Respectful Insolence

Recently, I got an e-mail from someone who had just discovered my blog that made me think a bit, which is usually a good thing. At least, in this case it was. Basically, this reader asked me a question I hadn’t been asked in a very long time and hadn’t thought about in a very long time, specifically: If I had to pick just one and only one, what is the single most characteristic difference between alternative medicine quackery and science-based medicine? True, there are several key differences, and I’m sure many of you could tick off a list of five to ten characteristic differences without even thinking about it. So could I. However, if I had to pick the single biggest characteristic that distinguishes alternative medicine quackery from SBM, it lies in the approach to clinical evidence. In brief, in SBM anecdotes are considered the lowest, least reliable form of clinical evidence. In alternative medicine, anecdotes are the highest form of evidence, and you must, above all, believe them. Failing to do so is to attack the patient. Anecdotes must never be questioned, no matter how respectfully it is done. The patients’ interpretation of the medical implications of his experience must never be questioned.

Consider this. In the evidence-based medicine (EBM) paradigm, observations begin with clinical observation. A careful clinical observation in which the patient’s history, diagnostic tests, treatments, and clinical course are carefully documented is basically an anecdote. (I realize I’ve been critical of EBM for ignoring prior plausibility and fetishizing the randomized clinical trial further above all other forms of clinical evidence than is deserved, but that doesn’t mean the general paradigm isn’t generally correct when prior plausibility is taken into account.) In EBM/SBM, anecdotes are not, straw men by quacks to the contrary, dismissed out of hand. Rather, they are useful as hypothesis generating observations, but they are not sufficient. The next step must be to test the hypotheses generated in more patients. This sort of observation can range from a case series (several anecdotes examined together for commonalities and differences) to retrospective observational studies, to a pilot study, which is usually a small study without a control group to test safety and look for indications of efficacy. Trials of new drugs, for instance, are divided into different phases. The purpose of phase I trials being to test the safety and maximal tolerated dose of a new drug and phase II trials being small pilot trials that might or might not have a control group designed to look for indications of efficacy. Finally, when there are sufficient data from more preliminary trials, large randomized double-blind phase III clinical trials are performed to test the new treatment either against a placebo control or against the existing standard of care. In the case of cancer trials, for example, these are often trials of a new drug plus standard of care versus standard of care. Finally, once a drug is approved by the FDA, phase IV studies are performed to look for uncommon complications that might have been missed in the original trials used to approve the drug.

There’s no need to go more into the details of clinical trials here other than what I’d discussed above. The point here is that in EBM/SBM, anecdotes are considered the lowest form of clinical evidence, with case series only slightly “better” than single anecdotes. As I like to say, the plural of “anecdote” is not necessarily “data.” Rarely are treatments adopted based on only case series, because case series can easily mislead. The only time treatments are adopted on the basis of such unreliable evidence is when the disease or condition being studied is so rare that randomized clincial trials are not feasible. Other questions can’t be subjected to randomized clinical trials because it would be unethical to do so (the usual example is a randomized, placebo-controlled, double blind clinical trial of “vaxed versus unvaxed,” which would leave one group unprotected against vaccine-preventable diseases). In these cases, large epidemiological studies must suffice to demonstrate that, with only a very small margin of error, there is no detectable association between vaccination and autism or between the thimerosal preservative that used to be in vaccines and autism, and they do. There are multiple such large epidemiological studies that do just that, to the point that, barring new evidence as compelling as the evidence that exists, scientists have concluded that vaccines do not cause autism.

The contrast from quackery couldn’t be any starker. I’ll use cancer quackery as an example. In cancer quackery, you’ll virtually always see glowing testimonials aplenty in which patients claim to have been cured or made substantially better by the treatment in question. Never mind how alternative cancer cure testimonials often result from a misunderstanding of cancer prognosis and in particular the difference between primary curative therapy and adjuvant therapy. Strike that. It’s not just cancer quackery. For any quackery, you will find that the key evidence presented by practitioners of that quackery for its efficacy will usually not be randomized clinical trials. For some forms of quackery, bias-prone clinical trials, either poorly designed and performed or actually well designed but misinterpreted as positive, either willfully or inadvertently. (Acupuncture studies are notorious for the latter.)

The point is that in EBM/SBM it is fully understood that individual anecdotes can be profoundly misleading regarding the efficacy and safety of a therapy. Placebo effects, confirmation bias, regression to the mean, and any number of other confounders can provide the illusion of efficacy when there is none. Individual human observations and human memory are extremely fallible. You only have to consider the seemingly never ending testimonials for homeopathy. If there is any form of quackery that is, quite literally, nothing (well, nothing more than water or water embedded in sugar pills), it’s homeopathy. Similarly, if there is any treatment that is even more clearly nothing than homeopathy, it’s reiki. Reiki, as you might recall, claims that healers known as reiki masters can channel the “universal energy” into a patient for healing effect. It’s nothing more than faith healing that substitutes Eastern mysticism for Christian beliefs. It’s magic.

In contrast, in quackery individual anecdotes, which I like to refer to as testimonials, are all. They are not to be questioned. If you do analyze or question them, no matter how reasonably and even if you are not doubting what happened but rather questioning the patients’ interpretation of what happened, you can count on being accused of attacking the patient or of accusing the patient of lying. If you point out that an anecdote does not necessarily show what it is being claimed to show. I’ve done this several times for Stanislaw Burzynski patients, and the result is that I’ve been accused time and time again of “attacking patients.” One patient of Burzynski’s even complained to my state medical board because I analyzed her testimonial and found it not to be evidence that Burzynski’s “personalized gene-targeted cancer therapy” cured her cancer. When it comes to Burzynski and much of the rest of alternative medicine, the cult of the anecdote rules. The sole exception that I can think of is acupuncture, but it’s not really much of exception at all. There are lots of clinical studies of acupuncture that, when taken in their totality are negative, but there are enough positive studies that can be cherry picked.

