Correlations Between CFS and AIDS, Part I

by Neenyah Ostrom

FOREWORD

Chronic Fatigue Syndrome is not the only illness that is frustrating contemporary medical science. Gloom pervaded the Ninth International AIDS Meeting (held in Berlin in June 1993), as clinicians and researchers acknowledged that little progress was being made in fighting the illness.

The drug that has been touted for years by the U.S. government as stopping the progression of AIDS and extending patients' lives, AZT, does neither.

In fact, researchers revealed, AZT is so toxic that it may actually hurt AIDS patients more than it helps. And the immune system marker used to evaluate AIDS patients' health (and AZT's action), T4 cell counts, it was admitted in Berlin, has essentially no correlation with patients' health.

Although uneasiness and distress permeated news reports during and following the Berlin meeting, no reporter asked the obvious question: Is it possible that so little progress has been made in combatting AIDS because a mistake has been made in the definition of the epidemic?

This book will attempt to answer not only that question, but also other, potentially even more alarming, ones:

Is CFS actually part of the AIDS epidemic?

Are CFS and AIDS, in fact, the same illness?

Since the Berlin conference, for anyone interested in observing it, evidence linking these two refractory epidemics, AIDS and Chronic Fatigue Syndrome, has continued to accumulate.

Anxiety about the direction of AIDS research had really begun at the previous international AIDS conference, held in Amsterdam in 1992.

The bombshell of 1992's AIDS conference was the announcement that some researchers had identified cases of AIDS without evidence of infection with the "AIDS virus," HIV.

These "non-HIV AIDS cases" had severely depleted T4 (or CD4) cells, like AIDS patients; they also developed life-threatening opportunistic infections.

What wasn't known to most observers was that one of the researchers who had first publicly identified some of the non-HIV AIDS cases, Dr. Sidhur Gupta of the University of California, Irvine, is a Chronic Fatigue Syndrome researcher.

And some of the non-HIV AIDS cases, it was soon revealed, were actually CFS patients.

Shortly after the June 1992 AIDS conference in Amsterdam, Chronic Fatigue Syndrome researcher Dr. Paul Cheney announced that he had 20 CFS patients in his practice who had the same immune system deficiencies as the non-HIV AIDS cases.

The hallmark of the HIV-negative AIDS cases, as defined by the Centers for Disease Control and Prevention, is a depletion of the T4 (or CD4) cells.

Therefore, the CDC decided to call the HIV-negative, AIDS-like disease "ICL" (an abbreviation of the tongue twisting "idiopathic CD4-positive T-lymphocytopenia," which means, simply, an unexplained loss of T4 cells).

Most healthy people have a T4 cell count of approximately 1,000; a T4 cell count below 800 is considered abnormal. In order to be diagnosed with ICL, a person must have a T4 cell count of less than 300.

One of the most puzzling things about the ICL cases to AIDS researchers, other than the fact that they don't have HIV, is that most of the patients do not fit into recognized AIDS "risk behavior" categories; that is, they are not gay men, IV drug users or the sexual partners of people in those risk groups.

How can AIDS exist in the absence of the virus that causes it? None of the AIDS researchers gathered in Amsterdam in June 1992 seemed able to answer that question.

The mystery of what role HIV plays in causing the immune system deterioration and symptoms seen in AIDS deepened in early October 1992 when a British medical journal carried a report about a strain of HIV that does not appear to cause any kind of illness.

An Australian research team wrote to The Lancet to report on five people who had received blood from a man later found to be infected with HIV. However, ten years following the transfusions, the five blood recipients, as well as the original, HIV-positive donor, remained free of AIDS symptoms and were apparently healthy. The

Australian researchers concluded that all six people were infected with a non-disease-causing strain, or type, of HIV.

Studies have shown that HIV is spread only through blood products (i.e., in transfusions), or through exchange of bodily fluids, such as during sex. AIDS is considered to be primarily a sexually-transmitted disease, but one that requires many exposures -- some estimates run as high as 500 exposures -- to catch.

