Respectful Insolence

Yesterday, I marveled at an article that appeared on the Associated Press new feed that basically said a lot of things about the infiltration of quackademic medicine into academic medical centers, how so-called “complementary and alternative medicine” 9CAM) is finding its way into the mainstream despite almost nonexistent evidence for the efficacy the vast majority of them, and how supplements are virtually unregulated. If the article had mentioned the extreme scientific and biological implausibility of nearly all of the non-herbal CAM therapies that are routinely promoted, it would have sounded like Orac, only with some of the “tell both sides” nonsense reporters consider mandatory.

I thought that was good enough, but it was just a warmup for act two. The followup is even better. In fact, the followup takes on cancer quackery and it does an excellent job in not just one article, but three articles:

  1. 60 pct of cancer patients try nontraditional med
  2. “You’ll try anything,” says cancer patient
  3. Cancer patient learns herbals can interfere

The beginning of the first of these articles reads like a story I told a long time ago about a cancer patient I dubbed The Orange Man. As my anecdote told the story of a man who had rejected surgery for his rectal cancer in favor of megadoses of carrots and coffee enemas. It tells the story of a cancer patient named Leslee Flasch:

TAMPA, Fla. - With much of her lower body consumed by cancer, Leslee Flasch finally faced the truth: The herbal supplements and special diet were not working.
“I want this thing cut out from me. I want it out,” she told her family.

But it was too late. Her rectal cancer — potentially curable earlier on — had invaded bones, tissue, muscle, skin. The 53-year-old Florida woman could barely sit, and constantly bled and soiled herself.

“It was terrible,” one doctor said. “The pain must have been excruciating.”

Flasch had sought a natural cure. Instead, a deadly disease ran its natural course. And the herb peddlers who sold her hope in a bottle?

“Whatever money she had left in life, they got most of it,” said a sister, Sharon Flasch. “They prey on the sick public with the belief that this stuff can help them, whether they can or can’t.”

This is what the Orange Man was on his way towards. He, however, realized that the quackery he was pursuing was not working before it was too late. That’s not to say that he didn’t pay a steep price. His tumor grew and bled in the many months he pursued coffee enemas and various other woo to the point where it was no longer potentially resectable by an anal sphincter-sparing procedure. He had to undergo a procedure called an abdominoperineal resection (APR), which necessitates removal of the anus and sewing the hole shut, leaving him with a permanent colostomy. Not only that, but he decreased his chance of a cure. Indeed, given that that was 13 years ago, I sometimes wonder if The Orange Man is still alive. It’s probably less than a 50-50 chance.

Mrs. Flasch followed the Orange Man’s path, but she did him one better. She waited too long. The tumor had started to invade surrounding structures: muscle, bone, skin. Let me tell you: I have seen patients like Mrs. Flasch. They didn’t get that way because they pursued woo instead of medicine; they got that way because of neglecting their tumor. Suffice it to say, it’s not pretty. It’s not pleasant. It’s horrifying. These patients suffer unrelenting discomfort and pain. In particular, they often suffer from a nagging, unbearable sensation known as tenesmus, the feeling that they have to pass a stool. Although they strain and try, they pass little or no stool. Have you ever had to defecate but couldn’t? Remember how nasty that felt, how much it drove you crazy until you finally could go? Now imagine feeling that way all the time, 24/7 and you’ll get some idea of how much tenesmus tortures rectal cancer patients and patients with inflammatory bowel disease, who also often suffer from it. Then, as the tumor grows and invades, it can find its way into a plexus of nerves (the sacral plexus) and cause unrelenting pain that is not easily controlled with narcotics. Patients become incontinent, constantly soiling themselves, and the only way to relieve this is to do a diverting colostomy or ileostomy, so that the fecal stream never reaches the rectum.

This same article also describes another patient who succumbed to quackery:

Mary Nedlouf paid that price. She traveled from Orlando, Fla., to a Connecticut doctor who offered to treat a breast cancer that others called incurable. Her husband, Said Nedlouf, said the doctor asked about traumatic events in her childhood to “get to the roots” of her disease. The doctor also passed a wand over her and said he detected a problem with her liver. His treatments were as strange as his diagnostic methods.

“Mary would scream sometimes because those electrical things, those zappers that he put on her, would hurt,” Nedlouf said. “What do you do? We’re thinking she’s getting something, some treatment that’s a cure. She wanted to believe, and I wanted to believe for her.”

After three months of lost wages and $40,000 to the doctor, Nedlouf said he spent another $13,000 for an air ambulance to take his wife home. She died three weeks later at age 42.

“She suffered. And we lost all this money,” said Nedlouf, who filed a complaint in 2007 against the doctor with the Connecticut Department of Public Health that is still pending.

This sounds a lot like an unholy combination of the German New Medicine (or Biologie Totale) fused with Hulda Clark’s “zapper.” German New Medicine, if you’ll recall, is based on the concept that cancer is not really a disease, but rather a reaction to various life trauma and that, to cure cancer, one has to find the source of the life trauma and fix it, while Hulda Clark claims that all cancer is caused by a liver fluke and that she can cure it by “zapping” it with an electrical device that looks cobbled together from spare parts bought at Radio Shack on clearance.

Finally, a companion article describes another cancer patient taken advantage of by quacks, Meg Gaines:

MADISON, Wis. – As a criminal defense lawyer, Meg Gaines valued evidence. But as a 38-year-old mom with ovarian cancer that had spread to her liver, evidence took a back seat to emotion as she desperately sought a cure.

With a cancer that grim and two young children to raise, “you’ll try anything,” she explained.

Which is perfectly understandable. However, it is that desperation that cancer quacks take advantage of, whether they mean well but are simply deluded that they can help or whether they are true scammers. Gaines, fortunately, eventually turned her back on quackery and turned out to have treatable disease.

The original article makes a number of observations of interest. The first is that apparently 60% of cancer patients try some form of unconventional therapy. Given how broadly “unconventional therapies” are often defined, encompassing prayer, supplements, massage therapy, etc., this doesn’t surprise me. What did surprise me was this:

About 7 percent of cancer patients go straight to an alternative approach, sometimes traveling to Mexico, the Bahamas or a “spa” in Europe for treatments not allowed in the United States, Cassileth’s research found. Most cancers spread slowly, so people can be temporarily fooled into thinking herbs or special diets are keeping it at bay.