If you really want to see where the cult of the anecdote rules above all else, however, the antivaccine movement is the prototypical example. Antivaccinationists fervently believe that vaccines cause autism primarily because they have confused correlation with causation. Because children receive several vaccines during the age when autism and autism spectrum disorders are most commonly diagnosed, by random chance alone there are many whose children either regress or whose children’s autistic symptoms become apparent within a short period after vaccination. Add a dash of confirmation bias, and it’s easy to understand why parents so easily confuse correlation with causation, as we humans are pattern-seeking machines and our psyches seem to require identifying a cause when something bad happens. These anecdotes are Gospel, and the “mommy instinct” that leads to the linking of vaccines with autism in these parents’ minds is not to be questioned.

The overall problem is that our cognitive biases are such that we are easily misled. That we are so easily misled is not because humans are stupid or dense (although surely a few of us are). Rather, it’s because the way our brains are wired is such that we are too quick to ascribe causation to correlation and cannot recognize just how fallible we are. It’s also not because we are inherently deceitful (although surely a few of us are). The people repeating testimonials of cancer cures due to alternative medicine or that vaccines made their children autistic fervently believe that the alternative medicine or that vaccines caused their children’s autism. That’s why they are so fervent, so absolutely certain in their beliefs. They think they saw it with their own eyes, but what their own eyes told them was wrong.

In medicine, anecdotal evidence is evidence, but it is only a starting point. SBM/EBM takes that into account and relegates anecdotes to the lowest rung of clinical evidence, to be considered carefully and used for hypothesis generation, but they are not particularly useful for making generalizable conclusions. It took medicine a long time to realize this. Indeed, compared to the 3,000 year history of medicine, the randomized controlled clinical trial as we know it today for testing drugs and devices is very a recent development. It is less than 70 years old. Thinking scientifically in this way and not trusting our own experiences and memories are not easy; they do not come naturally. We had to understand that before medicine could truly advance beyond bloodletting and itinerant healers. Antivaccinationists and alternative medicine apologists would lead us back to those bad old days simply because very human cognitive biases have led them to believe what they want to believe, and, like most humans, they believe their senses more than they believe science. Science is, after all, a very unnatural way to think, particularly when it comes to our health. It takes effort, but it’s worth it because it is how SBM changes and improves based on new medicine.

Comments

  1. #1 Mary
    August 20, 2013

    I think that is a great answer. I’ve been musing on that too, and the difference between the approach to claims and statements from the science side and the non-science side. And I think what you described leads to a culture of not questioning claims that does not serve them well at all on the non-science side. Their gurus go unchallenged. Their misinformation is amplified around their social spheres unhesitatingly. But the foundation is that unquestioning response.

    The other day I tweeted something from the journal Science. Within 10 minutes I had a heated discussion going about some of the claims in their infographic in my twitter feed. And I loved it. It wasn’t personal–it was about how we got to the information in that graphic. Some wanted details on the sources of the data. Some disliked the measurement used. All of that was fine–and perfectly healthy.

    And it struck me that any infographic from the usual crankosphere would be accepted as Gospel–sources or methods irrelevant. And that is what makes science different. We challenge each other to get the best information, based on the real data.

  2. #2 Denice Walter
    August 20, 2013

    Incredibly whenever Orac discusses the inner workings of CAM it seems that- almost by magic -an illustrative example synchronistically appears from the woo-esphere – as it does today. That’s power!

    AoA’s Ann Dachel interviews a commenter- and not just any commenter- but an altie doctor. I am familar with his name via the chief woo-caster of PRN.

    Dr Michael Schachter maintains that many doctors DO believe in anecdata like “vaccines cause autism” but are silent because they fear losing their jobs if they work for medical facilities. Now he’s been a doctor for nearly 50 years so I imagine he has a load of anecdotes.

    There’s something here that appeals to many alt med supporters because it shows that their input serves to initiate the investigation and that they were indeed correct in their own suspicions. If you recall, AJW’s entire claim to fame originates in the anecdotes and beliefs of parents, thus he is loved whilst promulgators of research are scorned.

    Dr S hopes that the eventually medicine will follow his path.

  3. #3 Bronze Dog
    August 20, 2013

    Well said. If I had to boil the whole woo-skeptic dynamic to one major problem, it’d be the woo love for anecdotalism.

    I should probably get to work on my next new Doggerel entry sometime this week: “You Skeptics Think We’re All Liars!” The bit about “attacking patients” certainly rings of that idea.

  4. #4 Chris HIckie
    August 20, 2013

    Reading your column today, Orac, reminded me of the scene in “Monty Python and the Holy Grail” where Sir Bevedere comes upon some peasants about to burn a woman they’ve accused of being a witch:

    Sir Bedevere: What makes you think she’s a witch?
    Peasant 3: Well, she turned me into a newt!
    Sir Bedevere: A newt?
    Peasant 3: [meekly after a long pause] … I got better.
    Crowd: [shouts] Burn her anyway!

    Half the antivax crowd is making up crap about being turned into newts by vaccines, and the other half believes whatever they say.

    That’s basically what Dr. Schachter wants, maybe because it gives him the power to accuse witchery of whatever he feels doesn’t fit his own personal experience.

  5. #5 Denice Walter
    August 20, 2013

    Right.
    As I was going to remark to Bronze Dog, alties value individuality and self-expression which are irreducible to
    scientiific analysis.

    “Ha ha.” says the student of individiual differences.

  6. #6 lilady
    August 20, 2013

    Denice…nice catch. Here’s the bot’s interview with Michael Schacter M.D. a “metabolic medicine” doc, located in Suffern New York.

    http://www.ageofautism.com/2013/08/dachel-qa-dr-michael-schacter.html#more

    Schacter has been commenting at AoA and showing up on other blogs, recently. Chris and I ran into him on The Harvard Law Review, commenting about the debate of holding parents who opt of vaccines, responsible for the costs of care when it can be proved that their deliberately unvaccinated child infected another child, who was either too young to be fully immunized…or a child who had a valid medical contraindication for not being vaccinated.

