Respectful Insolence

“Patient-centered care.”

It’s the new buzzword in patient care. Personally, I find the term mor ethan a little Orwellian in that it can mean so many things. Basically, it’s a lot like Humpty Dumpty when he says to Alice, “When I use a word, it means just what I choose it to mean — neither more nor less.” So it is with “patient-centered care.” It’s such a wonderfully–shall we say?–flexible term. That’s why I took more than a little interest a week and a half ago when I picked up the New England Journal of Medicine and saw in the Perspective section three articles about “patient-centered” care:

As I have pointed out, the whole concept of “patient-centered” care, as worthy as it is in theory, is all too often in practice co-opted by promoters of unscientific, pseusocientific, and faith-based health care modalities to justify quackery. At the very least, it’s all too easily used as an excuse to do whatever the patient wants regardless of whether it’s science- and evidence-based or not. That’s why the fourth article on the list surprised me:

What’s the Alternative? The Worldwide Web of Integrative Medicine by Ranjana Srivastava, F.R.A.C.P.

When I saw this title, I was rather expecting apologetics about “integrative” medicine. What I got instead was an article that could have been written by yours truly were it not for the lack of “insolence,” a post about a woman who had fallen prey to a dubious test promoted at an “integrative” health fair and the devastating results of that test. That’s why I was suprised.

After all, let’s look at the record of the NEJM over the last couple of years. What is still considered to be one of the best medical journals in the world, if not the best, appears to be the victim of a conscious effort on the behalf of its editors to dethrone itself as king of medical journals through its increasing acceptance of the spin placed on medical science by those who would integrate fantasy with reality in medicine in the hope of improving medicine. Unfortunately for them reality has a way of always winning out in the end, just as the cow pie wins out in Mark’s metaphor.

For me, the first sign of major trouble appeared back in the summer of 2010, when the NEJM published what was on the surface an unremarkable study that found that tai chi appeared to have a beneficial effect on symptoms in patients with fibromyalgia. Indeed, I remember it well because its publication coincided with my trip to Chicago to give an invited talk to the Chicago Skeptics, the Women Thinking Free Foundation, and CFI-Chicago. (Hey, come to think of it, it’s been a long time since then. Maybe the skeptical crew would want to invite me out again to give a talk. But I digress…) In any case, part of what was so annoying about the article is that, as I put it, the NEJM completely and uncritically let the authors spin their results in–shall we say?–an “alternative” frame. As I pointed out at the time, let’s say that tai chi is the greatest thing since sliced bread and that it alleviates fibromyalgia pain and stiffness better than anything we’ve yet come up with. Let’s assume all of those things are true, just for the moment: what thought comes to mind to you? I know what thought comes to mind to me. What on earth is “alternative” or “complementary” about such a finding? In reality, such findings would simply indicate that certain forms of low-impact exercise could help fibromyalgia symptoms, which is not anything particularly surprising at all, given what we already know about fibromyalgia. In the interim, this NEJM article has been touted far and wide by apologists for “complementary and alternative medicine” (CAM), or, as they prefer to call it these days, “integrative medicine.”

Around about the same time, the NEJM published an even more credulous article about acupuncture in its Clinical Therapeutics section. As I described at the time, it was a clinical vignette, a little case presentation if you will, by Dr. Brian M. Berman, who has managed in a brief period of time to become the foremost popularizer of acupuncture in academic medical centers. In this vignette, the acupuncture was presented as a perfectly fine alternative for low back pain, and, as I described, Berman did some pretty creative spinning to make it seem as though evidence favored acupuncture.

Since then, there have been other examples of the once-venerable NEJM falling for what can best be described as utter nonsense. In fact, even when publishing what could be a scientifically interesting and medically useful paper on placebo effects, its editors allowed the authors, led by Ted Kaptchuk, to spin the results in a way to imply that patients can have symptomatic relief without actual reversal of the underlying physiologic derangement that caused their symptoms in the first place and that that’s OK. In this case, the disease was asthma, and the paper published showed that placebo acupuncture resulted in asthma patients feeling better but didn’t reverse the airway constriction that led patients to feel short of breath in the first place. Peter Lipson quite properly described this as “folly,” but it’s worse than that. The NEJM doubled down and published an accompanying editorial by Daniel Moerman, who is about as postmodernist as it gets and all about “meaning” in the doctor-patient interaction. I’m going to quote the same passage from his editorial now that I quoted then, in which Moerman makes an explicit plea for placebo medicine based on the concept of patient-centered care:

The authors conclude that the patient reports were “unreliable,” since they reported improvement when there was none — that is, the subjective experiences were simply wrong because they ignored the objective facts as measured by FEV1. But is this the right interpretation? It is the subjective symptoms that brought these patients to medical care in the first place. They came because they were wheezing and felt suffocated, not because they had a reduced FEV1. The fact that they felt improved even when their FEV1 had not increased begs the question, What is the more important outcome in medicine: the objective or the subjective, the doctor’s or the patient’s perception? This distinction is important, since it should direct us as to when patient-centered versus doctor-directed care should take place.

For subjective and functional conditions — for example, migraine, schizophrenia, back pain, depression, asthma, post-traumatic stress disorder, neurologic disorders such as Parkinson’s disease, inflammatory bowel disease and many other autoimmune disorders, any condition defined by symptoms, and anything idiopathic — a patient-centered approach requires that patient-preferred outcomes trump the judgment of the physician. Under these conditions, inert pills can be as useful as “real” ones; two inert pills can work better than one; colorful inert pills can work better than plain ones; and injections can work better than pills.

Which brings us to today, skipping over the recent incident where the NEJM apparently has decided that accepting dubious advertisements is acceptable. The article about the cancer quack begins with a patient who out of curiosity wanders into an “integrative” health exhibition, and this is what happens:

Out of curiosity, an impressionable woman in her 30s attends an integrative medicine exhibition; having recently had a child, she’s been sleep-deprived and wants to investigate natural remedies. At the seminar, she wins a door prize — a blood test that promises to diagnose cancer. She was considering getting a blood test anyway and seizes this opportunity for a more comprehensive workup. After all, you can’t be too careful about avoiding cancer.

Weeks later, she receives a call from an apologetic but alarmed stranger telling her she has advanced cancer.

“How do you know?” she gasps.

“Your blood test is positive for circulating tumor cells.”

“What does that mean?” she cries.

He sends her a three-page report and tells her to seek immediate help. She spends a nail-biting week awaiting an appointment with the recommended integrative health expert.

Glancing at the report, the expert declares, “You have advanced non-small-cell lung cancer. You need treatment now.” The woman is petrified: Has her teenage smoking habit come back to haunt her?

“Are you sure?” she asks.

“Absolutely. There are circulating tumor cells in your blood.”

Tears streaming down her face, the woman asks, “What now?”

Ten years ago, it was whole body scans, which, while not really advertised as “integrative” or “alternative” produced the same sorts of results: Terrified people who thought they had a horrible disease based on an “incidentaloma.” The end results were frequently multiple additional imaging tests, with the concomitant unnecessary doses of radiation, invasive procedures, and even surgeries to try to determine whether these incidentalomas were actually cancer or anything else to worry about. Because the prevalence of abnormalities on such scans is so high, the fraction of these “false alarms” was (and remains) very high. The result is that such highly sensitive tests indiscriminately applied to a population in which the likelihood of the disease being sought is low are far more likely to cause harm through false alarms that result in further tests than they are to save lives through early detection. Sure, there will be the occasional “save,” in which a potentially deadly tumor is discovered at a very small size and resected. Certainly that is what the whole body scanning businesses that sprouted up a decade ago and have now (thankfully) mostly gone away would tout in their advertisements. What they wouldn’t tell you is the cost, how many were harmed or how many were sent off on wild goose chases compared to the rare person who might have been saved by such a pickup. Indeed, it was just these sorts of claims that led me into one of my earliest forays into actually protesting dubious health claims.

