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The Orange Man

The first thing that struck me about him was that he was orange.

It was not a shade of orange I had ever ever encountered before in a patient. It was a yellowish orange, an almost artificial-looking color. At first I wondered if he was suffering from liver failure with jaundice, but this orange was just not the right shade of yellow for jaundice, and his sclerae were not yellow. I also considered whether he was suffering from renal failure, but the orange color of his skin didn’t quite match the rather coppery color that some patients suffering from longstanding renal failure necessitating dialysis sometimes acquire. I was puzzled. His chart said that he was being admitted for surgery for rectal cancer. So I sent the intern in to get the story, do the history and physical, and get him all plugged in for his bowel prep. Believe it or not, there was actually a time when it was not all that uncommon for patients to come into the hospital the night before major abdominal surgery in order to undergo a preoperative bowel prep, rather than being forced by their insurance companies to undergo the torture of drinking four liters of the purgative known as Go-Lytely–a misnomer, if ever there was one!–at home and spending the next several hours having to rush periodically to the toilet, waiting in vain for the liquid exploding out of their hind end to run clear.

Over twelve years ago, I was in my chief resident year in general surgery. I was doing a rotation as chief of one of the general surgery services back at the mothership (the main university hospital). This particular service was home to several colorectal surgeons, as well as the chief of the general surgery service. Consequently, we saw a lot of good, solid general surgery involving the colon, one of the organs that many general surgeons like to operate on the most. Naturally, a lot of this surgery was colorectal cancer, given how common this variety of cancer is. It was while I was doing this rotation that I first encountered the Orange Man, as I dubbed him in my mind (although I never called him that out, not even to the other residents, who might have found it amusing).

When rounding with my attending, the Orange Man’s surgeon, the one who had admitted him for the next day’s operation, I learned the sad tale of our patient. He was a man in his early 50′s, who had first seen my attending over a year before. He had suffered BRBPR (which, non-medical types, stands for “bright red blood per rectum”) and been referred to a gastroenterologist, who quite appropriately examined him and did a colonoscopy. This revealed a rather low-lying rectal cancer. He was next referred to my attending, who evaluated him, found that there was no evidence of metastasis of his tumor to the liver or elsewhere on CT scans, and recommended surgery. Although the tumor was relatively low in the rectum, the attending thought there was a very good chance he could do an anal sphincter-sparing procedure, known as a low anterior resection, possibly with either a very low anastomosis or a coloanal anastomosis. However, the patient would have to be prepared for the small possibility that it might require an abdominoperineal resection (APR) to remove the tumor. We generally try to avoid APRs whenever possible because APR involves taking not just the rectum, but the anus as well. It necessitates sewing the hole through which the anus once passed shut and leaving the patient with a permanent colostomy. APRs are sometimes necessary for very low-lying cancers, cancers that can’t be removed with an adequate margin of normal tissue between the tumor and the anus, or tumors low enough to be invading the anal sphincter mechanism itself.

Scary news indeed. I can only imagine the reaction of the Orange Man upon hearing the news. He was probably terrified. Certainly, I’d be scared if it were me. Certainly, I wouldn’t want to have a permanent colostomy if it wasn’t possible to get the tumor out with a clean margin and still save my anal sphincter. No one, and I mean no one, does. But, if it had been me, I’d still have undergone the surgery, because I know it would be my best shot at long-term survival. I’d take the small chance that it might be necessary to have a permanent colostomy. It also helps that I knew my attending was an excellent surgeon, and I would have trusted him to have the surgical judgment necessary to know the right thing to do.

The Orange Man, unfortunately, made a different choice. Convinced that he could find another way to avoid all that nasty, allopathic medicine, with its emphasis on “cutting and burning,” he sought “alternative” medical treatments. In his search, he somehow found his way to New York City, where he discovered a practitioner recommending a regimen that involved coffee enemas and megadoses of carrot juice. There he returned periodically for over a year, all the while purging himself with coffee enemas, consuming megadoses of carrot juice and vitamin supplements, and undertaking various other “alternative” treatments for a potentially curable cancer (and, I guess, trying to ignore the increasingly orange tint his skin was developing).

Coffee enemas? I couldn’t believe it. I had never heard of such a therapy before. Remember, this was 12 years ago, and I was a chief resident in general surgery. My interest in unscientific medicine and implausible medical claims was years in the future. At the time I wondered: What possible use could coffee enemas have against cancer? The only use for them I could imagine at the time was possibly as a more rapid (and highly disgusting) method of delivering caffeine directly into the bloodstream.

I didn’t know about it at the time, but now I can speculate that the “therapy” the Orange Man had chosen was very likely some variation of the Kelley/Gonzalez treatment, described so eloquently by my co-blogger Kimball Atwood. The inspiration for this “therapy,” first developed by Max Gerson, MD back in the 1940′s and 1950′s, after which a variant of a similar “detoxification” regimen was developed and practiced by William Kelley, DDS in the 1960′s, and still practiced today by Nicholas Gonzalez, MD, is a belief that all cancers come from a deficiency of pancreatic enzymes, which supposedly allows cancer cells to grow. According to the “concept” behind this, cancer grows and metastasizes because there is lack of cancer-digesting enzymes in the body. The solution is, supposedly, to get pancreatic enzymes to the place where cancer is growing in a concentration high enough to stop growth, but not so high as to cause too rapid production of “toxins” from tumor breakdown. Consequently, the treatment consists of “detoxification” with coffee enemas, which supposedly help flush the waste products of tumor cell breakdown out of the body; dietary manipulations; ingestion of pancreatic enzymes; and megadoses of supplements and vitamins, like carrot juice. The original Gerson diet required more than a gallon a day of juices made from fruits, vegetables, and raw calf’s liver, but, as I later learned, there are many variants to this sort of therapy, and none of them have any plausible basis in physiology, tumor biology, or pharmacology.

Looking back on the incident, I now wonder if the Orange Man was treated by Dr. Gonzalez himself, given that New York is where Gonzalez has practiced his brand of woo for many years.