That number seems rather high to me, and I couldn’t find the original article providing that estimate. If that’s true, it’s a truly frightening number, a huge number of potentially curable patients throwing away their best chance at beating their cancer in favor of quackery that leaves them broke before they die. What does seem correct to me are the other harms that cancer quackery can do to cancer patients: gouge the patient for thousands of dollars; result in deadly delays in treatment; cause false hope; and even interfere with standard chemotherapy.

Indeed, one of these articles is the story of a man who found out just how “alternative” cancer therapies can interfere with standard treatment:

When Palella learned he had cancer, he added the chiropractor’s “prostate cancer protocol” to the other combos he was taking. They had names ending in “plex” and he had no idea what they contained. He swallowed more than three dozen pills each day, and was thrilled to learn that his ex-wife, also a chiropractor, could get them for half price instead of the $700 they would have cost him.

“I said, `Boy, I can take more of this now. I can afford more of the good stuff.’”

And so it went until a dietitian at Tampa’s Moffitt Cancer Center asked if he were taking any supplements. He had always said ‘no’ when doctors asked about medication use.
“I didn’t think they were medications. They’re not prescription, they’re not drugs. This is all natural substances, made from natural products,” he explained.

But he told the dietitian the truth. She was alarmed, and at his next visit, “She had a file ready for me,” Palella said. She said that some of his herbal pills could interfere with hormone treatments for his cancer, and showed him a recent medical study raising concern about that.

“It scared the hell out of me. I thought, ‘I’m not helping things here,’” Palella said

It’s true. It’s not uncommon for supplements to have hormones in them. One example that I have a bit of direct knowledge of, mainly because medical oncologists at my old cancer center studied it, is PC-SPES, which showed some activity against prostate cancer. The reason, it turned out, is because it had a lot of phytoestrogens in it. Of course, in a woman with breast cancer, taking phytoestrogens might not be such a good idea. But that’s not all:

  • Vitamin E can prolong bleeding time and has forced cancellation or delay of cancer surgeries; some studies suggest it may raise the risk of certain cancers.
  • Beta carotene, a precursor of vitamin A, may raise smokers’ risk of developing lung cancer.
  • Folic acid supplements may raise the risk for precancerous growths in the colon.
  • Vitamin C in large doses may help cancer cells resist chemo and radiation.

In January, doctors reported that a selenium supplement containing kelp — which is loaded with iodine — was interfering with the low-iodine care recommended for a man with thyroid cancer.

Herbals and dietary supplements can undermine cancer treatments in ways that patients can’t feel and doctors can’t measure. When a treatment fails, it’s impossible to say whether it was due to the person’s cancer or because a supplement subtly interfered.

There’s reason why these supplements and so much of “alternative” medicine is referred to as “alternative.” It’s because they have not been validated scientifically. They have not been shown by science or clinical trials to be efficacious against the diseases they’re being used for, nor have they necessarily been shown to be safe. As I like to say from time to time, there is no such thing as “alternative medicine.” There is medicine that works, medicine that does not, and medicine that has not been shown one way or the other. The vast majority of “alternative” medicine falls into one of the latter two categories. More importantly, the key difference between “alt med” and science-based medicine is that science-based medicine changes as new evidence comes in. “Alternative” medicine that is shown to be safe and effective by science ceases to be “alternative” and becomes simply “medicine.”

Until that happens, selling “alternative” medicine to cancer patients, regardless of the motivation behind it, is to sell cancer patients false hope and risk delaying their receiving effective therapy, and “complementing” conventional therapy adds nothing while risking harm.

Comments

  1. #1 JD
    June 9, 2009

    A statement to “Concede the Placebo” should be mandatory for ethical disclosure before quack prescriptions are foisted.

  2. #2 Danimal
    June 9, 2009

    If that’s true, it’s a truly frightening number, a huge number of potentially curable patients throwing away their best chance at beating their cancer in favor of quackery that leaves them broke before they die.

    However, it is also true, that using science based medicine for untreatable cancer, can leave one broke before one dies.

    OT: 9CAM) in your first sentence should be (CAM)

  3. #3 BB
    June 9, 2009

    Another excellent post, thank you.

  4. #4 BB
    June 9, 2009

    Another excellent post, thank you.

  5. #5 Alex
    June 9, 2009

    It is great that there are bloggers / doctors like Orac who can shed light on medical fraud and quackery for us laypeople. However the message I am getting from a lot of the posts relating to cancer quackery is that cancer is much much worse than I thought in terms of what is can do to you before it kills you. This leads me to think that the need for legalised euthanasia is considerably greater than I had previously thought. If I end up with a terminal condition I would like to think I will have the physical ability to order a bottle of compressed nitrogen, a facemask to help breathe the stuff and sort myself out before the grisly ends described by Orac occur.

    We take our pets to the vet to stop them suffering at the end of their lives. I want to be treated at least as well as my cat was.

  6. #6 Alex
    June 9, 2009

    It is great that there are bloggers / doctors like Orac who can shed light on medical fraud and quackery for us laypeople. However the message I am getting from a lot of the posts relating to cancer quackery is that cancer is much much worse than I thought in terms of what is can do to you before it kills you. This leads me to think that the need for legalised euthanasia is considerably greater than I had previously thought. If I end up with a terminal condition I would like to think I will have the physical ability to order a bottle of compressed nitrogen, a facemask to help breathe the stuff and sort myself out before the grisly ends described by Orac occur.

    We take our pets to the vet to stop them suffering at the end of their lives. I want to be treated at least as well as my cat was.

  7. #7 joemac53
    June 9, 2009

    Here’s one from the win column. I avoided doctors for 31 years, until I started walking sideways bent over from abdominal pain that was cause by (I knew) a tumor in my colon. Although my blood fooled ‘em for a while, (low levels of whatever markers they looked for) the surgeon said “That’s outta there!”
    Five weeks later I returned to school, missing only one period per week to go get chemo. It is now 5 years later and I am as healthy as a horse. I have had no restirictions to anything I do, except that I have to go to the doctor’s when they tell me or my wife and family will kill me.
    I tell everyone to expect this outcome if they get diagnosed in time. The only other “alternative” is an ugly death. You can have that without spending all your money.

