The Great AIDS and Chronic Fatigue Syndrome Debate
Are they part of the same epidemic, kept apart only by racism and anti-gayness? Why is there no Chronic Fatigue Syndrome Epidemic in the gay male community or in Africa? If you're white, heterosexual and immunologically impaired in America do you have Chronic Fatigue Syndrome while if you're black, heterosexual and immunologically impaired in Africa you're told you have AIDS? Is the political wall been AIDS and CFS the new medical apartheid? Has one epidemic been gerrymandered into two epidemics--one stigmatized and the other hidden behind a veil of contrived confusion?
Information about CFS is often political propaganda posing as science. Government scientists and defensive patients often reserve the right to determine what a fact about CFS is and isn't. To see how political CFS is, check out the battle taking place over it on Wikipedia.
Hopefully the quotes below will inspire you the learn more about this debate and decide for yourself. Given that autism spectrum disorders, ADHD, cancer, diabetes, M.S. and many other medical problems may be connected to this political mess, everyone has an investment in the resolution of this issue.
On September 7, [1992] Newsweek published an article called "AIDS or Chronic Fatigue?" Aside from New York Native publisher Charles Ortleb, who for years had insisted that that AIDS and CFS were not merely related but the same disease, Newsweek's science editor Geoffrey Cowley was the only journalist who, prompted by the phenomenon of HIV-negative AIDS, ventured to describe the ways in which the two conditions overlapped and to suggest that scientists explore the relationship between them. . . . "So far," Cowley wrote, "the search has produced few answers. But as more cases come to light, it's becoming clear that the newly defined syndrome has as much in common with CFS as it does with AIDS." --Hillary Johnson, Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (p. 608)
In the USA, CFS patients are the equivalent of an AIDS patient in Africa. . . . If I lived in Africa right now I would have an AIDS diagnosis in hand. Rather, because of geography, capitalism, and politics, I am both a CFS and an HIV-Negative AIDS patient instead. But, in the USA, nobody takes CFS seriously, because the disease has a belittling name -- which hardly portrays its severity. We are sick, suffering, and chronically ill. I recognize and understand that many CFS patients do not like the big, bad, ugly word called "AIDS", or the thought that they may progress to an HIV-Negative AIDS diagnosis. Believe me, I was not really too keen on the idea at first either, and, as ailing patients, we walk in the same shoes. But, as a humanitarian, I have millions of lives to think about, and you will not find a stitch of stigmata in me. I know that the "AIDS" naming convention more accurately portrays the horrific essence of the CFS illness. I have found that when you say the word "AIDS", people listen. People quickly understand. People quickly care. If we can get people to care enough to understand the horrific depths of this illness, to care enough to understand it's impact on humanity, and to care enough to fund CFS: AIDS research then CFS patients need to get over their fears of saying such a simple word: AIDS. AIDS. AIDS. AIDS. AIDS. The truth is, if it is triggered by a virus (or bacteria) and it causes an immune deficiency, then it is what it is. I can already sense that our paradigms are shifting. I am certain that with a clear vision -- and a whole lot of noise -- that change is evitable. I respect anybody who stands for a belief, but the once-progressive AIDS dissidents are becoming just another conformed, closed-minded, orthodoxy with unproven theories and a lot of rules and restrictions. I would rather stand by myself -- as a non-conformist with a fresh ideology -- than to follow misguided people in the wrong direction. -- An Anonymous Patient Straight Talk About CFS & Non-HIV AIDS
The Forward to America's Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS
by Neenyah Ostrom
Published in 1993 by TNM, Inc.
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 combating 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 co-workers 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.