The Orange Man was finally forced to return to my attending when it became clear even to him that the coffee enemas and megadose carrot juice therapy were not working. His rectal tumor had continued to bleed intermittently but with increasing frequency. It had continued to grow slowly and even started to interfere with his ability to defecate. Finally, it had began to produce the horrible sensation of tenesmus, which is the intractable sensation of having to move one’s bowels that rectal cancer patients sometimes get and which can at times be almost unbearable because it can never be relieved with actual defecation. Finally, the Orange Man had had enough.

Unfortunately, the cancer hadn’t yet had enough the Orange Man. By the time he returned to “conventional” doctors and surgeons, his tumor had grown considerably. It was now intermittently bulging out of his anus and may have been growing into his anal sphincter. Indeed, I examined him and was amazed at the size and firmness of this mass, which was easily reachable on rectal examination. Fortunately, CT scans showed that the tumor still did not appear to have metastasized to the liver or elsewhere. Fortunately for The Orange Man, the tumor still appeared to be operable. But he would require an APR and a permanent colostomy for the tumor to be excised with curative intent. So low and so large was the tumor that there was zero chance of sparing the anal sphincter and no chance that he would avoid a permanent colostomy. There was also a very high chance that the Orange Man would be left permanently impotent, as well.

The Orange Man was the first patient to teach me that alternative medicine that is ineffective is not harmless.

I still remember his operation. It was one of the last ones I did before I had to move on to another service. The Orange Man had a bulky rectal tumor that was very difficult to remove, along with numerous hard, suspicious lymph nodes in the mesentery, going all the way up to the root of the aorta. He clearly had node-positive disease, a negative prognostic factor. Also ominous was the observation that the tumor had clearly invaded all the way through the wall of the rectum, another negative prognostic factor. All I can remember thinking is: How on earth could this guy have chosen not to undergo surgery a year before, back when his tumor would have been much more easily removed, and he would have had a good chance of not needing an APR (with its attendant permanent colostomy), not to mention a much better shot at long-term survival? Why? What did the “alternative” medicine practitioner tell the Orange Man to convince him to forsake proven effective therapy? Did the practitioner promise him he could be “cured” without surgery, radiation, or chemotherapy, without pain? Did the practitioner scare him with horror stories of the complications from such therapies? Did he describe “conventional” therapy as “cutting,” “burning,” or “poisoning,” as so many such practitioners do? Dd he or she do a little of all of these?

I don’t know what ever happened to the Orange Man. I felt very sorry for him. He had clearly been taken in by a quack and was more likely than not to pay the ultimate price. And he knew it, too. A few days later, before the Orange Man was discharged, I had to move on to another service in another hospital. I never saw Orange Man again. Given the extent of his disease, there’s certainly less than a 50-50 chance that he is still alive today. If he is still alive, however, there is a 100% chance that he has a permanent colostomy that he very likely wouldn’t have required if he had simply undergone treatment according to known and effective regimens worked out through scientific medicine.

Alternative medicine that is ineffective is not harmless.

When I hear advocates of alternative therapies claim that their therapies are harmless, I think of the Orange Man. When I hear advocates of alternative therapies claim that their therapies are harmless, I also think of women like the one whom I discussed about a month ago or like Patti Davis, who underwent a breast biopsy and was told that she had breast cancer. Her cancer would have had a high probability of being cured (oncologists hate to use that word, but in this case it is not entirely inappropriate) with conventional therapy. However, instead she, like the Orange Man, opted for a variant of the Gerson therapy, driving to a clinic in Tijuana, undergoing “detoxification, and eating 7-8 pounds of carrots a week at one point. Her mother, who had had breast cancer at age 47 and survived 22 years after surgery, radiation, and chemotherapy, urged her daughter to finish her surgical therapy and a course of conventional therapy, to no avail. Mrs. Davis ultimately did return to conventional therapy when she felt a lump under her arm that had developed while she was undergoing the Gerson therapy and finally realized her mistake.

By then it was too late. She later died at the age of 39.

And she has company: Debbie Benson, who eschewed conventional therapies for a treatable cancer; Lucille Craven, who went so far as to hide her diagnosis from her husband for many months while she sought treatment from various “alternative” practitioners; and many others.

Alternative medicine that is ineffective is not harmless.

I think of the Orange Man and Patti Davis, when I read or hear advocates of “complementary and alternative medicine” (CAM) crowing about how the Gonzalez regimen was tested by an NIH-funded trial. What they forget are patients like those above and how the results of that clinical trial mysteriously have never been published, as Dr. Atwood pointed out. Although I support the rigorous testing of alternative medicine therapies in clinical trials to determine whether they have any efficacy, money is wasted when it is used to test implausible medical claims with no good preclinical or clinical evidence to support it. A prime example, the Gerson/Gonzalez therapy trial was funded on the basis of a single uncontrolled and poorly designed clinical study of 12 highly selected patients with pancreatic cancer. Dr. Atwood has ably described the many deficiencies in this preliminary study, the worst of which was the non-consecutive nature of the case series, which smelled strongly of cherry-picking of patients over three years. R01 grant applications for conventional medical therapies usually require considerable preliminary data from basic science, preclinical animal experiments, and often preliminary clinical trials if they are to have a shot at being recommended for funding. Where was the in vitro data to support the Gonzalez protocol, showing activity against pancreatic cancer cell lines? Where were the preclinical animal studies showing activity in models for pancreatic cancer (or any cancer)? Where were the animal studies that support the supposed mechanism by which the therapy is postulated to work? Not in the scientific literature or in the grant application, as far as I can tell. If I were to submit a grant application to the NCI for funding for a clinical trial based on so little data, the study section would deposit my application in the circular file; that is, if they didn’t pass out from laughing so hard first.

And don’t even get me started on the NIH Trial to Assess Chelation Therapy (TACT)!

Patients who choose implausible or unscientific treatments in preference to proven treatments who suffer, but they are not the only ones who suffer the consequences of their choice. It’s also their families and friends, who watch them die from potentially curable diseases (all too often draining their life’s savings along the way).It’s children who lose their parents and men and women who lose their spouses. Indeed, it’s all of us, who fund these ineffective treatments or end up paying more through taxes and insurance when a patient who might have been treated more effectively and inexpensively requires much more difficult and expensive treatment because of a delay caused by the pursuit of ineffective therapies and false hopes, who suffer as well.

Alternative medicine that is ineffective is not harmless.

