Respectful Insolence

NOTE: I had been thinking about how to migrate my old posts from the old blog over to ScienceBlogs, and came up with an idea. Whenever “real life” intrudes on my blogging–as it has now, thanks to two different grant applications that ate up my entire weekend that prevented me from coming up with the more involved piece about science or pseudoscience analysis that I usually like to start the week off with–I’ll repost one or more of my favorite “classic posts” from the old blog. Given that there is well over a year of material there, there’s lots of stuff that I want to transfer over to ScienceBlogs and expose to a much wider audience than it got the first time around.

The following post originally appeared on December 20, 2004, believe it or not, a mere week after I started my original blog. Back then, very few people were reading; consequently, I’m guessing that the vast majority of my present readership hasn’t seen this piece before. I’d be very interested in comments now about this article and its conclusions–not to mention about any differences in writing style that have developed over a year and a half. One thing that struck me while rereading this (and fixing a few typos) is my consistency of vision; I’m quite pleased at how the blog still reflects my original vision for it a mere week after I started it.

Don’t worry, though; there will be some original material this week, just not as much my usual blogorrhea results in. I find that blogging sometimes helps me break through grant writing block. Even so, thank heaven for the archives. Come to think of it, thanks to the post scheduling feature of Movable Type, this suggests to me a solution to prevent future vacation silences. I could pick some of my favorite posts from the archives of the old blog and schedule them to appear every day while I’m gone. It’ll be perfect for when I’m away for two weeks in August. I could repost a lot of Classic Insolence then.

Now all I need is some sort of spiffy logo for these reposts like the one PZ has.

Understanding alternative medicine “testimonials” for cancer cures

No doubt you’ve seen it. The alternative medicine cancer “testimonial.” They sure can sound convincing. A chipper-looking person claims that this treatment “cured” his cancer. These testimonials almost always include some or all of these elements: First, the cancer patient is lost and suffering at the hands of “conventional” doctors, who either cannot or do not wish to understand and who cannot do anything for him. Then, when all hope seems lost, the patient discovers an alternative medicine “healer” or treatment. It is not infrequently described in quasireligious terms, like a revelation or something that brings the patient out of the darkness and into the light. Naturally, there is resistance from the patient’s doctors, family, and/or friends, who warn against it, with doctors warning of dire consequences. Often, they describe themselves as “being sent home to die.” But the patient “sees” that the treatment “works” in a way that medical science cannot and survives. Infused with fervor, the patient now wants to spread the word. Often, the patient is now selling the remedy. Perhaps you’ve seen such testimonials or heard them on the radio and thought: “Gee, this sounds great. I wonder if it works.”

The answer is: Almost certainly not.

I thought I’d discuss these alternative medicine “testimonials,” as they are one of the most visible and highly abused methods of selling alternative medical therapies. I will concentrate on breast cancer as the prototypical example, but many of the same comments apply to other diseases and treatments. In future posts, I’ll compare testimonials with anecdotes and other types of medical evidence, and try to explain minimum standards for medical evidence.

But first, some terminology: The treatment of breast cancer is divided into two phases, locoregional control (treatment of the disease in the breast and the axillary lymph nodes) and systemic control (prevention of distant metastases). Surgery and radiation therapy are modalities for local control; chemotherapy and hormonal therapy, for systemic control. Adjuvant therapy is one of these modalities administered after surgery. Adjuvant radiation therapy will improve local control and lower the rate of recurrence in the breast. Adjuvant chemotherapy and hormonal therapy will improve systemic control and decrease the rate of development of metastases, which are usually what kill patients.

The reason breast cancer testimonials sound so convincing is that most lay people don’t know a lot about the disease, particularly that surgery alone “cures” many breast cancers. Early stage cancers are cured by surgery alone more often than not, and a significant minority of patients with even large tumors and multiple positive lymph nodes can be expected to have long term survival with surgery alone.In the case of a lumpectomy, the local recurrence rate in the breast is in the 30-40% range. Radiation can reduce it to less than 10%. That means that women who forgo radiationare still more likely than not to avoid local recurrence in their breast, particularly if their tumor is small. As far as distant metastases, chemotherapy and hormonal therapy improve survival, but the effect is small in patients with early stage cancers and becomes more impressive with more advanced operable tumors. Because many breast cancer patients will do well with surgery alone, clinical trials with large numbers of patients are needed to find true treatment effects due to adjuvant therapies.

