New York Times Op Ed CFS

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A Case of Chronic Denial

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

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

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Published: October 20, 2009

(Page 2 of 2) 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,â€

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.â€

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Related

Health Guide: Chronic Fatigue

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.