  8. #8 James Sweet
    June 9, 2009

    To play devil’s advocate for a moment here…

    The combination between the “try anything” phenomenon and the potential for herbals to interfere with conventional treatment… maybe this forms an argument for doctors to be, well, tolerant and (dare I say it?) maybe even cautiously respectful towards alternative therapies. Maybe.

    My thinking is that, as long as you have a disease is as deadly and hard to treat as cancer, you’re going to have people who are willing to “try anything”. This is just human nature, good luck trying to change it. And as long as you have people willing to “try anything”, you’re going to have people who, whether they are greedy or just misinformed/wrong, are going to offer silly alternatives to those people. This is also human nature, and you’re going to have about as much luck eliminating hucksterism as you are with eliminating desperation.

    So, knowing that this is going to happen anyway, maybe the best solution is to have doctors foster a respectful discussion with patients who are interested in alternative therapies, so they can be there to intervene if the unconventional stuff will have an interfering effect or be downright dangerous?

    I’m not sure I’m actually advocating this… the flip side is the implicit respectability this gives to the hucksters, and that it essentially facilitates fraud. So maybe that outweighs any potential benefits. I dunno, just a thought..

    I have a unique position on this because my wife is quite susceptible to placebo affects (I’m the reverse — I tend to assume even proven medication isn’t going to work for me, for some reason) and so it may actually be rational for her to use a bit of quackery here and there, as long as its inexpensive and not harmful. I don’t mind paying $5-$10/month for some silly supplement if it makes her stop complaining about some phantom ache or pain. You tell me a cheaper way to accomplish that! heh… Seriously!

    (Now, I do absolutely refuse to pay for anything homeopathic, because it’s just absurd. It can’t work. An herbal supplement could at least in theory have pharmacological effects, even if there is no evidence to suggest the particular one in question has the promised effect — so even though it’s BS, it doesn’t make my head hurt from the burnin’ stoopid.)

    So anyway… yeah. There’s a role for placebos. Could it be beneficial for doctors to non-dismissively discuss placebo options with interested patients, if only to ensure the safety of the placebo? I don’t know if I have an answer to that question…

  9. #9 Antiquated Tory
    June 9, 2009

    I think I’ve mentioned elsewhere an acquaintance who had a Stage IV melanoma, requiring a baseball-sized tumor to be removed from his brain. (He had decided sometime previously to remove a pesky mole himself, though I recall at the time mentioning he ought to have it looked at. Might be false memory though.)
    Anyway, the op was a year ago, his brain is clean, and the secondary tumors he had hither and yon are all in remission. Oh, he has pulmonary fibrosis from the radio and a kidney of granite from the chemo, but he’s alive and looking likely to stay that way. One of the very few. What does he write? He has to “reluctantly” credit scientific medicine with the cure, though of course he has to give some thanks to his Chinese doctor (lots of green tea) as well. Jeez.

  10. #10 Mary
    June 9, 2009

    I had a friend in when I was in grad school–a fairly young woman who was diagnosed with fallopian tube cancer.

    She decided to start taking herbal supplements. She began taking one (I can’t remember which one it was) that actually does seem to have some activity in the literature. Unfortunately the activity was promotion of new blood vessel formation–way to feed tumors. She realized that she was probably doing the wrong thing and stopped taking that.

    But some people won’t look, or they won’t understand if they did find out.

    Sigh.

  11. #11 LovleAnjel
    June 9, 2009

    The families also suffer when this happens– I had a friend in high school who’s mother, before dying of breast cancer, traveled the world, desperate for a cure. She had a large tacklebox full of stuff she took. She not only lost money, she lost the last few months with her children. My friend was so traumatized by her mother’s absence prior to passing that she vowed that if she ever got cancer, she would just let herself die.

    I certainly hope she has changed her mind (we fell out of touch after high school).

  12. #12 bigjohn756
    June 9, 2009

    An old friend of mine with cancer finally went to a real doctor today after a couple of months of treating himself with some weird alternative treatments. He went from Stage III to Stage IV during that time. Thank goodness for these supposedly easy cures promoted by alternative murderers.

  13. #13 Sastra
    June 9, 2009

    James Sweet #8 wrote:

    So, knowing that this is going to happen anyway, maybe the best solution is to have doctors foster a respectful discussion with patients who are interested in alternative therapies, so they can be there to intervene if the unconventional stuff will have an interfering effect or be downright dangerous?

    Would this “respectful discussion” include the information that the alt remedies are probably placebo — or will that information be withheld from the patients because it’s just “human nature” to prefer pleasant, plausible-sounding white lies over hard facts?

    I don’t think I like the idea of doctors routinely deciding which of their patients are better off with placebos, so that they needn’t be totally honest with them. It’s one thing for an individual to sigh, gently accept the foibles of a beloved friend or family member, and kindly play along for the sake of peace. I can understand that. But medical professionals shouldn’t place themselves into that sort of benevolent parent-child relationship with patients. If I ever found out that a doctor deliberately gave me a worthless remedy in order to get me to “stop complaining about some phantom ache or pain,” I’d be much more upset than if he or she had just been honest and told me that they didn’t think there was anything they could do for me.

    In other words, if I’m actually paying a fashion consultant to tell me if these pants make me look fat, I don’t expect a professional to smile and assure me “of course not, honey.”

  14. #14 Michael Simpson
    June 9, 2009

    In reply to a couple of James Sweet’s comments:

    My thinking is that, as long as you have a disease is as deadly and hard to treat as cancer, you’re going to have people who are willing to “try anything”. This is just human nature, good luck trying to change it. And as long as you have people willing to “try anything”, you’re going to have people who, whether they are greedy or just misinformed/wrong, are going to offer silly alternatives to those people. This is also human nature, and you’re going to have about as much luck eliminating hucksterism as you are with eliminating desperation.

