Yes, it’s me again. 2011 has not, so far, left me with much blogging energy. There have been major transitions, some still in progress. I am optimistic that things will improve, since I also have a few other projects I’m eager to get back to.
Anyway, I wanted to share two articles about CFS and XMRV that sum up the situation very well. Both touch on the relationship between patients and researchers. The first is from the Chicago Tribune, with a good summary of the state of XMRV research. The die-hards dislike this writer, but I think she’s seeing the big picture and the article reflects that: there are a lot of CFS patients who believe in XMRV, but the research is not yielding more evidence in favor of it.
The chasm between the WPI and its supporters and many in the scientific community is emblematic of a new, modern-day dynamic in which patients keep close tabs on the work of researchers and feel empowered to challenge that work and form strong opinions about the quality of it.
An editorial in Nature goes into more depth on this aspect, and exhorts both sides of the argument to listen to and respect each other. (The first comment, by Brian Foley, mentions different etiologies, something I harp on a lot.)
The challenge for scientists in this field, as in any other that involves patients, is to understand and be motivated by the plight of the patient community without letting their research be swayed by it.
Good reporting on this “mess” is great to see in mainstream media like the Tribune and The Wall Street Journal. However, I’m wondering whether CFS patients, who have tried for decades to shed the images of laziness, mental illness, and hypochondria, aren’t developing a new stereotype for themselves: mouthy and unswayed by science. Obviously, this describes only a portion of the patient community, but as I’ve fretted before, I believe the rest of us may be thought of as guilty by association.
I don’t really try to convince people of which side they should be on anymore. I only ask for clarity of thought and acceptance of solid evidence. If XMRV is proven to be implicated in chronic fatigue syndrome, I will accept that scientific consensus just as I’ll accept the other one that may be forming.
I recognize that there are political and scientific considerations that do cast a reasonable doubt on all the XMRV criticism, and which I don’t follow as closely as many do. I might not be informed enough about those aspects. I also have encountered very little medical resistance and have a doctor who is actually interested to find out exactly what’s wrong with me. Many of the WPI followers have been legitimately burned by their experiences with medical science, and I think they come by their suspicions honestly.
So I follow the science, and hope that the pro-XMRV crowd at least take it into account, which too many do not. Suspicion is okay; conspiracy theory is going too far. Just as people demand understanding and respect from their doctors, so should they reciprocate.