After hearing the recommendation of the “integrative practitioner” that she undergo a 12-week course of intravenous vitamin C, at a cost of $6,000, the patient decided to seek out an oncologist. As I’ve pointed out time and time again, vitamin C has pretty much failed as a potential treatment for cancer, its advocacy by a Nobel Laureate notwithstanding. Basically, it requires incredibly high doses of vitamin C. There might be a very modest antitumor effect at incredibly high doses, but it’s such a long run for a short slide that it doesn’t really make sense to use, particularly given that there is evidence that vitamin C at high concentrations can interfere with convention chemotherapy treatments.

But let’s get back to the “diagnosis.” A decade ago, it was full body scans. Apparently today it’s “circulating tumor cells.” (And, of course, thermography is forever.) Remember how extensively I’ve written about how earlier detection is not always better? Overdiagnosis, detection bias that favors less aggressive cancers among screening-detected cancers, stage migration (the “Will Rogers effect”), and a number of other confounders make it difficult to determine just when and how often to use good screening tests for which we have data from very large population-based studies and clinical trials, like mammography. There remains controversy to this day regarding when and how to screen for breast cancer and even whether to screen for prostate cancer. In the meantime, trying to screen for lung cancer using CT scans has largely been a failure.

So here we have a quack–yes, a quack–looking for circulating tumor cells (CTC) in the blood of a young woman in whom there is no strong reason to suspect cancer other than a distant smoking history. Who knows if the test is valid? That is, of course, the first thing I would question, given where the company was promoting its wares and what the “integrative” practitioner recommended. But let’s for the moment assume that there were circulating tumor cells in a woman with no known tumor? Do we know what to do with such things? No! We have no idea. Measuring circulating tumor cells in the blood is a hot area of research right now, which is no doubt why “integrative” practitioners are apparently offering such tests, to capitalize on the interest. In any case, the research that is going on is primarily focused on using CTCs as prognostic markers in patients diagnosed with cancer and for following response to therapy, and, even in those situations, they have not been validated to the point where they have become standard of care. Measuring CTCs is still, at best, experimental, and there is as yet no good evidence that they will be useful as screening tools in populations not at high risk. Scientists still argue over the proper cutoff points for patients with cancer; they have no idea what to use as a cutoff measurement in healthy patients. As Max Wicha put it, not all detected cells are bad and not all bad cells are detected.

The rest of the story goes something like this. A skeptical friend of the woman suggested that she should have a scan, and she had a cousin of hers, who happened to be a physician, order a chest X-ray and CT scan (which is another excellent example of why physicians should not treat family members), which revealed “two tiny nodules, 2 mm each in diameter.” On the radiology report were those waffle words that clinicians dread reading, “Clinical correlation is recommended in the context of a smoking history” (which is another reason physicians should not order tests whose results they won’t know what to do with). After trying to get in to see a thoracic surgeon, the patient is referred to an oncologist’s office, that of Dr. Srivastava, the author of the paper. This is what happens next, as described by Dr. Srivastava. I’ll quote as liberally from the article as I think I can and still be in the bounds of fair use, because, oddly enough, even though the three articles on patient-centered care are free for the download on the NEJM site, this article on cancer quackery is not. I wonder why. In any case, on with the story:

“There’s no evidence of cancer,” I reply, seeking to reassure her.

Instead, her tone sharpens: “But I have circulating tumor cells! How can you say that?”

Incredulous, I try to explain too many things. The blood test is a long way from being validated for clinical use. It was unscrupulous even to offer it. Does it make sense to her that it was sent to an unheard-of overseas laboratory for processing? Why did no one recommend that she see an oncologist?

Rolling her eyes, she counters, “I’ve heard that I need a PET scan. And if the spots light up, this test will have been my lifesaver.”

She is right on one count: the surgeon she sees orders a PET scan, saying he needs to be sure. She loses sleep over the results — the surgeon’s appointment is 2 weeks away, and she wants to schedule the operation. Feeling sympathetic, I tell her the PET scan was clear and the two small nodules seen on the first CT have disappeared; the radiologist thinks they were probably transient foci of inflammation.

But any relief the woman feels is ephemeral. “So what does that mean?” she asks. “The PET scan is faulty?”

“There is no cancer,” I reiterate.

“But someone has seen cancer cells,” she insists.

“That was not a validated test — not something we currently use to diagnose cancer,” I protest.

Dr. Srivastava goes around and around with the patient, trying to reassure her that she does not have cancer. She largely fails. The patient insists on being followed by her because she thinks she has a tiny cancer somewhere that’s just waiting to blossom, leading Dr. Srivastava to lament, quite appropriately, “How does one ‘disprove’ a serious diagnosis once its specter has been raised by an unqualified ‘expert’?” How indeed? I’ve had the same sort of problem with women who come in with thermograms convinced that they have breast cancer and wanting a double mastectomy. Fortunately, this is not common, at least not in my practice. Very fortunately.

Dr. Srivastava then hits the nail on the head:

At one time, the worst offense one encountered was someone prescribing a few herbs to a desperate patient who’d exhausted all other means of treatment. The usual thinking was, “At this stage, it can’t do any harm.” But insidiously and alarmingly, “alternative medicine” has crept from offering last-ditch treatments to making diagnoses. As the cancer armamentarium has expanded with targeted therapies, unscrupulous practitioners of alternative therapy have devised competing offers that sound at least as impressive to the average patient, who is often marginally health-literate and eager to embrace the promise of a cure without toxicity. But the radical, completely unregulated, and often dangerous options on offer can and do cause harm.

After describing the sorts of quack treatments she’s seen her patients use, Dr. Srivastava then drives to the heart of the matter when she points out:

The practitioners never write directly to oncologists and refuse to be accountable for their actions. Unauthorized to order tests, they tell patients, “Ask your doctor to do these bloods,” or “You need to have a scan to see whether the microwaves are working.”

Alternative therapies need meet no burden of proof except a patient’s gullibility. One never hears of alternative therapies that failed: the patient merely waited too long to try them. For every patient who openly discusses such treatments, there must be many who assume the treatments aren’t worth mentioning to “traditional” oncologists. After all, to make integrative health the multibillion-dollar industry it is, people must be supporting it; those people are our patients.

Physicians would be naive to ignore the elephant in the room. Integrative medicine comes in many forms — some useful, but many dangerous. It also comes at tremendous personal and societal cost. The initial expenditure may come from patients’ pockets, but often the health care system eventually inherits the problem. Although there’s probably no way of calculating the psychological cost, for many it is high and unending.

Indeed. Maybe I’ll send Dr. Srivastava an invitation to write a post or two for SBM. She sounds like my kind of doc.

All of this brings us back to “patient-centered” care and how it relates to the article about the cancer quack. Indeed, I wonder whether the NEJM editors are actually starting to “get it” by tacking Dr. Srivastava’s article on to the end of the NEJM Perspectives section. Think back to Dr. Moerman’s definition of “patient-centered care.” Now look at what we are told in the first article, by Ruben and Tinetti:

Perhaps the most important barrier to goal-oriented care is that medicine is deeply rooted in a disease-outcome-based paradigm. Rather than asking what patients want, the culture has valued managing each disease as well as possible according to guidelines and population goals.