The chronic fatigue syndrome (CFS), formerly known as chronic Epstein-Barr virus syndrome, is a clinical state of some complexity and uncertain etiology. In order to characterize in a comprehensive manner the status of laboratory markers associated with cellular immune function in patients with this syndrome, 30 patients with clinically defined CFS were studied. All of the subjects were found to have multiple abnormalities in these markers. The most consistent immunological abnormality detected among these patients, when compared with normal controls, was low natural killer (NK) cell cytotoxicity. The number of NK cells, as defined by reactivity with monoclonal antibody NKH.1 (CD56), was elevated, but the killing of K562 tumor cells per CD56 cell was significantly diminished. --N G Klimas, F R Salvato, R Morgan, and M A Fletcher, Immunologic abnormalities in chronic fatigue syndrome, J Clin Microbiol. 1990 June; 28(6): 1403–1410
Technically, HHV-6A is a lymphotropic virus that is genetically related to human cytomegalovirus. In a recent conversation I had with Dr. Phillip Pellett, herpesvirus section chief at the CDC, he stated that "HHV-6A is associated, at this point, with bone marrow problems and AIDS."
It is my belief that those diagnosed with CFIDS[Chronic Fatigue and Immune Dysfunction], but have HHV-6A, are in fact fighting a serious persistent viral infection. I have been tested several times now for HHV-6A and even after antiviral therapy, I continue to be positive for the virus. This indicates a persistent infection-- one that my body cannot clear. HHV-6A is known to be a cytopathic pathogen with a powerful ability to infect and kill cells. According to Dr. Robert Gallo and Dr. Paulo Lusso, HHV-6A is emerging as a virus that can directly infect or interfere with the function of several elements of the immune system including CD4 and CD8 T-cells, NK-cells, some B-cells, and mononuclear phagocytes. --Interview with Alan Cocchetto, Medical Director of The National CFIDS Foundation
Controversy rages about the transmissibility of ME/CFS, and whether it is one organism or any of several organisms or environmental factors/toxins that trigger the disease and perpetuate it to chronicity. But the epidemic history strongly supports a contagious factor, at least in the acute phase of sudden onset ME/CFS. --National Alliance for Myalgic Encephalomyelitis
There is ample evidence for contagion. Over the last decade, scores of cluster outbreaks of CFS have been reported to the CDC from all over the country. A cluster is a sudden outbreak among a group of people who are connected to one another by place of work or residence. These include an outbreak among children in a small, update New York town called Lyndonville, an outbreak in a Nevada desert town called Yerington, and an outbreak among policemen in Spokane, Washington. In a 1992 research paper on the Nevada outbreak, Harvard researchers pointed out that there was enough evidence to "suggest the possibility of an infectious agent transmissible by causal contact." --Hillary Johnson in an interview published in the newsletter of The Carousel Network, May 1996, pp. 2-5.
A baffling disease that came to notice in 1984 is a sorry example of how medical scientists can still selectively ignore disorders that do not fit established patterns of illness . . . . It was dismissed as yuppie flu, even though some patients are periodically disabled and develop measurable muscle loss, immune deficiencies, or unexplained lesions in the brain . . . Last week, three researchers reported that a new and exotic microbe--a member of the same family of retroviruses that cause AIDS--is linked to chronic fatigue syndrome. Beyond providing the first scientific clue in what may cause or spread the disease, the discovery validates that chronic fatigue syndrome is a real and serious disorder. . . .Up to five million Americans are already afflicted with chronic fatigue syndrome. --Editorial, Boston Globe, September 10, 1990
The Enigma That Won't Disappear: The Recurring Problem of Non-HIV AIDS
by Neenyah Ostrom
New York Native, issue #639, July 17, 1995
When the first cases of "AIDS" without HIV were revealed at the Ninth International Conference on AIDS in Amsterdam, American public health officials moved quickly to contain world-wide speculation as well as public concern in the United States. Although potentially hundreds of cases of "non-HIV AIDS" were reported by the group of international researchers gathered in Amsterdam in July 1992, U.S. health authorities declared the condition to be a non-phenomenon almost immediately upon returning home.
However, researchers who'd been tracking "AIDS"-associated conditions occurring in people not infected with HIV--such as Kaposi's sarcoma and Pneumocystis carinii pneumonia (PCP)
--began reporting those cases in international journals like The Lancet.