    There’s a very “interesting” background story about Dr. Michael Schacter and his involvement in a court case which resulted in the death of a child from Hodgkin’s disease.

    Dr. Offit discussed the case (actually devoted a large portion of his book “Do you Believe in Magic”, to discussing the Hofbauer case in his cancer quackery chapter). Dr. Schacter was the metabolic doctor who treated the youngster when the parents were charged with medical neglect.

    The child was taken from New York, after his PCP made a complaint that the parents of Joseph Hofbauer refused to take him to an oncologist. The child was started on Laetrile and when they returned to NY State, in spite of many motions and appeals, the parents had their child returned to their custody, with the provision Joseph’s care would be monitored by Dr. Schacter. The child died from Hodgkin’s disease, while under the metabolic doctor’s care:

    http://virtualmentor.ama-assn.org/2006/10/hlaw1-0610.html

  7. #7 Dangerous Bacon
    August 20, 2013

    I always thought the key difference between EBM and woo was resistance to change.

    EBM: “Well, new evidence shows we were wrong about that, so we’ll change diagnosis/treatment accordingly.

    Woo: “We’ve been doing it this way for thousands of years! Everyone is different! Big Pharma made that up to destroy alternative medicine! Neener neener neener!!!”

  8. #8 Orac
    August 20, 2013

    The two, reliance on anecdotes instead of controlled evidence and resistance to change, rather go hand-in-hand.

    http://scienceblogs.com/insolence/2013/08/02/yes-virginia-unlike-cam-science-based-medicine-does-change-based-on-science/

  9. #9 Renate
    August 20, 2013

    @ Dangerous Bacon
    And I though the woo promoters acused the SBM promotors of not being open for change. And don’t forget the paradigm shift and new discoveries in nano-particles and quantum mechanics. All those things you never hear from SBM promotors.

  10. #10 Shay
    August 20, 2013

    The chief difference between woo and SBM is that woo is market-driven (which automatically makes it better).

    //sarcasm//

  11. #11 Dangerous Bacon
    August 20, 2013

    “And I though the woo promoters acused the SBM promotors of not being open for change.”

    Translation: “You need to have an open mind, but only if it’s in my favor!”

  12. #12 Renate
    August 20, 2013

    I prefer an open mind, without my brains falling out.

  13. #13 EpiPete
    August 20, 2013

    Amongst the differences between woo and SBM are…

  14. #14 Brennen McKenzie
    August 20, 2013

    Like most comparisons, the difference between alternative medicine and science-based medicine can be delineated in different ways depending on the frame of eference and the interests of the person doing the comparison. I wrote a paper looking at the core philosophical differences which touches on this subject and might be of interest to some:

    McKenzie, BA
    Is complementary and alternative medicine compatible with evidence-based medicine?
    J Am Vet Med Assoc. 2012 Aug 15;241(4):421-6. doi: 10.2460/javma.241.4.421.

    For those who can’t access the journal, here’s a presentation on the subject I gave at the 2012 AVMA Annual Convention

    http://skeptvet.com/Blog/2013/07/can-complementary-and-alternative-medicine-be-evidence-based-2/

  15. #15 prn
    August 20, 2013

    For some forms of quackery, bias-prone clinical trials, either poorly designed and performed or actually well designed but misinterpreted as positive, either willfully or inadvertently.
    Ditto the mainstream. “…misinterpreted as negative or positive or some underlying message…” would be about right. I see negative agenda stuff loaded with long known contraindications, poor/nonexistant stratification, nonexistant controls or recorded data on important variables, wild orders of magnitude application errors, in many “maimstream attacks”. No credibility there either.

    A careful clinical observation in which the patient’s history, diagnostic tests, treatments, and clinical course are carefully documented is basically an anecdote.
    with enough definitional tests, including high quality and specifivity biomarkers, an individual case can be on the way to being a data point with potential for comparison, and considerably reduced uncertainty.

    anecdotes are not, … dismissed out of hand. Rather, they are useful as hypothesis generating observations, but they are not sufficient.
    Strange, there are CAM cases or series that have been dismissed out of hand that do not have genuinely contradictory data.

    As for hypothesis generating vs movement to a live fire application, this is in part a matter of scale and prior observations. De novo compounds with unknown, erratic or substantial toxicity proposed for sales on a national distribution level are much different situations than an individual doctor with a new technique or insight starting from generic and nutritional materials.

    However, as an individual, I claim the right to more immediate self experimentation without interference, especially on low toxicity materials of long standing and patients in dire situations. How to best address individual doctors with claims of unique insight and experience is a serious question for patients with an immediate need, that has not been satisfactorily addressed with current regulations.

  16. #16 Mal Adapted
    August 20, 2013

    Your key observation, Orac:

    The overall problem is that our cognitive biases are such that we are easily misled. That we are so easily misled is not because humans are stupid or dense (although surely a few of us are). Rather, it’s because the way our brains are wired is such that we are too quick to ascribe causation to correlation and cannot recognize just how fallible we are.

    Feynman addressed the problem succinctly:

    Science is a way of trying not to fool yourself. The first principle [of Science] is that you must not fool yourself, and you are the easiest person to fool.

  17. #17 Peebs
    August 20, 2013

    According to Our Lord Dr Goldacre, the clinical trial first occurs in the Book of Daniel;
    http://www.badscience.net/2009/12/todays-bible-reading/

    I may be taking the piss but surely the blanket statement that clinical trials are less than a century old is inaccurate.

    Lind, Pasteur, Lister et al must’ve engaged in trials even if primitive by our standards.

    Just a thought.

