When I posted about the “truthiness” I saw in a comment by Dr. Mikovits, I expected criticism. I’ve heard from folks in the comments, on Twitter and Facebook, and by email. I think some of the points and questions raised are worth addressing directly.
Why bring this up now?
I didn’t raise this issue out of the blue. Dr. Mikovits posted a comment to the FDA docket and it appeared on July 25th. I posted about it on July 29th. There was nothing to the timing besides that sequence – her post appeared, and I wrote about it here.
You’re driving a wedge into the community.
No, I’m not. I am speaking honestly about a deep divide that already exists. The online patient community became polarized very quickly between those who believed the XMRV finding was correct and those who did not (or had doubts). The fights were nasty, and we’re seeing some spillover in the comments on my blog post. We did not just discuss the science during that time. Aspersions were cast by both sides, including accusations of bias and ulterior motives, and this is continuing today. These exchanges were (and are) quite toxic, and this environment drove many people out of online participation. I’ve received several direct messages since I put up my blog post that were supportive, but the individuals were unwilling to post publicly.
I am not trying to increase the toxicity at all. My sense of the community is that everyone would like to just move on, and forget the details of what happened. I understand that desire. I am playing the unfortunate role of pointing out the elephant in the room, and I know many people would like to pretend the elephant isn’t there. But the only way to avoid stepping in all the elephant poo is to admit it is in the room and deal with it.
It was all Dr. Silverman’s fault.
First of all, that’s not accurate. Second, my post detailed some of the steps Dr. Silverman took to correct his mistake. I admire him for doing so.
Dr. Mikovits got a raw deal, and admitted there was a mistake.
Yes, Dr. Mikovits said at the September 18, 2012 press conference on the Lipkin study that XMRV was “simply not there” and that she was “100% confident in the results.” I give her a great deal of credit for doing so. It’s never easy to admit a mistake, and Dr. Mikovits did so publicly and after three years of defending her original results. That must have been very difficult, but she did it and that is a good thing. The point I made in my earlier post was that the evidence was there well before September 2012.
The WPI-Mikovits implosion and the resulting legal cases were shocking. Just when I thought things could not get more wild, they got wilder. It’s a huge mess and I have no idea who is right and who is wrong. Usually, these kinds of fiascoes involve right and wrong on both sides, and if I had to guess I would say that is the case here.
You are a mouthpiece for the CAA, and they’re evil so you are too.
I am not a mouthpiece for the CFIDS Association. I have no formal relationship with the organization anymore. Opinions and views expressed on this blog are my own, unless otherwise noted. My views are similar to those of multiple organizations and individual advocates, but I am not trying to represent anyone but myself. At some point, it may be relevant for me to talk about an “inside” view of XMRV and the CFIDS Association, as I was on the Board from 2009 to 2011, but I don’t think it’s pertinent today.
There is evidence that ME/CFS patients (and other patient cohorts) are infected with gammaretroviruses.
There is no published data supporting the assertion that ME/CFS patients are infected with gammaretroviruses. All the papers showing such data were retracted by the end of 2011. There may be unpublished data, but it needs to be published in a peer reviewed journal before it can be considered valid. I don’t follow the literature for other patient cohorts very closely, so I can’t say for certain whether data has been published on that point.
Let’s just move on.
“Those who cannot remember the past are condemned to repeat it” – George Santayana