    The try anything approach may be human nature, though I would posit that it’s only true for those weak of mind. Nevertheless, I’m less troubled by patient choices than I am about those who prey on those who are desperate. They should go to prison for murder or at least, depraved indifference.

    I have a unique position on this because my wife is quite susceptible to placebo affects (I’m the reverse — I tend to assume even proven medication isn’t going to work for me, for some reason) and so it may actually be rational for her to use a bit of quackery here and there, as long as its inexpensive and not harmful. I don’t mind paying $5-$10/month for some silly supplement if it makes her stop complaining about some phantom ache or pain. You tell me a cheaper way to accomplish that! heh… Seriously!

    I’m a firm skeptic of placebo effects. I have yet to find definitive scientific evidence that it really works, mainly because I cannot find a credible scientific reason that it might exist. Mind over matter? Does not exist. Mind over disease? Unless someone wants to convince me that your mind can exhibit some control over any part of the “immune system”, please, I’d love to know. I am personally convinced that the placebo effect is nothing more than random variation of any pathology, meaning that sometimes random things happen, but it does not mean that because I took sugar pills that random thing happened. Post hoc ergo propter hoc.

    And in the case of cancer, a complex disease with cellular, metabolic, genetic (oh, the list goes on) components, I am absolutely unconvinced that there can ever be a “placebo effect.” Since I don’t believe in miracles, any spontaneous remission that may occur (in fact, has that ever happened?) results from some process that we haven’t studied.

    Once again, the purveyors of these alt med woo remedies ought to be in jail. There is nothing, absolutely nothing, useful in what they provide.

  15. #15 James Sweet
    June 9, 2009

    @Sastra: To answer the question in your first paragraph, I don’t know. I’m not really pitching this, I’m just trying to prompt some discussion.

    So, I was watching Breaking Bad (great show, check it out) and the main character has lung cancer. At one point, his wife asks the doctor about alternative treatments. I don’t remember it word for word, but the exchange went something like this:

    Doctor: “Well, none of those treatments are proven. But anything that makes my patients feel better and doesn’t endanger them, well, I’m all for it.”

    Skyler (the patient’s wife): (looking somewhat dismayed) “So… you’re saying they’re all just placebos then?”

    (The exchange was just to facilitate a plot point where the main character says he has decided to try an alternative treatment, but it just an excuse for why he will be gone all weekend, but I digress…)

    Any reaction to that?

    I think some people would hear that statement and think “oh, all placebos”, and others would hear that statement and think “cool, it might help!” And maybe patients who fall into the latter category are going to try it anyway, so better for the doctor to keep the dialog open? I don’t know… Anyway, that’s sort of what I was thinking when I raised the question. The (fictional) doctor in the show was entirely honest with the patient about the lack of evidence, but supportive if the patient wants to try it anyway.

    Let me reiterate I’m not sure that’s a good thing. I’m just interested at what folks on this blog think about that. There’s so much woo out there, and it does so much damage, that maybe that accommodating attitude is not something we can afford right now.

    I’ll tell you one thing, I wholeheartedly agree with this statement:

    “””
    If I ever found out that a doctor deliberately gave me a worthless remedy in order to get me to “stop complaining about some phantom ache or pain,” I’d be much more upset than if he or she had just been honest and told me that they didn’t think there was anything they could do for me.
    “””

    No doubt. My only quandary is how a doctor should react if a patient expresses interest in seeking out a worthless remedy. But if a doctor actually gives out the worthless remedy, that’s not okay.

  16. #16 James Sweet
    June 9, 2009

    @Michael Simpson: Mostly agree, I just want to say the “placebo effect” I am referring to is much more guarded than what you seem to have thought I meant. By that, I don’t mean an objective change in outcome based on patient belief (“mind over matter”). I just mean a subjective change in patient experience, e.g. less bothered by pain, better outlook on life (even if it turns out to be false), etc. Granted, the same criticisms you bring up about possible random variations, lack of evidence, etc., still apply, but I think it’s less of a leap to say that a placebo could create an improvement in subjective experience in some patients. But hey, maybe even that is bullcrap…

    I’ve got a confession to make: I personally indulge in one very small woo-based habit. Supposedly, if you eat a raw clove of garlic and do a shot of unfiltered apple cider vinegar every day, it “boosts your immune system” (so they say). I suppose it’s roughly plausible, since both of those things have a mild antimicrobial effect (ever wonder why both of those ingredients are present in most pickled foods?), but in practice the effect is probably so trivial as to be effectively nonexistent.

    But it makes me feel good when I do it. It’s definitely bracing, and the rather irrational idea that “hey, who knows, maybe the antimicrobial effect is real” makes me feel satisfied for some reason.

    Clearly, this is not a bad thing. But of course, what I’m eating for woo is actual FOOD and not some fraudulently-marketed supplement that I have no idea what is in it. What if a bogus supplement made me feel the same way? What if I only felt that way if my doctor said it was okay? What if it made me feel so good that I stopped going to the doctor? Well, the answer to the last question is clear, but to the first two, I don’t know… I’m still making up my mind I guess.

    I liked both your comments on it, though, so thanks!

  17. #17 marcia
    June 9, 2009

    On the other hand:

    “But if [alternative therapies] didn’t work, why would we still be doing them thousands of years later?”

    http://www.washingtonpost.com/wp-dyn/content/article/2009/06/08/AR2009060802368.html

    (Check out the, most assuredly, expensive supplements in the article photo. No way the patient gets out of there without paying big bucks to maintain the healthy relationship with the doc, not the healthy body, but the healthy physician/patient relationship.)

    Oy.

  18. #18 blader
    June 9, 2009

    My little sister the hippie has ovarian cancer, typically discovered at a late stage. Typically, it is a tragedy, with a great husband and young kids and dogs and cats involved.

    I set her up with one of the leading OC specialists in the world, at a major academic cancer center, but after almost two years with him, she became dispirited by the lack of progress and the whole style of the approach to her care.

    So she went someplace closer to home and enrolled in a trial at a smaller academic center that emphasizes homeopathic supplementation of standard chemotherapy. In her case, she is currently on a cycle of doxil.

