Article from WSJ

[Guest guest]

By AMY DOCKSER MARCUS

was working as a coal miner in Utah in 1982 when he got the flu

and " it didn't go away. " Diagnosed with chronic fatigue syndrome in 1994, he has

been living ever since with symptoms that include constant pain, an inability to

concentrate and exhaustion so severe, he can't lift his arms.

Worse than his condition, Mr. says, has been the humiliation and

ostracism he's suffered from the scientific establishment, which he accuses of

ignoring or downplaying the existence of the disease for the past 25 years.

View Full Imagen Hoffman/Prime for the Wall Street Journal

Dr. Stuart Le Grice: In the hot seat.

Now, after a 2009 study claimed to find a link between chronic fatigue syndrome

and a virus called XMRV, the 52-year-old has become a leader in patient efforts

to push scientists to finally solve the mystery of his disease. He's attending

scientific conferences, organized patient meetings with government officials and

helped mastermind an advocacy campaign that sent daily emails to government

agencies demanding action.

Stuart Le Grice is skeptical about XMRV's role in the disorder. As head of the

National Cancer Institute's Center of Excellence in HIV/AIDS and cancer

virology, he is sympathetic to Mr. and other patients. But he insists

that science can't be rushed. Desperate patients who want immediate answers risk

diverting attention from essential research. " There's a danger of deflecting us

from what we really want to do, " Dr. Le Grice says.

The two viewpoints show the gaping divide between many chronic fatigue syndrome

patients and scientists studying the disease. Although research linking XMRV and

a family of retroviruses to CFS is still preliminary, an emotional debate has

exploded over whether the finding is correct.

Patients seeking a speedy cure for all sorts of diseases have clashed before

with scientists, who insist that science has to follow prescribed steps to be

conducted properly. As the debate over XMRV illustrates, such clashes are

starting at increasingly early stages of the scientific process, sometimes

altering the way research is conducted.

A Short History of XMRV

View InteractiveCleveland Clinic

See a timeline of the history of the XMRV retrovirus.

* More photos and interactive graphics

The Internet has given patients the ability to organize and rapidly disseminate

medical information—and rumors as well. Patient advocacy groups are

increasingly

powerful, involved in central endeavors such as funding research and collecting

samples critical to experiments.

Patients say they bring a sense of urgency, forcing scientists to collaborate in

order to speed up the search for therapies. They say that scientists often

pursue research questions that are intellectually interesting but bring them no

closer to finding cures.

Scientists warn that putting early science in the public spotlight can not only

slow down research, but also backfire.

" The faster we try to go, the bigger chance we have of overlooking some small

but important point, " Dr. Le Grice says.

Controversy has long surrounded CFS, a debilitating condition characterized by

symptoms that include severe fatigue and pain and cognitive disabilities.

Nearly 25 years after the " Lyndonville outbreak " of chronic fatigue syndrome, a

controversy is brewing among scientists over what causes the disease. A

small-town doctor hopes his patients will help provide the answer. WSJ's

Bellini reports.

There has never been any consensus on what causes the syndrome. Many doctors

believe that there can be different triggers, including viruses and genetic

vulnerability. There are still some doctors who believe the condition is

psychiatric, a stance many patients believe has discredited them and slowed down

efforts to find treatments.

The finding linking XMRV and related retroviruses to the condition offered

patients evidence that there was an infectious source. When an FDA committee

recommended that people with chronic fatigue syndrome be barred from donating

blood last year, many patients welcomed the decision because it finally

legitimized the illness.

View Full ImageMax Whittaker/Prime for The Wall Street Journal

, diagnosed with chronic fatigue syndrome in 1994, thinks the

scientific establishment has downplayed the disease for 25 years.

But no sooner did the XMRV paper offer hope to patients than a heated

disagreement began with scientists: Some labs haven't been able to find a single

case of XMRV in either patients or healthy people. Scientists disagree among

themselves on how prevalent XMRV really is in the population. Papers published

in the past few months suggested that some of the evidence supporting a link to

chronic fatigue syndrome and prostate cancer may be the result of contamination.

