NYT CFS Cleaned Up

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A Case of Chronic Denial

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function getShareDescription() {

return encodeURIComponent('If further study finds that a retroviral infection

actually causes chronic fatigue syndrome, it may finally open doors for a new

treatment for this highly debated malady.');

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return encodeURIComponent('Medicine and Health,Chronic Fatigue

Syndrome,Viruses,Acquired Immune Deficiency Syndrome,Science (Journal)');

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return encodeURIComponent('By HILLARY JOHNSON');

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return encodeURIComponent('October 21, 2009'); 

Published: October 20, 2009

EARLIER this month, a study published in the journal Science anwsered 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

Health Guide:

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.â€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.â€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.