CFS appears to be transmitted much more easily; some researchers have guessed that it might be spread by saliva, as when people share eating utensils. Dr. Cheney, in fact, has reported that as many as 40 percent of his CFS patients also have a close associate -- not a sexual partner -- who has an illness similar to CFS.

Dr. Cheney's statistic -along with the mystery of why AIDS could develop without HIV infection and why HIV infection does not always lead to AIDS -- raises the possibility that a virus or bacteria that spreads more easily than HIV could be attacking people's immune systems.

Dr. Cheney described the immune system damage seen in CFS patients for the Food and Drug Administration in May 1993. Dr. Cheney told the FDA that five of his CFS patients had died during the preceding six months. Two of these patients committed suicide, which is all too common among CFS patients. But three of Dr. Cheney's patients who died, like AIDS patients, succumbed to overwhelming infections that their damaged immune systems just couldn't fight off.

But Dr. Cheney's CFS patients, like the ICL patients, appeared not to be infected with HIV, even though they developed AIDS-like immunodeficiencies and, in some cases, life-threatening opportunistic infections.

One of the AIDS-like immunodeficiencies seen in CFS involves cells in the immune system that are important in fighting infections: natural killer cells. Natural killer cells are the scavengers of the immune system; they attack and kill anything that appears to be foreign, including the body's own cells that are infected with viruses or other disease-causing agents. Because of that activity, natural killer cells are considered to be part of the immune system's front line of defense against both viruses and cancer.

Natural killer cells are also essential in protecting against tuberculosis, but at the same time, they are disabled by the TB germ. If a person's natural killer cells are not working properly, they are at much increased risk for developing active tuberculosis.

In both AIDS and Chronic Fatigue Syndrome patients, natural killer cells are almost completely disabled. One study of CFS patients found that their natural killer cells' functioning was decreased by 86 percent.

In other words, if a healthy person's natural killer cells worked at 100 percent capacity, a CFS patient's natural killer cells are working at only 14 percent.

Of all the conditions in which natural killer cell activity has been studied, only AIDS patients have been found to have natural killer cells as disabled as those of CFS patients.

However, most AIDS researchers have concentrated on studying the immune system cells implicated in the non-HIV AIDS cases, the T4 (or CD4) cells. T4 cells have been thought to be a good indicator of failing or improving health in AIDS patients; when their numbers decreased, patients were thought to be at higher risk of developing serious infections. Conversely, rising numbers of T4 cells were seen as proof that therapies, such as AZT, were improving patients' health.

As a result of this belief that T4 cell numbers correlated well with health status, very few scientists have studied the natural killer cells and how they fit into the puzzle of AIDS.

In early 1993, however, a study was published in the prestigious British medical journal Nature which not only forged several more links between the AIDS and Chronic Fatigue Syndrome epidemics, but also went a long way toward explaining why natural killer cells stop working in both syndromes.

National Cancer Institute researcher Dr. Robert C. Gallo and his colleagues made an astonishing assertion in the Nature study: They reported that a virus found to be actively growing in both AIDS and Chronic Fatigue Syndrome patients, Human Herpes Virus 6 (HHV-6), infects and kills natural killer cells. Moreover, according to the report from the Gallo laboratory, HHV-6 is the only virus known to be able to do that.

This landmark study answered two previously unanswered questions: It explains at least part of what the actively growing (or "replicating") HHV-6 is doing in AIDS and Chronic Fatigue Syndrome patients, and it partly explains why natural killer cells don't work in those patients.

In fact, Dr. Gallo and his coworkers suggested that HHV-6 "may contribute to the immune dysfunctions associated with CFS and AIDS."

Even studies of T4 cells published in early 1993 inadvertently linked the AIDS and Chronic Fatigue Syndrome epidemics.