Even if XMRV turns out to be widespread, scientists don't know for certain if

XMRV causes disease, or whether one of those diseases is chronic fatigue

syndrome.

Eager to find treatments and suspicious that their condition is not being taken

seriously, patients have accused some of the scientists of taking too long to

get answers. Patients say some scientists are even deliberately setting up

experiments designed to fail to find XMRV.

After the Centers for Disease Control and Prevention published a study in July

that didn't find XMRV in either patients or healthy people, patient advocate

Mindy Kitei wrote on her blog that CDC didn't want to find XMRV.

View Full Image

" If the CDC had found the retrovirus, " she wrote, " it would have negated its

20-year affair with chronic fatigue syndrome as a psychological problem. "

" Most of the public is not accustomed to evaluating early stage science, and

they don't understand how vague things are at this point, " Alan Dove, a science

writer who trained as a microbiologist at Columbia University, commented during

a podcast, " This Week in Virology, " that discussed XMRV.

The clashes between patients and scientists come as science in general becomes

more polarized, according to a study published in the Journal of Risk Research

last year. Researchers found that when scientists' conclusions conflict with a

community's cultural values, people don't accept the scientific consensus. " The

phenomenon we are looking at is a cultural war over facts, " says Dan Kahan,

director of the Cultural Cognition Project at Yale Law School, who co-authored

the study last year.

Harvey Alter, a 75-year-old hematologist who is a member of the National Academy

of Sciences, says the intensity of the XMRV debate took him by surprise. At a

small conference in Croatia last May, Dr. Alter gave a talk about the risk of

infectious viruses in blood transfusions and presented one slide mentioning

XMRV. He told the scientists present that he thought the findings in 2009's

paper, in the journal Science, were likely true and that he had some early data

that appeared to back it up.

He didn't present his data, he said, because it was too preliminary. But he

brought it up because eventually it could have public health implications.

" I thought it was important they know what might be coming, " he said.

The conference organizers put the presentation on the web, and two Danish

journalists issued a press release about the brief XMRV remarks.

For weeks, Dr. Alter, who works at the NIH, was hounded by reporters and

patients demanding more information—information that Dr. Alter says he didn't

feel was ready for presentation.

" It never dawned on me that one sentence would have such impact, " he says. He

couldn't respond to all the email and worried that any comments might be

misinterpreted.

The controversy intensified after reports that a research paper Dr. Alter was

preparing was accepted for publication, but that he withdrew it out of concern

that his results differed from a CDC study that didn't find XMRV.

On chronic fatigue syndrome blogs and chat groups, patients questioned the

motivations for the rumored delay. Cairns, whose daughter has

chronic fatigue syndrome and who writes a popular blog called The Patient

Advocate, wrote that he believed pressure was coming from CDC to delay Dr. Alter

from publishing.

" Their single desperately focused goal is to slow the momentum—and in the

process to choke the money flow " for more XMRV research, he wrote.

Dr. Alter says there was nothing amiss: He simply needed more time to analyze

why his finding differed from the CDC's. He says the pressure and meetings and

discussion kept him out of the lab, where he wanted to finish his experiments.

" I could understand the reasons people were so anxious to get the answer, but I

couldn't convey the reasons why it was important for science to run its own

course, " says Dr. Alter.

His paper, which found a connection between chronic fatigue syndrome and a

family of viruses to which XMRV belongs, was finally published in September.

Dr. Le Grice, the NCI scientist coordinating XMRV efforts, says that the science

about XMRV has actually moved very quickly. He says patient pressure has helped

draw attention not to the virus but to the seriousness of chronic fatigue

syndrome.

" We've been on this a year now. To a chronic fatigue syndrome patient, I'm sure

a year seems like a long time. In science, what we've done in a year is

incredibly fast, " says Dr. Le Grice.