  18. #18 Karl Withakay
    http://blog.cordialdeconstruction.com
    August 20, 2013

    I frequently run into the problem where people put the highest value on (uncontrolled) personal observation:

    -”It’s not an anecdote when it happens to you or you experience it.”

    -”You can cite all the studies you want regarding total net calorie intake being the only thing that matters (for weight loss) and the makeup of those calories being irrelevant, but they are obviously missing something because I know that I loose weight when I cut carbs, even thought I don’t reduce calories because I eat more fat like having no buns and two burger patties.”

    -”You can’t really understand or appreciate what Reiki is until you experience it for itself. I felt profoundly changed for a week or so after I had Reiki.”

    -”I know vitamin C/ vitamin D/ Cold-Ease/ etc fights/ prevents colds because it works for me every time I have a cold.”

    People tend to trust their own personal observations above all things, except, apparently, when they go to a magic show. The really don’t understand all the problems with human perception and observation. I guess they don’t think that Feynman guy knew what he was talking about regarding fooling yourself.

  19. #19 herr doktor bimler
    August 20, 2013

    I may be taking the piss but surely the blanket statement that clinical trials are less than a century old is inaccurate.

    Ah, but Orac has specified randomised, controlled clinical trials. Which excludes (e.g.) Lind’s 1747 test of citric juice for scurvy, which was randomised, but hardly controlled.

  20. #20 herr doktor bimler
    August 20, 2013

    I may be taking the piss

    I never took you for an Ayurvedic practitioner, Peebs.

  21. #21 Orac
    August 20, 2013

    @herr doktor bimler:

    Exactly. Notice my exact words and how I added “as we know them today.”

  22. #22 Matthew Cline
    August 20, 2013

    @Karl Withakay

    I frequently run into the problem where people put the highest value on (uncontrolled) personal observation

    I remember several times people coming here and saying that we should try out X for ourselves, and not getting why we’d be against an uncontrolled, unblinded experiment with N=1.

  23. #23 Denice Walter
    August 20, 2013

    @ Peebs:

    Thanks for that!

    -btw-
    we should note that Daniel was Jewish and may have preferred kosher meat ** not the king’s- ( which probably wasn’t- as his folk worshipped gods and goddesses – Inana etc.)

    Interesting though, pulses are judged better because they cause the face to become ‘more fair’ and ‘fatter’. Vegetarians today would argue that they make you fairer and leaner. Meats cause obesity.

    Times change.

    ( And I love commenting on holy writ, being an atheist)

    ** altho’ prophets may avoid any meat.

  24. #24 Mephistopheles O'Brien
    August 20, 2013

    prn

    owever, as an individual, I claim the right to more immediate self experimentation without interference, especially on low toxicity materials of long standing and patients in dire situations. How to best address individual doctors with claims of unique insight and experience is a serious question for patients with an immediate need, that has not been satisfactorily addressed with current regulations.

    You’re an adult, you can experiment with any legal substances you want. Don’t expect anyone to take your word for what worked or didn’t.

  25. #25 Karl Withakay
    http://blog.cordialdeconstruction.com
    August 20, 2013

    @Matthew Cline

    I totally forgot to include:

    -”Why don’t you try X and see for yourself.”

    -”Have you ever tried X? You can’t possibly understand unless you’ve experienced X yourself.”

  26. #26 Mephistopheles O'Brien
    August 20, 2013

    Also you can expect well meaning people to let you know when they think you’re behaving foolishly and risking your life on unproven treatments. It’s not necessarily that they are prejudiced against your treatment; they’re unconvinced that there is evidence that it is safe and effective.

  27. #27 Karl Withakay
    http://blog.cordialdeconstruction.com
    August 20, 2013

    Well, I guess I didn’t totally forget, the Reiki comment sort of much covered it.

  28. #28 Mephistopheles O'Brien
    August 20, 2013

    I for one plan to experiment with ethyl alcohol as a solvent for cholesterol.

  29. #29 Denice Walter
    August 20, 2013

    @ Mephistopheles:

    my own research leads me to suspect it alleviates stress and social anxieties.

  30. #30 Chris HIckie
    August 20, 2013

    To be fair, Dr.Barry Marshall did an n = 1 experiment with a petri dish full of H. pylori, and enough people did take his word for what happened…though it helped he had an endoscope to make his point.

  31. #31 Mephistopheles O'Brien
    August 20, 2013

    @ Denice – Good to know.

    “To alcohol! The cause of, and solution to, all of life’s problems.”

  32. #32 Tsu Dho Nimh
    August 20, 2013

    In EBM/SBM, anecdotes are not, straw men by quacks to the contrary, dismissed out of hand. Rather, they are useful as hypothesis generating observations, but they are not sufficient.

    One of the best examples of this is the identification of “Maple Syrup disease” … after the anecdotes, and the lab confirmations they figured out how to better identify it and what to do about it.

  33. #33 Denice Walter
    August 20, 2013

    You may start with an N of 1 and proceed to..

    your own forensic lab?

    That’s what Mikey has done:
    he bought himself a very expensive miicroscope, was trained in lab techniques and now is exploring the fascinating microscopic world of fast food ( @ his Forensic Food Lab)

    He buys chicken- that children are known to relish- at a local fast food place and STUDIES it for hours, scanning it carefully and …
    he finds no trace of meat BUT
    there are mysterious fibres, a silicone-like gel and specks of something!

    He has revealed his findings at Natural News, the Alex Jones Show and the Robert Scott Bell Show over the past few days ( videos, audio, photos)

    Can it be Morgellons? (( shudder))

    This will “rock the FDA” who are in bed with food companies.
    They monitor raw milk producers NOT THIS!

    Today Mike writes about the new freeze-dried fruit snacks he has developed for school kids available now at the Store.

    As Bell remarked on his tape with Mike, “No COI here”.