Ultimately, good medicine is about doing right for the patient. For patients with multiple chronic diseases, severe disability, or limited life expectancy, any accounting of how well we’re succeeding in providing care must above all consider patients’ preferred outcomes.

Dr. Bardes writes in the third article:

“Patient-centered medicine” is the newest salvo in these ancient debates. As a form of practice, it seeks to focus medical attention on the individual patient’s needs and concerns, rather than the doctor’s. As a rhetorical slogan, it stakes a position in contrast to which everything else is both doctor-centered and suspect on ethical, economic, organizational, and metaphoric grounds.

But what does that mean? Ruben and Tinetti discuss prioritizing patients’ desired outcomes and helping them to achieve these outcomes, as long as they are possible. Dr. Bardes likens the relationship between doctor and patient as one of equals, like two binary stars orbiting a common center of gravity, a double helix, whose strands circle each other, or even the caduceus, with two serpents intertwined. I have to hand it to Dr. Bardes, he’s a poetic guy, but he goes too far. While patient and physician might be equals as human beings, in terms of medical knowledge they are not. If they were, then the patient arguably would not need the physician and would be able to handle his health problems himself. A better way of looking at it would be that the physician is the expert consultant, whose skill and knowledge the patient requests, while the patient is free to accept or refuse the physician’s advice. This is not the same as the old paternalistic model, where the doctor ordered and the patient acquiesced, because the patient is actively involved in seeking advice and can reject that advice. In other words, the relationship is more equal, but not exactly equal.

Now let’s think of what extreme patient-centered care would mean in the case of the woman described by Dr. Srivastava. This woman wanted more tests either to prove she didn’t have cancer or to remove the tiny 2 mm masses that were suspected to be cancer. That was her greatest concern, and medicine could address that quite easily by doing what the patient wanted; i.e., either operating on her or otherwise treating her. As it is, Dr. Srivastava could very easily have simply taken the patient on as a regular and seen her periodically, ordering tests every so often to assuage her fears. That would have been less potentially harmful than doing additional tests or even surgery. A physician could (and some do) build up lucrative practices of just such “worried well.” Would that be patient-centered care? It would certainly be giving the patient what she wants and placing the patient’s desires over that of the physician’s.

Certainly many “integrative” practitioners have wholeheartedly embraced the concept of patient-centered care. However, they have done so more out of a desire to be able to justify placebo medicine. If it makes the patient feel better, it must be better, you know, just like the sham acupuncture that made the asthma patients feel better without reversing their underlying airway constriction. Those patients felt great and probably would continue to feel great until they turned blue. “Patient-centered care” is easy when it devolves into giving the patient what she wants without consideration of science. Real patient-centered care is hard and must contend with situations where what the patient wants is unrealistic or impossible.

Certainly a better model is the one described by Barry and Edgman-Levitan, which calls for shared decision-making:

For some decisions, there is one clearly superior path, and patient preferences play little or no role — a fractured hip needs repair, acute appendicitis necessitates surgery, and bacterial meningitis requires antibiotics. For most medical decisions, however, more than one reasonable path forward exists (including the option of doing nothing, when appropriate), and different paths entail different combinations of possible therapeutic effects and side effects. Decisions about therapy for early-stage breast cancer or prostate cancer, lipid-lowering medication for the primary prevention of coronary heart disease, and genetic and cancer screening tests are good examples. In such cases, patient involvement in decision making adds substantial value.

This is probably true, but it depends upon the patient being provided with scientifically valid information to help guide their part of the shared decision-making process. I’ve frequently referred to a concept that I like to call “misinformed consent.” Basically, that’s how practitioners of unscientific nonsense will exaggerate the benefits and minimize the risks of their recommendations, all the while exaggerating the harms and minimizing the benefits of conventional therapies. A particularly apt example is the antivaccine movement, which tries to convince people that vaccines don’t work and are very dangerous. CAM practitioners do the same thing in their vision of “patient-centered care,” but informed consent is not optional, and without informed consent patient-centered care cannot work.

I wonder whether the editors realized that they just might be making a statement when they juxtaposed Dr. Srivastava’s article about what happens when “integrative” care runs rampant with three articles describing the very “patient-centered” care that such practitioners take advantage of. It’s not possible to have real patient-centered care without real informed consent, and “integrative medicine” relies on misinformed consent.

Comments

  1. #1 me5423
    March 13, 2012

    Please write an article about:

    http://www.acancer.info/

    Thanks!

  2. #2 FilipinoMDstudent
    March 13, 2012

    Orac, kinda off-topic but related:

    Apparently, quackademic medicine appears to slowly creep into medical schools here in the Philippines. In my school, we were given one lecture on Traditional Chinese Medicine. When I declared on Facebook that I find it inappropriate, some of my classmates reacted negatively. It was also painful to realize that most of my classmates did not accept it critically and were even eager to hear the lecture.

    Our lecturer was entertaining and he was actually generally okay since he did not bash modern medicine. However, there were a lot of things he said that made me cringe, like saying that he had patients with dengue, measles, etc. who responded to acupuncture. He even mentioned a lot of other diseases and claimed that placebo effect isn’t enough to explain acupuncture because he said that even animals respond and that studies show that sham acupuncture (wrong needle points) was less effective than real acupuncture.

    It almost made me feel bad that I answered most of his questions correctly during our written examination. Instead, I just treated the lesson as a sociology topic instead of a clinical lecture. I can forgive TCM being lectured here. Once homeopaths come in, I won’t hesitate to complain to our administration. I can only hope altmed won’t continue creeping in to medical schools here.

  3. #3 Agashem
    March 13, 2012

    I agree with much of what you write, Orac. And for FilipinoMDstudent, I too face the masses of my colleagues who see acupuncture as a valuable adjunct to physiotherapy treatment. In fact, last summer, two physiotherapy students presented on the topic of the use of acupuncture in acute medicine (including acute stroke!) I was the only one in the room who said that I did not ‘believe’ in acupuncture. One of my colleagues said that it was shown to work, but ironically in the presentation that followed that statement, the student repeatedly said this study didn’t prove my premise but it looked at my premise so it must be a promising field of study. ARRRGH my blood was boiling…..

  4. #4 harold
    March 13, 2012

    Truly patient-centered care requires that that patient or their best advocate be as fully and accurately informed as possible. Deception has no possible role in valid patient-centered care.

    The old paternalistic model certainly fails that test, but so does a model in which placebos are used deceptively, non-contributory or misleading tests are routinely recommended, or patient requests for useless tests or therapies are granted without first explaining why they are useless.

    In short, patient-centered care is a great idea, as long as deception, pandering, or failure to fully inform are not mislabeled as “patient centered” techniques.

  5. #5 Calli Arcale
    March 13, 2012

    Patient-centered care . . . I suppose it’s just a mercy they didn’t call it synergistic as well. Buzzword bingo has gained a new entry.

    I would contend that the sort of “patient-centered care” that the woman was getting before seeing Dr Srivastava wasn’t really patient-centered. It certainly wasn’t holistic, not in the actual definition of the word (as compared to the way most “holistic” practitioners abuse the word). It was patient-ego centered, perhaps. Patient went ahead with free test; test showed something scary that the practitioner wasn’t really qualified to interpret; patient understandably began wanting all sorts of additional care to deal with it. But you cannot ethically do harm to a patient just because they want you to, and surgically removing lumps that aren’t cancer can definitely cause harm.

