From the archives of The Memory Hole |
The following book review by Fred A. Cline, Jr. explores parallels between AIDS research and research into Chronic Fatigue Immune Deficiency Syndrome (CFIDS) and exposes the politics behind the reductionist approach taken by the HIV/AIDS establishment.
Johnson, Hillary
Oslerâs web; inside the labyrinth of the Chronic Fatigue Syndrome epidemic.
New York, Crown, 1996. 720 p.
I have just finished reading the above book, which I recommend to all who would attempt to understand the AIDS ăepidemic,ä CFIDS and all the other chronic diseases that plague our society.
One is, first of all, struck by the contrasts, as well as the similarities, between this book and Peter Duesbergâs Inventing the AIDS Virus. [Peter H. Duesberg. Inventing the AIDS Virus. Washington, D.C., Regnery Publishing, 1996. 722 p.] The Kirkus Reviews compares it to And the Band Played On by Randy Shilts, but this is based on the idea that retroviruses cause disease and are contagious÷a comparison that could only be made if one were to believe that HIV is the germ that causes AIDS and that CFIDS could be a contagious disease. One of the arguments used by Dr. Duesberg in proving that AIDS could not be caused by a pathogen is that the overwhelming majority of those afflicted with AIDS are men and that germs do not discriminate between the sexes. In the case of CFIDS we have a reversal of this phenomenon, so that most of the cases are women. If logic holds, then CFIDS also should not be caused by an infectious agent. In spite of this obvious biological law, so conditioned are we as a society to attribute all diseases to a germ, the clinicians and researchers (outside of those who steadfastly maintain that CFIDS is a psychiatric disorder) put all of their efforts into finding the bug that caused it. This book is largely the story of that search.
We are told that the author worked on the book for nine years. In amassing a wealth of material, the author has used the literary technique of shifting from person to person and locale to locale in a roughly chronological manner to make some sense out of this mass of information.
Sir William Osler (1849-1919), whose name appears in the title and is quoted frequently throughout the book, was a Canadian practitioner ăwho taught medicine...in Canada, the United States, and at the time of his death, England.ä (p.128). He was a great diagnostician who believed in listening to the patient.
The story begins with the outbreak centered at North Shore, Lake Tahoe, in 1984. Dan Peterson and Paul Cheney, two young and adventurous internists, who had just set up a practice at Incline Village, Nevada, soon find that their medical practice is dominated by this syndrome. They, both wanting to do the most for their patients, very quickly discover themselves dealing almost exclusively with it to the neglect of their other patients. Many patients can not afford the tests necessary so that they begin to absorb the costs in order to attract patients and thus gather more data on this puzzling disease. Paul Cheney, who also holds a Ph.D. in Physics, would later separate from his partner to establish his own practice in North Carolina, but his interest would not wane, and he would later come to question the whole scientific fix preferred by most researchers and the biomedical establishment. Because they pursued the infectious theory of the disease, they were soon in trouble with their neighbors, who depended upon tourism for a living.
In pursuing the etiology of this syndrome, the most significant breakthrough came with the tests administered by neuropsychologist Sheila Bastien of Berkeley, Calif. She ărevealed the disease to be a bona fide brain syndrome in 1986 and...by 1991 had evaluated more than three thousand patients.ä (p. 550). Other tests, including MRI, BEAM and other high-tech tests, revealed brain abnormalities in almost all of the patients.
Peterson and Cheney, as well as the patient support groups that sprang up, geared up to find the pathogen creating this brain abnormality. Through pressure put on Congress, a small amount of money was finally appropriated to do research, although most of the money was raised from a few well-to-do individuals. The focus of their research was to attempt to find a retrovirus as the primary cause. A major retroviral researcher, Elaine DeFreitas, did not complete her research because of the lack of money and her own disability caused by an automobile accident. HHV-6 was also considered, but it was never a major contender as the cause. As in AIDS, none of this research has been conclusive. The major difference is in magnitude, so that $35 billion has not been squandered as it has been in AIDS research.
The money appropriated by Congress was almost entirely misspent in a half-hearted attempt to find an organic cause of the disease. The governmentâs line has been, and continues to be, that propounded by Stephen Straus of the National Institute of Allergy and Infectious Diseases. He maintains that the disease is a psychiatric disorder. The CDC in its early investigations at Lake Tahoe, and later, has also largely followed this line of thought.
It is interesting to note that the author, while being largely stonewalled by the NIH, was given ready access to the files of the CDC. The CDC comes off as a bungling, self-serving governmental agency÷not the sinister generator of nefarious plots as related in the Duesberg book.