These facts help to explain breast cancer survivors who have undergone surgery but decided to forego chemotherapy and/or radiation therapy in favor of “alternative” medicine (Suzanne Somers, for instance). When such patients are in a good prognosis group, where recurrence is uncommon, or have a more advanced tumor but are lucky enough not to recur, often they attribute their survival not to the primary surgery, but rather to whatever alternative therapy they have decided to take, even though it almost certainly had nothing to do with their survival. To them, it was the alternative medicine that “saved” them, not good old-fashioned surgery. In contrast, women who opt for alternative therapy and then recur obviously don’t provide good testimonials to sell alternative medicine, which is why you almost never hear about them.

Some might ask: Why do patients fall for this? It is not a matter of intelligence. In my experience, women who pursue alternative therapy are, more often than not, intelligent and/or highly educated. Instead, they do not possess the scientific knowledge or enough critical thinking skills to separate truth from nonsense in medicine. It also seems to be a question of human nature. The diagnosis of breast cancer is devastating emotionally. Formerly self-assured women feel themselves losing control of their lives. Unfortunately, our system of medicine reinforces this feeling of loss of control, as it is all too often impersonal and even disrespectful of patients. Patients find themselves going to multiple doctor’s visits, where all too often they have to wait for hours in crowded waiting rooms to see their doctors, who then, thanks to the demands of managed care, often only spend 5 or 10 minutes with them discussing a life-threatening disease. They deal with voicemail hell trying to reach their doctor when they are having problems and endure other indignities. They often conclude from this that the system does not respect their time or them and that they are considered nothing more than a number, a disease, or money. In contrast, alternative practitioners often provide the human touch that is too often missing from modern medicine. They take the time to listen to the patient and make her feel good about herself and her decision, all too often giving erroneous information about chemotherapy and radiation therapy. When a woman makes a decision to choose alternative therapy, she often sees herself as “taking control” of her treatment from uncaring doctors whose treatments, she is told, do not treat the root cause of her disease. Understandably, she may feel liberated and back in control. In addition, many testimonials have religious overtones as well, where lost, suffering women misguided by conventional doctors and without hope find a savior (their “healer”) and/or enlightenment (the “alternative” therapy) that leads her out of the darkness and into the light of health. Her ignoring the reportedly dire warnings of doctors (unbelievers) is validated. Filled with quasireligious (or explicitly religious) fervor, they want to convert the doubters. Depending upon a woman’s background and beliefs, this religious appeal can be as powerful as the desire for regaining control.

That religion and spirituality should play such a large role in alternative medicine testimonials should not be surprising, given how much of alt-med is infused with New Age “spirituality” about living “energy flows” and connections with the earth. Consider, for instance, the concepts behind traditional Chinese medicine (TCM). These concepts are mostly based on a non-Christian religion (Taoism) particularly the emphasis of TCM on the need to correct “imbalances” between different kinds of spiritual “energies” in order to restore health. These concepts powerfully influence more of alt-med than just TCM. Sometimes, fundamentalist Christians, who would normally be very suspicious of such non-Christian concepts, manage find a way to infuse their brand of alt-med with their Christian religion (particularly faith-healing, which fits in well with alt-med spirituality) or to downplay inconvenient Eastern or pagan spirituality that underlies much of alt-med. (For examples of what I’m talking about check this and this out.)