    With medical corporations adopting the patient-centered care mantra, I suspect it won’t be long before they start to see the folly of it. In the beginning, it looks great for profits, because they get to charge money for all of these extra tests and procedures. But then they become known as a haven for the addicts, the hypochondriacs, the Munchausen’s patients, and, worse, those with Munchausen’s by proxy. Not only will their reputation go into the toilet, but they’ll start losing staff (doctors and nurses don’t usually like working with these people), rates of complications will increase, and sooner or later the lawsuits will start coming in. And they won’t be shielded by being “alternative”; they’re the sort of people who should know better, and so they will get in a lot of trouble. Insurers will begin asking awkward questions. Sooner or later, state medical boards will also.

    Care should be centered around the patient, of course. This has always been true. But it needs to take into consideration the patient’s long-term goals, not just their immediate request, and that’s what is forgotten by the “patient-centered care” advocates. Yes, it’s good to improve the subjective measures of asthma — but if you don’t improve the objective ones as well, the patient could die, and I’m pretty sure that’s not something they’d want.

    I got my car’s oil changed not too long ago. The shop put the little sticker in the window saying when to next change the oil, and they did a whole ton of other work too. (There was a recall affecting some major components, I wanted new tires, and I needed new brakes.) I was very happy after driving out of there; it felt like a new car, mostly because of the new rack-and-pinion in the steering; it was as tight as a new car and felt great. But it wasn’t great; somehow, amidst all the work going on, the actual oil change had been forgotten. This weekend, my car stalled, and would not keep running when restarted. I took it to the nearest shop, one I have not used before but which had good recommendations. They quickly found the problem: the oil had *not* been changed. It wasn’t just leaking; it was actually quite dirty, and the filter clearly hadn’t been changed either. My car’s engine is pretty sensitive to oil levels and quality, so that was the problem. A simple oil change solved the problem.

    So the first shop had provided good, customer-centered care. I had left very satisfied. But the work had not been completed per orders, and unbeknownst to me, my car was having problems that would only get worse. I can only hope the engine hasn’t suffered any damage from this. How the customer/patient feels very definitely is important. But that’s pretty worthless if you don’t actually address the problem they had in the first place.

  6. #6 Eric Lund
    March 13, 2012

    One of my colleagues said that [acupuncture] was shown to work

    If your definition of “work” is “a patient will give you money in order to perform this procedure on him,” then yes, acupuncture does frequently work. However, if you use “work” in a theraputic sense (which is what I think you and your colleague meant), then no, it has not been shown to be more effective than a placebo. I’m sure that because of the placebo effect acupuncture will sometimes seem to work. Ditto homeopathy and most other forms of woo, whence the testimonials for such treatments. But you would get those apparent successes no matter where you stuck in the needles, or what substance you subjected to 30C dilution.

  7. #7 Denice Walter
    March 13, 2012

    Here’s the thing: while many CAM/ alt med advocates talk about “equality” between patient and provider, do they really deliver that or is it just another foot-in-the-door technique aimed at patients who feel somehow slighted by the “in-equality” between doctor and patient ?

    Transitioning into alt med usually involves re-education and guidance in the arcane principles of whatever is being promoted: dietary regimes are introduced because they “inform” us that SBM has no concern with nutrition ( untrue) or “prevention” ( untrue). So how is that ‘discourse amongst equals’? Clients may be told to discard the “myths” foisted upon them by the “establishment” and replace them with (usually) far-fetched extreme measures ( e..g. vegan, raw, organic, paleo, blood-typed diet, dosha-based etc) not SB because the powers-that-be ( medical associations, dieticians**) make use of tainted studies. This doesn’t sound like a conversation between equals.

    Other modalities necessitate instruction into TCM, homeopathy, herbalism or supplementophilia – where the acolyte needs re-think basic science. If your thought-processes are being re-modelled to mimic your instructor, it’s not equality.

    ** A war is brewing about legislation to restrict nutritionists’ ability to counsel people about diet ( Hint: in woo-ville, dieticians are the bad guys)

  8. #8 prn
    March 13, 2012

    “integrative medicine” relies on misinformed consent
    Often “regular medicine” does too.

    integrative practitioner” that she undergo a 12-week course of intravenous vitamin C, at a cost of $6,000,
    that’s very high for a scheduled IV series

    that there is evidence that vitamin C at high concentrations can interfere with convention chemotherapy treatments
    there is limited evidence that vitamin C can be an important supportive element for pain, infection, tissue repair, histamine neutralization (VEGF reduction) and suppress 5FU side effects.

    There is preliminary evidence that vitamin C can be used additively with adjuvants. The combination of 5FU, vitamin C and adjuvants is in the experimental realm perhaps best addressed by chemosensitivty testing of viable surgical tissues, sometimes with surprising results.

    The permanent bias on vitamin C is so great, even mighty Orac fails on some of the basic chemistry questions. It’s extremely difficult to get a clear eyed view of this subject.

  9. #9 harold
    March 13, 2012

    prn –

    I notice that your comment addresses the status of vitamin C as a therapeutic tool, which is an interesting side issue, but does not deal with the actual point.

    According to the story, a patient was falsely told that she had cancer, based on an inappropriate test that was performed in a laboratory beyond the reach of US regulations. She was charged cash for the test, of course, and misled about its accuracy.

    An attempt was then made to entice her to pay a great deal of money for IV treatments. (I subjectively perceive that the original test may have been a hook for selling the subsequent expensive treatment.) IV’s are a mild risk factor for infection and other complications and should not be used unless there is at least some valid medical reason.

    Clearly, whether or not vitamin C has therapeutic potential in cancer or any other condition is not relevant here, since the patient didn’t have cancer in the first place and therefore no cancer therapy of any type was indicated.

    How do you respond to this particular story?

    “integrative medicine” relies on misinformed consent

    Often “regular medicine” does too.

    However, in science based medicine, deliberate failure to fully inform the patient or their best advocate is suboptimal at best and malpractice at worst.

  10. #10 prn
    March 13, 2012

    harold@8
    Orac detoured to expend a solid paragraph taking another swipe at vitamin C with his links that contain generally overlooked science issues.
    ….
    Also the failure to inform can take place at different levels. Remember Vioxx? Black boxes and pines boxes often go together.

  11. #11 prn
    March 13, 2012

    harold@8
    Orac detoured to expend a solid paragraph taking another swipe at vitamin C with his links that contain generally overlooked science issues.
    ….
    Also the failure to inform can take place at different levels. Remember Vioxx? Black boxes and pines boxes often go together.

  12. #12 sophia8
    March 13, 2012

    Orac, the poster at #1 has been spamming various blogs on Scienceblogs.com for the last few days. Any way you could block him?

  13. #13 palindrom
    March 13, 2012

    sophia8 @11 — Or, maybe Orac could write the article.

    I took a quick look at that site, and while I’m not professionally qualified to judge it on its merits, it certainly looked like something Orac would rip to shreds and stomp on for a while. This might not be what they had in mind, but it may be that any attention is better than none.

  14. #14 Krebiozen
    March 13, 2012

    prn,

    Remember Vioxx?

    Do you have any evidence that the “combination of 5FU, vitamin C and adjuvants” or indeed megadoses of IV vitamin C are any safer than Vioxx?

  15. #15 jre
    March 13, 2012

    The NEJM article’s full text is, of course, behind the paywall.
    One notes with hope, however, that Dr. Srivavasta is not only prolific, but also one of those public-spirited folks who posts her papers:

    http://www.ranjanasrivastava.com/articles/

    Perhaps, when NEJM loosens its grip, this article will be posted there, too.