The "non-HIV AIDS" cases raised fundamental questions about the syndrome.
For instance, the hallmark of "non-HIV AIDS," just like regular "AIDS," was the near-disappearance of a type of immune system cell. These are the CD4-positive T-lymphocytes, also called T4 cells (or simply CD4 cells).
It was widely assumed in 1992 that HIV was causing the destruction of the T4 cells observed in "AIDS," either by directly killing them or by setting in motion an indirect mechanism through which the cells were killed.
But if serious CD4 cell depletion could occur in the absence of HIV, was HIV really responsible for the deaths of those cells in "AIDS" patients?
Similarly, if "AIDS"-associated conditions like KS and PCP could occur in the absence of the "AIDS virus," then what role was HIV really playing in causing those manifestations of the syndrome?
A report of some non-HIV retroviral particles being found in some "non-HIV AIDS" patients raised one of the questions asked most frequently in media reports about the phenomenon: Is there another virus capable of causing "AIDS?"
If so, is it a retrovirus? Or could it be another type of virus altogether?
Is there another virus that could create life-threatening immunosuppression by destroying CD4 cells?
It was in the shadow of these questions that a meeting was held at the U.S. Centers for Disease Control in Atlanta on August 14, 1992, to examine the data collected on the "non-HIV AIDS cases." Included was some information indicating that a type of retroviral particle, unrelated to HIV, might be present in the patients who had "non-HIV AIDS."
What emerged from that meeting was a statement from the CDC asserting that there was no new "AIDS" agent lose in the world--even though, in part, it was the CDC's initial statement about the "non-HIV AIDS" cases that had raised the question in the first place.
The abstract (#Q347) presented to the international "AIDS" meeting in Amsterdam by CDC scientists Thomas J. Spira and Bonnie M. Jones reported that CDC had "identified six persons with persistently low CD4 count (less than 250/cubic millimeter) who are repeatedly HIV-seronegative."
These patients had developed "AIDS"-related conditions, including (but not limited to) PCP, cryptococcal meningitis, oral and vaginal candidiasis, Kaposi's sarcoma, as well as atypical pneumonias caused by mycobacteria (an organism related to the one that causes tuberculosis).
After providing a few more clinical details in their abstract in Amsterdam, Spira and Jones concluded, "In summary, we have identified six persons with low CD4 counts without evidence of HIV infection with clinical manifestations of opportunistic infections or tumors of varying severity. This suggests that HIV may not be the only infectious cause of immunosuppression in man."
About a month later, at the August meeting in Atlanta, CDC researchers an-nounced that there was no new "AIDS virus," that the people with "non-HIV AIDS" appeared to have nothing in common--therefore, they concluded, it was not an emerging epidemic.
A report of the meeting published in the British journal The Lancet August 22 announced that the phenomenon of "HIV-negative AIDS" had also had a tongue-twister of a name conferred upon it: "idiopathic CD4-positive T lymphocytopenia," abbreviated ICL.
That means, in short, an unexplained loss of T4 (CD4) cells.
The Lancet's correspondents were John P. Moore and David D. Ho from the Aaron Diamond AIDS Research Center in New York City, where some of the ICL cases were being studied.
Moore and Ho suggested, in concluding their report, that "Whether a [new] retrovirus is really involved will emerge only after a period of careful research. But investigators should remove the retroviral blinkers and look more broadly at these cases, especially to define their immunological profile."
U.S. government researchers had no intention of removing those blinkers. In early 1993, Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases, wrote an editorial assessing the public health implications of the "non-HIV AIDS" cases.
He concluded, not surprisingly, that the cases were not "AIDS" because they were not caused by HIV and furthermore, that they were not particularly important.
