Tag Archives: critical thinking

A future I don’t want to see

Posted on January 20, 2011 by Joey| 18 Comments

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.

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The problem with causation

Posted on July 7, 2010 by Joey| 7 Comments

Chronic fatigue syndrome (CFS) patients are making a name for themselves these days, and not in a good way. The current brouhaha over new studies that have been submitted, then held, then whatever else is going on is bringing out the worst in the XMRV cheerleaders. I recently wrote about compassion for patients who are not in a good place to think critically, but even my own compassion is stretched to the limit, and frequently breaks, when it comes to the screaming impatience and conspiracy theorizing that can be seen on sites like Phoenix Rising.

Some CFS patients, let’s say the extremists, expect XMRV to be a combined Messiah/Holy Grail/panacea for all their ills. As I’ve mentioned before, some are even taking antiretroviral medication already, something that is highly dangerous and is not currently recommended by any reputable physician. The problem stems from an overall difficulty I see in chronic illness communities: the correlation fallacy. Which is to say, “correlation does not imply causation.” This simply means that just because two things appear to be connected does not necessarily mean that they are.

CFS, like many chronic illnesses, is a concatenation of unpredictable symptoms. While it’s common for exertion to push patients into a crash, we might also stay in bed all day, and the next day be crashed for no apparent reason. (In this context I use “crash” like many patients, to mean an especially disabling flare-up of symptoms.) This is one of the most annoying aspects of the illness. Quite a while ago I described exactly that situation to my doctor, and asked why it happened, and his answer was this: “You have CFS.” Right. That’s the way it goes.

In addition, like myself, many people with CFS have other conditions that either exacerbate our symptoms or result in fun new ones. So, although I must reiterate that there are specific criteria (well, half a dozen sets of criteria, but that’s another story) for diagnosing CFS from symptoms, most if not all of us experience symptom weirdness and ups and downs without rhyme or reason.

And yet, patients happily share stories of great success with dubious or even flat-out quack treatments. “I started using this herb, and the next day I started feeling better!” someone will chirp. Despite the fact that the selfsame person may recently have been bemoaning the capricious nature of our illness and how it’s so hard to make plans when you never know how you’re going to feel (true), now it’s become perfectly clear that taking this herb caused an upswing.

“Correlation does not imply causation” is one of the clarion calls of the critical thinker and the evidence-based physician. And yet these false correlations happen all the time. As you know, I try to come from a place of understanding, but the cognitive dissonance displayed in the above example really blows right past me. Whether it’s low-dose naltrexone (LDN), CoQ10, or even conventional pharmaceuticals, it’s usually pretty difficult to determine (and especially not in the space of a couple of days) whether any one treatment caused a major improvement. And that’s not even taking into account the placebo effect.

I don’t begrudge people feeling better. Nor do I discount the placebo effect for people who cannot get relief any other way. But what sometimes happens next is that other people who have had similar experiences will post about it as well. And then the other major fallacy found in chronic illness communities arises, where patient anecdotes are mistaken for hard data. Mostly, this isn’t too big of a deal. After all, science has so far failed us, so we do turn to others to find out what has helped them, and possibly try it ourselves. As I’ve said many times, I’m not entirely against this. The problem happens when people come to consider this information to be as valid as evidence-based medicine. Communities are wonderful for commiserating and sharing stories, but relying on these stories as a source of scientific data is dangerous.

Especially when it comes to XMRV. I’ve seen people deciding that everyone on a FB page or a forum should get tested for XMRV “and then we’ll have more results.” No. Those are still anecdotes, and given that the evidence-based studies can barely get it together on how to select a patient cohort and all the other complicated issues with testing CFS patients (such as severity of disease, which isn’t always taken into account), it’s ridiculous to imagine that half a dozen tests on people from all over the country or the world will contribute to a scientific body of evidence.

Finally, something I see missing from an enormous amount of XMRV discussion is the fact that even if it is shown to have a strong correlation with CFS, that does not imply causation. There isn’t even solid evidence of a correlation yet and people are jumping all over causation, with the antiretrovirals, rushing out to get expensive and useless tests, worrying themselves to death over whether they’ve spread the illness to others, and so forth. It’s perfectly likely that even if a correlation is found, the retrovirus may simply be a dormant infection to which people with CFS are especially susceptible. Or any number of other possibilities besides XMRV being a causative agent. I wish I were seeing less anxiety and more patience.

I get that some of the hoopla doesn’t even really have to do with medicine. It has to do with perception. The notion that a virus causes CFS is enormously attractive to patients who have been dismissed, invalidated, and marginalized for years. Proof of a somatic cause would mean even more than a cure — it would mean no more people trying to, say, cure CFS with neurolinguistic programming (NLP), as a fellow patient related to me the other day. The hope for that may be even stronger than the hope for a cure.

But again, hope, belief, fear…these do not aid in the calm assessment of the scientific process or of the data it (eventually) provides. Patients are falling back on emotion when they should be hanging on to rationality. No, it’s not fun. It’s easier and more comfortable to get together with other patients and howl instead of making the effort to think things through with a clear head. But that effort is absolutely crucial, especially considering the very negative views on our community that are starting to develop due to a visible and vocal segment of it. We’ve spent all this time trying to get attention, and now that we have it, we’re being seen by outsiders as a bunch of hysterical loonies. This is why I continue to plead for rationality and critical thinking in the CFS community.

