Maybe it is Political Science, and not the kind we learned in school.
Earlier this week I wrote
a diary giving two examples of promising medical findings that, it appears, government/academic/corporate machinery seem to be working to dismiss rather than understand. One of these involved an observed association of a retrovirus, XMRV, with people having Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
To review, in October 2009, a team led by Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada, reported in the journal Science that 67% of ME/CFS patients in their study were infected with XMRV, compared to just 3.4% of healthy subjects. By February, 2010, three other studies were published that were unable to find any association of XMRV with CFS.
We could have a great deal of technical discussion about these studies: how were subjects selected, how was testing done, and so on, but these should be details addressed by researchers. The rest of us should get the advantage of their expertise. Everyone’s motivation should be to understand how XMRV relates to ME/CFS so we can get some help for its suffers, estimated to be at least four million in the U.S. alone. But a lot more than the quest for knowledge and understanding goes on.
In particular, the Centers for Disease Control has a long history of opining that CFS has a psychiatric rather than infectious cause. The early days (and not much has changed) are recounted in Hillary Johnson’s book,
Osler’s Web, published in 1996.
A recent development, as reported in the
popular press, is that the CDC produced a study, accepted for publication
around May-June, 2010, that found no evidence of XMRV in either CFS patients or healthy controls. Another team from the NIH and FDA, led by Harvey Alter had submitted another paper that was accepted for publication in the journal, The Proceedings of the National Academy of Science (PNAS), that found a significant correlation, at about the same time. Somehow, according to the press, since the two government sponsored studies were in disagreement, both sides agreed to put their papers on hold, something of a gentlemen’s agreement or management mandate, depending on your perspective.
The CDC paper, supporting the XMRV-CFS denialism theory, unexpectedly came out on July 1, 2010, anyway. Alter’s NIH/FDA paper, supporting an association of XMRV-like viruses to ME/CFS, was published August 24, 2010 after being held several weeks.
Science should be science. We would expect a paper to be published after review and acceptance. Its findings would then be subject to review and criticism by other scientists. Science should work. What is all this about putting selected accepted papers on hold?
The devil is probably in the details. Identifying either one is hard.
The Scientist, a magazine for professionals involved with the life sciences,
interviewed the editor of PNAS this week, asking him what went on with the publication delay. PNAS was the journal that eventually published the findings of Alter’s NIH/FDA team whose data support the XMRV-ME/CFS association. Those with an outsider’s view of how real-world science works would be probably be surprised. Scientific publication is not all data, statistics, and analysis it seems.
The PNAS editor said:
I wasn't aware of [Alter's] paper until I was called by someone in the retrovirus field who expressed concerns. So I alerted my staff in Washington and they told me they had just had a note from Alter requesting that the paper be held, pending discussions with various government agencies.
I am weary of the words “controversy” and “controversial”, particularly as used in medicine. In a doctor’s office, they are often code words for “I don’t want to fight with the insurance company” or “that is what the woo-hoo doctors do, I’m a straight up doctor”. But, still I was surprised how the editor used these words. Here's an example:
...we try to examine the papers that we're reviewing to see if they have anything unusual about them that would cause additional publicity. We have cases of papers that come to controversial conclusions that are in a variety of disciplines. We have papers in our sustainability section in PNAS which often touch on climate change issues.
So it seems for him, something is controversial if it has a possibility of notice in the general press. What does this have to do with science?
It is interesting to compare this account with others. Here is what was in a Medscape Medical News article:
The decision [to delay the Alter paper] came from the US Department of Health and Human Services, Steve Monroe, PhD, of the CDC, told Medscape Medical News. Officials wanted to find out why results of the 2 federal studies differed.
"I appreciate the frustration of the advocate community, but our goal was to ensure we were providing the best and most accurate data. Sending out an incorrect message would be detrimental," said Dr. Monroe, director of the CDC Division of High-Consequence Pathogens and Pathology."
The Wall Street Journal wrote this:
In an email between scientists familiar with the situation, viewed by the Wall Street Journal, a researcher said the two teams were asked to put their papers on hold because senior public-health officials wanted to see consensus—or at least an explanation of how and why the papers reached different conclusions, said the people familiar with the situation.
Wouldn’t we like to be privy to conversations in the US Department of Health and Human Services (HHS)? And, wouldn’t a phone log of lobbyist calls into HHS that month possibly be interesting? Just how many parties get involved in deciding whether a research paper gets published?
It is naive to think politics does not enter into science. But what is disingenuous is for scientists and medical doctors to keep up a charade that they use hard-eyed science, uninfluenced by subjective views, for their work, which makes their views preemptory over those of the typical citizen. In medicine particularly, patients should not acquiesce and think purported science quoted by their doctors is just too hard for them to understand, especially when everything they see or feel is contradictory. A lot of medical science is politics motivated by profit motives of specialty groups, hospitals, drug companies and insurers. We should not let their “science” make us sick, or dead. And, we should not be paying for medical/corporate politics with our tax dollars.