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Amid war on a mystery disease, patients clash with scientists

Monday 14 March 2011

Dr. Stuart Le Grice
Dr. Stuart Le Grice: In the hot seat.
Photo: Brendan Hoffman/Prime for the Wall Street Journal

From The Wall Street Journal:


Amid War on a Mystery Disease, Patients Clash With Scientists

MARCH 12, 2011

Robert Miller 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. Miller 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.

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. Miller 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.

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.

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.

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.

"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 full article, with over 140 comments, can be found here.



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