Fatigued by advocates impeding research

2 minute read

Science has a news article that details the conflict over publishing new research on a viral cause of chronic fatigue syndrome (CFS): “Conflicting Papers on Hold as XMRV Frenzy Reaches New Heights”.

It’s mainly about the conflicting results of several ongoing studies into whether there is a virus-disease association. Early stages for serious research, and there is as yet little idea of the mechanism that might be involved. But even here, there are big disagreements:

Science has learned that a paper describing the new findings, already accepted by the Proceedings of the National Academy of Sciences (PNAS), has been put on hold because it directly contradicts another as-yet-unpublished study by a third government agency, the U.S. Centers for Disease Control and Prevention (CDC). That paper, a retrovirus scientist says, has been submitted to Retrovirology and is also on hold; it fails to find a link between the xenotropic murine leukemia virus-related virus (XMRV) and CFS. The contradiction has caused "nervousness" both at PNAS and among senior officials within the Department of Health and Human Services, of which all three agencies are part, says one scientist with inside knowledge.

I’m pointing to the story because I was interested in the last few paragraphs. CFS sufferers and advocates are eager to see progress toward understanding the disease. This creates pressure on researchers – especially those who fail to find evidence for this hypothesis:

Patients have become a loud voice in the scientific debate as welland it's taking its toll on scientists who don't support the XMRV hypothesis. "It's ghastly, " says retrovirologist Myra McClure of Imperial College London, the lead author on one of the three published studies that came up empty-handed. "I've had people writing me, and I quote, that I don't know my arse from my elbow, and that I should be fired." Four months after her first paper on CFS came out, McClure says it was also her last one. "Nothing on God's Earth could persuade me to do more research on CFS, " she says. "I feel bad for the scientists, because it's true, we are a very angry community, " says Wilhelmina Jenkins, a physicist living in Atlanta who has had CFS since 1983.

I think in general unrecognized pathogens are likely causes of disorders like CFS, and I agree that researchers for too long failed even to look seriously at them. Yet, there’s a lot of diagnostic noise complicating things – does everyone diagnosed with CFS really have the same condition? – and for chronic conditions the science is always difficult. A giant epidemiological study may increase the statistical power, but it also vastly increases the political fighting.

Of course, they write me and tell me I don’t know my arse from my elbow, either. I guess you gotta have a thick skin if you’re going to deny that ancient aliens directed our evolution!