  16. #16 Agashem
    March 13, 2012

    @Eric Lund: I certainly agree that acupuncture does not work in any way other than on the wallet (and I suppose the mind, but not in the way most people think). I was surprised at the particular therapist who was of the opinion that acupuncture worked as she is very bright and knowledgable in her particular area of physiotherapy. However, as has been stated repeatedly on this forum, education is no guarantee of knowledge.

  17. #17 MarkH
    March 13, 2012

    This article is a positive sign. I might have to cite it when Andrew Weil comes to my university next month. Sigh.

  18. #18 iskur
    March 13, 2012

    evet patient bizde patend denilor istanbul bizler bu işi pek hafife oluyoru. sizinolarlarda çok önelmi bir gelişme sayıloryor. oluşumlar panetne çok önem vermiyorlar, sadece ürünleri kopyalayarak iş yapıyırlor. yani anlaycağınız paralara kıyamıyorlar. iş güvenliği sağlamuyoırlar. sizdelr işkur iş ilanları sayfansında iş bulun bence en azından güvenceli olursunuz. diğeer sistemlere pek güven olmuyor..

  19. #19 Agashem
    March 13, 2012

    Babel fish anyone?

  20. #20 Composer99
    March 13, 2012

    prn:

    That Vioxx was pulled from the market can be credited to good science (which uncovered the adverse effects), to Merck, who voluntarily withdrew the product in 2004, and to regulations which required the kind of clinical & post-licensure research which uncovered the elevated risks of cardiovascular events in the first place.

    In the absence of regulation requiring clinical research and post-licensure evaluation, do you think that these adverse effects would have been discovered and Vioxx pulled from the market?

    In the meantime, perhaps you can point us to some “alternative” medicine which has been withdrawn for being ineffective or dangerous – or indeed perhaps you can point us to some “alternative” medicine which is subject to anywhere near the kind of scientific and regulatory scrutiny Vioxx was subject to.

  21. #21 adelady
    March 13, 2012

    And from the bosom of the venerable mother of argumentum ad populum, read the homeopathy representative’s response to this report.
    http://www.theage.com.au/opinion/political-news/alternative-medicine-crackdown-20120313-1uyiw.html

  22. #22 prn
    March 13, 2012

    Krebiozen@14
    Vioxx was an example of another level of failure to inform inside the “regular medicine” industry. Rather than anyone point the finger at doctors.

    Obviously 5FU is an inherently dangerous substance, with something like a fraction of 1% rapid mortality due to genetic DPD inhibition. Your attempt to compare such disparate apples and oranges, chemotherapy vs pain reliever, doesn’t sound too neutral.

    Composer99 @20
    Merck, who voluntarily withdrew the product in 2004,
    Belatedly, after embarrassing public disclosures and unnecessary deaths.

    …indeed megadoses of IV vitamin C are any safer than Vioxx?
    I’ve never heard of anyone main lining 200-300 grams of Vioxx in any day, much less, per day.
    ………..
    No “regular here seems to respond on how fundamentally challenged they are on the vitamin C test designs’ shortcomings or analysis.

  23. #23 Composer99
    March 13, 2012

    prn:

    Without the requirement to perform clinical research & post-licensure surveillance, there would have been no embarrassing public disclosures (because there would have been nothing, as far as anyone knew, to disclose) and no visibility of unnecessary deaths. I explained this already. Did you not understand it the first time?

    Maybe you missed the substantial questions in my comment, since you managed not to answer or even acknowledge them. So I’ll repeat:

    In the absence of regulation requiring clinical research and post-licensure evaluation, do you think that these adverse effects would have been discovered and Vioxx pulled from the market?

    In the meantime, perhaps you can point us to some “alternative” medicine which has been withdrawn for being ineffective or dangerous – or indeed perhaps you can point us to some “alternative” medicine which is subject to anywhere near the kind of scientific and regulatory scrutiny Vioxx was subject to.

  24. #24 Navigator
    March 14, 2012

    Oh, where to start? I have seen these mass mailings that promise to find disease. And yes, the people who perform the studies provide their “results” and then cannot really interpret them. “Go see your doctor, you might die!” I have yet to see anything significant in their findings.
    If you really want to go into Patient-Centered Care, or as it was formerly known, Medical Home, well yes, the “worried well” want to be seen frequently. At our clinic, most of these folks are triaged by the Registered Nurse. And it’s been working pretty well. The patient is able to see the nurse, who listens to their complaint, checks the vitals, and then gives some medical advice. Often the patient just wants someone to listen to their story. If the nurse identifies an objective concern, he/she consults with the provider. In any case, the patient most usually leaves the clinic satisfied that their concern/s were heard.

  25. #25 flip
    March 14, 2012

    It seems to me that ‘patient-centred care’ is just a way to keep the patient scared all the time. If you’re constantly giving in to the patient’s initial fears, then it is positive reinforcement of those fears. It’s enabling.

    @5 Calli Arcale

    This was my problem recently with some doctors. Most of them were more interested in satisfying ‘patient-centred’ goals, rather than actually treating my problem long-term. It’s very frustrating to discover that your local doctors do that; I had to end up in the ER for anyone to notice it wasn’t a mild issue and their short-term treatments weren’t working. Thankfully seeing a specialist solved this and I managed to get some proper care. It annoys me greatly that doctors are doing this now – my original family doctor would always make sure I left with a treatment plan for why I came in and not the extraneous stuff that might make me ‘feel better’ but had no impact on my illness.

  26. #26 Militant Agnostic
    March 14, 2012

    Calli Arcale @5
    If they told you you needed new brakes, odds are you didn’t. My son used to be a mechanic and he said unnecessary brake work was common. One of my gearhead friends took his car in for a free umpteen point inspection after he installed new brake pads and was told his brake pads needed to be replaced. Brake work is an easy sell because a safety issue just as “wellness” and “prevention” are an easy sell for woo merchants.

  27. #27 Anton P. Nym
    March 14, 2012

    @prn: For every “vioxx”, there are ten “laetriles”. Alt-med advocates really shouldn’t try to compete on the basis of patient safety, and the Pharma Shill Gambit looks particularly shady in that light.

    — Steve

  28. #28 prn
    March 14, 2012

    AP Nym@27
    For every “vioxx”, there are ten “laetriles”
    Lots of black boxed drugs, sounds dubious to me. Got a source?

  29. #29 prn
    March 14, 2012

    Maybe you missed the substantial questions in my comment, since you managed not to answer or even acknowledge them.
    Loaded questions lovingly packed by strawmen, deserve an Insolent answer, n’est-ce pas? (@22)

    I happen to have dinner with a retired judge whose whose wife in good health suddenly stroked and died the next day while on Vioxx.
    Do I think Vioxx would have been eventually connected? Yes
    Do I think they would have pulled it off the market? Not soon, perhaps eventually.

    Vioxx became scrutinized so heavily because Merck resisted so strongly in the face of adverse outcomes. Kind of like the tobacco industry.

    Some “alternative” products have been pulled. I don’t recall any that had the bankroll of Vioxx for a protracted legal fight.

  30. #30 Vicki
    March 14, 2012

    flip: The trick is to know whether you’re there for one priority, or for two or more things that can all be addressed. The last time I saw my doctor, she listened to what I was there for, addressed that, and then pushed me to get a mammogram and did a manual breast exam (my request, once she raised the subject). My DPT booster back in 2009 was one of three or four things I had on my mind at that visit. Without annual physicals, that stuff has to be squeezed in somewhere else, and relatively few people will spend the copay and the time just for a vaccine booster.