  34. #34 Chris HIckie
    August 20, 2013

    Maybe Mikey is seeing midi-chlorians.

    The force is strong in this fowl beast!:

  35. #35 Spectator
    August 20, 2013

    Antivaccinationists fervently believe that vaccines cause autism primarily because they have confused correlation with causation are arrogant in their practiced ignorance.

    Fixed.

  36. #36 Old Rockin' Dave
    August 21, 2013

    There is a wonderful story, the exact details I do not recall,about the first public demonstration of intracavernous injection of papaverine to induce an erection.
    As I recall,on the way to his talk at a conference, the speaker injected his own penis in the elevator, and came down from the podium to ask embarrassed members of the audience to touch his penis and assess the quality of his erection.
    I’m not sure if he had done other studies before that, but some anecdotal evidence is pretty convincing.

  37. [...] Medicine blog explaining in detail why anecdotes are not reliable in medical research. And another from Orac at Respectful [...]

  38. #38 MarkL
    August 21, 2013

    Surprised that no-one has mentioned this:

    Surely the key difference between Alternative medicine and evidence based medicine is that one works and the other doesn’t?

    Isn’t efficacy the be-all and end-all as far as medical treatment goes?

  39. #39 Ron Edwards
    DePaul University
    August 21, 2013

    I hope that I will be understood as agreeing with Orac with this post.

    Actions such as erection-displays and drinking bacteria are not scientific evidence. They are stunts. They may be effective stunts in terms of social acceptance and getting people to appreciate how brave or mavericky or whatever one might want to be. They may be effective as well in combating what one perceives as hidebound, unthinking professional resistance. Whether they are justified or good or whatever other value judgment you care to employ, is up to each person to decide.

    But they aren’t scientific reasoning. Citing them as counter-arguments to or even nuances regarding Orac’s point is not accurate. The point is that clinical trials (subject to his detailed description) are the best way we have of setting medical practices and policy, and that anecdotes of any kind are at best pointers-of-the-way, and more often, false indicators or distractions.

    As Orac has pointed out many time, not all culturally-tagged science and not all medicine or medical research is actually science. If someone tagged as a scientist and/or a doctor does something that doesn’t accord with that definition, their particular social role doesn’t make the something into science or into a justified medical recommendation.

  40. #40 Mephistopheles O'Brien
    August 21, 2013

    @MarkL – true enough, though people who argue in favor of alternative medicine claim it IS effective. This may be some new use of the word effective that I was not previously aware of.

  41. #41 Denice Walter
    August 21, 2013

    It should also be noted that the stunts are n=1.

  42. #42 Sastra
    August 21, 2013

    Excellent post. I think you hit the proverbial nail on the proverbial head.

    If you really want to see where the cult of the anecdote rules above all else, however, the antivaccine movement is the prototypical example.

    I disagree; I think the proverbial example of the cult of the anecdote is “Spirituality.” The personal story is literally sacred. And it’s more than a cult: it’s the mainstream default.

    I discern a direct link from this one to the other (alt med in general.)

  43. #43 jane
    August 21, 2013

    I see several distinct truths regarding this theme:

    1. It is certainly true that some too-enthusiastic fans of alternative medicine place excessive weight on anecdotes, including in situations where scientific evidence strongly contradicts the anecdotes or doesn’t exist and should be wanted. That’s unfortunate.

    2. Extreme partisans of conventional medicine do the same, just as badly. Have we not all read a story about strong statistical data showing net harm for some aggressive screening program, and seen it followed by a deluge of frothing comments about how I/my sister/my cousin got screened, diagnosed and aggressively treated and would surely have diiieeeeed otherwise, therefore all of you better run to get “your” screenings or else, QED? Have we not all seen equally hysterical comments from self-identified specialists wielding arguments-from-fear?

    3. Sometimes actual or self-appointed experts really do respond to anecdotes they do not like with rejection of the speaker’s experience and contempt for the speaker himself (or, especially, herself). Karl Withakay, a relatively polite commenter, seems to suggest above that if a person tells you she can only lose weight when she reduces carbs, this merits only a sneer. Yet there is recent scientific evidence that not all calories may be identical and in every person; a human is not a bomb calorimeter, which among other things does not have gut flora or appetite-promoting neuroreceptors. A patient who reports such an experience to her doctor and gets a sneer back is not going to conclude that she imagined her experience, but that doctors are too pigheaded to accept the truth if it contradicts their worldview. This makes it much more likely, of course, that the next sneer will be rejected out of hand, perhaps in a case where it merited careful consideration.

    4. Sometimes anecdotal evidence is enough to support decision-making. If you’re dying of cancer, you’d be wiser to focus on enjoying your remaining time and money rather than blowing it all on something that has no solid evidence of benefit, because that can cause real harm. If you’re trying to lose weight, and cutting out wheat helped your cousin, trying the same for a few weeks to see if it helps will not harm you at all. The vast majority of things humans have been doing for millennia to make themselves more physically, mentally or emotionally comfortable have not been subjected to exhaustive scientific testing; this doesn’t mean we should stop doing all of them.

  44. #44 jane
    August 21, 2013

    @Sastra – “I think the proverbial example of the cult of the anecdote is “Spirituality.” The personal story is literally sacred.”

    Science is not good at dealing with subjective personal experiences. There are scientific studies that demonstrate, for example, that long-time meditators have significant alterations of brain activity. But when the meditators say that they have become “happier” or developed a lasting sense of “peace”, how are those things to be observed by others, much less quantified? It would certainly qualify as scientism to say that because such subjective experiences cannot be measured, they either do not exist or should be considered valueless.

  45. #45 JGC
    August 21, 2013

    Science is not good at dealing with subjective personal experiences.

    In other words, science isn’t good at dealing with something other than factual observations? I don’t see the problem here.