Posted in: Cancer, Clinical Trials, Science and Medicine, Surgical Procedures

Leave a Comment (55) ↓

55 thoughts on “The Orange Man

  1. revmatty says:

    Note that the Orange Man phenomenon was addressed in season 6, episode 4 of Scrubs (My House) in a parody of the show House.

  2. overshoot says:

    The links to the stories of Benson, Craven, and Davis are useful. Thank you.

    It is unfortunate that there doesn’t seem to be any readily-accessed repository where all of these unfortunate cases can be found to rebut the “tales of woo.” Our aversion to reliance on anecdotes is correct from a scientific perspective, but we aren’t always dealing with people who have a scientific perspective. For those to whom anecdotes are more persuasive than science, I’ll gladly use anecdotes.

  3. jonny_eh says:

    Not to mention Sandy Nette, who became paralyzed after a neck manipulation from a chiropractor.

  4. Fifi says:

    overshoot – Well said, it’s about communicating risk to people and often putting something into a human context (such as an anecdote) does this much more effectively than presenting statistics or facts that a person may not have the ability or context to understand.

  5. pec says:

    The logical conclusion we can draw from this example is that there are alternative treatments that do not always work. We also know that there are mainstream treatments that do not always work.

    But your intention in providing this anecdotal evidence is to convince us that no alternative treatments ever work. And there is also the hidden suggestion that all mainstream treatments always work.

    What would you say if an alternative practitioner described some of his successful outcomes? You would say that’s anecdotal and does not count as scientific evidence. Yet you think anecdotal evidence is fine as long as it supports what you already believe.

    You discount alternative ideas that have not been tested experimentally, and you want to prevent them from being tested experimentally, because you assume, without scientific evidence, that they are unlikely to work.

    There is nothing open-minded or scientific about your approach to alternatives. You have settled on surgery, toxic chemicals and radiation as the approved treatment for cancer, and you never imagine for a moment that there could ever be anything better. You would like medical science to stop right where it is right now and never progress.

  6. Joe says:

    There is an aggregator of harm: http://whatstheharm.net/

  7. DavidCT says:

    overshoot

    Have you been over to http://www.whatstheharm.net? It is not very fancy yet but there are a fair number examples of harm.

  8. Karl Withakay says:

    PEC, you seem to have missed the point.

    David’s post was not an attempt to convince anyone that CAM does not work; that effort has already been put forth here and elsewhere ad nauseam by David and many others.

    (Odds are if you are a frequent visitor to this site, you either hold a low opinion of CAM already, or you are trolling. -but that could be a false dichotomy)

    I don’t like to presume to speak for others, but I believe his point (clearly stated) was that given that CAM does not work, (which has been and will continue to be debated in other posts) the assumption that CAM is at worst harmless, is false.

    People who consider CAM a viable means of treatment for serious, life threatening conditions and eschew conventional treatment are being harmed by their reliance on CAM.

    CAM and real, scientific medicine are mutually exclusive, and can’t truly coexist. (Sure, you can keep that tiger as a pet, but sooner or later, it’s going to bite you. -Admittedly, this is argument by analogy)

    I am sure David has seen his fair share of patients who choose to have only surgery and skip chemo and/or radiation because they don’t want to experience the side effects of the follow up therapies and hope that surgery alone will take care of their cancer. The concept that CAM is harmless implies that a patient will undergo the full prescribed regime of scientific medical treatments in addition to CAM, and therefore be unharmed if the CAM has no effect. These stories illustrate what is likely to be a more common scenario, that people will replace or delay conventional treatment in favor of CAM, and therefore suffer as a result of such choices.

  9. Fifi says:

    Karl – “These stories illustrate what is likely to be a more common scenario, that people will replace or delay conventional treatment in favor of CAM, and therefore suffer as a result of such choices.”

    I suspect that most people use CAM as a “complimentary” therapy not their main choice. (Many of us have agreed to put pec on “ignore” for trollish behavior that doesn’t contribute anything productive to conversation, to put it kindly.)

  10. pec says:

    “Odds are if you are a frequent visitor to this site, you either hold a low opinion of CAM already, or you are trolling. -but that could be a false dichotomy”

    Wow. In other words, you assume that people only visit blogs where they agree with everything the blogger says, unless they’re a troll.

  11. pec says:

    “David’s post was not an attempt to convince anyone that CAM does not work; that effort has already been put forth here and elsewhere ad nauseam by David and many others.”

    They want to stop funding for CAM research! They don’t want scientific research on alternatives to what they already “know” is the best approach! They don’t want to ask or answer the question. They have settled on the “truth” and will not consider alternatives.

    Is that scientific, in your opinion?

  12. pec says:

    And I did not miss the point. The point is that CAM is not only useless, it’s dangerous. All CAM, no exceptions. Anything they label as CAM — and who knows how they decide that — is useless and possibly deadly.

    What that boils down to is Gorski claiming his own approach to cancer the treatment is correct, anything else is useless and/or harmful. He will not entertain the possibility that something better might exist. No alternative approaches should be allowed to prove themselves. They have to be wrong, because he thinks they are wrong.

  13. David Gorski says:

    And I did not miss the point. The point is that CAM is not only useless, it’s dangerous. All CAM, no exceptions

    If that’s what you think this post said, then you can’t read.

  14. Fifi says:

    Back to orange people, I vaguely remember a time when beta-carotene was sold as a “fake tan” kind of thing – though not being a fake tan fan I don’t remember whether one took pills or just rubbed orange dye on oneself. Whatever the case, I remember it being particularly weird and ugly (though I find all fake tans kind of aesthetically strange since there are no tan lines!)

  15. Derek says:

    PEC, you argue that you are not troll, yet you put words in David’s mouth that are virtually the opposite of what he wrote in the post. You say:

    They want to stop funding for CAM research! They don’t want scientific research on alternatives to what they already “know” is the best approach! They don’t want to ask or answer the question. They have settled on the “truth” and will not consider alternatives.

    He wrote:

    Although I support the rigorous testing of alternative medicine therapies in clinical trials to determine whether they have any efficacy, money is wasted when it is used to test implausible medical claims with no good preclinical or clinical evidence to support it.

    Any quack who throws together a 150-pill regimen and claims implausible results with virtually no evidence cannot expect the whole medical community to rally to his defense. Not when there are treatments on which to spend that time and money which are backed by unbiased data.