"We can reasonably conclude that ICL is a rare syndrome, is not new, and is not caused by HIV-1 or -2 or human T lymphotropic virus (HTLV)-I or -II nor by a transmissible agent," Fauci wrote in the February 11 issue of the New England Journal of Medicine. "Furthermore, the syndrome is heterogeneous in that it affects a demographically diverse population and has different clinical manifestations, both of which make it dissimilar from HIV infection and AIDS."
All this time, it was known by government and private-sector researchers that there was, in fact, a second virus that preferentially infects and kills CD4 cells: Human Herpes Virus 6.
In 1992, scientists were just beginning to learn how important active HHV-6 infection is in destroying "AIDS" patients' health.
It was known at that time, however, that another group of patients also had active HHV-6 infections: Chronic Fatigue Syndrome patients.
And further research into the ICL phenomenon by non-governmental scientists was yielding evidence that the ICL cases were emerging in part from that other group of patients: those with Chronic Fatigue Syndrome.
One of the physicians who'd broken open the "non-HIV AIDS" story was Dr. Sidhur Gupta of the University of California, Irvine. Gupta was studying Chronic Fatigue Syndrome patients when he discovered some cases of CD4 cell depletion in the absence of HIV.
Other CFS researchers also came forward to report they had CFS patients with severely depleted CD4 cell counts, but who were not infected with HIV. Among them was Dr. Paul Cheney, one of the physicians who discovered CFS in 1984.
Cheney told Newsweek's Geoffrey Cowley that his CFS patients "suffer an array of illnesses--some mild, some devastating--that come and go for years." Some of his patients are even infected with "what appear to be HIV-like viruses," Cowley reported in the September 7, 1992, Newsweek.
"Cheney says 30 to 40 percent of his patients report having a close associate with a similar illness, but he has never managed to identify `a behavior pattern that places people at risk,'" Cowley wrote.
Cowley noted that not only Cheney, whom he described as "the nation's best-known chronic fatigue syndrome specialist," but also Harvard University researcher Dr. Anthony Komaroff, had numerous patients with dangerously low CD4 cell counts. These include not only patients with T4 cell counts below 300--the ICL cut-off point--but also numerous patients with T4 cell counts below 500, a level considered to be dangerous to "AIDS" patients. Any count below 800, according to Cowley, is abnormally low.
All of these findings, it is important to point out, came from the private sector.
Finally, the government's own CFS researcher, Dr. Stephen Straus at the National Institute of Allergy and Infec-tious Diseases, admitted in early 1993 that his studies of CFS patients' T4 cell counts showed a serious depletion in some cases.
Straus stressed, however, that the CD4 cell depletion seen in CFS patients was totally different from that seen in "AIDS" patients. In CFS patients, the T4 cells were not destroyed, Straus hypothesized--based on no evidence--they were just "hiding" in the lymph nodes.
Unfortunately for Straus, an "AIDS" researcher almost simultaneously suggested the same mechanism for the disappearance of CD4 cells in "AIDS" patients.
Although major U.S. public health officials like NIAID's Fauci have continued to scoff at the idea of "AIDS" without HIV--since they gave the syndrome a circular definition, requiring the presence of HIV in the first place--something is still happening that requires government scientists to deny the existence of "non-HIV AIDS" over and over.
In fact, a brand-new report published by scientists at the Centers for Disease Control and Prevention emphasizes that unexplained, exceptionally low CD4 cell counts among children is nothing to be concerned about.
The report examining inexplicable, low CD4 cell counts in children was published by Dr. Mark N. Lobato and colleagues from the CDC in the June 1995 Pediatric Infectious Disease Journal. The study was a follow-up to the 1992 report of "non-HIV AIDS" cases at the international meeting in Amsterdam.
Lobato and co-authors castigated the researchers who made the original "non-HIV AIDS" cases public--cases, it turned out, that government scientists had known about since 1983--for suggesting a new, undetected virus might be causing them.
"Investigators describing these cases suggested that a new human retrovirus or other new infectious agent may have caused the low CD4 T lymphocyte counts, a theory that produced public alarm and considerable news media attention," Lobato and co-authors wrote in the Pediatric Infectious Disease Journal.