    As a hippie, this is definitely more her style, and who am I, the family’s medical expert and aseptic scientist, to say no, you can’t do this?

    Sure enough, her CA125 numbers have finally dropped, from the 900′s at the beginning of the crisis to below 50.

    She is convinced by the power of the VitC, which is what she is taking as a supplement to the doxil. Although I give more credit to the effects of a recent debulking surgery kicking in, and to the doxil, I am very cautious not to share with her my skepticism about the role of VitC in this response.

    All that matters, the only thing that matters, is that she believes homeopathy is helping. Because it was her choice to do this and acting on that choice gives her a sense of empowerment over the way this cancer has absolutely brutalized her body. And most importantly, because empowerment gives her comfort and hope that she will still be around to help raise her kids. I mean, if this is fantasy, she has more than earned her right to it.

    Until medical science can offer bona fide, very high probability cures for these difficult cancers like ovarian, I absolutely fail to see the harm in trials like those my little sister has embraced.

  19. #19 Pablo
    June 9, 2009

    I have colleagues who work in the area of drug development, and on those occasions that they discover some especially promising cancer therapy, albeit highly speculative, it is often accompanied by a press release (yeah, our university likes to do such things). When that happens, the cancer patients and their friends and loved ones come out all over the place, trying to know if there is a way they can get in on it somehow. Unfortunately, these things are never near clinical trials yet.

    BTW, I purchased my first ever product from the “Supplement” aisle this morning: fish oil tablets. On the advice of the doctor, to reduce triglycerides a bit until the lifestyle changes bring them back in line.

  20. #20 James Sweet
    June 9, 2009

    Yeah, blader’s experience is exactly what I am talking about. Almost certainly, the homeopathy did nothing. And probably, it wasn’t even the placebo effect that turned his sister’s condition around. Maybe she even would have gotten better just as quickly with the more conventional doctor. But her subjective experience was improved by… well, by woo. And that is not valueless.

    So I have to wonder if it’s possible for doctors to take an approach to alt med that facilitates these improved subjective experiences without being irresponsible or causing collateral damage. Maybe it’s not possible… I mean, even in blader’s sister’s case, the homeopathy folks presumably got additional compensation for having her take water pills, which just means more money to fund Big Woo…

  21. #21 wfjag
    June 9, 2009

    Dear Orac:

    This link has nothing to do with this topic (aside from the possible “a good laugh can be the best medicine.” )

    British National Party leader Nick Griffin, who was recently elected to the EU Parlament, and who is a noted Holocaust denier in the UK, was egged at a speech in England, and forced to retreat from the stage. See the BBC report
    http://news.bbc.co.uk/2/hi/uk_news/politics/8091605.stm

    There’s a video link, too.

    There was a time when tomatoes and rotten eggs were considered part of the standard fare of political discourse.

  22. #22 Emma B
    June 9, 2009

    I’m a firm skeptic of placebo effects… Mind over matter? Does not exist. Mind over disease? Unless someone wants to convince me that your mind can exhibit some control over any part of the “immune system”, please, I’d love to know

    What about for conditions whose effects are mostly subjective, though?

    Personally, I have two chronic pain conditions: endometriosis and early-onset knee osteoarthritis. Despite the efforts of my very good doctors, there are times when I just have to deal with pain. NSAIDs have limits, and narcotics aren’t always available or a good option. (Pain management is a whole ‘nother rant.)

    My RE once mentioned trying acupuncture for the endo, and I told him I wasn’t interested. Likewise, my new orthopedist asked me to try glucosamine for the arthritis. Placebo only works if you believe in it to begin which, which I don’t. Honestly, though, I sometimes wish there were some alternative treatment I weren’t already skeptical of. I don’t expect anything to reverse the disease processes which cause me pain, but if there were some placebo that I believed to alleviate the pain, well, I’d feel like I hurt less — and that’s what counts, isn’t it?

  23. #23 sirhcton
    June 9, 2009

    I was pleasantly surprised to see this second article by Ms. Marchione in the local newspaper. A little research on the internet revealed, as usual, quite a bit of editting of good material. My only real complaint is her seemingly light evaluation of acupuncture, reiki, etc. At least she qualifies her comments on those.

    On the whole, a refreshing series, especially compared to the usual light treatment such matters get.

  24. #24 Cat
    June 9, 2009

    “But he told the dietitian the truth. She was alarmed, and at his next visit, “She had a file ready for me,” Palella said. She said that some of his herbal pills could interfere with hormone treatments for his cancer, and showed him a recent medical study raising concern about that.”

    It seems that, at the very minimum, the chiropractor should have been aware that the patient was receiving hormone treatments and thus avoided “prescribing” supplements that were likely to interfere with the man’s treatment.

    But, of course, that’s what we expect of real medical professions. The fake doctors don’t have to ask, rarely think to, and won’t suffer any consequences for their lack of knowledge about the “safe” and “natural” remedies they recommend. In a fair world, recommending a supplement as a valid treatment for any disease would cause *anyone* to face charges of prescribing/dispensing without a license. The supplement makers can’t claim to treat anything on the label, so chiropractors and naturopaths should not be able to claim it in their offices.

    It’s a good thing the dietitian asked about supplements.

  25. #25 Anthro
    June 9, 2009

    This is good news and I read it this morning with high hopes. Then I peeked in at Huff Post (which I kind of quit doing due to the woo factor being so prevalent there), and what should I see but Deepak Chopra attacking the Newsweek article with vigor and defending Oprah even more vigorously! The comments were split about 50/50 with the woos saying mostly totally nonsensical things like, “there’s room for everyone in the healing game”. There was a lot of attack stuff about “Big Pharma”. People seem to confuse BP with medicine, in general. Every doc I’ve been to in the last twenty years makes every effort to prescribe a generic and gives me tons of samples if s(he) can’t or if we are just trying something. The woo people also seem to be blaming doctors for the advertising of pharmaceuticals. The doctors I know personally (and that is not a valid sample) don’t like drugs on TV any more than I do, but they didn’t instigate this, BP and the lawmakers did that.

  26. #26 Mark P
    June 10, 2009

    “Mind over matter? Does not exist.”