    You seem to want to paint this point of view as a support for a dogmatic orthodoxy, but it’s just common sense — and yes, it’s scientific.

    Bottom line: it is completely within the power of those championing alternative treatments to provide the evidence that will get them taken seriously.

  16. pec says:

    “If that’s what you think this post said, then you can’t read.”

    You were saying that when people choose CAM over standard mainstream treatments they may be endangering their lives.

    Yes I agree with that. But at the same time you want to prevent CAM research. This would guarantee that your own approach remains the standard.

  17. Karl Withakay says:

    Fifi:
    “I suspect that most people use CAM as a “complimentary” therapy not their main choice.”

    Without some sort of scientific study or survey, we’re both just speculating, but my guess would be the following

    *The more strongly someone believes a particular form of CAM, the more likely they are to believe that it will be sufficient treatment by itself

    *A large portion (not necessarily the majority) of the population that turns to CAM for a condition will at least delay conventional medical treatment to give the CAM some time to work before resorting to “scary”or “radical” conventional therapies.

    David’s anecdotes are just that, anecdotes, and proponents of science based medicine try not to rely on anecdotes very much, but they do illustrate instances where people have bypassed or deferred conventional, science based treatment in favor of CAM and paid the consequences.

    I wonder if any CAM practitioner has ever, in the interest of full disclosure, informed a patient that the possible side effects of their particular CAM treatment are that it may have no effect, it may not work, the condition could get worse, they may suffer badly, and by the time they choose to embrace conventional treatment, it could be too late, and they could end up permanently disabled or die?

  18. Jules says:

    @ Karl: Odds are if you are a frequent visitor to this site, you either hold a low opinion of CAM already, or you are trolling.

    And if I’m neither?

    @ everyone else: Could someone please define what exactly falls under CAM? Because I think I would have a much easier time figuring out which points to argue and which to concede if I knew exactly what y’all consider CAM. Which herbal remedies count, the ones in reputed herbal guides or just the ones that haven’t been tested? How far do they need to be tested to attain “clinical usefulness”? Limited trials? Large-scale trials? Accupuncture? Moxibustion? Does yoga count if it’s used to relieve pain? Does meditation count? Do we count aid dogs/animals (animals kept to “relieve the stress” of everyday activities for people–and no, this I do NOT buy)? Are vegetarian diets part of this CAM? Vegan diets? Macrobiotic diets? Are they only part of CAM if you subscribe to them for health reasons? What about taking fish oils/omega three fatty acids?

    The flip side, I guess, is what exactly falls under “scientifically-proven” medicine? I still remember when eggs were considered “bad” for you ulcers attributed to stress–all more or less scientifically founded, based on studies about cholesterol and stomach acid secretions and low-fat was all the rage. How scientifically proven is it if, years later, it doesn’t work (antidepressants are only slightly better than placebo, or will this be overturned by another study?)? How scientifically proven is it if industries–Big Tobacco, anybody?–says it’s not? If it’s known to work, but there’s no mechanism (acetominophen), is it quackery? If it involves lasers, nano-drug-delivery devices, and the latest in pharmacolgy, can it still fall under CAM? Are leeches and maggots part of CAM, or do they fall under “scientifically proven”?

  19. Fifi says:

    Karl – Yes, I’m most definitely speculating! :-) I’m not sure if there are any studies on this but I’d be interested to see what they say. I’m certainly not saying there aren’t cases where people choose CAM over medical treatment (anecdotal evidence alert! I personally know one woman who delayed medical treatment while she pursued CAM for a year – she still went to see her oncologist during this time and eventually chose to have the operation, sadly she died from the cancer..it should be noted that she was a CAM practitioner and yoga teacher herself and had belonged to a rather cultish yoga organization – 3HO – that makes some weird medical claims for itself for most of her adult life). It’s more just a case where most of the people I know who are CAM practitioners still go to see non-CAM doctors and the vast majority of people I know who use CAM also see doctors. They really do see CAM as complimentary rather than being a replacement for scientific medicine.

  20. Fifi says:

    It’s important – I think anyway – to make a distinction between outright health fraud by charlatans off to profit from the misery and fear of others and people who are well meaning but misguided. Most of the attacks and lies about medical cancer treatments come from the Big Supplement camp, which also uses pseudoscience to promote their products. For instance http://www.beatcancer.org which sets itself up as a neutral non-profit but is actually a front for JuicePlus designed to steer people towards CAM.

  21. Dr. Gorski, “The Orange Man was the first patient to teach me that alternative medicine that is ineffective is not harmless.”

    The Orange Man was not harmed by coffee enemas or carrot juice even though beta-carotene is toxic when taken in excess. He was harmed because he did not use scientific medicine in spite of the fact that there was a large body of evidence indicating that it would have at the very least stopped the spread of his deadly disease. Smart proponents of unscientific medicine are very aware of the danger of refusing to use scientific medicine when it is indicated which is why they’ve changed the name of their business from “alt.” med. to “complementary” and why the class acts in the business, for lack of a better term and to distinguish them from the wackos, promote a combination of scientific and unscientific medicine. Think of it as one for the price of two.

    I suspect that if the regime that the Orange Man followed hadn’t been available he would have found another even if it was the original remedy, the Mother of Them All, prayer, or he would have put his head in the sand and convinced himself that he really was getting better when he wasn’t. I’ve known people who have done that and suspect that many of you do too.

    Dr. Gorski, “Patients who choose implausible or unscientific treatments in preference to proven treatments who suffer, but they are not the only ones who suffer the consequences of their choice. It’s also their families and friends, who watch them die from potentially curable diseases (all too often draining their life’s savings along the way).It’s children who lose their parents and men and women who lose their spouses.”

    Many families are seriously divided between those who believe in scientific medicine and those who believe in the unscientific kind. People suffer greatly watching helplessly as those they love hurt themselves and their children and grandchildren with dangerous snake oil. They also suffer watching loved ones die because they refuse to use scientific medicine. It is their stories that should be posted. I’d love to share the ones I’ve been told but can’t for reasons of confidentiality.