Even doctors, who are trained to have the knowledge and critical thinking skills to know better, are not immune to falling under this spell. Case in point, Dr. Lorraine Day was Associate Professor of Orthopedic Surgery at UCSF and Chief of Orthopedic Surgery at San Francisco General Hospital in the 1980′s. She made a name for herself through dire warnings of AIDS spreading through aerosolized blood during trauma surgery (although, as far as I can tell from PubMed, she never published any studies in peer-reviewed journals to support her claims other than this interview). In the early 1990′s, she developed breast cancer. Her website and this annotated transcript of one of her informercials tell her tale. In brief, in 1993 Dr. Day underwent an excisional biopsy that showed a ~2 cm breast cancer, with tumor extending to the margins. She underwent what sounds like a re-excision lumpectomy, refusing the addition of axillary dissection, the standard of care at the time. She then started an alternative medicine regimen of diet manipulations and prayer. Nine months latter, she developed a small “bump” near her previous site, which (she claims) grew to the size of a grapefruit in only three weeks. She even posted a picture. (I have to point out that I’ve never seen a breast cancer–recurrent or primary–even a really nasty one, that looked like this or that grew that fast. Invasive breast cancers usually start ulcerating through the skin long before they stick out like that.) The mass was, according to her, partially removed surgically, after which she was “sent home to die,” suffering many other physical symptoms in the process. She “cured” herself with a regimen that included various dietary manipulations and prayer. Dr. Barrett has posted a very good analysis of Dr. Day’s story and a deconstruction of her infomercial, concluding that the second operation most likely cured her and that the grapefruit-sized mass was most likely not recurrent cancer. Given that Dr. Day has refused to release the pathology report for her last operation after having released her first pathology report and part of her second report (leaving out the part that tells whether the residual cancer had been completely excised with clear margins at her second operation), I tend to agree with Dr. Barrett’s assessment. Very likely the last pathology report shows no breast cancer (in which case the second operation cured her) or a recurrent cancer that was completely excised (in which case the third operation cured her). Of course, Dr. Day could easily prove all us doubters wrong by releasing the last pathology report, but she does not.

I mention this case not to trash Dr. Day, but rather to demonstrate that even highly trained and educated doctors, who should be able to evaluate alternative medicine therapies dispassionately, can become their biggest boosters. Even if Dr. Day could prove that she cured herself exactly as described on her website, I would still ask her why she never did a clinical trial to see if her result could be generalized to others, instead of using her story to sell Barley Green and her books and videos. That would be what a real academic surgeon would do. If her recovery was as miraculous as she claims, it would not take very many patients or very long at all to show the efficacy of her regimen. Unfortunately, Dr. Day appears to take a dim view of even honest criticism and is not above threatening her critics with the wrath of God.

Never forget that alternative medicine testimonials exist largely for one purpose: To sell a product. Most of them are advertisements, nothing more. They are no more “unbiased” than pharmaceutical advertisements for their latest, greatest drug. In fact, they are worse, because at least the pharmaceutical companies have to be able to back up their claims with science and disclose potential adverse reactions in their ads. No such requirements exist for most alternative medical treatments, mainly because most of them claim to be supplements rather than medicines. The other problem with testimonials is that they don’t rise even to the lowest level of medical evidence, the anecdotal report. Anecdotal reports in medicine require a careful documentation of symptoms, lab tests, diagnoses, exact courses of treatment, and a patient’s response to treatment. Testimonials almost never present these elements in sufficient detail to judge whether the treatment actually did anything. There’s just no way of telling truth from exaggeration or fiction.

So, in conclusion, be very skeptical of alt-med testimonials. If you look at them closely, you will often find that the patient did have significant conventional treatment (such as surgery); that the story is vague (often omitting, for example, the stage or histology of cancer or even whether the cancer was biopsy-proven); that there is no objective data, just references to other testimonials; or that the data mentioned either comes from alt-med websites selling a product rather than peer-reviewed medical journals or is a non sequitur about studies in peer-reviewed sources. Also remember that conventional medicine is not above misusing testimonials in advertisements. Treat them with the same degree of skepticism. Look for the scientific and clinical evidence, not stories of great cures, regardless of the type of testimonial. If there is one principle I hope to impart here, it is that the claims of conventional medicine and alternative medicine should be treated the same and that they should be held to the same standard of scientific and clinical evidence. I do not differentiate between the two when considering evidence, nor should you. I hope to expand upon this principle in the future.

Comments

  1. #1 DDS
    May 15, 2006

    Nice deconstruction of “testimonial medicine.” Another possibility is that some “cures” that occur after alternative treatments, could be because of the well-documented placebo effect (http://skepdic.com/placebo.html). This would be hard to tease out without a multiple arm, double blind, controlled clinical trial costing many many millions of dollars.