Since CFIDS has not been a reportable disease, it is not exactly known how many victims there are in the U.S. Estimates range from 1-2 million to 10 million. These people (from the index) have the following bizarre symptoms: aching joints, acne, aphasia, ataxia, balance problems, brain damage, cancer, cognitive dysfunction. cold sensitivity, dents in the legs, depression, lack of depth perception, disorientation, dizziness, drug sensitivity, electrical sensations in the teeth, exhaustion/fatigue, fever, loss of fingerprints, flu-like symptoms, focal paresis, hair loss, headaches, severe immune dysfunction, inability to concentrate, IQ loss, light sensitivity, loss of libido, loss of memory, metabolic rate disturbances, insomnia, seizures, a shrinking forearm, etc. In short, their lives become intolerable÷many lose their jobs, their marriages, their money, etc. Since it is not a recognizable disability, they seldom get support from their medical or disability insurance. Although the outcome of AIDS is often death, CFIDS victims are subjected to a lifetime of nightmarish existence with little hope for recovery. Many commit suicide.
Paul Cheney has recently dropped out of the search for a single bug that might cause the disease and has become a medical philosopher and part-time practitioner operating by telephone out of his remote digs on an island off the coast of North Carolina. He refers to this as his ăvirtual clinic.ä Because his understanding of the syndrome and its importance in relationship to other chronic diseases, I shall quote this section of the book in its entirety. (N.B. I must confess that I have written this largely as a vehicle to get out the message that Paul Cheney gives us. The value of the book to me has been to observe a brilliant mind coming to grips with an almost insoluble problem. He has reached the only conclusion that an honest heart and mind could come up with under the circumstances.)
During the two years since the CDC had publicized its failure to replicate DeFreitaâs experiments, Cheneyâs fascination with the trigger÷the viral agent that caused the disease÷had begun to wane. One of those who had influenced his thinking was Jeffrey Bland, a nutritional biochemist who had been a senior researcher at the Linus Pauling Institute and was the author of several books on nutrition. Bland decried what he described as the "post-Renaissance reductionism of modern medicine," the notion that all diseases can be reduced to a single-point cause÷a toxin or a microbe. Some diseases did not; instead, they fell into a complex matrix of predisposing genetics, environment, and myriad other elements.If, indeed, the government and the biomedical establishment are oriented toward a reductionist approach to disease, why then did they invent the AIDS virus (as Peter Duesberg and others contend) in the case of AIDS and have not even recognized that CFIDS is a legitimate disease? I seriously doubt they would have accepted the bug as Dr. Cheney believes had he and his friends discovered it.
"Weâre all unique," Cheney said. "If you give agent X to ten people, will they all get the same disease? No. HIV is a reductionist model that has failed." Cheney was convinced that the reductionist model ultimately would fail chronic fatigue syndrome sufferers, too.
"The way for me to have made a breakthrough with the CDC would have been to present them with a bug÷to define for them a reductionist course. And if Elaine or Michael Holmes or whoever has the bug were to present it to them, the finding would galvanize the agency, but [CFS] would go the way of AIDS." he continued, in a reference to medicineâs failure to cure or even dramatically medicate the fatal disease despite the presence of a bug and a multibillion-dollar research effort. "Whatever the mechanism of CFIDS, it becomes VERY complex. Reductionism wonât help the patient once the patient is ill. Without a tremendous advance in our ability to kill viruses, we have to start thinking about the PROCESS of illness."
The process of CFS was like falling dominoes, or the chain reaction of nuclear fission. Once the slide began, Cheney increasingly believed, the instigator was irrelevant to the outcome, which was inevitably a momentous and intricate constellation of "multiple injuries" to the body. "All great avalanches start with something very small," he said. "It is not unlike the theory of chaos in which a butterfly flaps its wings in Japan and starts a hurricane in Florida. It becomes like a snowball going downhill. One doesnât necessarily care what the little pea was that caused all this shit. You can find the pea, but what do you think that is going to do? NOTHING.
"These patients," Cheney continued after a pause, "are like a ship sitting in the water. And below the waterline the ship is full of holes and theyâre sinking. You keep plugging holes, but theyâre still sinking. Sometimes you do exactly the right thing, but you donât know it, because this disease is a MULTIPLE injury÷there are MANY injuries. If I disregulate your immune system, and that disregulates your brain and injures it, and the injured brain now makes hormones that become toxic to you, which further injure you so that your natural killer cells drop and allow the reactivation of viruses you caught in childhood, which further injure you÷we now have about seven holes below the waterline. Systems break down, problems beget problems. There are secondary, tertiary and "quartiary" issues. After a while, what is wrong with you is more important than what started the avalanche."
Looking back upon his own and his collaboratorsâ long search for the cause, the doctor noted, "We went through this rising tide of "science will prevail." But we need a new way of thinking. This disease is made up of complex networks of interacting systems. One should never give up looking for the bug, because÷who knows?÷it might exist. But we may never find the bug. And even if we find it we may never be able to do anything with it. "Reyeâs syndrome," he added in a reference to the deadly childrenâs disease that could be triggered by the administration of aspirin during fever, "is caused by chicken pox. But you canât cure Reyeâs by killing chicken pox. The issue of causality might be important in PREVENTING CFS, but it wonât help you once you get the disease."
Fred Cline, San Francisco
Wednesday, June 12, 1996
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