    I would love to see psychologists do in deepth studies of people who are true believers in unscientific medicine as well as those who refuse to use scientific medicine and those who hold wacky fringe beliefs which usually go hand in hand. Off the top of my head, I can’t think of anyone who has told me that they got argyria from a silver supplement who hasn’t tried many bogus cures often promoted by the same quacks who sold them the silver. When I say, But how can you believe this person? Look what his misinformation has already done to you. Aren’t you afraid that his “cure” will be even more dangerous? They say something like, Well, I’ve got to try. Some are using toxic substances. One was going to try silver nitrate but asked me first and believed me when I told her it would make her condition worse. Another tried selling me over $300/mo worth of the supplements she was using and distributing to cure herself with. (Since she was trying to sell them to the general public, I assume they were supposed to do lots of wonderful things besided cure argryia.)

  22. pec says:

    Of all the medical treatments in all cultures, from prehistoric times until now, most probably have not worked. Naturally enough, people have always tried their best to cure diseases, but understanding of life always was, and still is, limited.

    We have some advantages now because of improved surgical technology, antibiotics and anesthesia. But the current situation isn’t really all that different from earlier times. Most diseases either go away, kill the patient, or linger and cause pain or disability. A small percentage actually respond to medical intervention.

    I think most MDs would admit this is true.

    There are unethical people in every area of life, including mainstream medicine and pharmacology, as well as alternative medicine. You’re being one-sided if you think all the selfish greedy practitioners are alternative, and all the saintly selfless doctors are mainstream. You are naive if you think the drug companies are more interested in your health and happiness than in making billions.

    Medicine is and always was a rather desperate endeavor. Healers from all times and places have always known they would lose more patients than they save.

    The unspoken implication of this blog is that modern medicine has triumphed over disease and death, and that most of us owe our lives to its great success. The reality is very different. Yes many lives are saved by emergency surgery, but I would credit that more to modern technology than to medical science.

    Mainstream medicine is limited and it is no wonder that people look for alternatives. Some of the alternatives are fraudulent, but others may be promising. The bloggers here like to think they have the one true approach to healing, and we should all be perfectly satisfied with it. We should never wonder about alternatives.

    You know that it’s extremely hard to demonstrate scientifically that a treatment is safe and effective. You know that it costs a fortune to do the research, and that most of the time the results are hard to interpret. So how can you possibly draw a hard line between scientific and unscientific medicine?

    You have not found all the answers but you pretend that you have.

  23. qetzal says:

    It appears pec hasn’t changed, so I hope Dr. Hall won’t mind if I repost her comment from a previous thread:

    For new readers: Why We Are No Longer Answering Pec

    After many long and fruitless discussions with pec, the blog authors and many of the regular commenters have reluctantly decided to ignore pec’s comments. She gives us unsupported opinions, distorts our words, misrepresents our thoughts and then tries to argue with that misrepresentation, and insults us. She seems not to understand our critiques of her comments. She doesn’t discuss, she argues. She doesn’t listen, she contradicts and provokes. She has contributed nothing of substance and has been a disruptive influence, interfering with our attempts to carry on a rational discussion about science and medicine.

  24. pec says:

    But qetzal, you forgot this part:

    “it is disturbing to read comments that contradict what we already believe and what we have been told. Pec may disrupt our complacency and our feelings of superiority. This will not be tolerated at our blog.”

  25. weing says:

    I get it now. You find our comments disturbing because they contradict your beliefs in CAM and disrupt your feelings of superiority over science.

  26. Nomad says:

    David Gorski, awesome post. I had someone the other day who argued with me that alternative medicine was harmless. I managed to convince her but this story would have made it easier. I will point people to this article in future when people drop the bomb “But there is no harm in it, so why not let it continue?”

    I apologize in advance for hijacking the thread off topic.

    I have read a bunch of posts of pecs, and they seem to be illogical and ranty. I see that people here have come to the conclusion to ignore his/her posts from now on. I think despite Pec’s disruptions, you must not delete or prevent Pec’s posts. Freedom of speech and all that.

    Pec, I do want to direct this next part at you.

    Most people argue the end point/conclusion of long thought process. Arguments of this nature are normally pointless. The reason for the differing points of view is because of a smaller conclusion way back in thought process which differed, which has influenced all future conclusions. Normally it is quite hard to identify the false conclusion which somebody has built their ideas upon. Yours however, appears to be quite clear.

    You have a false understanding of what science is. You have concluded that science is something that it is not, and all your arguments make sense to you, given this premise.

    I find science to be a misnomer. I would rather call it reality-ism, because that is what it is. It is the study of reality, or at least, the laws which govern our reality.

    What we call something has a great impact upon our understanding of it. If you control the meaning of words, you control the people who use them. If organic food had been called low-yield food instead, it would not have the following it has today.

    You seem to think that scientists are dogmatic. That can not be further from the truth. A scientist will believe ANYTHING, no matter how ridiculous, as long as the evidence measures up to the claim. But everything is false until proven true. The goal of a scientist is to criticize everything to prevent non-evidence based things from being accepted. If it cannot be criticized, if the evidence is too overwhelming, if it can be studied and replicated, then it is accepted.

    Everything is false until proven true. If the alternative medicines were proven with evidence, they would not be alternative. We could, and would, accept them as science. But they can not be proven. There is a lack of evidence. Therefore they are false. If later evidence is produced that proves them right, then we will change its status. It is not true until proven false.

    I suggest you pick up some books and/or do some searching on the net about the scientific method. I believe that is where you have erred. If you think not, I suggest you familiarize yourself more with it anyway, as having more info can never be a bad thing.

  27. pec says:

    You also forgot to say:

    “Please do not read pec’s comments. We do not want you to question the status quo.”

  28. pec says:

    “You find our comments disturbing because they contradict your beliefs in CAM and disrupt your feelings of superiority over science.”

    No weing I don’t find your comments disturbing at all. I think debating and exchanging ideas is good for science. And how could I feel superior over science? Science is a method, a way of learning about nature. Scientific atheism, on the other hand, is an ideology.

  29. weing says:

    Still waiting for your review of energy healing.

  30. David Gorski says:

    The unspoken implication of this blog is that modern medicine has triumphed over disease and death, and that most of us owe our lives to its great success.

    Once again, if that’s what you think the message of this blog is, you either can’t read or can’t interpret what you read.