"In response to these concerns, the CDC and state health departments initiated surveillance in July, 1992, to detect HIV-seronegative adults and children who had low CD4 lymphocyte counts or percentages," they explained.
According to a report by Salynn Boyles in the July 3 AIDS Weekly, Lobato and co-workers "investigated children identified through surveillance to determine if a retrovirus or other infectious organism was the cause of low CD4 T lymphocyte counts, to estimate the extent of this condition, to learn risk factors if the condition was transmissible, and to describe longitudinal CD4 T lymphocyte measurements in relation to possible opportunistic infections."
Eighteen children were studied; ten were boys, and 14 were black. All had been observed to have a low CD4 cell count in infancy (median age, ten months). According to Boyles, "Three children had opportunistic infections and two still had low CD4 T lymphocyte counts five and seven years later."
In other words, this was not a time-limited condition that had no ill effect upon the children's health.
While 11 of the 18 children with low CD4 cell counts were born to HIV-infected mothers, none was infected with HIV.
Additionally, no other family member (other than, presumably, the mothers) had what Lobato and colleagues determined to be immunosuppressive diseases.
"We conclude that negative retroviral tests and lack of illness among their family members do not support the hypothesis that a retrovirus causes CD4 T lymphocytopenia among these children," Lobato and colleagues wrote in the Pediatric Infectious Disease Journal. "Persistent CD4 T lymphocytopenia well beyond recovery from an opportunistic infection suggests that the immunosuppression may not be the result of the acute infection."
These statements raise a few unanswered questions. For instance: Since when are retroviral infections considered to occur in family clusters, so that the lack of retroviral infections in family members rules out the presence of a new virus?
And which comes first, the chicken or the egg: the "acute infection" or the "opportunistic infection?"
The conventional wisdom about "AIDS" is that the "acute infection," generally assumed to be HIV, weakens the immune system so that "opportunistic infections" can take hold.
Lobato and colleagues, however, are suggesting that what they are calling "opportunistic infections" are causing immunosuppression--not the other way around, as is generally assumed.
Follow-up, Lobato and colleagues conclude, is needed.
The boundary between AIDS and CFS grew even thinner that spring [1994] when Anthony Kamoroff and several Harvard colleagues reported that the brains of patients with AIDS dementia complex and those with CFS were remarkably similar when viewed by SPECT scan imaging. --Hillary Johnson, Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (p. 655)
In 1994, the Centers for Disease Control (CDC) published a brochure titled The Facts about CFS, which estimated the prevalence of CFS to be from 4 to 10 cases per 100,000 people (or less than 19,000 adults in the United States, on the basis of the number of people in the United States who are 18 years of age or older [193,650,000]; U.S. Bureau of the Census, 1994). These rates would appear to be discrepant from the unusually high number of telephone calls (up to 3,000 a month) that the CDC had been receiving from people requesting information about CFS (McCluskey, 1993, p. 288). If CFS epidemiologic studies had, in fact, underestimated the number of people afflicted with this disease, this is highly problematic in terms of the adequacy of the public health response to this disorder. --Leonard A. Jason et al., Politics, Science, and the Emergence of a New Disease: The Case of Chronic Fatigue Syndrome
People who have chronic fatigue syndrome, like people who have AIDS, often develop allergies when they have never had allergies in their lives before. They will develop very severe sensitivities to medications, for instance. They will develop food sensitivities they never had before. And what happens in both AIDS and chronic fatigue syndrome is that while one portion of the immune system shuts down, another portion of the immune system, the portion that causes allergic reactions, is revved up almost 100 percent of the time. These people respond immunologically to things that before they got sick their immune systems wouldn't even have recognized. --Neenyah Ostrom, Radio Interview
From the blog of an HIV-negative person suffering from CFS:
I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and HIV-NEGATIVE AIDS, idiopathic CD lymphocytopenia. With these two clinical diagnoses, I believe that makes me living proof that the AIDS-like CFS/ME is transmissible, something that the medical establishment seems unable to admit or to acknowledge. I also believe it makes me living proof that Chronic Fatigue Syndrome and HIV-NEGATIVE AIDS are basically the same mysterious immune disorder.
