17,21) This
means that a primary suspect in initiating an alleged autoimmune
process is the very vaccine molecule proposed by, and advocated
for public use of by, these same UBR scientists who say Lyme
disease is easily cured and that persons with continued symptoms
no longer have Lyme disease. (1,2)
This dismissal of selected facts and potentially harmful evidence
demonstrates a lack of medical integrity. Some UBRs and associated
vaccine trial administrators attempt to purvey the vaccine as a
remedy for the “anxiety” over Lyme Disease.
THE STANDARD OF CARE
The current international consensus on treatment for "Lyme
disease" and therefore Other Tick-borne Diseases, is that there is "No
Consensus." The annual Lyme Disease Foundation International
Conference
on Lyme and other Tick Borne Disorders avails LOADs patient-treating
physicians a forum for comparing their treatment approaches in the
Treatment Roundtables. Such a forum would not be necessary if there
was
single internationally accepted treatment protocol.
Presently there is no absolute known cure for all cases or clinical
descriptions of LOADs as they manifest beyond the first 30 days after
infection. No single treatment regimen has been proven to eradicate
all
of the Borrelia burgdorferi (Bb) organisms that infect LOADs
patients.
Other pathogens conveyed upon tick attachment are unknown.
There is no absolute test that determines whether patients do or do
not
have an infection of Bb, nor is it known what are all possible
infecting
pathogens. For these reasons, no one person is expert in the standard
of care of for clinical descriptions of Lyme disease and/or concurrent
Tick-borne diseases (TBDs).
LOADs patients have the right to be treated with antibiotics and
other mechanisms of immune and health enhancement if they feel
they would like to at least try being treated, or have discovered
that treatment effects improvement in their symptoms until cures
are found, as is the agreement signed by the US
Government in the Human Rights Declaration.
Since an entirely effective medical treatment regimen has not yet
been determined, the empirical evidence in the individual patient
case,
or patient response to available therapeutic intervention, with
informed
consent of the patient, must determine the course of the LOADs
patients’ treatment.
========================================================
HUMAN RIGHTS VIOLATIONS IN LYME DISEASE
DENIAL OF ACCESS TO HEALTH CARE
Patients who had “Lyme disease”, as per the CDC case definition, or
one
of
the CDC-described clinical descriptions of subsets of the disease as
determined by clinical determination from which they did not recover
fully, and who then went on to have a symptom set that matches Chronic
Fatigue Syndrome or Fibromyalgia, and who were then not followed with
medical work up to rule out other causes of chronic fatigue and
chronic
pain, and as a result of this diagnostic reassignment were denied
antibiotic treatment for a possible persisting infection, experience
medical negligence and a deliberate denial of their Human Rights
to the best available medical treatment to alleviate their symptoms.
The objective of medicine is still to effect healing. It is a Human
Rights abuse for a physician to arbitrarily replace the diagnosis
of a clinical subset of Lyme Disease with a diagnosis of an autoimmune
illness that has no distinguishing clinical nor laboratory evidence,
when one of the two possible illnesses is treatable. (Human Rights
Declaration, Article 12, 1)
The correct and logical approach is to try to effect
patient recovery, or, at least, a dimunition in disabling symptoms.
Choosing an autoimmune disease as the diagnosis serves the goals
of insurance companies and the goals of the CDC, which is to
downplay the seriousness of TBDs and deny symptom-relieving
treatment.
LOADs patients, through this activity of reassigning their diagnoses
of
an infectious disease to an auto-immune illness, are being denied
the right to obtain medical treatment for difficult- to- cure disease,
and possibly, set of diseases, which affect patients' ability to be
functioning, contributing members of society, and is known to
require the highest standard of treatment. Treatment of an
illness with the highest medical standard of treatment available
is a Human Right agreed to by the United States upon ratification
of the the International Declaration of Human Rights.
The view that persons with diseases should be left untreated for the
purpose of human experimentation or eliminating immunologically
incompetent individuals. The latter philosophy has begun to re-emerge
sporadically in western society in the agenda of some proponents of a
global world order in which preservation of the environment has
priority over the preservation of human life. Such agendas clearly
are not consistent with the protection of Human Rights as a means
of preventing violent conflicts and the destruction of natural
resources.
INDEPENDENT MEDICAL EVALUATIONS
AND PAID TESTIMONY
If it financially serves insurance companies by not paying for
treatment, and financially benefits the physicians who provide
them with paid testimony by performing independent medical
evaluations, the evaluation is not independent. If it
financially serves insurance companies to hire physicians
to provide testimony in legal disputes in which it is declared
that an LOADs patient has some other disease for which there
is no diagnostic laboratory confirming evidence (Chronic
Fatigue/Immune Dysfunction Syndrome (CF/IDS), Fibromyalgia
(FM) or even Depression), or that laboratory evidence is
“false positive” because the patient no longer meets the
CDC “Case” definition, and the illness is subsequent to
a Lyme disease infection, and it is concluded that longer
courses of antibiotic treatment are not necessary, the
testimony is not objective and possibly perjurious.