  31. #31 Krebiozen
    March 14, 2012

    prn,

    Do I think Vioxx would have been eventually connected? Yes

    Vioxx was associated with a 24% increase in heart attacks in a large Canadian study of elderly patients (PMID:15809459). That equates to 2.2 extra heart attacks in 1000 patients taking a low dose of Vioxx for a year. I don’t see how that sort of increase in risk could possibly have been noticed without large studies. It means that 4 out of 5 heart attacks in those taking a low dose of Vioxx would have happened without the drug. Even with high doses the increased risk was only 73%. That sounds like a lot, but it still means that 4 out of 7 hearts attacks would have happened without the drug.

    I’m not defending Vioxx, just pointing out that without large clinical trials we don’t know whether a drug, a herb, a supplement or a coffee enema might be considerably more dangerous than Vioxx. I don’t think we would notice even a doubling of the risk of a cardiovascular event in elderly people, for example, without a large clinical trial.

  32. #32 prn
    March 14, 2012

    I think unusual cases can introduce suspicion albeit we all know cardiovascular events are hard to predict, and can be surprising. It is the insurance company file analyses or other similar institutional records that I expect these things to get caught outside of clinical trials.

  33. #33 Calli Arcale
    March 14, 2012

    Militant Agnostic:

    If they told you you needed new brakes, odds are you didn’t.

    This is a very reputable shop, with a reputation for lower prices and for striving to minimize the amount of extra work required to do a job. Also, these were the rear brakes, and I’d had them on for nearly 10 years, and over 100,000 miles. ;-) If they had wanted to soak me on unnecessary brake replacements, they would’ve started a long time before.

    But that’s part of why it was so shocking. I’ve never had problems with this shop before. One problem I’d had with my car, they solved for less money and less time than another shop had spent failing to solve it. They’ve won many awards for their service. But even the best can screw up, obviously. And just because you FEEL like a good job was done, doesn’t mean a good job WAS done. And although you need to trust them, that still doesn’t mean you’ll get a good result.

  34. #34 Beamup
    March 14, 2012

    When said records are unlikely to include the fact that Vioxx (to extend the example) was being used? And even if they do, it’s just one point in an overwhelming sea of unrelated factoids?

    The level of analysis needed to detect such a thing, even if the data were available, is mind-boggling. You’re assuming massive retrospective case/control studies for thousands of conditions and millions of possible exposures – when doing that for ONE example is a major research project.

    And that’s completely leaving aside the fact that the burden of demonstrating a product is safe is being shifted from the people profiting from it, to the general public.

  35. #35 MI Dawn
    March 14, 2012

    @prn: OK. Vioxx was pulled off the market. Now, PLEASE give us ONE supplement, alt med treatment, etc that was pulled off the market BY THE MANUFACTURER as readily as Vioxx (and no, I am not saying Merck was happy to pull the drug. But show me ANY alt-med maker who has pulled their drug. ANYONE.) All those alt meds- surely you can come up with ONE that was pulled like Vioxx was, without too much trouble. Of course, Vioxx, and other medications, are followed post release so increased risk can be seen. No one follows the alt med crowd, so they get away scot free…

    Oh, and historically, oral megadoses of Vitamin C were used to induce early pregnancy abortions, and people who take megadoses then stop can develop scurvy on normal doses. And I don’t want to imagine what it would do to a vein when infused at high doses.

  36. #36 JGC
    March 14, 2012

    And that’s completely leaving aside the fact that the burden of demonstrating a product is safe is being shifted from the people profiting from it, to the general public.

    The general public, rather than the companies seeking FDA approval to market a new drug, now designs, hires study directors and enrolls subjects for, contracts with clinical trial sites, etc., and conducts mandatory Phase I clinical trials? Really?

    Or did you simply mean that post-approval surveillance is working exactly as designed, identifying safety issues that could not otherwise have been assessed due to their extremely low incidence rate?

  37. #37 jane
    March 14, 2012

    I know there is no point in discussing here the evidence in favor of acupuncture, but FYI, Daniel Moerman is neither a physician nor any kind of postmodernist whatsoever. He is a well-known senior anthropologist with expertise in “placebo effects,” which he prefers to term “meaning responses” because they are heavily influenced by culture. (Read his book for a summary of the voluminous evidence to that effect.)

    Treating his quoted point as an opportunity for sneering only emphasizes your disconnect with the average person’s values (I do not choose to use the demeaning words “patient” or “consumer” to describe those suffering from ordinary human discomforts). If I have a backache, I don’t want to have molecular markers associated with backache to be reduced; I want the pain to be reduced. If, as has been shown for several conditions, acupuncture does this for me better and more safely than pills, I would not care if the effect were 100% “placebo.” That is how most people feel; if you think it’s wrong to feel that way, that’s a values claim, not a science claim.

  38. #38 Calli Arcale
    March 14, 2012

    Huh. This has got to be the first time I’ve heard someone describe the word “patient” as “demeaning”.

    It is true that most people don’t really care about anything beyond “make me better”. The details aren’t important to them. But that’s not to say the details aren’t important at all; most people expect their doctors to be dealing with the details, not ignoring them on the basis that “well, they’re not complaining anymore”. It’s a very short distance from acupuncture for uncomplicated backache (which normally resolves on its own anyway) to acupuncture for asthma, and then that sort of attitude becomes actively dangerous.

    Salmeterol carries warnings because it is associated with an increased risk of death due to asthma. Now, salmeterol is an asthma drug — it’s a brochcodialator, and one of the primary ingredients in Advair. (The other one in Advair is a corticosteroid.) It’s very long acting, and doesn’t produce the unpleasant side effects of albuterol. This makes it popular — but there’s a dark side. It’s safer than albuterol EXCEPT that it’s so good at making patients feel better that they can’t tell they’re still experiencing substantial inflammation in their lungs. In some cases, this ends up exceeding what the salmeterol can deal with, and they die.

    So. The patient still doesn’t care about markers, usually; most of them just want to be better and leave the details to the doctor. If the doctor ignores the details as well simply because the patient is, then the doctor is failing in his responsibility.

  39. #39 flip
    March 14, 2012

    @30 Vicki

    Well I went for one problem only. (It’s rather long and complicated, but I just happened to have my usual doctor retire in the midst of things. So the new doctors may have had other issues in mind, such as lifestyle changes. Only a couple mentioned them briefly, and in one case only because my mother – who also saw that particular doctor – mentioned them in her own separate session as her own concerns about me; and that doctor then tried to discuss them with me) One other issue was looked into, but it was related to my main problem, which was severe asthma – a sleep study to see if I had apnea, which my father has and which obviously might have had something to do with not breathing ;)

    However, I’ve also been sent on wild goose chases, getting tests done for things that weren’t related to my asthma at all (I asked). Normally I wouldn’t mind, but when you can’t breathe other things aren’t really as important as getting a good treatment for your main problem. In other cases, I was informed by the specialist that I had been put on a child’s dosage (I’m 30) of an inhaler; and many of the original doctors I went through seemed to ignore the fact that no medications had been working for well over a year and acted as if if I just continued with them it would be resolved. This is despite obvious wheezing and constant coughing even on their meds.

    Suffice to say that my impression of those doctors, mostly from the same clinic, was that they were more concerned with temporary treatment than a long-term plan, and even less interest in finding out what the cause was. I had yes, suggested a one thing that I would have been interested in getting tested for, but it made sense: an allergy test since I’ve never had one. I still haven’t, the doctor talked me out of it (or rather, made it sound too tricky to use as there are just *so* many things one can test for and how do you know what ones to test… which never made any sense to me).

