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October 21, 2009
Op-Ed Contributor
The New York Times


A Case of Chronic Denial
By HILLARY JOHNSON

EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?

XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).

That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.

The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nations presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors had worked themselves into a frenzy. The sufferers, a C.D.C. investigator told me at the time, were not normal Americans.

When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on chronic fatigue syndrome the use of syndrome rather than disease suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make chronic disbursements, as one of the academics joked.

An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as overly complicated and too confusing for many nonmedical persons.

Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (Its no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.

Many people dont realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.

Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: My H.I.V. patients for the most part are hale and hearty, she said, noting that billions of dollars have been spent on AIDS research. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.

As public health officials focused on psychiatric explanations, the virus apparently spread widely. In the new study, active XMRV infections were found in 3.7 percent of the healthy controls tested. Roughly the same degree of infection in healthy people has been found in the prostate research. If this is representative of the United States as a whole, then as many as 10 million Americans may carry the retrovirus.

It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome in the same way that not all of the 1.1 million Americans infected with H.I.V. will get AIDS.)

Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the beginning. In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitass findings.

That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.

Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who led the recent study, has revisited the cold case. Not surprisingly, the institute is private, created by the parents of a woman who suffers from chronic fatigue syndrome. But Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic.

When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer Institute, knew little about chronic fatigue syndrome. But she was intrigued that an unusually high number of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias; at least one had died. And she was also impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 chronic fatigue syndrome tissue samples going back as far as 1984.

My hypothesis was, This is a retrovirus, and I was going to use that repository to find it, Dr. Mikovits told me.

What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.

Its amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives, Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.

For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of chronic fatigue syndrome cant come soon enough.

Hillary Johnson is the author of Oslers Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.

Copyright 2009 The New York Times Company

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L.A.Times February 26, 2010
Blog Response:

Hillary Johnson is the author of Oslers Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.

Xenotropic murine leukemia virus-related virus (XMRV) is a human virus, not a mouse virus as you state. Indeed, XMRV is human gammaretrovirus, the first known human gammaretrovirus, and was discovered in 1996. One of the most important contributions of the Science paper of October 2009 was that its authors established beyond any doubt that XMRV was an infection of human beings, not mice.

The three European studies just published largely have not dashed hopes of people who suffer from "cfs" that XMRV is strongly associated with their disease, which was the only claim the Science authors made about the virus and its relation to "cfs." The response to these studies by the lay press around the world have instead dashed hopes that "cfs" finally might be investigated in a straightforward, scientific manner without the prejudice or medical politics that have clouded the discovery process over the last twenty-five years.

This is not a tennis match; it is not a ping pong tournament.

Not all scientific inquries are equal, nor all all scientists. Two of the European studies were commissioned by psychiatrists who have been outspoken in their respective countries that "cfs" is a false belief system of "illness attribution" that can be alleviated or even cured with talk therapy. These psychiatrists provided blood samples from people who, going by the selection criteria described in their papers, are unlikely to actually have "cfs." The patients were not selected by the same criteria as patients in the Science paper.

Patient selection criteria in the third study is also suspect. Equally important, none of the three papers followed the research methodologies used by the Science authors, even though these methodologies were well-described in Science. Nor did the authors of these papers seek patient control samples and reagents from Science authors by which they might have validated their findings.

Other scientists, and patients, are wondering why.

The Science authors demonstrated scientific rigor, conducting their experiments over a three year period; their work was subjected to an intense, six month peer review process. By contrast, the European studies were rushed into print; at least one of them had no peer review whatsover and in fact, the authors paid to have it published.

There will probably be more such studies, but there are also collaborative efforts in the works that are well-designed, well-controlled, and may well have a different outcome. The most one can say about the three European studies at this point is that they demonstrate the immense reluctance that some governments and institutions have displayed to the notion that "cfs" is an infectious disease, or even a disease. These studies have not disproved the association between XMRV and "cfs" that was established by the Science authors; generally, they have suggested that the psychiatrists who commissioned them may not know what "cfs" is, cannot select for "cfs," and that the bench scientists who produced the findings may be ill-equipped to identify XMRV in patients or healthy controls.

Estimates are that between 17 and 24 million people around the world are now sick with a disease that twenty-five years ago was relatively isolated and rare. Media coverage of this phenomenon has tended to be inadequate, at best. The very least the lay media can do at this point is refrain from covering studies that purport to "replicate" the discoveries in the Science paper as if they were covering a sports event.

Posted by: Hillary Johnson | February 27, 2010 at 08:13 AM

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