    D

  2. #2 in the waiting room
    May 15, 2006

    Dead men tell no tales. All the alt-med failures are never reported so the treatments efficacy can not be tested, nor are the long term effects of the treatment known. Survival curves are unknown so comparisons with standard treatments is unavailable.

    If you have questions about a treatment ask your specialist by being prepared for Dr. appointments, have all your questions written down, don’t let him leave until they are all answered. Always go with someone else who is more objective and can help with your questions, by asking follow up questions if necessary.

    Do your research through NIH, Pubmed or other reputable sites. You’ve already paid for the data and conclusions from professionals.

  3. #3 Dianne
    May 15, 2006

    two different grant applications

    My condolences.

  4. #4 Joel Sax
    May 15, 2006

    My word! With but a few changes, your article could describe many sufferers of my disease — bipolar disorder. I found myself keeping a checklist as I went, marking every similarity. So many of us want an easy cure and there’s so much snake oil out there.

    Bipolar disorder occurs in a region of the brain where survivors of a particular kind of stroke show a refusal to believe that they are impaired. I find myself fighting this every day and it is only through conscious thought and habit that I overcome this. So the denial of some is not unfathomable.

    Once our group had an osteopathic psychiatrist as a speaker. He flashed bright pictures of Kundalini points and the like on a screen and made a variety of claims which amounted to psychobabble. When I challenged him to show some studies, he said that he “wasn’t interested in anything other than his patients”. What you said about ten minute doctor visits is especially true of psychiatrists. And the patients don’t like it. This charlatan exploited that time constraint, suggesting that allopathic doctors didn’t care about patients as much as he did.

    Oh we had the testimonials, including a schizoaffective who we know to run himself into the hospital every six to nine months. I’ve learned that you can hit some people in the face with their disease a dozen times and they will keep going back to the same old ways.

  5. #5 Ebonmuse
    May 15, 2006

    Unfortunately, our system of medicine reinforces this feeling of loss of control, as it is all too often impersonal and even disrespectful of patients. Patients find themselves going to multiple doctor’s visits, where all too often they have to wait for hours in crowded waiting rooms to see their doctors, who then, thanks to the demands of managed care, often only spend 5 or 10 minutes with them discussing a life-threatening disease.

    In a sense, this is because the modern medical system is a victim of its own success. Because science-based treatments actually work, and can prove that they work, people understandably flock to them; and doctors and hospitals are duty-bound not to turn away the sick.

    By contrast, an altie practitioner can easily turn away a prospective patient whose condition seems too dire to be likely to yield a glowing testimonial. And since most altie treatments usually involve little actual work, the practitioner can take on many more patients in any case.

  6. #6 Joel Sax
    May 15, 2006

    Ebonmuse: I know what you mean. “The treatment didn’t work because you weren’t spiritually ready for it.”

  7. #7 impatientpatient
    May 15, 2006

    “The treatment didn’t work because you weren’t spiritually ready for it.”

    Been there done that. It is such a load and it is accepted in a lot of places that one would never expect. I am involved peripherally in a situation with an insurance board. It is stunning to me to read their “stats” and their testimonials and all the stuff they put out that isn’t really research but serves to promote their agenda. It apparently is impolite to call them on their methods.

    The whole Christianity co-opting eastern medicine is intriguing to me. (I really like it when someone says 1 billion Chinese can;t be wrong….I have to bite my tongue hard or the conversation could be ugly). I learned about evidence based medicine vs religious medicine oddly enough in a religious school. THe advice that stuck- use western medicine. That is why we got a brain.

    Won’t rant – thank you for posting this as it is a good source of info for me when people in my life ask why I just don’t believe in stuff.

  8. #8 epador
    May 15, 2006

    Testimonials, whether for the latest infomercial item, get rich quick schemes, cancer cures or political endorsements are useless information for making informed decisions. Period. Sadly, they are an ingrained part of the human condition.