    Careful now. We have good solid evidence that it does exist. Denying it places you in the same position as many woo fans — refusing to believe evidence. We even know how to make it more effective (two pills, more expensive, right colour, nice name etc).

    By all means be skeptical. But outright denial in the face of solid evidence is not skepticism. It’s denial.

    I take it you have never been a parent. A three year old child gets a knock. You kiss it better. They go away happy. Entirely placebo effect. And yet any parent will tell you it works.

  27. #27 Mark P
    June 10, 2009

    “Mind over matter? Does not exist.”

    Careful now. We have good solid evidence that it does exist. Denying it places you in the same position as many woo fans — refusing to believe evidence. We even know how to make it more effective (two pills, more expensive, right colour, nice name etc).

    By all means be skeptical. But outright denial in the face of solid evidence is not skepticism. It’s denial.

    I take it you have never been a parent. A three year old child gets a knock. You kiss it better. They go away happy. Entirely placebo effect. And yet any parent will tell you it works.

  28. #28 Grendel
    June 10, 2009

    What do homeopaths do when someone presents at their business with a broken limb or sucking chest wound – pour a little dose of remedy on? or maybe give the limb a little tiny tap with a hammer (like curing like after all), or do they succuss the whole patient?

    Mark (25 and 26) what you describe is not actually placebo effect – this kiss does not cure the hurt or even take away the pain. It provides the reassurance and love that the child needs reminding them that the pain is transient.

    It is dangerous to extrapolate the normal response of a child to reassurance.

  29. #29 sophia8
    June 10, 2009

    I don’t mind paying $5-$10/month for some silly supplement if it makes her stop complaining about some phantom ache or pain. You tell me a cheaper way to accomplish that! heh… Seriously!
    James, If I were your wife I’d be hardpressed to choose between divorcing your or putting rat poison in your food. Seriously.
    There are lots of genuine medical conditions with vague, hard-to-diagnose symptoms.
    For instance, for over two years I put up with constant headaches, depression, draining tiredness and – yes – aches and pains, because I was convinced it was “all in the mind”. My husband had to virtually frogmarch me to a doctor, where I promptly got diagnosed with a couple of conditions, one of which could have killed me without treatment.

  30. #30 James Sweet
    June 10, 2009

    sophia8, the comment you started with is 100% inappropriate and you should be deeply, deeply ashamed of yourself. This is a rational discussion between adults (I assume) and you are now talking about how my wife should poison me?! I just don’t even know what to say. :( I would urge you to reflect on the fact that just because it’s the internet doesn’t mean people don’t have feelings.

    FWIW, I’ll just mention briefly that 1) I was intentionally vague because of privacy (I use my real name on the internet) and because the specifics aren’t really that important anyway, but if you knew the specifics then your entire comment would sound absurd; 2) I have never suggested woo to my wife, I only tolerate it when she requests it, and even then only sometimes; and 3) I would never let my wife treat something solely with woo if she had not already been to a legitimate doctor about it.

    I would elaborate, but frankly, I don’t think you even deserve this much of a response from me after what you just said. I know, it’s the internet, and people just love to flame each other, but what you said crossed a very bright line and was entirely uncalled for. I hope you reflect on that for a bit.

  31. #31 Calli Arcale
    June 10, 2009

    I have to agree; sophia, that was uncalled for.

    I thought I’d typed a response to this thread last night, but I don’t see it, so I’m guessing either I’m thinking of some other thread, or it didn’t go through. (Was having network problems last night.) The “do anything” mindset is certainly real, and doesn’t just express itself through alt med. Indeed, since most people don’t perceive a distinction between “conventional” and “alternative” medicine, it’s reasonable to expect to see the “do anything” mindset within conventional medicine as well.

    Case in point — I know someone who is deeply in love with conventional medicine. She will try anything if she thinks it will improve her health, and this has included a number of interventions that really do not make sense for her. She gets surgeons to do it by not telling them about the risks that made other surgeons say “no”. Plus, she has a remarkable gift for manipulation. She could probably rule the world if she wanted to…..

    To cut a long story short and avoid too many details, she is an example of someone who would try anything, as long as it could be provided by a man in a white coat with an “MD” in his list of qualifications. I’m not sure if it’s better or worse than someone who tries alt med in desperation; on the one hand, at least she’s being seen by doctors with proper training to recognize things, but on the other hand, the way she exercises her considerable will on these doctors means that they’re not really deciding in her best interests. They’re just doing what she wants them to. And that’s not good either. Certainly, it’s possible to bankrupt oneself through unnecessary conventional medical procedures just as it is through pointless alternative therapies. She’s got plenty of money; there’s no worry there. But I do worry about her shortening her own life by embarking on procedures with high risk and minimal odds of quality-of-life improvements.

  32. #32 LinzeeBinzee
    June 10, 2009

    “As I like to say from time to time, there is no such thing as ‘alternative medicine.’ There is medicine that works, medicine that does not, and medicine that has not been shown one way or the other. The vast majority of ‘alternative’ medicine falls into one of the latter two categories. More importantly, the key difference between ‘alt med’ and science-based medicine is that science-based medicine changes as new evidence comes in. ‘Alternative’ medicine that is shown to be safe and effective by science ceases to be ‘alternative’ and becomes simply ‘medicine.’”

    This is what people just don’t get. I’ll be referring people to this blog post often. Thank you Orac!

  33. #33 World Vitamins Online
    June 10, 2009

    It is unfortunate that there are some people promoting herbal “cures” to cancer patients. They are doing the patient and the industry a disfavor. Vitamins and supplements along with a balanced diet can help to prevent some forms of cancer but not cure on that is already present.

  34. #34 World Vitamins Online
    June 10, 2009

    It is unfortunate that there are some people promoting herbal “cures” to cancer patients. They are doing the patient and the industry a disfavor. Vitamins and supplements along with a balanced diet can help to prevent some forms of cancer but not cure on that is already present.

  35. #35 Happeh
    June 10, 2009

    ‘Im a firm skeptic of placebo effects… Mind over matter? Does not exist. Mind over disease? Unless someone wants to convince me that your mind can exhibit some control over any part of the “immune system”, please, I’d love to know

    I cannot find who wrote the above. It is so wrong.