    In my case, I was disappointed not because they weren’t humouring me, but because no one was interested in doing any kind of investigation at all outside of a pertussis test and blood test. I waited several months before seeing a doctor at all actually thinking it would resolve by itself, and well over a year until I had a specialist who prescribed a medication that worked. (The second time I asked for something: 12 months of to-ing and fro-ing and I decided maybe a specialist would be more use than various clinic drs) In all that, ‘patient-centred care’ revolved around assuming that I was complaining about a minor and short-lived issue that would resolve in a few weeks time, despite my constant retelling of when the whole thing started and how bad my breathing was.

    At least with the specialist I now have someone who recommends useful tests/treatments, and actually accepts that I’m not there complaining for the sake of it or asking for tests because I’ve read about them on the net. I really don’t mind discussing other medical issues, but honestly when you can barely breathe, none of that matters. Talk to me about it all when I can avoid coughing for more than five minutes…

    (I’ll also add that I’ve been meaning to update my vaccinations and ask them about other things – however none of the new doctors broached them either, and when I did bring them up, didn’t make any moves to do anything about it. – My original GP was on the verge of organising vaccinations when he retired – Considering I was a new patient, you’d think they’d be curious to know what my medical history is and/or what things I should be looking out for. I’d really love to find a GP that actually takes the time to go through all of this, because I know I’ve just been unfortunate in finding a clinic where the doctors are disinterested)

    … Sorry, I’m not sure if I went off the original point there or not… Anyway, my little experience has taught me to look long and hard for a good doctor, and hopefully I will be able to do that now that needing one isn’t so urgent.

  40. #40 flip
    March 14, 2012

    @37 Jane

    Why would an anthropologist be considered an expert on medical treatments and/or placebo effects?

    If, as has been shown for several conditions, acupuncture does this for me better and more safely than pills, I would not care if the effect were 100% “placebo.”

    No, if it had been shown to have efficacy greater than pills, then it would also not be a placebo. Therefore, yes, it is a science-based statement.

  41. #41 Phoenix Woman
    March 15, 2012

    Asking the questions again because prn still hasn’t answered them:

    In the absence of regulation requiring clinical research and post-licensure evaluation, do you think that these adverse effects would have been discovered and Vioxx pulled from the market?

    In the meantime, perhaps you can point us to some “alternative” medicine which has been withdrawn for being ineffective or dangerous – or indeed perhaps you can point us to some “alternative” medicine which is subject to anywhere near the kind of scientific and regulatory scrutiny Vioxx was subject to.

    If prn were honest, she’d have to answer “no” and “no”.

    Just from the top of my head, I can think of three woo-beloved treatments that woo-susceptible folks still use despite their having been shown to be useless at best and dangerous at worst: Colloidal silver, laetrile, ear candling. (Yes, kiddies, laetrile — aka “Vitamin B17″ as its promoters have relabeled it — is still being marketed to the unwary and desperate. Just run the word “laetrile” through the search engine of your choice.)

  42. #42 Phoenix Woman
    March 15, 2012

    Say, Orac — If you really are getting bored with the whole antivax scammery, you should revisit laetrile for a spell. Talk about scams!

    For example: The “father” of laetrile, Ernst T. Krebs, Jr., encouraged people to refer to him as “Dr. Krebs”, despite his flunking out of a homeopathic school.

    Seriously:

    Ernst T. Krebs, Jr.—Laetrile’s “father”—has often been referred to as “Dr. Krebs” although he has no accredited doctoral degree. He attended Hahnemann Medical College in Philadelphia from 1938 to 1941, but was expelled after repeating his freshman year and failing his sophomore year [3]. After taking courses in five different colleges and achieving low or failing grades in his science courses, he finally received a bachelor of arts degree from the University of Illinois in 1942 [3]. In 1973, after giving a 1-hour lecture on Laetrile, he obtained a “Doctor of Science” degree from American Christian College, a small, now-defunct Bible college in Tulsa, Oklahoma. The school, founded by evangelist Billy James Hargis, had no science department and lacked authority from Oklahoma to grant any doctoral degrees.

    “Hahnemann Medical College”, at the time Krebs got kicked out of it, was a full-on homeopathic institution (it’s long since been absorbed into Drexel and as far as I see on its website it looks to have been de-wooed).

    How much of a schmuck does one have to be to get thrown out of a homeopathic college? Really now.

  43. #43 Antiquated Tory
    March 15, 2012

    Reading Jane’s comment makes me despair for medical anthropology, my major back in the day. Even then I had a professor who threw around terms like “allopathy” and at times seemed to think that cultural relativism extended to physical reality. My other professors were pretty reality grounded, however, and even he wasn’t half as bad as some of the stuff I read now.

  44. #44 Vicki
    March 15, 2012

    flip–

    Thanks for clarifying, and no, I don’t think you went off course at all. Absolutely if you walk in with a real issue, that needs to be addressed first. I was thinking either of when I have walked in with two or three issues, none of them life-threatening, and none of them needing a lot of time. At that point I can reasonably say “my knee is bothering me, and I want a tetanus booster.” And if my doctor notices that this is the third time I’ve walked in complaining about joint pain, she may think “this knee thing and that elbow thing might be connected.” So last week she not only sent me home with a prescription, she drew blood to check on another possibility. (Low-probability, and it turned out I didn’t have it, but worth checking on.)

    As you say, it’s worth a lot to have a good doctor. So I keep going to this one, even though it’s slightly inconvenient and my husband gave up on her because the office staff she had at the time were annoyingly bad. (She has hired some new, better people since.)

  45. #45 prn
    March 16, 2012

    you can point us to some “alternative” medicine which has been withdrawn for being ineffective or dangerous
    Folks, I don’t have an omniscient knowledge of various alternative medicine – the “true anti-woo believers” here clearly dedicate a lot more time to less worthwhile things that I have little interest in. So I am not going to slave over irrelevant details for the empty rhetoric of the lazy, to whole subjects that I am not interested in. Do your own g-d-ed homework. What I know is that many valuable treatments have been slandered, attacked without merit or misrepresented and left unavailable in the US.

    Here, I see casual acceptance of negative claims of dubious origin, like “C da abortifacient” traces from an old Soviet, likely unreliable, source that I suspect reflects a much different chemistry. Again basic chemistry issues that should embarrass all the “skeptic experts” C prattle for the past several decades. Even mighty Orac, much less Dktr Pimpler.

    The things I’m mostly interested in are (dramatically) lower toxicity than standard US treatments with more treatment performance for a substantial improvement in therapeutic index, drawn from the scientific literature. While a lot here run their mouths, I actually read papers.

    What is often touted here as the sole version of scientific methodology, analysis and advance would laughable to the scientific American industrial heroes of the 20th century as ruinously expensive, bone headed and ineffective in other venues. As a country, we are already finding out about the “ruin” part.

  46. #46 prn
    March 16, 2012

    Erratum, not Dktr B/Pimpler, MI Dawn.

  47. #47 Johnny
    March 16, 2012

    What I know is that many valuable treatments have been slandered, attacked without merit or misrepresented and left unavailable in the US.

    Name your two best examples. If you have many examples, naming the two best should not be a problem.

    Only two, please.

  48. #48 flip
    March 16, 2012

    @44 Vicki

    I agree, looking at and considering related issues is necessary: which is part of why my experience has troubled me. Allergies was one of the first things I thought of – never having had asthma before in my life – and was extremely surprised when only one doctor brought it up in passing and another scoffed at it. Although various doctors did discuss possible reasons and/or connections, they really didn’t seem interested in going into a lot of detail. On the other hand, the specialist and I discussed a lot of lifestyle and other issues, far more than I had discussed with all of the others combined, and was quite detailed including ensuring follow-up letters to the clinic I had been attending to let them know that she was now involved with my treatments and what was happening (as compared to those clinic docs who never considered obtaining my medical records from my previous GP and with barely cursory glances at past test results I had brought with me). I usually wait 30 min. or more after my appointment time to see the specialist, but it’s always been worth it.