    Yet I am unable to resist the impulse to leave you with this one anecdote regarding quack cures. Back in the early 80′s, a “scientific” trial of Laetrile (amygdalin) was promoted, if I remember correctly, from the Mayo Clinic. I had several patients who participated in the trial. One patient, with GI cancer metastatic to the liver that objectively was rapidly progressing stabilized and had about 25% regression for 6 months while on the regimen, and then he clearly progressed and was taken off study. I doubt the amygdalin treatment had much to do with this compared to stopping the previous noxious therapy and plain old luck. I’ve seen similar results in patients I stopped chemo and put on Naprosyn. Certainly he did not qualify as a technically defined partial response. But he did meet study criteria for stable disease. We did submit his data appropriately. For some reason the published data on the trial stated that they did not even have one patient with disease stabilization. When we contacted the parent organization, they had no record of receiving this patient’s data.

  9. #9 IndianCowboy
    May 16, 2006

    Good post on testimonial evidence.

    One thing though is are you skeptical of all alternative medicine claims?

    My dog may have lymphoma; due to the location, and her age, I declined both biopsy and chemo. She’s on a combination of about 5 different ‘alternative’ treatments for lymphoma. It costs 2 bucks a day altogether and she absolutely loves the stuff, so I said why the hell not. Plus I’m Indian, and half these things Grandma and mom had heard of.

    Nevertheless, I did put some research into it, and since I have scientific training, I am able to tell the difference between BS (i.e. testimonials) and actual evidence.

    It seems strange though that promising evidence from physiological and animal model studies doesn’t seem to have been pursued much.

    The animal model stuff with bee pollen and the physiological stuff with elevated NK cells in Transfer Factor (derived from colostrum and mushrooms) were enough for me to snag those things. As for what’s her faces stuff from the 1950′s with flaxseed oil and cottage cheese, a little weaker, but worth a shot anyway.

    Whether or not my dog dies of cancer, my miniature long-term study is completely useless from a scientific standpoint, but considering how many people refuse conventional treatment and opt for the alternative stuff, seems like with a little effort we could get some sort of modified case-control action going on.

    I’m not by any means defending alternative medicine here. Let’s just say I’m skeptical of alternative medicine skepticism; if they were really anxious to disprove the efficacy of alt-med, there might be a little more literature out there corroborating their assertions.

  10. #10 BronzeDog
    May 16, 2006

    One of my big peeves is the false dichotomy between “alternative” and “conventional” medicine. If it works, it works. If it doesn’t work, it doesn’t work. Unfortunately, most of the stuff that doesn’t work likes to use the “alternative” label.

  11. #11 Laura
    May 16, 2006

    I agree that many people are anti-alternative medicine which is not necessarily better because a lot of medicines where derived from nature. However, the peddlers of these “alternative” cures are who concern me. The other problem is there is no standardization so who knows what you are getting. There are “herbal” diet pills on the market and they contain Librium, Prozac and some stimulent. Is that natural? Hardly. I also read a report that an herbal erectile dysfunction drug contained Viagra. So apparently they had to add a drug to make sure the herbs worked.

    To sum it up I don’t trust them because the claims are ridiculous. If they were true disease should have been erradicated by now and I doubt even the drug lobbiests could keep it quiet.

  12. #12 epador
    May 16, 2006

    Lets just say I am skeptical of research claims that don’t match my experience, common sense or scientific rigor. That only means I look at the data closely and with a jaundiced eye. Testimonials are not even examined – they are worthless at proving anything globally, though they may demonstrate exceptions or raise eyebrows (such as my little anecdote above).

    I become especially skeptical when abstracts/executive summaries [or media releases that accompany publications] trumpet a “50% increase in survival” that refers to a change from two to four months, or say from 2.5% to 5% at five years.

    BTW IndianCowboy, try turning your argument around: If “alternative” treatment proponents were really eager to prove the efficacy of their treatments, then there would be a volume of peer-reviewed research publications using strict scientific method.

