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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
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 (NIH) 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 inability to 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
Human Herpesvirus 6 (HHV-6), also known as HBLV:
⚫a retrovirus, of the same group of viruses that
includes HIV, the so-called "AIDS virus"; and,
Research continues to document that CFS is a disease which
involves the immune system. Since the early 1980s, a variety of biomedical research has reported immunologic irregularities and associated metabolic defects in CFS.
A short CFS workshop was held at the National Institutes of Health earlier this month. NIH staff reported that irregularities are found in T-cells, B-cells, Natural Killer cells. immunoglobulins, and other immune components, and a consensus of the conference was that the illness typically includes some immune abnormality as a trigger. One workshop presenter said that CFS can be characterized as a runaway up-regulation of the immune system."
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 illness, as the health insurance industry deems these treatments "experimental."
Patients continue to encounter a variety of difficulties in obtaining approval for Social Security disability benefits. Congressional caseworkers continue to handle numerous requests 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 EpsteinBarr 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:
into disorders that are very similar to CFS. rheumatologic disorders fibromyalgia and Lyme disease. Due to inadequate laboratory diagnostic tools, in at least some cases it is impossible to distinguish these diseases from each other. Blood tests for Lyme disease have very high rates of falsepositive and false-negative results: in the absence of better testing, CFS and Lyme disease are often indistinguishable.
In recent years. there has been increasing public and media attention focused on this disease problem. During 1990, dozens of newspapers and magazines carried stories on this issue, including a November cover story in Newsweek magazine.
Interest in this disease continues to be very great. Inquiries to the CDC related to this disease have been running at a rate of one to several thousand per month, and the NIAID Office of Communications has reported that inquiries about CFS are second only to AIDS.
There remains no Federal government data on the incidence or prevalence of CFS. However, results of studies in Australia and New Zealand, if applied to the U. S., suggest that this disease is affecting hundreds of thousands of Americans. If similarly applied, a German prospective study implies that well over 2,000,000 Americans may be afflicted. A CDC surveillance program document on CFS said that "the major justification for initiating surveillance is to address public health concerns about a 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
These include the