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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

Mr. Chairman,

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.

This

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

language.

The National Institutes of Health, the Centers for

Disease Control, and the Social Security Administration were

again urged or requested, as in previous years,

to improve

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."

The

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

problems.

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

indeterminate period.

Other patients experience a varying

pattern of disability, which may fluctuate over time.

Total

recovery is very rare; people get ill with CFS and stay that way.

America continues to pay increasing social and economic

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includes HIV, the so-called "AIDS virus"; and,

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irregularities are found in T-cells, B-cells, Natural Killer

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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

constitution of

the infected individual."

The director of the

CDC similarly reported that CFS involves "immunologic

abnormalities, such as specific antibody or natural killer cell

deficiencies."

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

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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.

They

often need

a residential-care facility where they can go to be

cared for,

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

been shown,

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 :

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is impossible to distinguish these diseases from each other.

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Interest in this disease continues to be very great.

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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

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