The government scientist responsible for Chronic Fatigue Syndrome research at the National Institutes of Health, Dr. Stephen Straus, finally admitted in early 1993 -- after 13 years of trying to prove that Chronic Fatigue Syndrome is a type of depression -- that immune system deficiencies are part of the illness. Dr. Straus and his colleagues published data showing that CFS patients, like AIDS patients, experience a drop in the number of T4 cells in their blood.

Dr. Straus proposed a novel mechanism to explain the loss of T4 cells in CFS patients: The T4 cells of CFS patients are not destroyed, as they are in AIDS patients, according to Dr. Straus; the T4 cells are just hiding in the lymph nodes where they cannot be detected by blood tests.

Therefore, according to Dr. Straus, the T4 cell depletion observed in CFS patients is completely different from the T4 cell depletion seen in AIDS patients.

Unfortunately, Dr. Straus was unable to produce any evidence to support this theory (and still has not). Dr. Straus did not suggest, in contradiction to what Dr. Cheney has found, that any of his CFS patients had T4 cell counts so low they could be identified as ICL patients.

Almost simultaneously, Dr. Yvonne Rosenberg, a scientist working at the Henry M. Jackson Foundation Research Laboratory in Rockville, Maryland, announced that her studies had indicated that T4 cells in AIDS patients are not as decimated as they might appear to be. Instead, Rosenberg suggested, at the prestigious Keystone Conference held the last week of March, 1993, that AIDS patients' T4 cells are sequestered in the lymph nodes where they remain unmeasured by blood tests.

Although Dr. Anthony Fauci, the man in charge of AIDS research in the United States, attended the conference and presented the work his research group had performed on the lymph nodes of AIDS patients, neither he nor any other government scientist chose to comment about the parallel finding about T4 cells in the lymph nodes of AIDS and CFS patients.

And, as the Centers for Disease Control and Prevention (CDC) lurches toward finishing its several-year-long surveillance study to estimate how many people in the U.S. have Chronic Fatigue Syndrome, new information on that subject has come from a surprising source. A group of researchers at the New England Medical Center (in Boston) studying Lyme disease discovered that up to 50 percent of people diagnosed with Lyme disease actually have Chronic Fatigue Syndrome.

The Lyme disease researchers set out to answer another question altogether. They were trying to figure out why Lyme disease treatment is unsuccessful in so many cases.

Lyme disease is caused by a bacterium similar to the one that causes syphilis; it is treated with antibiotics. But a large percentage of people diagnosed as having Lyme disease didn't improve when treated with antibiotics, and the Boston researchers were trying to find out why.

They discovered that the patients whose Lyme disease didn't respond to antibiotics didn't have Lyme disease.

Even more surprisingly, they found that almost 50 percent of those wrongly diagnosed with Lyme disease had, instead, a putatively viral illness: Chronic Fatigue Syndrome.

In addition to its importance to people with Lyme disease and their physicians, this study potentially has enormous importance for the CDC surveillance study. The CDC study is examining people diagnosed with CFS, to see how many of them fit the very strict CDC definition. From those numbers, CDC investigators will extrapolate to the rest of the population and attempt to estimate how many Americans have CFS.

But they are not examining people who have been diagnosed with other, more accepted illnesses, like Lyme disease.

As the New England Medical Center study showed, there could be thousands -- or hundreds of thousands -- of people who have Chronic Fatigue Syndrome who have been diagnosed as having some other disease. Those people are quite unlikely to be counted by the CDC.

The CDC's estimate of how many Americans have CFS could, therefore, be terribly wrong unless this type of misdiagnosis is taken into consideration.

And this kind of misdiagnosis is likely to continue until there is a diagnostic test available for CFS.

Many researchers are attempting to create such a test for CFS. One line of research that originally appeared to be promising involved finding a retrovirus, like the virus that supposedly causes AIDS, in CFS patients. Some researchers had believed that finding such a retrovirus, and proving that it causes CFS, would result in a definitive way to diagnose the syndrome, as the HIV antibody test has done for AIDS.