    The spoken (indeed outspoken) message of this blog is that scientific medicine, for all its shortcomings, provides more therapies that work far better than any other previous form of medicine, and for diseases or conditions where it does not it provides the best methodology for reliably developing over time treatments that work, especially when compared with unscientific and implausible medical claims. We make no claims that modern medicine has “triumphed over disease and death.” That’s a ludicrous straw man argument.

    The beauty of science is that it provides a methodology by which we can reliably improve upon what we have now. This is in marked contrast to the vast majority of so-called “alternative” therapies, which rely on tradition, authority, and/or religious concepts.

    Oh, and I second weing: I’m still waiting for your review of the science that convinces you that there’s something to energy healing.

  31. pec says:

    “I’m still waiting for your review of the science that convinces you that there’s something to energy healing.”

    And you won’t be disappointed.

  32. Michelle B says:

    Yes, good idea, let’s help Harriet in housecleaning (I now have copied the following in a handy place):

    For new readers: Why We Are No Longer Answering Pec

    After many long and fruitless discussions with pec, the blog authors and many of the regular commenters have reluctantly decided to ignore pec’s comments. She gives us unsupported opinions, distorts our words, misrepresents our thoughts and then tries to argue with that misrepresentation, and insults us. She seems not to understand our critiques of her comments. She doesn’t discuss, she argues. She doesn’t listen, she contradicts and provokes. She has contributed nothing of substance and has been a disruptive influence, interfering with our attempts to carry on a rational discussion about science and medicine.

  33. Fifi says:

    So back to using anecdotes as a means to illustrate and communicate with patients or people…. Anecdotes serve to personalize and put a human face on a situation, they’re effective because we tend to project ourselves into stories as a natural part of being empathetic. Obviously they appeal to both our self interest and emotions, however illness is an innately emotional experience for most people so facts and evidence tend not to get heard, let alone processed, when people are emotional (particularly if they’re afraid).

    I do understand that some people into science-based medicine see this as an unscientific approach. I think it’s quite the opposite (in fact, it’s ignoring the evidence about effective communication to dismiss the power of anecdotes). Most people aren’t doctors, most people in North America have very limited experiences with death (and many illnesses that are common elsewhere), and most people have a hard time being detached about their own health (including some doctors). It’s HIGHLY personal to them. Communicating with people in a way that personalizes the issue by sharing an anecdote to humanize the evidence – and then providing the evidence to back up the anecdote so that one isn’t presenting the anecdote AS the evidence but rather as the illustration of evidence it is – seems to not only be acting with full integrity to me but it also does what “anecdotal evidence” never does, it delineates between the illustration and the evidence rather than presenting them as the same thing. It could even get people asking about the evidence after they’ve been shown an illustration – it doesn’t devalue personal experience or anecdotes but it also shows that evidence is required for an anecdote to start to be more than just a story/illustration.

  34. David Gorski says:

    Yes, good idea, let’s help Harriet in housecleaning

    Harriet is actually on vacation. I’m definitely envious.

  35. Michelle B says:

    Good points, Fifi. Also, I have appreciated similar perspectives presented by both Rosemary and Harriet who have discussed the various valuable aspects of anecdotal info.

    Medical doctors can be perceived as being psychologically dismissive when they ignore anecdotal details given by their patients and their relatives/friends. And they give fodder to half-arsed medical practitioners like A. Weil who say that anecdotal information is a new kind of evidence on par or even better than scientific evidence.

    Decades ago, when I studied nursing (left it shortly after graduation), it was pressed on us that anyone who had a patient docket that was thick and full of many, different symptoms then those patients were most likely not to be taken seriously. The medical field has since moved on from that myopic nonsense, but some of that blinkered perspective still lingers. Many times, symptoms need to be honed and buttressed by the rich anecdotal info given by patients.

  36. Michelle B says:

    Oh my goodness, what wonderful news for Harriet. She can hobnob with gentle, funny PZ Meyers.

  37. Michelle B says:

    Oops, meant Myers.

  38. Fifi says:

    Michelle B – Talking purely about physical illness not psychological conditions, I’m not sure if I agree vis a vis the role of anecdotes from patients since they’re usually an attempt to create an illustration/story from unreliable “evidence” and there’s a tendency to fill in the gaps (and the gaps may be where the important diagnostic information actually is). Not that patients shouldn’t tell their story or it can’t reveal information about symptoms – and GPs always start out asking people to tell the story of what brings them to the clinic – but it’s worth remembering that self observation is pretty flawed (particularly if one isn’t keeping an objective log of symptoms) and people can quite easily talk themselves into experiencing symptoms they read about on the internet or offer up unintentionally misleading information. So, in may ways, the story that’s embroidered around the symptoms may actually be misleading to the physician and/or cause the patient to experience phantom symptoms to conform to their story (which has become a belief!). Once a story becomes a belief it can actually get in the way of reality or cause a person to deny aspects of reality to keep the belief going.

    That said, the way a patient talks about themselves and their symptoms, and tells their story, can provide a very rich insight into a patient’s psychology and the most effective way to communicate. There are very real and important differences in how different cultures speak about and think about pain and illness that can impact communication and cross cultural doctor/patient understanding. (Living in a bilingual province, this is the subject of a great deal of research where I live and a subject I personally find fascinating after working in a pain clinic with a very diverse range of patients including anglophones, francophones and allophones.)

  39. pec says:

    For new readers: Why We Are No Longer Answering Pec

    Because we like to feel we have the answers, and skeptics like pec can disrupt our feelings of certainty. So we request that you do not answer OR read pec’s comments. We do not want any of our new readers to experience any of the doubt or confusion some of us have experienced in trying to reconcile our ideological beliefs with some of pec’s rational arguments.

    We feel that pec is too rational, scientific and skeptical for an ideological blog such as this one. So please do your best to ignore all of pec’s comments, especially if you find them challenging to your materialist world view and the ideological perspective you learned in college or medical school.

    Thank you for your cooperation. Remember: DO NOT READ PEC’s COMMENTS.

  40. Fifi says:

    Michelle B – Oh, and I meant to add that I totally agree that Rosemary’s got some great insights and I have a great deal of respect for her understanding and perspective on the role of anecdotes in conveying a message, the disconnect that can happen between experts and laypeople (which happens in every field but is more important in a field where communication is part of the job) and the marketing strategies used by Big Supp and the sellers of magical potions. While I’m not personally interested in creating a competing propaganda (since it devalues honest communication), it’s important to understand and use the tools of effective communication. It’s quite possible to maintain the integrity of the message and do so (it just might not seem like it is because so many people use effective communication strategies to sell lies and half truths – as propaganda not as honest communication).