Three years ago, after a heterosexual sexual encounter, I became seriously ill with what looks like the natural disease progression of AIDS. After an "acute infection" and a "period of asymptomatic health", I have fallen extremely ill to an unrelenting, progressively-worsening AIDS-like demise. I can pinpoint exactly when I was infected with my "chronic viral syndrome of unknown etiology" and because the "acute infection" stage was so distinguishable, I can also pinpoint exactly when my undiagnosed illness left my body and infected yet another host. I am a link in a chain of systemically undiagnosed, sexually-connected, heterosexual sick people. Whatever I am currently dealing with, it strongly resembles classic textbook HIV/AIDS disease. But, to add to my inquiry, I also clinically satisfy the CDC's criteria for the diagnosis of Chronic Fatigue Syndrome.
Increasingly, I have become concerned that my systemic diagnosis is caught up in the treacherous politics of CFS/ME and AIDS. Most people with CFS/ME do not like to talk about the many symptoms and immune abnormalities that they share with AIDS patients. I also suspect that most ailing patients would rather be told that they have the very mysterious Chronic Fatigue Syndrome than to be told that they have AIDS.
I have a Master's degree. I am a director at my firm. I used to be a triathlete. I have never used IV drugs. I have never traveled abroad. I can count my sexual partners on two hands. Statistically speaking, I know that my undiagnosed infectious and communicable disease is not rare........so, you tell me, if they are not in the miscellaneous CFS/ME category, where are all these other immunosuppressed people?
Anyone with Chronic Fatigue Syndrome, who does not consider the possibility that CFS/ME will eventually progress to a NON-HIV AIDS diagnosis, is very well trumping their own ability to diagnosis the root cause of their illness. Why isn't CFS/ME a reportable disease overseen by our public health department?
Why are we not reading about Non-HIV AIDS cases (and/or the AIDS-like nature of Chronic Fatigue Syndrome) on the front pages of every newspaper in America? And if CFS/ME is Non-HIV AIDS, then, depending on who you believe, there are anywhere between 500,000 - 14,000,000 Americans out there with a transmissible illness. If that is what it truly is, our new form of AIDS dwarfs the ‘original’ AIDS epidemic ---> TENFOLD.
I want honest answers for myself, for everyone who is suffering from this hideous illness, and especially for those who remain uninfected by my undiagnosed infectious and communicable disease. As worrisome as my health is to me, I am extremely troubled by the strong likelihood that more people are being infected every minute that HIV-NEGATIVE AIDS cases (like mine) are allowed to go undetected -- especially if it turns out that AIDS and CFIDS/ME are basically the same disorder.
You can label my AIDS-like illness whatever you wish. I would even allow you to call it infectious-Chronic Fatigue Syndrome, even though it is utterly beyond my realm of comprehension as to how the medical establishment can generically name an entire disease paradigm based on just one (of my numerous) symptom(s).
Regardless of how politics may try to dissuade or delude you, all you need to know is that my idiopathic immune dysfunction is infectious! It is contagious! And it is spreading, unleashed, in the world's population!
I am not afraid to say that I have AIDS without HIV -- idiopathic CD lymphocytopenia -- my second official clinical diagnosis. I am equally as unafraid of saying the most obvious thing about Chronic Fatigue Syndrome: IT SURE DOES LOOK LIKE AIDS TO ME.We talk openly about preparing for an impending Avian Flu pandemic. Why not talk about the HIV-NEGATIVE AIDS epidemic that already exists (and is spreading) amongst us?
If it takes courage to think and to say the things that I do, I hope that there will be a miraculous outbreak of bravery from coast-to-coast. -- Straight Talk About CFS & Non-HIV AIDS