posted by Amy on Jun 26

Cancer support groups all have guidelines about civility, and not fighting, and not attempting to make money from membership in the group. But they don’t prohibit people from advancing bogus theories about health or cancer, nor do they require that “information” come from peer-reviewed scientific sources.

The other day there was a thread on one of my groups about an assertion made by an internet “health guru” that folic acid supplementation is ineffective to cure or prevent vitamin B9 deficiency, and the “real” vitamin is folate. The person who posted it lamented that “we” aren’t told about this (apparently there’s supposed to be some connection with cancer) and someone else chimed in that “they” don’t research it. I spent about five minutes on Google Scholar and learned there’s actually quite a bit of research on folate and folic acid, and on the effects of fortifying grain products with folic acid, which began in the US in 1996. The intent was to prevent neural tube defects (such as spina bifida) in newborns. It also helps maintain cognitive health in older people. I posted a comment about that brief foray into actual facts about science and folic acid supplementation, and someone replied that the reason the number of neural tube defects had gone down in the US is women aren’t getting pregnant (presumably because folic acid causes infertility?). She cited no source for that claim.

The “guru” spouting this nonsense is an acupuncturist with no science credentials. He’s also a proponent of a “paleo” diet and claims to have disproved studies that link meat consumption with maladies such as heart disease and cancer. He is opposed to vegan diets and warns people not to choose veganism.

I agree that people “should” get vital nutrients from diet and I’ve always tried to eat pretty low on the food chain. It can be difficult to get all necessary nutrients–especially minerals–on a vegan diet. But it’s not impossible to do so as long as one takes a vitamin B12 supplement or uses foods that are fortified with it, because B12 does not naturally occur in any non-animal foods, and B12 deficiency can beĀ  “masked” by getting plenty of other B vitamins. For more on that I highly recommend the extensive nutrition information in the back of the classic vegetarian cookbook, Laurel’s Kitchen. In certain high-stakes situations, such as for women of childbearing age, and cancer patients, some supplements play a vital role. If we can prevent permanent disabilities by tossing some B vitamins in flour and corn masa, then we definitely should.

So these women on the forum had accepted a false premise from a quack, and they were going on and on about the supposed ill effects of folic acid. One even railed against the March of Dimes pushing for folic acid supplementation of cornmeal. I honestly don’t understand it. Except for the one comment I made, I have abstained from participating in the discussion. Never try to teach a pig to sing. You waste your time, and it annoys the pig.

People take the time to find out what quacks and snake oil salesmen have to say, and then change their behavior accordingly (and try to persuade others), but they apparently can’t be bothered to learn how to spot quackery and question specious claims. They don’t seem to know how science actually works, and they form an echo chamber for lies. A prominent example of this is “the truth about cancer,” which is a “documentary” that I did not have the patience to sit through once I saw all the red flags. That keeps coming up all the time in my online groups, and if I push back on any of it I risk getting thrown out.

If I had a cancer support group, I would allow members to challenge any claims not backed by scientific evidence, and I’d remind them that the plural of anecdote is not evidence. If they don’t even bother to look for research papers that support their assertions, they shouldn’t be making the claims, but if they do then what they say ought to be fair game for debunking. As long as disagreement doesn’t become abusive or personal, people should be encouraged to point out logical fallacies or offer evidence that contradicts unsubstantiated claims.

As I have said before, I think it’s immoral to prey on sick people. And it’s unethical to hold oneself out as an “expert” when one is nothing of the sort. You can get an online certification as an “integrative medicine specialist” or “naturopath” without learning a damn thing. I don’t know why Americans are so susceptible to quackery. I wish there were some way to stop it.

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