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Bitten and shy

Posted on June 22, 2010 by Joey| 15 Comments

There is an ongoing war, as well there should be, waged by the proponents of medical science against those who reject, demonize, deny or misuse it. The war takes place on many fronts and on many levels, and some successes include the continuing downfall of Andrew Wakefield and the pronouncement by the British Medical Association that homeopathy is “witchcraft.”

Skeptics generally don’t have much use for people who have rejected medical science, or “allopathy” as some of those people would have it. (A term, by the way, invented by the guy who made up homeopathy.) Such people are usually characterized as, variously or in combination, stupid, ignorant, denialist, uneducated, brainwashed, crazy, deluded, superstitious, and even dangerous, to themselves or others.

And some of them are. The homeopath who killed his daughter by refusing actual medical treatment for her eczema is dangerous and possibly crazy. Religious objectors to blood transfusions and chemotherapy are superstitious. The scared parents of autistic children who throw in their lot with the anti-vaccination movement are poorly educated on the topic of vaccines. And then there’s people like the Health Ranger and J.B. Handley and so on, people who I won’t dignify with a link, but to whom I am happy to apply some if not all of the above epithets — and worse.

But there’s a certain population that I believe deserves greater compassion and understanding. People with long-term, incurable chronic illnesses may often come to reject science-based medicine because they themselves have come to actual harm from it, and sometimes repeatedly. I’m not talking about hypochondria or persecution complexes. I’m talking about people who have undergone actual trauma, mental or physical, at the hands of medical doctors. For example, this link is not from the most reliable site, but the incidents related are far from unheard of in the ME/CFS community — misdiagnoses, harmful biases, lack of understanding about the illness, and worse.

Don’t get me wrong. I’m not giving anyone a pass. I went through a hellish time when I was diagnosed with Graves’ and the incompetent idiot of an endocrinologist overdosed me so heavily on anti-thyroid medication, it took a year for me to recover from being seriously hypothyroid, during which time several other problems arose that have left me disabled. After that it took uninterested doctor after uninterested doctor before I found one who not only gave a crap that I was no longer able to function, but even cared enough to treat me! Oh yes, I was bitter. But rejecting science altogether because of your bad experiences is like never reading a book again because you thought Twilight was a piece of excrement. All of this taught me how to better evaluate doctors, and since then my experiences with physicians have improved greatly.

So this is not an apologia, but rather a plea for understanding. The people I’m talking about haven’t simply slipped into a life of hippy-dippy naturopathy due to the toxins in the air and the mercury in vaccines. They have been physically injured, had their illnesses worsened, been humiliated and brushed off and laughed at and completely invalidated by physicians, all the while struggling to cope with being sick or disabled. Not only has science “failed” these patients (as they see it) by not having provided a cure or even a treatment for some of those illnesses, but its individual representatives have personally failed them as well. These people don’t just imagine they’ve been done wrong by science, like the antivaxxers — they legitimately have been, just as my being overmedicated and spending months in “hypo hell” were not figments of my imagination.

If you put yourself into that position, I don’t think it’s too hard to see why someone might eventually give up on science, especially someone who has undergone years if not decades of these problems. Maybe they turn to homeopaths and naturopaths, who of course profess deep caring and understanding because they literally have nothing else to offer…but it’s attractive to patients who have been routinely dismissed by “allopaths.” Or maybe they glom on to what looks like science — such as a single, as yet unreplicated XMRV study — but refuse to let the actual scientific process take place before canonizing its researcher and creating a cult of personality, not of logic or evidence. Neither situation is positive and, again, I am not excusing people on the basis of what they’ve gone through. It is very hard to hang on to one’s critical thinking in these situations, but that doesn’t make it okay to give in to paranoia and superstition.

From a page titled "Nazi Connections to Allopathy." Seriously.

When it comes to winning back the minds of patients who have retreated from science as a reaction to their experiences, perhaps skeptics need to take a different tack. Some people go down the rabbit hole and never come back, of course. (And I always wonder about those anti-science converts and what’s going to happen on the day that science produces a cure or treatment for their illness, the one that homeopathy will never come up with. Will they reject it on principle? Unlikely.) I’m not talking about them, because why fight a battle you can’t win? But I truly believe skeptics need to stop lumping all these “denialists” into the same camp. Promoters of science-based medicine will occasionally throw a bone in the direction of “feeling sympathy for these people but…“, a statement unlikely to reach someone who has heard this line zillions of times. True compassion, however, just might.

We skeptics constantly exhort people to stay open-minded and thoughtful about these subjects, but the same onus is upon us. Assumptions about the reasons and motivations behind people’s rejection of medical science do nobody any good. Sick, exhausted, cognitively impaired patients do not deserve to be tarred with the same brush as those who actively seek the defamation and destruction of medical scientists. To people for whom there is no medicine other than Western scientific medicine, any rejection of that may seem intolerable, no matter what the reason. But the reason truly matters, because when you ignore that, you may be ignoring someone you could help, if only you hadn’t written them off like they’ve been written off so many times before.

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