    Scientists are fixated on the microscopic. That is why they miss so much. This person is thinking only in terms of microscopic. They believe that if a human being can use their mind to control their body, they would change microscopic chemical compounds.

    Why? Why is that the only possibility for mind over matter?

    Because scientists are fixated on genes and chemicals and the microscopic. They have tunnel vision.

    Have any of you ever tried to make a part of your body hot? Did it work? That is mind over matter. Easy. Nothing special about it. Nothing that breaks the laws of science about it. Nothing woo about it.

    You can find thousands of human beings who can change their temperature at will for any study you care to design, but for some reason scientists refuse to believe that mind over matter works.

    I don’t get you people. Stubbornness? Incompetence? Mental Deficiency? Stopping alternative medicine so you get all the money?

  36. #36 James Sweet
    June 10, 2009

    It is worth pointing out that Happeh is completely insane:

    http://www.happehtheory.com/

    And a bigot to boot:

    http://www.happehtheory.com/Homosexuality/HappehTheoryAndHomosexualityMainPage.htm

    Unless that whole thing is supposed to be a parody site….?

  37. #37 wfjag
    June 10, 2009

    Or, perhaps Happeh is a US Congressman from Ohio, who thinks that meditation is the way to control health care costs and wants to add it to the proposed comprehensive healthcare bill. See,

    Congressman: Add meditation to healthcare bill
    @ 9:52 am by Eric Zimmermann
    June 10, 2009
    http://briefingroom.thehill.com/2009/06/10/congressman-add-meditation-to-healthcare-bill/

    Of course, other possible conclusions are that Congress is a parody (albeit, an expensive one), or, that Happeh is no more over the rail than Congress.

  38. #38 James Sweet
    June 10, 2009

    wfjag: Heh, indeed… my opinion? Way too many congresspeople in the House of Representatives, and the way reps are elected combined with the way congressional districts are drawn is basically a recipe to get a sizeable minority of whackos elected to federal office.

    Amongst the Senate, while there are some senators I feel are grade A assholes and/or whom I just strongly disagree with, they don’t tend to be completely crazy (I’m sure there are exceptions…) Representatives, though? There’s gotta be at least a dozen that are total kooks.

    (In fairness, meditation probably is useful for pain management for many people… It’s a big leap from recognizing that to having this weird ax to grind about “mindfulness” being mentioned in the healthcare bill (?!?) but just judging his premise that meditation can improve some folks’ subjective experience, sure, I’ll buy that…)

  39. #39 wfjag
    June 10, 2009

    “but just judging his premise that meditation can improve some folks’ subjective experience, sure, I’ll buy that…”

    I have no problem with you — as in personally — deciding to buy meditation as a healthcare product. I personally like acupuncture — however, I also admit that the evidence of effectiveness is very slim to none, and I don’t think that anyone else should pay for my personal preference. We all have our lucky tokens, and as long as we pay for our own and they are harmless, there’s no objection. The problems arise when others have to pay and/or they aren’t harmless.

    As far as Congress, in addition to the kooks — and in the Senate, look at the record of Tom Harkin (D. IA) on CAM before concluding that there aren’t some completely crazy ones (and take into account that since Senators only run for re-election every 6 years (instead of every 2), you aren’t constantly bombarded with their opinions) — in Congress even the sane and honest depend upon the traditional news media for information. Most grew up pre-internet. Accordingly, a recent study reported by STATS is disturbing:

    “The Internet – a sober corrective to unruly journalists?
    Trevor Butterworth, May 22, 2009
    Scientists view of new media’s credibility suggests journalism needs to evolve

    A decade ago, the Internet was seen by professional journalists as the “Wild West” of news and information, carefree to the point of lawless – and in need of marshalling for accuracy and reliability. Now, it seems that the positions have switched, at least in terms of scientific information, and it’s the Internet that is providing sobriety and balance to a chronically careless and sensationalistic mainstream media.

    The survey results showing that WebMD is the only news source rated as accurate by a majority (56 percent) of toxicologists for covering the risks of chemicals, followed by Wikipedia (45 percent), whereas only 15 percent described similar coverage in the national print media (i.e., the New York Times, Washington Post, and Wall Street Journal) as accurate. This figure dropped to 6 percent for USA Today and 5 percent for broadcast network news. Whether industry employed or working in academia, overwhelming majorities of toxicologists said that journalists did a poor job with basic scientific concepts such as causation and correlation – and being able to distinguish good studies from bad ones [see main article for more detail]”

    for the rest, see

    http://www.stats.org/stories/2009/internet_sober_corrective_unruly_journalists_may22_09.html

    Unfortunately, this amply supports Orac’s original premise of this blog — that generally the traditional news media hasn’t got a clue about science and medical issues.
    However, the folks who are about to decide your access to and quality of healthcare [at a cost of $Trillions for you, your children and grandchildren] are relying on the traditional news media for information and opinions.

    And, with that much money involved and senior Senators like Harkin who are true believers in CAM, . . . let’s just say that I’m not especially hopeful about the prospects for quality medical care being available in the future, or for funding for high quality research for future advances.

  40. #40 sophia8
    June 10, 2009

    I made my “inappropriate” comment on the basis of James’s callous-sounding and flippant remarks – it was 100% appropriate in that context, so I see no reason to withdraw it.
    I do accept that that James is certain that there is no physical basis for his wife’s “aches and pains”. But hypochondriachal pains are just as real as any other type of pain; he should be asking what the causes are, instead of mocking her.

  41. #41 James Sweet
    June 10, 2009

    I didn’t mean it to sound mocking. I hope it didn’t come across like that. My wife is awesome, and in many ways a very rational person. I was trying to be intentionally vague because, as I mentioned, I use my real name, and I thought it would be rather lousy of me to describe in detail my wife’s medical history while using my real name. In trying to be vague, maybe I came off as flippant instead.

    Even if I had intended to be flippant, though, coming out of the blue in a calm rational discussion and saying someone’s spouse should poison them is FUCKED UP. And if you don’t see why that’s wrong, I feel sorry for you. (And for your husband, for that matter! But I do hope he doesn’t divorce you or poison you, because I would never wish that on someone I don’t even know.)