  41. pmoran says:

    Pec, your extreme bias against modern medicine is shown by your preparedness to dismiss it as merely conferring “some advantages now because of surgical technology, antibiotics and anesthesia.”

    If you go back a mere two centuries or so almost nothing was known about the causes or nature of any ilness, there was no such thing as public health and very little knowledge regarding the prevention of any illness. There was no meaningful classification of diseases, no ability to accurately and now often non-invasively diagnose them. There was none of the other medical knowledge and technology that is almost daily being built upon, holding out the promise of gradually finding answers for the more difficult medical problems that were always likely to be the last to be overcome.

    And, I might add, all this without even the slightest contribution from any of the “alternative” modalities that like to claim equal credibility as “kinds” of medicine.

    The glass is at least half full. What has been achieved in such a short space of time is phenomenal. It shows how ineffectual everything that went before truly was, other than a bit of herbalism. You will yourself have also noted how so-called “alternative” medicines even shamelessly borrow from hard-won conventional medical knowledge whenever they wants to construct a legitimate-sounding background for one of their treatments, and they virtually all now use the same diagnostic system.

    I agree with an occasional point you make about healthfrauder attitudes, and have to admire your persistence, but people refuse to talk to you because most of what you say is utterly and obviously ridiculous. It shows a poor grasp of anything to do with medicine.

  42. weing says:

    Not only is it obviously ridiculous but she also shows the utmost confidence in her views. Remember the 3 stooges? Only fools are positive. Are you sure? I’m positive.

  43. Michelle & Fifi, you are very kind. I was trained as a Montessori teacher and spent many years teaching pre-school. The M method is based on the belief that children learn through their senses. By the time children are 5, they have learned the language and culture of their society. They absorbed it sensorially. I’ve also taught second languages to people of all ages and did it as far as possible in a sensorial manner. For instance, I would show pictures illustrating “happy” and “sad” and say the corresponding words. Then I’d make a very angry face, smash my fist on the desk and shout the word for angry. Since I have a very soft voice, that would startle everyone. If the students were children, they’d usually be very quiet and still for a second, then laugh and say, She’s angry. I’d repeat that sentence in the language I was teaching which was, of course, the way that children learn their mother tongues. Communicating this way is very natural for me and one of the reasons that writing is so difficult. (If I smash my fist on the keyboard to show that I’m angry, no one will see it.)

    After the first TV interview I did about silver supplements, one of the tech people contacted me and said that I had to get my story out and that he would help. He said I needed a press release for him to give producers adding that he couldn’t write but that he would recognize a good one when he saw it. I tried and tried. He’d tear them up and say, No. Then one day after reading a lot of quack lit. I started mimicking the quack. When I handed it to him, he said, This is it! I laughed and said but I was just mimicking a quack. He responded, Don’t you understand that they follow a formula that they’ve followed for a hundred years because it works? That PR became my introductory page.
    http://homepages.together.net/~rjstan/rose1.html
    One silver proponent actually scolded me about the emotion it conveyed saying, “You sound just like a quack!”

    When I realized that I had to write my story for a webpage, I tried hiring someone to do it but no one would. Jounalists were afraid of the science. Scientists seemed afraid of the emotion. I soon realized that to educate anyone the first thing one had to do was catch and hold their attention. To do that, you have to combine the story telling talent of the journalist with the facts of a scientist.

    While it is absolutely essential for MDs, scientists and rational people to evaluate evidence unemotionally and as objectively as possible, even the most rational among us learns through his senses. Scientists do experiments. MDs and med. students do rounds. Stories illustrate facts graphically. Good stories well told fascinate most everyone. That is why people love and learn from literature, theater, art and cinema.

    To educate people, one has to learn to communicate with them, to speak their language, but unlike marketers people who care about the truth have to be very careful to get the facts right. That means that unlike quacks who use scare tactics to sell products, proponents of scientific medicine must use horror stores, of which there are many, to illustrate real not exaggerated or imagined dangers.

    For example, I am often asked if I don’t think that the silver in my body caused me to get breast cancer or if it isn’t the reason that I’ve never married. I say no to both because I don’t think so although some journalists try hard to get me to say yes because, I assume, they think that the story would be more powerful. However, there is a large body of lit. on argyric people that doesn’t show that we have a higher incidence of cancer than anyone else. In fact it shows that healthwise we are the same as the average Joe. No better. No worse. And I think that while I may have had far fewer opportunities to develop a relationship that would have led to marriage than many others because I was discolored, I think the main reason I’ve never married is because I’m just too independent. I am not about to consult someone as to where to live, what kind of car to buy or what to make for dinner. That is just the way that I am. However, not drawing conclusions that would seem to help what some people think of as my cause without solid evidence to support them convinces a lot of them, even some silver quacks, that I am honest. It give me credibility.

    I know it sounds like I’m preaching, but what I’m actually trying to do is share some very unusual experiences that might help some of you who are so very talented and well educated who share my goals which are to educate the public about scientific medicine and the dangers of quackery and snake oil.

  44. oderb says:

    I know anecdotes are dismissed, particularly if they contradict the medical paradigm of the moment.

    And as an anecdote (case report?) follows you may safely skip to the next post if you like.

    I was diagnosed with a bronchial carcinoid in 1985 which was resected. Several years later I had severe flushing and other manifestations of carcinoid syndrome, along with a significantly elevated 5-hiaa. I was told by my distinguished oncologist that there was nothing approaching a cure for metastatic carcinoid, but that it was possible to live for some time, as it’s not as aggressive a tumor as most.

    I chose to go to Nick Gonzalez who was just then starting practice. I became an orange man and a true believer. My 5-hiaa went back to normal and my flushing and diarrhea disappeared within several months as Dr Gonzalez was confident would happen if I was compliant with his difficult program, designed uniquely for each of his patients.

    I have been seeing Dr. Gonzalez ever since. My cancer has never returned, and I have gotten to know him quite well. I can say he is a compassionate and brilliant man, whose only goal all these years was to save lives and have his therapy tested by the medical establishment.