    … Speaking of which, I seem to recall reading at the SBM blog or somewhere similar a post on how to find/interview new doctors. If anyone has the link, please post it because I’d really love to re-read it and have it on hand.

  49. #49 prn
    March 17, 2012

    Johnny@47, “oh, wooe is me”
    If you have many examples, naming the two best should not be a problem.
    “best” by what definition? fastest, most dramatic, “most important” by economics, morbidity or mortality, best documented, most intelligible for technically unwashed skeptics? Good alternative treatment systems are often multicomponent rather than single magic bullets. Determining your “best” is subjective here.

    I could consider many treatment groups. I’ll start with one. If US trained doctors don’t know or currently prescribe a treatment or protocol, it can be considered unavailable.

    Since Orac provided us dialog on oncology and “alternative” tissue tests (above), I’ll take a shot at that. I happen to think that the CSLEX-CA19.9 tissue stain targeted cimetidine treatment is one of the most important unutilized treatments for a large fraction of gastrointestinal cancer patients in the US. Life and death stuff. Basically a CLSEX positive stage II CRC patient was dead nearly as soon an early mCRC (IV) without targeted treatment. An oncologist that can’t at least discuss these predictive biomarkers with cimetidine intelligently, appears incompetent to me – simply by not being informed on global technology and techniques published in their own journals. I haven’t met a US trained doctor that could.

    Since Denice likes to denigrate “mushroom powders” based on beta glucans, another set of immune stimulating technologies, I’ll throw that in too.

  50. #50 Denice Walter
    March 17, 2012

    @ prn: While I enjoy denigrating many things, the point about mushrooms ( and CoQ10 for CV) is that I’ve been hearing about it for years- decades really- and the research has never gotten off the ground! I know the standard answer is : ” There’s no money in it, so no one will research it.”

    However, I seem to recall more than a few studies that have shown that 10 minutes of exercise is effective ( Gaesser, many others) and other studies about lowering fat consumption- both strategies cost nothing. These simple ideas work against entrenched financial interests like manufacturers of supplements, diet products, exercise equipemnt and clubs, thus we might expect lobbying by entrenched interest *against* them – if it were truly all about money.

    At any rate, I wish you well.

  51. #51 Johnny
    March 17, 2012

    So you define “treatments have been slandered, attacked without merit or misrepresented” to mean papers on “technology and techniques published in [mainstream] journals” and “left unavailable in the US” means that doctors that do not “currently prescribe a treatment or protocol”?

    In that case, I’d agree with you. I’m sure that there are many protocols and techniques are published that doctors don’t utilize.

    See, I thought that, based on your original quote, that you were aware of treatments that were documented and proven to be safe and effective, and were outlawed in these United States of America.

    Do you speak Thinglish?

  52. #52 prn
    March 17, 2012

    The documentation of most CAM treatments tends to be thin at one spot or another by FDA drug standards. Many classify as nutrition. Some are old treatments trampled by the onrush of marketing with whole layers of glitter from newer, more expensive pablum.

    I operationally defined “unavailable” as don’t know or currently prescribe a treatment or protocol because the average person doesn’t know enough to use something in a timely manner. Unapproved medicine is alternative by different degrees, lock into monolithic, poor “standard of care” is a big issue driving biologically based CAM.

    The slander or misrepresentation part can be separate processes independent of physical availability. Or even aggravated by free access and physical availability.

    Cases of denigration may represent claims of formal “proof” or less formal processes of rumor. Laundering and expanding these claims third and fourth hand completes the “authoritative” misunderstanding. Wittingly or not, Orac does some of this on vitamin C, as an example.

  53. #53 prn
    March 17, 2012

    Denice@50
    and other studies about lowering fat consumption
    I worry more about carbs and try to use fats that I consider to be healthier molecules. There are significant public perceptual differences about which fats are best and worst.

    If you’re still concerned about cardiovascular chemistry, coQ10 as a single nutrient isn’t going to cover over two dozen risk factors. Also supplements don’t have to be expensive, unless they’re over regulated.

    And yes, a little exercise carries big dividends.

  54. #54 herr doktor bimler
    March 17, 2012

    An old mate of mine was trying a couple of experimental therapies last year, his attitude being that metastatised colorectal carcinoma is an opportunity for some interesting N=1 experiments.

    http://www.stuff.co.nz/national/health/6286401/Vitamin-therapy-fails-to-deliver-for-Sir-Paul

    In particular, he tried intravenous high-dose vitamin C and some mushroom combination from Chinese herbalism — the idea was to use his blood levels of CEA as a marker for the cancer’s activity and look for differences between phases with each treatment and phases without it.

    It turned out that neither treatment made any difference for Paul… which of course does not generalise for everyone else, but he is passing on that negative result for the benefit of anyone else considering a similar experiment.

    Anyway, best wishes to anyone who’s experimenting with a personalised therapy regime.

  55. #55 prn
    March 18, 2012

    We’re still waiting for the true #52 to clear the filter, my answer to Johnny, from before my answer to Denice.

  56. #56 ken
    March 18, 2012

    @Denice- @50
    Info about CoQ10
    faculty.washington.edu/ely/coenzq10.html

  57. #57 ken
    March 18, 2012

    @Denice @50 Please do your homework before you comment about CoQ10.

  58. #58 prn
    March 18, 2012

    Sorry for your friend’s lack of a good result. At this stage of technology, it appears to take a lot more than that to be successful at the median case level for stage IV CRC.

    CRC cell kill or inhibition tests, results published and not, indicate that “vitamin C” needs poising and an adjunct to be a reasonably efficient inhibitor. Some of the successful ACS sponsored preclinical tests are almost 40 years old but remain obscure. Even an extended version will likely need low toxicity experimental polypharmacy, aggressive surgery where an average surgeon won’t even start, and more blood test sophistication to likely succeed at n=1.

    As well as the document base and ability to dissect less informed oncologists’ speculations and failures.

  59. #59 Denice Walter
    March 18, 2012

    @ ken:

    No one ever said CoQ10 is useless and hasn’t shown CV effects although Mayo says it remains controversial.( from your Washington page)
    Woo-meisters ( Gary Null) and NDs ( Linda Rector-Page) have been citing it as a *replacement* for standard pharma ( e.g. beta and Ca channel blockers etc) since the 1990s. Alt med providers believe pharma is unnatural, useless and even dangerous and thus will over-emphasise clinical benefits that may exist for more natural substances available in supplement form while simultaneously slamming pharma. Wishful thinking.

    Vitamin E may also have shown benefits but has it replaced rxs?
    Somehow I don’t see GSK, Merck, Lilly *et cie* going out of business any time soon.

  60. #60 prn
    March 18, 2012

    Denice, in the “natural world”, magnesium is the first step Calcium channel blocker.

  61. #61 Circulating Tumor Cells
    March 19, 2012

    Thank you for thus extreme a brilliant blog for Circulating Tumor Cells. where else might one gain this one variety of data written within extremely one incite full way? I have a delivering as a result of i am impartial these days working on, moreover I even have be looking as terribly information.

  62. #62 herr doktor bimler
    March 19, 2012

    Sorry for your friend’s lack of a good result.

    Thanks. I mention him not to build a case against the particular experimental treatments he tried, but as an example of how N=1 experiments can be more than anecdata.

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