But the "CFS retrovirus" research apparently ran into some roadblocks, and little progress has been made since the single report describing the retrovirus was published in early 1991.

Meanwhile, HIV has come under intensified scrutiny as a disease causing organism.

Although the controversy over whether HIV causes AIDS -- with or without the help of "co-factors" -has continued, few attacks on the retrovirus have appeared in the medical literature. In June 1993, however, an Australian research team published a devastating attack on the HIV antibody test, often called the "AIDS test."

The Australian research team, in fact, raised serious questions not only about whether HIV causes AIDS, but even about its existence as a distinct, infectious retrovirus.

Writing in the June 11, 1993, issue of the journal Bio/Technology, Eleni Papadopoulos Eleopulos and her colleagues examined the HIV antibody test and found that it had many problems.

Eleopulos and her co-workers found that the HIV antibody test is not consi­stent; that is, the same blood sample tested in several laboratories does not give the same results in every test performed. They suggest that some of the biological molecules that the HIV antibody test is measuring may be just background junk, cell proteins that are contaminating the test.

Even more disturbing, through an extensive study of the HIV literature, Eleopulos and her colleagues raised the question of whether HIV has ever really been isolated as a discrete entity. The answer they reached is that it has not.

This research caused Eleopulos and her co-workers to conclude that, not only is the HIV antibody test extremely unreliable and perhaps not at all useful, but that it may be a test for something that does not cause AIDS.

This takes us back to the original questions:

Is it possible that a mistake has been made in formulating the definition of AIDS?

Is Chronic Fatigue Syndrome actually part of the AIDS epidemic?

If this is even a remote possibility, why haven't other books been written about it? Why isn't every health reporter in the country writing about it, every investigative reporter investigating?

The answer, I believe, is pretty simple, and it is a problem that has dogged the AIDS epidemic from the beginning: denial.

From the very beginning of the AIDS epidemic, the syndrome has been characterized as affecting "the other": Haitians (i.e., blacks), gay men, IV drug users, and these groups' sexual partners. These individuals have been contrasted -- and still are -- with the "innocent victims" of the AIDS epidemic: the unknowing wives, and their babies.

AIDS patients, and people who test HIV-positive (whatever that actually turns out to mean), have been so badly treated, so discriminated against, so scapegoated and demonized that it is not surprising that there is an almost reflexive recoiling from the possibility that AIDS is not the narrowly-defined illness that it has been portrayed as being.

People have been murdered for testing HIV-positive; they have been accused of murder; they have been driven to suicide; they have been jailed; they have been denied jobs and health insurance and places to live.

Given all this, denial that AIDS could be even more widespread than government officials admit is not too surprising. What rational person would want to be diagnosed with an illness that could produce such terrible repercussions in every area of life?

Oddly enough, this denial appears to be most fiercely concentrated among medical researchers, and not among the patients themselves.

Chronic Fatigue Syndrome patients, in fact, know they suffer from a profoundly debilitating, life-altering illness that is destroying their immune systems.

Until the denial among medical professionals about the relationship between the AIDS and Chronic Fatigue Syndrome epidemics is overcome, however, it is difficult to imagine how either epidemic can be ended.

CHAPTER ONE

SOME CFS PATIENTS MAY BE "NON-HIV AIDS" CASES

A disturbing announcement was made at the July 1992 international AIDS conference held in Amsterdam: Several people with symptoms of AIDS, but who had no evidence of infection with either HIV-1 or HIV2 (the viruses generally believed, at the time, to cause AIDS), had been identified by the U.S. Centers for Disease Control.

A few weeks later, in early September, Newsweek made an even more shocking announcement: that Chronic Fatigue Syndrome researcher Dr. Paul Cheney had in his practice 20 CFS patients who had the same immune system deficiencies as the non-HIV AIDS cases revealed at the Amsterdam conference.

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