It is not logical for a diagnostician to transfer the
determination of one difficult to detect infection,
Lyme disease, to one that has no laboratory means of
detection at all and for the diagnostician to expect to
maintain credibility. This is particularly questionable testimony
when the physician testifying is paid substantial sums for, and is
sought for this service on the basis of a history of
performing this service. When self-proclaimed experts
are consistently chosen to give testimony which
results in a denial of the necessity of treatment,
and the expert charges a fee for this testimony, the
testimony is not independent.
If it financially serves insurance companies to retain medical
experts who cite opinion papers published in medical journals
as the basis for the medical opinion of these retained experts
and these are studies which have excluded subsets of patients with
LOADs, and/or in which the diagnoses of LOADs patients
is arbitrarily reassigned to an auto-immune illness, the
insurance company experts are only expert at providing
medical opinion that fits the fiscal
objectives of the insurance company.
These activities are deliberate means of denying patients
treatment of LOADs and are therefore a Human Rights violation.
All communities worldwide should be aware of these
mechanisms of denying or reassigning diagnosis and thus
restricting treatment, as it may not be restricted to practice
in LOADs cases. Just as the discovery of new types of
rthropod-borne infections is rising exponentially,
so too is the potential for the type of human rights abuses
that LOADs patients now suffer.
VIOLATIONS TO HUMAN DIGNITY
Using positions of medical scientific authority to publicly
declare that LOADs patients are not chronically infected without
scientific proof, instead declaring them "not rational", is an
offense against human dignity. When LOADs patients are so criticized,
they are being kept from medical treatment resulting in an inadequate
standard of living as they become progessively more disabled by
their illness. The results of such public declarations and
unsubstantiated opinions in medical journal articles is medical
negligence and potentially effects a lack of medical objectivity
of their present and future medical conditions.
When it is inferred that patients, instead, suffer from Depression
are not rational, are hypochondriacal, have a psychiatric disorder, or
psychosomatic syndrome rather than an infectious disease, it is
implied
that patients are partially responsible for their condition and
patients
therefore suffer detrimental social and economic effects. This is a
violation of human dignity, as it results in prejudice and thus a
restriction of economic and social autonomy and access to objective
medical care.
OFFENSES TO PRINCIPLE 1.4 HUMAN RIGHTS AND SCIENTIFIC AND
TECHNOLOGICAL DEVELOPMENTS (Human rights and bioethics) IN
LYME DISEASE
Offenses that occur in LOADs:
1) Not reporting cases of Lyme disease to the CDC for the
purposes of surveillance. This affects the accuartel determination
of the burden of Lyme disease and/or other TBDs in the United States.
It violates Principle 1.4 (Human rights and bioethics) as it
interferes
with resource allocation.
2) Not recording or reporting adverse vaccine reactions. This is a
Human Rights violation in that it prevents the delivery of
data which may protect others from the harm of such a vaccine.
Physicians who prefer to remain non-objective and adhere to the dogma
that Lyme disease is over-diagnosed and over-treated without fully
understanding the rationale (it is not possible to understand this
rationale unless one is aware that Lyme disease can have several
subsets of clinical presentations, which were artfully not
identified in the journal articles so entitled); who have
participated in Lyme disease vaccine trials, and who have not
reported or recorded adverse vaccine reactions in patients,
violate these Principles, as well as being illegal in the
United States.
The anecdotal evidence is that some patients who were both infected
with
Borrelia burgdorferi and administered recombinant OSP A, the vaccine,
suffer adverse effects. The evidence exists for this in animal
studies (21). It is a violation of Principle 1.4 to not report
the adverse effects of new biotechnology products, such that
they continue to be used and threaten the well-being of others.
3) Investing excessive US NIH funding for developing
commercially valuable biotechnology to the near exclusion
of funding endeavors to discover specific cures for Lyme
and other TBDs or funding research that excludes clinical
description subsets of Lyme disease.
Efforts by many US UBRs and other scientists to identify
Borrelia burgdorferi genetic material for patenting and use in
vaccine development or diagnostic test kits which determine
immunological responses to these antigens and that are presently
of low scientific value but highly profitable, far exceed the
US Department of Health investment in finding a cure for Lyme
disease. The potential exists for biotechnology entrepreneurs
who are recipients of NIH funding for these endeavors to later
interpret the existence of LOADs infections based on the
patients serological response to their commercial test kits.
4) Replacing the diagnosis of a patient with an infectious
disease with a diagnosis of a disease that is thought
to be an autoimmune disease also effects a false
record of the prevalence of both the infectious disease
and the autoimmune illnesses and inappropriately shifts
the balance of funding away from the study of the infectious
disease. (1)
It shall be recognized by the example of the Human Rights abuses
in Lyme and/or Other Arthropod-borne Diseases, that the potential
exists to interpret the definitions and clinical manifestations
of other diseases to suit the potential profitability of those
diseases.
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