    As I wrote in an earlier post why would he fight so hard to have his therapy tested unless he was convinced it was effective. He has no shortage of patients and he could have simply continued treating people without going through the rigors of a controversial trial and the brickbats of the conventional medical establishment.

    He has done everything possible to complete the NIH trial but was thwarted all along the way.

    There is now a high level investigation going on regarding the ethics and more of people at Columbia and elsewhere, and if the truth is allowed to come out, those who mock him on this site and elsewhere will be eating lots of crow.

    In the meantime you may rant and rant about the horrors of spending a million dollars – out of tens of billions of dollars wasted in the failed ‘war on cancer’ over the past decades- on Gonzalez, but I know many people who went to him with dire prognoses, and who are alive and well today, however ‘implausible’ his protocol may be.

    I also know that he will not take a patient on if there is an evidence based benefit in surgery or other modalities.

  45. oderb says:

    ps. I wrote the above to point out that had I followed the best evidence in conventional medicine I would have had less than a 1% chance of being alive today.

    So you all can dismiss what I write and continue to dismiss Gonzalez but please don’t assume that only alternative medicine can harm……

  46. pmoran says:

    I, probably unlike most others here, don’t dismiss anecdotal evidence where proven remissions of established invasive cancer are concerned. But each case has to be rock-solid and there have to be enough cases to overcome the fact that unexpected things happen within conventional oncological practice, too.

    More usually we are required to give the beneift of the doubt on incomplete or inadequate information, and this applies to your story. We would need a lot more detail about your case, and ideally a biopsy and/or other unequivocal evidence of metastatic carcinoid which went away during Gonzales’ treatment. Metastatic cancer is normally easy to demonstrate.

    Even then we would need other similar cases before overcoming our skepticism as to the worth of Gonzales’ methods. We have a fair bit of information about the methods he uses If Gonzales has such cases he is free to publish them.

    I have a bit to say about these matters on my web site http://www.cancerwatcher.com

  47. David Gorski says:

    I, probably unlike most others here, don’t dismiss anecdotal evidence where proven remissions of established invasive cancer are concerned.

    Why do you say “unlike most others here”? I for one do not dismiss anecdotal evidence out of hand. If, for instance, someone could provide me with a strong, bulletproof anecdote showing that this herb or that produced long term disease-free survival (5 or 10 years) or even just survival with disease in a patient with metastatic pancreatic cancer (who would normally have a life expectancy between 3-6 months), I’d sit up and take notice. The problem is, for alternative medicine very close to all “anecdotes” that I come across are in reality testimonials, not anecdotes. They’re there to sell a product or to convince others. Whenever I take a closer look at such “anecdotes,” they almost always lack critical information or hard data to allow me make even an educated guess about causality or treatment efficacy.

    In any case, when alt-med proponents claim that we skeptics “dismiss” anecdotal evidence, it is almost always not evidence that would pass muster as a real medical anecdote. I like to think of such anecdotes as having data and reporting of sufficient rigor and detail to be published up as a case report in a peer-reviewed journal. I’ve yet to see a convincing case of a cancer cure by alt-med that meets that standard. Most such stories are just that–stories or testimonials, without sufficient detail or data to allow a scientific evaluation of the likelihood of causality.’

    Finally, I agree with you that we would need a lot more information about oderb’s case to make hazard any conclusions whatsoever. Carcinoids do occasionally undergo spontaneous remission, and patients with low volume metastatic disease can sometimes go on for quite a few years with their disease before deteriorating. Indeed, the husband of a sister of my best friend’s wife has had large volume metastatic carcinoid to the liver for several years now. He did quite well for a long time, and only over the last several months is his tumor progressing to the point where it will likely claim his life soon. In other words, carcinoids–even advanced metastatic carcinoids–can exhibit protracted and/or highly variable courses, which is why it’s very hard to make any conclusions on the basis of one case, even if more evidence shows it to be a compelling case.

  48. Fifi says:

    Dr Gorski – Thanks for pointing out the distinction between an anecdote and a testimonial – they are indeed quite different things. For me it’s not the anecdote part I ever take issue with – I don’t doubt people have the experiences they describe having, it’s the interpretations and conclusions they come to about the nature of those experiences that I find often ignore more obvious and down-to-earth potential mechanisms or underlying cause/reality of the experiences in favor of more magical (or sometimes just more narratively appealing) explanations. (When I say “narratively appealing” I mean the kinds of things that sound good in a story and fall into narrative conventions but aren’t actually how life usually works, or that are emotionally appealing but not based in reality. Or metaphors that are inaccurate so therefore misleading and so on…)

    Anecdotes can inspire a hypothesis that can be developed into a theory but until it’s tested it’s just an unproven idea that may or may not be accurate.

  49. “If Gonzalez has such cases he is free to publish them.”

    He has published them, but his accounts are inadequate to support his claims. The Congressional Office of Technology Assessment, Dr. Moran, and I have explained why, as discussed and referenced here:
    http://www.sciencebasedmedicine.org/?p=92

  50. Michelle B says:

    Fifi, I do agree with your reply to my earlier post and appreciate your delineation of certain aspects of processing anecdotal information. I regard anecdotal information as meta-information, it is not exactly the content (though that can be important also), but the way it is given, by whom, etc., that can provide a wealth of information and provide an opportunity to build trust between patient and practitioner.

  51. pmoran says:

    I am glad you agree, David, because I have had some extended arguments with those who cannot see that anecdotal material can vary in quality, and that its force can depend upon the clinical context. It may well be that they are still thinking in terms of absolute “proof”, when we are, as you say, thinking more along the lines of “now, that’s very interesting!”. This last is the response that the more sincere “alternative” claimants, those who don’t find the “persecuted genius” life plan more rewarding, actually seek from us in the first instance,

    The point is that in the shorthand of internal medical discussions we often do dismiss anecdotal material as virtually worthless with everyone knowing what we mean and understanding why.

    That is not good enough in healthfraud activity, where I fear the off-hand dismissal of treasured stories merely fuels suspicion that our judgements are being determined by impenetrable bias and/or conspiracy. We should try to explain the many vagaries of medicine that underlie our opinions. It’s not easy, I know.

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