  46. #46 prn
    August 21, 2013

    MOB@24
    You’re an adult, you can experiment with any legal substances you want. Don’t expect anyone to take your word for what worked or didn’t
    Legality is a very dangerous, very political animal with dirty orgs like FDA. At least four long term prescriptions I’ve bought in recent years have had FDA interference for things that appear to be superior alternatives, including a foreign licensed chemo drug. Superior in skilled hands anyway, much cheaper, at least more convenient and less toxic in unskilled hands. Unregistered in dirty political hands and lands.

    Don’t expect anyone to take your word for what worked or didn’t
    Don’t worry, I have a fair amount of documentation. More than usually produced by oncs and research groups according to some doctors and dept chairs. I usually don’t have problems with high scorers and Tech grads, it’s the too numerous to count ivy empty suits and various ankle biters of a 1000 nips that wear on the soul.

  47. #47 Krebiozen
    August 21, 2013

    The point here is that in EBM/SBM, anecdotes are considered the lowest form of clinical evidence, with case series only slightly “better” than single anecdotes.

    Some people (prn for example) are not even able to muster up a decent case series that might prompt further research, yet still grumble about being repressed.

    Indeed, compared to the 3,000 year history of medicine, the randomized controlled clinical trial as we know it today for testing drugs and devices is very a recent development. It is less than 70 years old.

    The RCCT is a beautiful thing, probably one of the most important human inventions of the past century (crude biblical, 18th and 19th century versions notwithstanding). Like Ben Goldacre I think it could be used in far more areas than it currently is. We could use it compare systems of education, of health care provision, of government, of economics etc. etc.. Blinding would be a problem, but comparing these things in two or more randomized groups could end a lot of political bickering in a number of areas.

    The key difference between CAM and SBM? The inability or unwillingness of CAM to ask the question, “How do I know what I think I know?”

    Old Rockin’ Dave,
    I believe you were referring to Professor G.S. Brindley’s unusual way of announcing his success in using papaverine injections to treat erectile dysfunction at the 1983 Urodynamics Society meeting in Las Vegas. An effective way of getting people’s attention, perhaps, but no substitute for a good RCCT.

  48. #48 Denice Walter
    August 21, 2013

    Urodynamics?

    There HAS to be a way I can work that term into a conversation.

  49. #49 herr doktor bimler
    August 21, 2013

    Amongst the differences between woo and SBM are…
    Fear, surprise, and ruthless efficiency…and an almost fanatical devotion to the Pope.

  50. #50 jane
    August 21, 2013

    JGC – Depends on who is defining “fact,” I guess. If you start meditating and you feel angry less often, I think it is a fact that you are less angry, even if you can’t prove it to me. You can say it is not a fact that I feel better in one way or another if I meditate, or eat right, or spend time with a lover, or pet a cat, or do volunteer work – but you can’t then tell me that Science says I should care only about facts, because most of the things that wise people have always valued most highly are non-factual.

  51. #51 Mephistopheles O'Brien
    August 21, 2013

    jane – Some sciences do, in fact, try to measure happiness, which they do by surveys and various scales. The notion that “most of the things that wise people have always valued most highly are non-factual” would imply they’re all lies, which I don’t think is what you meant. Unless you did, in which case I withdraw the comment.

  52. #52 Sastra
    August 21, 2013

    jane #44 wrote:

    It would certainly qualify as scientism to say that because such subjective experiences cannot be measured, they either do not exist or should be considered valueless.

    I think you misunderstand what I meant by the term “spirituality.” I had originally written “religion” and should perhaps have kept that because you removed the ‘woo.’ You’re invoking a different meaning and I’ve no problem with what you wrote.

    I wasn’t talking about subjective experiences like feeling happier after meditation: what is being measured IS subjective. I meant to point to inferences and interpretations like “when I meditate I leave my body.” Not “I feel as if I leave my body.” But right to “I know I did because I experienced it.”

    I can’t stress strongly enough how much this reliance on personal testimony and this mandate that we take personal testimony at face value contributes to the irrationalism that abounds today. It comes right out of popular therapies, and popular therapies took it straight from the religious tradition of testifying and the conflation of feelings about god’s immanence with facts about his existence (Wendy Kaminer)

  53. #54 prn
    August 21, 2013

    Some people (prn for example) are not even able to muster up a decent case series that might prompt further research, yet still grumble about being repressed
    Uh Kerbiozen, I’m not a doctor or whatever, so my “series” is necessarily likely to be n=1. An individual case can only hope to be so favorable, compelling, and simple, that it gets published. This tx certainly has not been that simple either.

    “repressed” is not hypothetical. Some things are not available in the US, and the FDA is pretty testy about them, no matter what their merits. I’ve overcome numerous obstacles to get tests and materials in place and administered correctly (and legally).

    At the end of the day, I am not looking to impose my answer(s) upon unwilling person(s). Au contrare. I need some of “them” to stay the hell out of my way. Interference is what is frequently advocated here, as a form of “protection”. I think it is a moral obligation to consider the infringements and collateral damage of the proposals here, against the blanket deprecations and “solutions” advocated.

  54. #55 Krebiozen
    August 22, 2013

    jane,

    you can’t then tell me that Science says I should care only about facts, because most of the things that wise people have always valued most highly are non-factual

    Science doesn’t say that you should only care about facts, any more that it says you shouldn’t enjoy good food, literature, art or whatever. To grossly generalize doctors’ attitudes to CAM tend to be, “It probably won’t do you any harm, and if it makes you feel better that’s great. Do be aware it very probably won’t actually have any objective effect on your cancer/MS/baldness/flatulence or whatever.”

    No one denies that acupuncture or homeopathy may lead people to feel subjectively better. What we do deny is that they have any objective beneficial effects that would not equally accrue from a more science-based placebo like relaxation exercises, or a massage. We also object to the false argument: acupuncture makes me feel better therefore qi and meridians exist.

