In early October, the news came out that the XMRV retrovirus had been linked to ME/CFS (aka chronic fatigue syndrome). While most patients found the news exciting and hopeful, a few – along with some medical professionals – were understandably skeptical. And so the debate began.
Then the debate took a nasty turn following the publication of a study at Imperial College London claiming that out of 186 patients tested, they didn't find XMRV in a single patient with ME/CFS. The methods and motives of the UK researchers were questioned and the mudslinging began. I've been surprised and disappointed at the hateful rhetoric, name calling and, on occasion, vulgarity used almost anytime the subject of XMRVcomes up.
Sadly, even Dr. Mark Borigini, who used to occasionally write SharePosts as an expert here on ChronicPainConnection, lowered himself into the mud on this one, calling those who believe XMRV may be the answer, “Terrorists of Health, in full jhadist mode...” in his Psychology Today blog.
In My Humble Opinion...
Until now I've tried to stay out of the debate, preferring to wait until more studies are done to see exactly what the XMRV discovery means to patients. But cruel and extreme comments, like those Dr. Borigini made against very sick patients who are desperate for something that will give them hope, have made me angry enough that I have to speak out.
I'll be the first to admit I'm not a scientist, so I won't even attempt to get into the debate about the validity of different testing methods. Rather I would like to try to inject some logic, common sense and basic consideration into the discussion. Following are my thoughts on the subject:
- It's hard to fault ME/CFS patients for getting excited about the first hopeful research in years. These are terribly ill people who have been called lazy, labeled as hypochondriacs, told their problems were psychological and largely ignored by the medical community for years. Can you blame them for being enthusiastic about the prospect of finally being vindicated – finally having proof of just how sick they are?
- I'm sure there may be some people out there who have latched onto the initial study as “proof” that XMRV is the cause of ME/CFS, but I haven't found them yet. In everything I've read, even the most enthusiastic supporters (including the original researchers) acknowledge that more research needs to be done before we will know anything for sure. In the medical world, one study doesn't prove anything. At the very least the study needs to be replicated.
- Some have criticized the study because it was done at the Whittemore-Peterson Institute (WPI). Dr. Borigini called it a “non-research setting.” Now I'm not sure what he considers to be a research setting, but the purpose for which the WPI was built was to conduct research. And it was apparently good enough for the National Cancer Institute and the Cleveland Clinic, who not only participated in the studies but put their names on the published report. It was also good enough for Science, the most prestigious scientific journal in the world, to publish the study. It should also be noted that the tests were validated using three different labs.
- There are significant questions about the UK study that failed to find the XMRV retrovirus. 1.) Different techniques were used. It seems to me if you were trying to replicate a study, you would use the same techniques. 2.) The UK study was done very quickly and the results rushed to publication on the Internet rather than being carefully checked and submitted for peer review by a respected scientific publication as was done with the WPI study. 3.) It's difficult not to question the motives behind the UK study since their National Health Service has long supported the idea that ME/CFS has psychological origins.
Of course I'm hopeful that this may be the answer we've waited so long for. But in the end, I don't know what part, if any, XMRV will play in ME/CFS. Neither does anyone else for that matter. I suspect there may be a link for at least a subset of patients, but I don't know that for sure. All any of us can do right now is wait for more studies to be done. In the meantime, could we please keep the discussion civil? Debate the science, question the motivation, but don't resort to name-calling that demeans the patients.
For More Information...
If you would like to learn more about XMRV and the debate surrounding it, Cort Johnson's Phoenix Rising Web site has the best (and most rational) collection of information I've found: XMRV Information Center
Dr. Judy Mikovits, lead researcher for the WPI study, recently gave a two-hour seminar on XMRV at ProHealth in Satna Barbara, Calif. You can see videos of the presentation here: Dr. Mikovits' XMRV Seminar and Q&A