Andrew Wakefield, that one-man wretched hive of scum and villainy, has been in the news again lately, thanks to reporting by Brian Deer that exposed him as not just incompetent, but an outright fraud. (Briefly, Wakefield knowingly falsified data in the now-retracted Lancet study connecting autism with the MMR vaccine, due to a glaring conflict of interest and a profit motive.)
Despite the mountain of solid evidence against him, however, some people still vehemently support him, claiming conspiracy theories and persecution, and citing their gut instincts. These people are not interested in the science, nor are they thinking critically. It’s all drama and emotion, with a giant dose of correlation-causation fallacy.
In another area of chronic illness, the debate over whether XMRV causes CFS has become nearly as polarizing as the divide between scientific evidence and anti-vaccination hysteria. It’s quite a different scenario, of course; Wakefield is up against that mountain of evidence while the XMRV-CFS connection has only been studied for a year, and a scientific consensus is not imminent.
Recently, I read a blog post by organic chemist David Lowe, who while expressing pessimism about XMRV, makes the important point that what we are seeing is the scientific process:
No, this isn’t looking good at all. It’s pretty typical, though, of how things are out at the frontiers in this business. There are always more variables than you think, and more reasons to be wrong than you’ve counted. A theory doesn’t hold up until everyone who wants to has had a chance to take some big piñata-shattering swings at it, with weapons of their choice. So, to people outside of research: you’re not seeing evidence of bad faith, conspiracy, or stupidity here. You’re seeing exactly how science gets done. It isn’t pretty, but it gets results in the end.
Lowe’s post was mentioned briefly on Virology blog (thanks to Linda Vansteenwinckel for the links), which quoted the same passage I just did. Lowe does delve into the XMRV debate, but both his post and the Virology one are clearly emphasizing the point about how the scientific process works. Reading the comments, I found it interesting that the discussion of both posts nevertheless ended up as debates about XMRV, many of which largely ignored the salient point.
I see plenty of patients who do the same thing. They fixate on something that happened during the course of XMRV-CFS research — a certain delay here, a miscommunication there — and focus their decidedly pro- or anti-XMRV stance around it. The problem is, nobody can make a valid decision at this point. There isn’t even close to enough science yet, but it’s as impossible to reason with some patients as it is with antivaxxers or creationists. I’ve expressed my own doubts about XMRV but I have no plans to pick a side in this debate until a consensus at least begins to form.
All of this, plus the worrisome hero worship of Judy Mikovits, lead researcher on the first XMRV-CFS paper, has got thinking about the CFS community compared with the situation with Wakefield and vaccines. Let me emphasize before anything else that when I say “worrisome,” I in no way am accusing Mikovits of the kind of deliberate fraud, falsified results, and ethically egregious behavior that Wakefield displayed. I still believe she has to answer for her appearance at the AUTISMONE conference along with Wakefield, and her very unfortunate association of vaccines and autism, but I believe at worst XMRV won’t amount to anything, not that she is shady or deceptive.
What’s worrisome about hero worship of a researcher is that a scientific issue starts to become about the cult of celebrity. Those who are in the cult band together for reasons that may have nothing to do with science whatsoever — for example, feelings of gratitude and relief that a scientist is paying due attention to a disabling chronic condition. Those feelings are of course understandable, but in extreme cases they develop into an emotional bond with the researcher, such as those who continue to support their perceived healer Wakefield no matter what.
Is this the culprit? No one knows yet.
Consider a future probably many years if not decades away. In this future, XMRV has been solidly rejected as a causative factor in CFS. There is more than enough evidence against it and a scientific consensus on the matter. Research has moved on. In this future, given the current discourse about XMRV, I can very easily see the CFS community become as divided as the situation with those who vaccinate and those who don’t. Antivaxxers firmly reject any evidence that has proven them wrong, and isn’t some of the CFS community heading down that road? In this future, I worry that the people who unquestioningly follow and support Judy Mikovits will continue to fly the XMRV banner for life, exactly as the antivaxxers have done with regard to Wakefield.
And in a world where unreasoned screaming tends to get more attention than solid science, I worry that CFS patients in this future will end up with a worse reputation than we currently have — worse because it will be true. People who currently can’t discuss the scientific process or worse, studies that do not show XMRV in CFS patients, without immediately becoming defensive and argumentative may become the people who cannot and will not accept that process — just like the antivaxxers today. Assuming Mikovits herself doesn’t accept the consensus (which she might well do), her devotees, even more united in support now that she is a “persecuted” figure such as Wakefield, may become derided and ignored by the legitimate scientific community — just like the antivaxxers today.
(On the other hand, in a future where XMRV is proven to be a cause of CFS, I’m pretty sure that most of those who determinedly made up their mind against that connection will immediately switch to the scientific consensus and accept treatment. But anyway.)
Again, I emphasize that Wakefield entirely brought his demise upon himself, and in my opinion those who continue to follow him are effectively as bad as he is. By contrast, while Mikovits has many similarly devoted supporters, she didn’t gain them through bad faith and deception. That’s a huge difference. But the end result in my hypothetical future is similar to Wakefield’s antivaxxers: CFS patients become known as anti-science loons blindly following not just a discredited theory but also the person who came up with it.
As with the vaccine “debate,” the central problem is a respect for and understanding of science versus loud, emotional, and unfounded rejection of science. At the moment, those who vehemently support Mikovits and the XMRV-CFS connection can’t be characterized as rejecting science, although they may still be quite loud and emotional. But the potential for that current line of thinking to develop into true anti-science, especially in that hypothetical future. The CFS community often suffers from a dangerous tendency to play the “I just know in my heart” card without thinking critically. Or even lazily spreading rumors and bad science without doing due diligence, such as in this completely egregious post from Phoenix Rising, a CFS site that has the questionable reputation of being a respected source of good information.
This is a future I don’t want to see. I don’t want there to become a genuine lunatic fringe in the CFS patient community, and I certainly don’t want to be stigmatized by association. Already I’m sometimes embarrassed by inarticulate and impassioned, multiply-fallacious comments devoid of any objective facts or evidence by a few of my fellow patients who engage in discussion on the science. Should I give those patients a break, because I of all people know what it’s like to have problems with cognition and concentration? No. I’m not talking about errors and goofs due to memory problems or other issues; I am well and truly capable of that. I’m talking about what I continually advocate: retaining the power of critical thinking despite our illnesses.
Every single one of us who has the capacity to contribute (to even the smallest degree) also takes on the responsibility to raise the level of discourse, effect respectful dialogues, be patient with the continuing research process, and keep our community connected rather than divided. Please, let’s learn a lesson from Andrew Wakefield before it’s too late.