  55. #56 Krebiozen
    August 22, 2013

    prn,

    with enough definitional tests, including high quality and specifivity biomarkers, an individual case can be on the way to being a data point with potential for comparison, and considerably reduced uncertainty.

    No it can’t, since by definition you do not have a control to compare it with. Any or all changes might have occurred with or without the intervention you are investigating. You are groping in the dark. In some circumstances that’s the best any of us can do, but it is your insistence that useful information can come out of this that I object to.

    Uh Kerbiozen, I’m not a doctor or whatever, so my “series” is necessarily likely to be n=1. An individual case can only hope to be so favorable, compelling, and simple, that it gets published. This tx certainly has not been that simple either.

    An individual case study only gets published if it shows something very unusual – a patient surviving a condition that was previously believed to be inevitably fatal, or a very unusual overdose, for example.

    In any case, I wasn’t referring to your own self-experimentation, I was referring to your support of fringe treatments* for which CAM practitioners could very easily assemble compelling case series if they are as effective as you claim. I have pointed out before that NCCAM and OCCAM have hundreds of millions of dollars available to research treatments that show promise in case series, and I have linked to NCCAM case series guidelines.

    I am troubled that no one appears to have done any such thing for many of these fringe treatments, yet they are in use by many CAM practitioners.

    * I know that you are interested in treatments that are plausible, have some limited evidence suggesting promise, yet have not been accepted into the mainstream. I share your interest but I am more cynical and skeptical about the reasons for the paucity of evidence.

  56. #57 jane
    August 22, 2013

    Mephistopheles – If you prefer to say that every thing and concept is either factual or a “lie”, then I hope you, unlike the person to whom I was talking, will concede the factuality of subjective and unquantifiable personal experiences.

    Sastra – I can tentatively agree with that.

    Krebiozen – Why are relaxation exercises more Science-based than acupuncture? I wouldn’t be surprised to find that acupuncture has been the subject of more clinical trials. Is it because of their perceived cultural associations? Anyway, when I hold up a trial in which acupuncture bests a pharma drug – I’ve provided a few before, so you can search for that if you want examples – and am told that acupuncture can’t even count as a science-based placebo if its super-placebo effect exceeds the placebo plus molecular activity of a conventional treatment – well, this makes no sense to me.

    As for qi and meridians, evidence is being amassed that acupuncture affects the nervous system, and I see no reason to give any credence to a belief in qi. But we do not say that opioid drugs must be worthless because the ancient Greek physicians who helped to develop the use of opium believed drugs worked by rebalancing humors.

  57. #58 Mephistopheles O'Brien
    August 22, 2013

    Perhaps “lie” was the wrong word on my part. The opposite of fact would be fiction. Thus something that is non-factual would be fictional.

    I’m perfectly willing to accept that there are facts that are not subject to objective measurement. If someone says that they are happier after meditation, then I have no issue with believing that may be a fact even though I can’t objectively measure happiness.

  58. #59 Krebiozen
    August 22, 2013

    Why are relaxation exercises more Science-based than acupuncture? I wouldn’t be surprised to find that acupuncture has been the subject of more clinical trials. Is it because of their perceived cultural associations

    It’s because acupuncture is predicated on a belief in pre-scientific ideas about life energies and humors. I know various people have tried desperately to shoehorn it into accepted scientific ideas about counterirritation, endorphins etc, but its underpinnings are supernatural, and I don’t think that’s healthy.

    It has nothing to do with cultural associations, it has to do with the persistence of prescientific ideas that were abandoned centuries ago, but were dug up, dusted down, changed a little for cosmetic reasons and sold to the gullible. I object to European homeopathy on precisely the same grounds.

    There are good, plausible explanations for the benefits that relaxation and massage bring, along with any non-specific effects that require no belief in supernatural energies or any other unscientific concepts.

  59. #60 jane
    August 22, 2013

    Well, I guess that depends on your definition of health. I don’t find it “unhealthy” to take codeine when you break your arm just because the folks who invented opioid analgesia were “pre-scientific.” I know people who have used acupuncture to benefit significant physical problems. If they were to adopt your idea of correct beliefs and abandon that, and as a result ended up with better ideological “health” but worse physical health, I do not think they would consider that to be a net benefit; I certainly wouldn’t. This is clearly a disagreement about values – indeed, it doesn’t seem like positive trials or animal studies would matter to you, because the ancient Chinese [and Greeks] had a hypothesis that turned out to be wrong and was therefore supernatural, and therefore nothing of value can come from them. I don’t see any basis for presuming that my life would be better if I adopted that set of values.

  60. #61 Krebiozen
    August 22, 2013

    jane,
    I was forgetting that you believe that acupuncture is something more than a placebo. I don’t believe the evidence supports that at all. In fact it seems blindingly obvious to me that acupuncture has no effects at all that cannot be explained by non-specific ‘placebo’ effects.

    When presented with a choice between two equally effective placebos, I would always prefer the one that doesn’t involved lying to the patient or filling their head with superstitious pre-scientific nonsense.

  61. #62 Krebiozen
    August 22, 2013

    jane,
    Another couple of things:

    I don’t find it “unhealthy” to take codeine when you break your arm just because the folks who invented opioid analgesia were “pre-scientific.”

    In the case of opiates the observations of the ancients were confirmed by RCTs, and we now understand how they work in great detail. In the case of acupuncture there weren’t any ancient observations since acupuncture as we know was invented in the 1930s. As you pointed out, there have been a large number of studies looking at acupuncture, more than enough to conclude that it is no more effective than a placebo.

    I know people who have used acupuncture to benefit significant physical problems.

    I have never seen a well-designed study that showed clinically significant benefit from acupuncture in any significant physical problem. All the evidence I have seen is either very poor quality, shows tiny benefits that are barely statistically significant and certainly not clinically significant, and this only in conditions with a large psychological component.