  13. #13 Cath
    May 16, 2006

    Thanks for the info. In this area there is a radio commercial for anhydrous vitamins. The cured range from Parkinson’s-no tremor and eyesight back to normal, MS diagnosed Airline stewardess who is back to work and off meds. The most heartrending is the heard disease person who now had clear arteries after taking this ‘Vibe’ after being told 73% blockage. My dad has called in to get this and wants to stop his blood thinner and other meds, because this is natural. Since I can show him this from a real MD, not radio talker he is rethinking the stoppage. Then he heard the DJ say after one of these commercials, when I lost my arm – I took ‘Vibe’ and now I’m fine. The humor helped
    Spitting nails at stupidity

  14. #14 Renee
    May 16, 2006

    From Dr. Orac: “Why do patients fall for this (alternative medicine)? It is not a matter of intelligence. In my experience, women who pursue alternative therapy are, more often than not, intelligent and/or highly educated. Instead, they do not possess the scientific knowledge or enough critical thinking skills to separate truth from nonsense in medicine.”

    I suspect that the more educated a woman is, the more likely she is to look for information about breast cancer, and the first place she’s going to look is on the Internet. Look what comes up when you Google ‘breast cancer survivor’. On the first page, I found 7 of those sites mention one form or another of alt. medicine. I didn’t have to look far before I found mention of cabbage, fermented foods, soy products, Black Cohosh, green tea, Glucosamine/Chondroitin, mistletoe, and so on. One site had info on aromatherapy. Some of the sites at least state that alt. therapies should not take the place of conventional treatments.

    And these aren’t alt.med. sites. They appear to be legitimate sites for women looking for what they can do to understand more about breast cancer, and to connect with other women who have breast cancer, and to find out what they can to do prevent a recurrence. It looks like dubious info about nutrition and suppliments is being passed around by well-meaning women on the message boards associated with these sites. (I’ve found the same type of dubious information on a message board for the peripheral nerve problem that I have.)

    I suspect that more of this alt. med. info is being passed around, again by well-meaning people, at breast cancer support groups.

    Dr. Orac, you are right; one of the reasons that women turned to these alternative therapies is that getting conventional treatment is so frustrating. To wit: I just had a screening mammogram done. The radiology technician acted like I was disturbing her day. The majority of the clerks in the mammography center were sitting in a room, chatting with each other. I made the mistake of asking one of them for copies of the films (I had already told the technician I would need them). The clerk looked at me like I was speaking Greek. I still managed to get the copies from her. And I was lucky; the mammogram didn’t show anything wrong, so I won’t have to deal with any of these people for another year.

  15. #15 in the waiting room
    May 16, 2006

    I made the mistake of asking one of them for copies of the films (I had already told the technician I would need them). The clerk looked at me like I was speaking Greek.

    I get copies of all my films, I have duplicates of everything. I periodically update my copies of my medical records. You just have to be a little aggressive and remind everyone over and over. I’ve had films lost and electronic systems not function correctly. My specialist does not have old test data handy but I do.

  16. #16 impatientpatient
    May 16, 2006

    Back in the early 80′s, a “scientific” trial of Laetrile (amygdalin) was promoted, if I remember correctly, from the Mayo Clinic

    ***********************************************

    Question- how much alternative stuff is the Mayo Clinic actually into, and if it is lots then why is it held in such high esteem????

  17. #17 IndianCowboy
    May 17, 2006

    I just want to see them given a proper clinical trial is all. Ayurvedic medicine is effective in many cases, for instance. While I don’t know of many herbal type crap that’ll actually cure disease, I know a few that are pretty effective at managing symptoms, etc. Something as basic as white tea and controlling blood sguar.

    It bothers me that just because it wasn’t made in a lab or peddled by big pharma it can’t have any merit. Considering the kind of crap we shovel into our bodies in pill form that no one has a problem prescribing, I don’t see why we can’t at least ask what else is out there.

  18. #18 BronzeDog
    May 17, 2006

    And there’s a big straw man. The source has nothing to do with it. Something is either effective or not effective. That’s all I care about, and that’s all that doctors should care about. Most probably fit that description. Some are corrupted by “Big Pharma”, but that’s no reason to conclude that they’re all corrupt.

