Woo... and the cost of it

From the blog Movin’ Meat, written by Shadowfax… a direct copy and paste. My comments follow.

The Human Cost of Woo

I saw one of the most disturbing things of my career recently -- and that is really saying something.

This was a young woman, barely out of her teens, who presented with a tumor in her distal femur, by the knee. This was not a new diagnosis -- it had first been noted in January or so, and diagnosed as a Primary B-Cell Lymphoma. By now, the tumor was absolutely huge, and she came to the ER in agonizing pain. Her physical exam was just amazing. The poor thing's knee (or more precisely, the area just above the knee) was entirely consumed by this massive, hard, immobile mass about the size of a soccer ball. She could not move the knee; it was frozen in a mid-flexed position. She hadn't been able to walk for months. The lower leg was swollen and red due to blood clots, and the worst of the pain she was having seemed due to compression of the nerves passing behind the knee. It was like something you see out of the third world, or historic medical textbooks. I have never seen its like before.

So we got her pain managed, of course, and I sat down to talk to her and her family.

What I learned was even more amazing. The patient had been seen by the finest oncologists in the region upon diagnosis. They had all recommended the standard treatment of a combined regimen of chemotherapy and radiation. She had, however, steadfastly refused this treatment. She preferred, she said, the "Gerson Protocol." This is, she continued, "a way for the body to heal itself with a combination of detoxification and boosting the immune system."

In a less grave situation I might have laughed and asked "So how's that working for ya?"

As it was, the tears from her only partially-controlled pain took any humor out of the situation. She was very frustrated that the Gerson therapy wasn't working yet, but she did not perceive this as a failure of the treatment. Her theory was that the severity of her uncontrolled pain was keeping her immune system suppressed and preventing it from working. If, she hoped, she could just get her pain under control, she would finally start to get better.

I spent a lot of time with this young lady. Listening as well as explaining. She was dead set against chemo, which to her mind was equated with the "toxins" which had caused her cancer in the first place. She wrote off the oncologists as pushing chemo "because that's all they know how to do, and it never works." She had, in fact, burnt all the bridges with the various oncologists who had treated her, and was now left with only a pain specialist and a primary care doctor trying to do what little they could for her. She was equally frustrated by doctors in general, who "won't do anything to help me."

I could see why she felt that way; when a patient refuses the only possible effective treatment, there is not really much we can do to help her.

I did what I could. I talked to both her doctors, and I called a new oncologist. The oncologist, a wonderful man, promised to make time to see her in his clinic, even fully forewarned of the "baggage" she would be bringing with her. She was happy to receive the referral, though I warned her that the new oncologist would be recommending more-or-less standard treatments. Ultimately, she went home and I was left to reflect on the futility of the situation and the absolute wickedness of the charlatans and hucksters out there who promote this sort of thinking. From the late Dr Gerson, to his modern-day counterparts Andrew Wakefield and Jenny McCarthy.

Most woo is harmless -- but that's because most woo is directed at chronic, ill-defined, or otherwise incurable conditions. Think chronic fatigue or fibromyalgia. Wave a magnet at somebody, get them to do a lot of enemas and go on a special diet, and you get to write a book and go on Oprah and collect a lot of money. If the subjects of the "magical thinking medicine" think they are better from the intervention, then so much the better.

But the really pernicious thing about allowing fantasy medical theories and treatments into the mainstream is that when they gain enough credence among the masses, they will tend to be used in place of real medical treatments that work. Like vaccines. Even the anti-vaxxers have a limited and indirect harm -- of the many thousands of children who go unvaccinated, only a very few get measles and even fewer die. It's a real harm, but one which is easy to miss if you're not affected personally. But when woo supplants real medicine against lethal diseases that actually have effective treatments, the harm is so much more severe and so apparent that it cannot be left unrecognized. Because of the practitioners of "alternative" medical treatments who irresponsibly and
dishonestly teach people to distrust medicine and embrace unscientific treatments, this young woman is enduring incalculable pain, and may well lose her life.

It's sad, and it's an outrage.

Yes. It is both sad and an outrage.

But you folks know I don’t generally write about medicine. What I would like to do is use the unusually sad and outrageous situation described by Shadowfax as a parallel to the crap that we see today in politics.

Please tell me I am not the only one to see a parallel between pseudoscience and the kind of pseudo-philosophy that has captured the polarized wings of American politics.

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