    There is insufficient good quality evidence for the efficacy of acupuncture in an impressive range of conditions, despite a number of people desperately trying to generate such evidence. When people have tried for decades to produce good quality evidence for the efficacy of acupuncture in a condition and have failed, I think we are justified in saying acupuncture doesn’t work in that condition.

    Based on this acupuncture doesn’t work in irritable bowel syndrome, schizophrenia, depression, insomnia, epilepsy, vascular dementia, period pain, glaucoma, cancer-related pain in adults, acute stroke and many other conditions (the Cohrane list of “insufficient .evidence” goes on and on for pages and pages).

    I used to think there might be something to acupuncture, years ago, and I have even had it myself. In fact I bought an electroacupuncture gadget about 20 years ago (mostly because I was interested in the cranial electrostimulation attachment it came with), and used it on myself, on family and friends for a wide range of conditions.

    After a while I came to realize that it had no noticeable effects at all. It was a useful distraction if something was bothering a person, as it was mildly painful, but I never noticed any remarkable effects.

    That experience combined with reading hundreds of studies resulted in me realizing that there really is no evidence for any effects of acupuncture that were worth my interest. There really is no there, there.

  62. #63 Calli Arcale
    August 22, 2013

    jane, you just don’t get it. Maybe it’s because you have this idea in your head that mystical and exotic people are wiser or nobler, in the backhandedly insulting way that so many of us white people have. It’s not about whether or not something comes to us from superstitious people. It’s about whether or not it works. Full stop.

  63. #64 steve
    oregon
    August 22, 2013

    For a case series / observational study done at a major institution that proved the effectiveness of an alternative treatment:
    http://www.ncbi.nlm.nih.gov/pubmed/9832569

    Metanalyses showing that observational studies have as much reliability as RCTs:
    http://www.nejm.org/doi/full/10.1056/NEJM200006223422507

    For those devotees of EBM, there is this:
    Can Biological Activity be Maintained at Ultra-High Dilution? An Overview of Homeopathy, Evidence, and Bayesian Philosophy
    Aaron K. Vallance. The Journal of Alternative and Complementary Medicine. Spring 1998, 4(1): 49-76. doi:10.1089/acm.1998.4.1-49.

    what should now be said about Dr. Ignaz Semmelweiss, whose colleagues refused to accept his observational proof that their hands could transmit disease and continued killing hundreds of their own patients?

    The first 4 RCT studies showing a link between smoking and lung disease were published in highly regarded medical journals in 1950, but in spite of the evidence doctors continued to lend their names and images to print and tv ads for cigarettes and it was another four decades before medical and public opinion forced smoking out of public places.

  64. #65 Old Rockin' Dave
    On the Big Cock Randy Mountain (Sorry, couldn't resist this one.)
    August 22, 2013

    Krebiozen,
    “Old Rockin’ Dave,
    I believe you were referring to Professor G.S. Brindley’s unusual way of announcing his success in using papaverine injections to treat erectile dysfunction at the 1983 Urodynamics Society meeting in Las Vegas. An effective way of getting people’s attention, perhaps, but no substitute for a good RCCT.”
    Having worked on a number of RCCTs myself, I am well aware of their value. But sometimes you need to grab people’s attention, and you can’t deny that his was a very dramatic method even if anecdotal, which self-experimentation tends to be.
    Come to think of it, lots of discoveries started with a good anecdote – quinidine comes to mind. The difference in this regard between scientific medicine and woo, though, is that in woo, the anecdote is the end of investigation, and in SBM, it’s only the beginning of a long road.
    Thanks, by the way, for the link. I remembered the essence of the story, but not the details.

  65. #66 Krebiozen
    August 22, 2013

    Old Rockin’ Dave,

    Thanks, by the way, for the link. I remembered the essence of the story, but not the details.

    You’re welcome. I’m not sure which is funnier, the audience reaction or Professor Brindley’s gross misjudgment of what is considered appropriate behavior in public. I’m guessing that after several years dealing with ED he had forgotten the cultural attitudes to this particular organ, especially when in a tumescent state.

    I guess most of us are familiar with that to some degree – I know I’m familiar with that certain look of horror on a non-medical person’s face when I am relating an anecdote that wouldn’t raise an eyebrow in a hospital dining room.

  66. #67 Khani
    August 22, 2013

    It happens to relatives of medical personnel. The bright side is, we get a superpower of being able to talk about anything over meals.

    The downside is sometimes forgetting that other people *can’t.*

  67. #68 Old Rockin' Dave
    Beyond the blue horizon, approaching the fuchsia one.
    August 23, 2013

    Krebiozen and Khani, too true about the stories. I have lots I can’t tell around the uninitiated, including some of my funnier ones.
    My brother is a psychologist who works in OCD, and nobody ever winces at his funny stories.

  68. #69 Rosemary Jacobs
    Derby, VT
    August 24, 2013

    Interesting. I just posted a blog on the same subject but from a slightly different angle. Mine was inspired by my naturopathic encounters. http://rosemary-jacobs.blogspot.com/2013/07/naturopaths-alternative-or-naturopathic.html

  69. [...] and alternative medicine — a term that encompasses meditation, acupuncture, chiropractic care and homeopathic treatment, [...]

  70. [...] Orac recently nailed a big problem on topics like this too. Total acceptance of anecdotes: http://scienceblogs.com/insolence/2013/08/20/the-key-difference-between-alternative-medicine-and-evi… [...]

  71. #72 KJK
    boston
    October 2, 2013

    Well then what is to be said about evidence based alternative medicine? There is a lot of evidence out there, good professional evidence. I think if you looked for it you would be surprised at what you would find. Not only are there Randomized Controlled Trials for some of these products but there are also Case Reports and many other types of trials that are done in varying patient populations.

  72. […] and wisdom of the quickly vanishing traditions of the Amazon rainforest. The indigenous science and alternative medicine of varying […]

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