    The difference between “Big Pharma” and “Big Altie” is that “Big Pharma” produces a lot of cures that actually work, and they have the research to prove it. “Big Altie” produces a lot of stuff that doesn’t work, and doesn’t care about research. They’re both corporate, and therefore want to make money, though, so greed does factor into the process.

    As for a clinical trial of Ayurvedic medicine, I’d be all for it, though I probably wouldn’t want my tax dollars spent on it. The results would determine whether or not it actually has some useful effect. Until a clinical trial is conducted, no conclusions can be made about its efficacy, though the mystical, magical metaphysics that seem to be tied up with it, along with the fact that it’s marketed before such trials took place give me a nice dose of negative confidence.

    As for just herbal stuff, well, that’s how a lot of medicine starts: “Big Pharma” just isolates the useful stuff in the herb and then manufactures that. The raw herb varies too much, and might even prove dangerous in its native form.

  19. #19 Laura
    May 17, 2006

    Indian Cowboy
    I am curious what has Ayurveda been proveb effective for? I’ve used skin care based on it and I wasn’t impressed. Please let me know.

    Second the most significant problem with alternative medicine is that many practitioners automatically assume that all Western medicine is bad. People believe that natural always means safer but its not true. There are plenty of toxic herbs around and without standardization the manufacturers do not have to be precise. Drugs are precise by making them synthetically they can guarantee the amount of active ingriedients. I don’t deny that natural remedies can be beneficial but that should not be marketed as to be better or safer until they can prove it.

    Orac I had a friend that followed the Macrobiotic diet after being diagnose with Stage 3 lung cancer. Any thougts on its usefullness in the treatment of cancer?

  20. #20 IndianCowboy
    May 17, 2006

    Controlling diabetes and pain relief are the ones I’m most familiar with. Since those we use within my immediate family, but there are plenty out there that people I know of swear by. Could be placebo effect, might not be, but there is some evidence for at least diabetes: here

    Bronzie…can I call you bronzie?

    You’re missing my point. A lot of these herbals and altie treatments have proven themselves to have physiological effects that could very easily translate to therapeutic effects, yet nothing is ever tried in that domain.

    Just search through pubmed for things like bee pollen, transfer factor, spirulina, certain mushrooms, colostrum, lignans, etc. All of these things have proven effects in cell cultures and many in animal models as well; some have cohort studies as well. If colostrum and certain mushrooms increase TNF-alpha (tumor necrosis factor) and their extracts have been shown to boost NK (important in viral infections and in preventing non-genetic cancer) cell counts by up to 3 times, then why was I unable to find a single study of any kind in which these were tried on people? Even in combination therapy?

    Those physiological and lab-level studies were through proper labs, not hack jobs or anything. Personally I consider that to mean that they have a good enough potential to try out in at least a cohort or case-control study.

    My favorite example is bee pollen and mouse model cancer. I think I mentioned it earlier but the National Cancer Institute actually had VERY good results with bee pollen preventing tumor formation in a model where almost 100% of them develop cancer within a year if fed on a normal diet. So it’s not like you can just handwave all of this stuff away.

    Yet what’s come since that study? Nothing. As far as I can tell after this promising result, nothing has been done, no further studies, no attempts at repetition, nothing. I mean freaking bee pollen. I spent 7 bucks on a 3 month supply for my dog at an over-priced hippy store. It’s not like it’s a hard thing to get a hold of. And it’s not hard to eat either.

    I do believe that most funding for RCT’s comes from government or Big Pharma, so saying that you want an RCT before you get government funding is kinda strange. Big Altie doesn’t bother to fund it because the kind of people that make up probably 80-90% of their market don’t care about that stuff anyway. In other words, don’t expect it to come from these businesses. You know, it’s three years until I take the Hippocratic, so maybe I’ll learn something about medical ethics I haven’t yet. But from where I stand, if there is potential, we shoudl do what’s in our power to evaluate it.

    I have the same problems with Big Altie that I do with Big Pharma. But it bothers me that herbals that consistently show lab-level benefits are not taken further. This isn’t about the businesses and their practices; the two industries operate under different marketing constraints and models. This is about medicine.