Dr. Le Grice says he is no stranger to the politics of science and advocacy: He

spent years developing anti-retroviral drugs at a drug company and then running

a university center for AIDS research. Still, the 58-year-old biochemist is

sometimes taken aback by patients' suspicion of the motives of scientists

investigating XMRV.

The clash between the two sides was sharpest at an NIH-sponsored meeting about

XMRV last year. After the CDC's Switzer presented data about an XMRV

test his team developed, patient advocate Ms. Kitei questioned whether Mr.

Switzer really wanted to find XMRV at all. " You seek what you want to seek, " she

said.

Stoye, a British scientist who was moderating the panel discussion,

asked Ms. Kitei to stop her line of questioning. " I think nobody in this

business is trying to get a negative result, " he told her. " It's in nobody's

interest. "

Ms. Kitei replied: " Of course it is.... The CDC has said this is a psychogenic

illness for 26 years. " She tried to say more, but Dr. Stoye cut her off. " We're

not here to discuss the CDC, " he said.

The CDC denies any effort to discredit the disease. " I take issue with people

who would make the accusation that CDC went into this whole process with the

intention to come up with negative results, because that was certainly not the

case, " said Stephan S. Monroe, CDC's director of the division of viral and

rickettsial diseases.

Indeed, there is no evidence the CDC sabotaged efforts to find XMRV. But many

patients believe the agency hasn't worked hard enough to find a cause for the

disorder.

Mr. , for one, questions CDC studies that he says are denigrating and

irrelevant to those with the disease. For example, a paper by CDC researchers

was published in July, shortly after the CDC said it could not find XMRV in

patients. It reported that 29% of chronic fatigue syndrome patients in the study

had a personality disorder compared with 7% of healthy controls.

Mr. says he went to the NIH's XMRV conference because science is often

" filtered " to patients through doctors or advocacy groups, and he wanted to hear

and assess the scientific debates for himself.

At the NIH meeting, Mr. says he was surprised the scientists hadn't

agreed on a standardized way to find XMRV or related retroviruses before

launching experiments. Extensive debate at the meeting centered on figuring out

why some labs found XMRV and others could not.

" It was a true eye opener that they aren't sharing information or having

discussions beforehand, " says Mr. .

These sorts of disagreements, say scientists, are typical of early research, but

they usually do not take place in the public eye. Many scientists will not share

early results beyond a very tight group of trusted colleagues before

publication. They want to make sure of their results before they present them,

since other scientists will then try to replicate the data. They also need to

publish to make sure someone else does not take credit for their discoveries.

In the harsh public glare, the traditional culture of science is turned upside

down. Dr. Le Grice is worried that public pressure will cause scientists to

rush, resulting in experiments that end up " clouding the field even more. "

In mid-October, Dr. Le Grice and Mr. found themselves once again

attending the same meeting—this time, a scientific session before members of

the

chronic fatigue syndrome advisory committee, which makes policy recommendations

to the head of Health and Human Services.

Dr. Le Grice gave a presentation on XMRV that summarized the debate that went on

at the NIH workshop. He raised concerns among the scientists about mouse DNA

contaminating the samples. Afterward, the two men had a chance to briefly talk.

They still do not see eye to eye.

Mr. felt that in summarizing the presentations, Dr. Le Grice was too

negative.

Dr. Le Grice explained that because of Mr. 's patient-advocacy email

campaign, Dr. Le Grice has less time to spend doing science about XMRV.

Mr. says that in the past, he doubted whether science would yield answers

to his medical condition. He still worries that the controversy will cause money

for research to dry up, before all the scientific questions are fully answered.

But the debate over XMRV has changed at least one thing. After they talked, Dr.

Le Grice looked Mr. in the eye and told him that he has no other agenda

except to find out whether XMRV represents a threat to people.

" I believe him, " says Mr. .