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Drug and Alcohol Service Providers Organization of Pennsylvania
Drug and Alcohol Treatment Association of Rhode Island
Tennessee Alcohol & Drug Association
Wisconsin Association on Alcohol & Other Drug Abuse
Legal Action Center
STATEMENT OF THE DORIS DAY ANIMAL LEAGUE
The Doris Day Animal League, with 400,000 members nationwide, is an organization dedicated to increasing protections for animals through the legislative process.
We have recently been made aware of biomedical research experiments conducted by Dr. Charles Larson of Northwestern University involving macaques. The National Institutes of Health (Nill) provided funding for this research, Grant #2 ROI NS 19290-04, on the basis of obtaining substantial human health benefits. Several biomedical professionals have reviewed Dr. Larson's research protocol and have questioned the probability of deriving human health knowledge from his research.
Dr. Larson's protocol states that he intends to provide insight into Huntington's disease, Parkinsonism, and spastic dysphonia through his vocalization experiments with animals. Dr. Roger Fouts, an expert in primate communication, asserts that human speech and primate vocalization are not comparable. Ironically, Dr. Larson himself, in a 1985 paper, admits that human speech may be fundamentally different from animal vocalization and that the extent to which the midbrain matter (periaqueductal gray) is involved in human speech is yet to be determined. If Dr. Fouts and, indeed, Dr. Larson are in agreement regarding the izability :o extrapolate monkey vocalizations to human speech, then Dr. Larson's statement of significance is not relevant to his research.
The scientific community is experiencing great difficulty in procuring funding for important research. This research has been funded with approximately $472,370 taxpayer dollars. This money should be appropriated to other projects.
It is the review of the protocol demonstrating an apparent lack of applicability to human health advances and the gross amounts of taxpayer funds appropriated for this research which concern the members of the Doris Day Animal League. Although the committee does not generally address specific protocols, we urge the committee to request that the NIH refuse to renew funds for Dr. Larson's research.
STATEMENT OF BARRY SLEIGHT AND ROY SNOEYENBOS
we provide this testimony as individual
patients with Chronic Fatigue Syndrome, or CFS, and also in
cooperation with nearly 400 patient support groups and national
organizations involved in matters related to this illness.
disease has also been known by other names, including Chronic
Epstein-Barr virus Syndrome, or CEBV, and Chronic Fatigue Immune
Dysfunction Syndrome, or CFIDS.
The 1990 Labor-HHS-Education Appropriations Bill was
accompanied by a report, number 101-516, which contained related
The National Institutes of Health, the Centers for
Disease Control, and the Social Security Administration were
again urged or requested, as in previous years,
activities related to CFS.
Our continuing thanks to this
Committee, and its able staff, for leadership in the Federal
public health response to this disease.
A small CDC surveillance program continues, and has recently
been augmented by related research studying the blood and immune
systems of some patients with this illness.
A CDC document has
called CFS an "emerging epidemic."
case definition used by the CDC in its research includes
many of the major symptoms that our patient population suffers
with: fever, sore throat, swollen and painful lymph nodes, muscle
weakness and aches, fatigue, headaches, joint pain, sleep
disturbances, fatigability upon exercise, and neurological
This definition has intentionally been kept narrow for
research purposes; there are over twenty other symptoms listed in
the medical literature for this disease.
The most severely disabled patients are bedridden for an
Other patients experience a varying
pattern of disability, which may fluctuate over time.
recovery is very rare; people get ill with CFS and stay that way.
America continues to pay increasing social and economic
includes HIV, the so-called "AIDS virus"; and,
irregularities are found in T-cells, B-cells, Natural Killer
In years past, the director of the NIAID has reported to
the Congress that "it seems likely that CFS is triggered by an
infectious agent, probably a virus, which grows in lymphoid
tissue and results in immune dysfunction" and that "immunological
abnormalities can be the direct result of viral destruction of
lymphoid cells, with the result dependent upon the subset of
cells preferentially infected by the virus and the immunogenetic
the infected individual."
The director of the
CDC similarly reported that CFS involves "immunologic
abnormalities, such as specific antibody or natural killer cell
During 1990, evidence of
a retrovirus, of the same group of
viruses that includes the AIDS virus, was found in some patients
with CFS via four different biomedical research technologies.
The CDC public information pamphlet on CFS says that the disease
involves "an inherent or acquired immunologic abnormality."
At the same NIH workshop mentioned above, researchers
discussed the great need for additional, coordinated research
costs of this disease as lost jobs, productivity, and tax
receipts, and broken homes, bankruptcies, and increased health
care and disability costs.
Typically, a person becomes sick with
Chronic Fatigue Syndrome, is quickly fired from work or forced to
resign, and then has no health or disability insurance at a time
of great medical expenses.
When health insurance is available,
it usually will not cover any treatments or therapies for this
from constituents with CFS for assistance in receiving benefits.
Patients also find that there is essentially no
institutional or respite care available for this illness.
a residential-care facility where they can go to be
as they are often too sick to care for themselves.
Biomedical researchers have been providing increasing
information in areas related to CFS and are increasingly focusing
on untoward outcomes,
as we will note.
Many irregularities have been documented in CFS patients,
including heart and breathing irregularities, and abnormal muscle
metabolism and structure.
Brain, neurological, and cognitive irregularities have also
via neurometric testing and new technologies
including CAT, PET, SPECT, BEAM, and MRI scanning.
This illness was
once thought to be caused by the Epstein
Barr virus, but the Director of the NIAID summarized part of
recent research thought two years ago when he testified to the
Congress that the connection to this virus is "weak at best."
During 1990 three virus types or groups combined with
genetic predisposition have continued to be suggested by
researchers as possibly being involved in some way in the Chronic
Fatigue Syndrome :
is impossible to distinguish these diseases from each other.
Interest in this disease continues to be very great.
possible epidemic of the syndrome in the U. S."
We applaud the Federal response
to Chronic Fatigue
Syndrome; however, this response should be dramatically increased
to meet the challenge posed by the chronic nature of this disease
and the likely large numbers of Americans that may become ill.
We continue to be concerned that the activities of the
Public Health Service regarding CFS continue to be less than is
consistent with an "emerging epidemic."
The National Institute
of Allergy and Infectious Diseases has slowly expanded its
related extramural research activities, but still funds only