New York Times article on CFS.....and virus's they are finding that are common in these patients......very interesting

[Guest guest]

The New York Times

October 21, 2009

Op-Ed Contributor

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 nation's 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. (It's 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 don't 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. 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.

DeFreitas's 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

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 , 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.

"It's 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"

can't come soon enough.

Hillary is the author of "Osler's Web: Inside the Labyrinth of the

Chronic Fatigue Syndrome Epidemic." --