  21. #21 Laura
    May 18, 2006

    IndianCowboy,
    I did a search on Bee pollen and I did not find a lot of studies on it in regards to cancer. The study published by the National Cancer Institute is 50 years old. I did not read it but its age suggests to me that even if it showed some promise other findings showed more promise. The other studies I saw were mainly about allergies which contrary to the Altie claims I did not find much supporting it as an effective treatment for allergies. Not to mention it can cause allergic reactions on its own. So I believe it comes down to a cost benefit analysis for distributing funds for research. Other leads probably demonstrated better therapeutic effects so thats where the money was spent.

    As far as ethics I don’t think doing case studies as a physician would be ethical unless you explained all treatment options and the risks and benefits associated with them. As well as explained the evidence you have and don’t have for the bee pollen. Only then can the patient make an informed decision on what treatment is right for them. I would worry that you might influence their decision with your enthusiasm for bee pollen or other therapies like colostrum. Trying it in combination with other therapies would not definatively prove that bee pollen was effective which is why you must also use RCT’s.

    I can understand wanting to explore these therapies especially if you are familiar with them and know people they have worked for. However, I think there are other treatments that are proven to work and it is unethical to withold them. I also see more promise with new research such as the mice that have been bred to be immune to cancer. Identifying the exact gene that provides the immunity would be a major breakthrough. Just my thoughts.

  22. #22 IndianCowboy
    May 18, 2006

    Laura, the great thing about case-control studies is they’re typically done retroactively. I want to find out how people who used flax oil wiht lignans did in combatting Hodgkins versus those who used conventional therapies. So I go out and find a list of people who did each. And then I compare them. The patients made the choice and did it years ago, that’s the beauty of it, no ehtical dilemma.

    It’s not the strongest type of evidence, and it takes a lot of work (and funding), but is still a TON better than testimonials and better than physiological and/or laboratory studies as well. And it’s one we could probably do right now, given how many people go altie.

    RCT’s could be done effectively if we did combination therapy versus non-combination. A couple of european studies have done that with various herbals and found decent results, IIRC.

    So basically a patient could get typical cancer treatment. Or the patient could get typical cancer treatment along with [insert herb here mixed in their food]. If there was a difference, then the herbals have shown clinical promise. Again this could be done somewhat easily, since lots of people already get cancer and lots of people get conventional treatment, it wouldn’t be hard to do. The only incremental costs would be that associated with study personnell salaries, setup, and the herbs (which are all dirt cheap with the exception of Transfer Factor. At 2 dollars a day, it’s a tiny investment comapred to the costs of conventional cancer treatment).

    The methods are out there. The promise has been shown. But the government and conventional medicine seems very reluctant to put the two together.

  23. #23 Orac
    May 18, 2006

    Just search through pubmed for things like bee pollen, transfer factor, spirulina, certain mushrooms, colostrum, lignans, etc. All of these things have proven effects in cell cultures and many in animal models as well; some have cohort studies as well.

    Transfer factor?

    You’ve got to be kidding me. I sincerely hope you’re not referring to the “transfer factor” championed by antivaccination quack Hugh Fudenberg. If you are, my estimation of you has just fallen several notches. Fudenberg’s a completely discredited doctor who claimed “transfer factor” can cure autism. Even though he lost his license because of misconduct, somehow he manages to dispense medical advice at $750 a pop

    See:

    http://www.casewatch.org/board/med/fudenberg/1995order.shtml
    http://briandeer.com/wakefield/goat-recipe.htm

    As for “government and conventional medicine seeming very reluctant to put two and two together,” well, I suppose that’s why the government is funding NCCAM at $120+ million a year to do studies in alternative medicine.

    As for your comment about herbs, Indian Cowboy, meet Terra Sigillata. He’s devoted his professional career to studying medicines derived from herbs. There are lots of researchers out there studying the medicinal and chemopreventative effects of herbs, green tea, what have you.

  24. #24 BronzeDog
    May 19, 2006

    The medical industry is perfectly willing to study herbs and so forth.

    The quackery industry just likes to complain that science won’t indorse their 100mg (+/- 100mg) tablets of rotwort they’re selling without research. The whole “anti-herbal” thing is a fabrication that results from straw men and sometimes outright lies.

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