  42. #42 James Sweet
    June 10, 2009

    Let me give one specific example, as I don’t think this is disclosing too much personal information, and I think it will help explain where I am coming from.

    So, you know, after you give birth, you discharge blood for a little while, because of the wound from where the placenta separated from the uterus. It’s more blood, and lasts quite a bit longer, than menstruation. It’s perfectly normal, though, as long as it is a) not too much, and b) doesn’t last too long. My wife and I were well prepared for this and already knew from books, a birthing class, the hospital, and the midwife how much blood is “too much”.

    Despite this, it made my wife kindof nervous anyway. I don’t blame her in the slightest — if I was bleeding out of my dick, I’d be pretty much consumed with anxiety 24/7 no matter how many times a doctor told me it was perfectly normal. heh… The amount was actually less than we were told to expect though, and I did my best to reassure her. She felt a little better, but was still a bit nervous.

    After searching around on teh interwubz, she found some herbal crap that “they say” speeds up the healing process. I think we found out later it was even homeopathic, so you know, pretty much impossible for it to do anything. But taking it it made my wife feel less nervous. I think the psychology here is pretty straightforward: it’s hard to accept that you just have to sit around and wait for your body to heal itself, and it can feel good to believe you are actively doing something about it, even if what you are doing is ultimately pointless.

    I actually admire and envy my wife’s attitude in this regard. As I mentioned, if I were passing bloody urine but the doctor said it was no problem and would clear up in a couple of weeks, I would be anxious all the time and a magic feather wouldn’t really do anything for me. I’d probably respond by being grouchy and skittish. In comparison, my wife spending $7 on some snake oil seems like a much better solution!

    In the end, she healed much faster than expected (though it probably had nothing to do with the “natural” remedy, just with her being generally healthy) and all was well.

    I don’t want to give the impression that I was like, “Here, take this and stop complaining!”, either. We continued to discuss it after she started taking the remedy, and I wouldn’t have had it any other way, because if she had started to bleed excessively, that’s something you need to take care of right away. I wouldn’t want her concealing something like that (not that I think she would, but my point is it was good that we still talked about it).

    All I meant to say is that woo sometimes gives my wife comfort, and given that, I think it is often a pretty damn good value. If the way I said it came off as flippant or mocking, I regret that.

  43. #43 Skemono
    June 10, 2009

    I made my “inappropriate” comment on the basis of James’s callous-sounding and flippant remarks – it was 100% appropriate in that context, so I see no reason to withdraw it.

    You’re saying that suggesting murder is a 100% appropriate response to flippancy and callousness? I’m not so sure that it is.

  44. #44 alison
    June 10, 2009

    I want to know what the chiropractor was doing dishing out various pills anyway… Surely they believe that spinal manipulations will fix whatever ails you, so why the need for extras??

  45. #45 Mark P
    June 11, 2009

    “Mark (25 and 26) what you describe is not actually placebo effect – this kiss does not cure the hurt or even take away the pain. It provides the reassurance and love that the child needs reminding them that the pain is transient.”

    See, that is just what the woo merchants do. When presented with evidence they rationalise it away.

    The placebo effect is about reassurance. Reassurance that they are getting effective medicine and will be cured. Of course it doesn’t actually take away the source of the pain (no-one says it does) it just makes it more bearable. Which is pretty much identical from the patient’s point of view. You don’t recognise the placebo effect when you see it, rather than it not existing.

    Anyway the kiss often DOES take the pain away. It isn’t just saying that it will go away soon — in some cases it is immediately effective. Kids will go from crying to happy in seconds.

  46. #46 James Sweet
    June 11, 2009

    To amplify what Mark P said, until/unless someone comes up with a completely objective, unambiguous way to measure pain that does not rely at all on the patient’s perceptions, the difference between “takes the pain away” and “reminding them that the pain is transient” is purely philosophical. You’re basically arguing how many angels will fit on the tip of a syringe. :p

    Improving the subjective experience of the patient has value. I don’t think there should be any dispute on that. To me, the far more interesting question is whether it is possible (and if so, how), when a patient finds that some quack remedy improves their subjective experience, to manage that without doing more harm than good.

    The two big barriers in my mind are 1) it is imperative that doctors not lie or deliberately mislead, even if to do so would improve the patient’s subjective experience, and 2) even when it is a clear win from an individual perspective, it is of no small concern that this provides both money and legitimacy to Big Woo, possibly driving other patients away from conventional care entirely, or at the very least allowing outright fraudsters to make a nice living.

  47. #47 gw
    June 11, 2009

    OMG. A woman died using alternative medicine. Thank god the traditional medical establishment never loses a patient! Seems to me you guys manage to kill tens of thousands each year.

    Maybe alternative medicine might be a viable option if big medicine didn’t continually try to squash it.

    And are you people posting here always this defensive and hostile? Downright scary. No wonder people are turning away from big pharma and the chemo industry.

  48. #48 James Sweet
    June 11, 2009

    OMG. A woman died using conventional medicine. Thank god the alternative medical establishment never loses a patient! Seems to me you guys only avoid killing tens of thousands each year because desperately sick people eventually turn to real cures.

    Maybe conventional medicine might be more successful if Oprah’s multi-billion dollar media empire didn’t continually try to discredit it.

    And are you alties posting here always this defensive and hostile? Downright scary. No wonder people are turning away from Big Woo and the Quackery industry.

    (And if you don’t think woo is big business, tell my why there is an entire aisle in my local natural foods store devoted to selling WATER PILLS for $20 and up? Hmmm?)

  49. #49 Kristie McNealy
    June 12, 2009

    “(And if you don’t think woo is big business, tell my why there is an entire aisle in my local natural foods store devoted to selling WATER PILLS for $20 and up? Hmmm?)”

    Tell me about it. I go to a local “natural” grocer for certain allergen free foods for one of my kids. When I’m there I always take a spin down one of the many aisles of supplements just to see what crazy new stuff they have. It never ceases to amaze me what they are selling, and how much it costs…

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