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Answering Our Critics, Part 2 of 2: What’s the Harm?

Last week I posted a list of 30 rebuttals to many of the recurrent criticisms that are made by people who don’t like what we say on SBM. I thought #30 deserved its own post; this is it. At the end, I’ve added a few items to the original list.

What’s the harm in people trying CAM? Science-based medicine has been criticized for being too rigid and intolerant. Why do we insist on randomized placebo-controlled trials to prove that a treatment is safe and effective? Isn’t it enough that patients tell us they feel better? Isn’t that what we all want, for our patients to feel better? Even if the treatment only works as a placebo, isn’t that a good thing? What’s the harm in that?

The albuterol/placebo study

I would argue that we don’t just want our patients to think they are better, we want them to actually be better. A study that illustrates that principle has been discussed on this blog before, here and here.

A group of patients using an effective albuterol asthma inhaler was compared to 2 placebo groups (a placebo inhaler group and a sham acupuncture group), and to a group that got no treatment at all. Patients reported the same relief of symptoms with each of the two placebo controls as with the albuterol inhaler; all three groups reported feeling significantly better than the no-treatment group. It could be argued that placebos are an effective treatment for the subjective symptoms of asthma.

But when they used an objective measure, improvement in lung function, airflow only increased in the albuterol group. The placebo groups were indistinguishable from the no-treatment group. So here you have patients who feel better and think they are better but who aren’t actually better, who might not recognize the severity of an asthma attack in time to get to the ER and avoid a fatal outcome. As Peter Lipson said, we have effective, lifesaving treatments for asthma, and treating an asthma attack with a placebo is folly.

An accompanying editorial was very misguided. It said:

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.

Should the patient run the show?

Some of those conditions are not just defined by symptoms: they also have physical findings and laboratory abnormalities. Admittedly, only the patient can tell us whether he is experiencing pain, depression, etc. and we should always listen and believe him. But things like changes in behavior, medication use, and Parkinsonian tremor can be observed by others, and autoimmune disorders can be followed with blood tests.

Should patient-preferred outcomes be our goal? Do we really want to offer any treatment that makes the patient feel better? Penn Jillette famously said, “If all you want is to feel better, take heroin.” What if you carry the patient-centered concept to its extreme? What if a patient prefers high doses of heroin for headaches, or antibiotics for a cold, or demands unnecessary surgery? Apotemnophiliacs will be happy with the outcome if a normal, healthy limb is amputated. Heroin makes people feel euphoric, patients who get a prescription for antibiotics feel better than if they become angry because their wishes are thwarted, and a patient might feel reassured if an unnecessary exploratory laparotomy finds nothing wrong. Should that trump the judgment of the physician? I think not!

Doctors are consulted because they have expert knowledge. They have a responsibility to educate and advise patients and to work with them, taking their personal preferences into account, to do what’s in their best interest, not just what they think they want. Medicine is not like a retail store where the customer is always right. Placebos are unethical, and deception tends to undermine the doctor/patient relationship.

Just how powerful is the placebo?

The placebo has been highly over-rated. One writer even said it was proof that God exists. It has been claimed that one-third of all illnesses can be cured with placebo, but that’s not true. It’s a misunderstanding of a 1955 study by Henry Beecher. He looked at studies with a placebo arm and found that on average, one-third of subjects in the placebo arm reported improvement. But those subjects were not all experiencing placebo effects; some of them would have reported improvement with no treatment, due to the natural course of the disease or other factors.

Two later studies by Hrobjartsson and Gotzsche in 2001 and 2010 looked at studies that included both a placebo arm and a no treatment arm and concluded that:

We did not find that placebo interventions have important clinical effects in general. However, in certain settings placebo interventions can influence patient-reported outcomes, especially pain and nausea, though it is difficult to distinguish patient-reported effects of placebo from biased reporting. The effect on pain varied, even among trials with low risk of bias, from negligible to clinically important. Variations in the effect of placebo were partly explained by variations in how trials were conducted and how patients were informed.

In their opinion, there is no place for the use of placebos outside of clinical research studies. Placebos may relieve headaches, but they can’t cure cancer or pneumonia. Antibiotics work just as well if the patient is asleep or in a coma; placebos only work if the patient is awake and knows he has been given something.

There’s not just one placebo effect, but a number of different placebo responses that work by different mechanisms including anxiety reduction, expectation, activation of the brain’s reward centers, conditioning, and learning. Fabrizio Benedetti has been doing exciting research on placebos, studying the physiological changes that occur when someone responds to a placebo. He also believes there is no place for placebos in clinical practice.

The stages in CAM reasoning

CAM advocates tend to pass through these stages:

  1. They accept testimonial evidence and see no need for scientific testing.
  2. They recognize that the scientific community will not accept their claims without scientific testing.
  3. They do some studies.
  4. When flaws in the studies are pointed out, they try to do better studies.
  5. A systematic analysis of all studies fails to support their claims.
  6. They are forced to admit that there is no convincing scientific evidence that their treatment works better than placebo.
  7. They argue that even if the treatment is only a placebo, it should be used for its placebo benefit.
  8. They argue that placebos are “effective” and that it is acceptable to lie to patients.

What’s the harm?

Val Jones coined the word “shruggie” to denote doctors who think alternative medicine is harmless and is not worth fighting. We think the “shruggies” are wrong.

Is there any harm in telling a patient that an ineffective treatment has real objective benefits? I would argue that this constitutes lying, is unethical, and undermines the doctor/patient relationship. If a patient finds out that the doctor has fooled him with a sugar pill, he won’t be able to trust the doctor again.

What if the patient is already using an ineffective treatment and believes it is helping him? We should ask if it is exposing the patient to a significant likelihood of harm. We should ask if the patient is using it instead of other treatments that have been proven to work or that might be lifesaving. If the answers to both questions are “no,” it is kinder and more humane not to challenge the patient’s belief.

We should have firm rules about evidence-based medicine and ethical principles, but there are times when the rules should be broken in the name of common sense and empathy. What if an 80-year-old woman has been getting monthly B12 shots for 40 years and is convinced she needs them, even though science tells us there is absolutely no legitimate medical indication for her to get them? It’s very unlikely that we could say anything that would change her belief. Challenging her belief will only cause her distress. If we deny her request, she will get the shots elsewhere. It’s not likely that the shots will harm her, and getting the shots is comforting to her and makes her feel better. In that case, I would break the rules and let her have the shots. I would feel a small twinge of guilt for breaking the rules, and we should feel that guilt whenever we break the rules, to minimize the chances of getting on a slippery slope and breaking them when we shouldn’t. We should break them only with very good reasons with which other reasonable people would likely agree.

So in individual, select cases, belief in ineffective treatments is relatively harmless and need not be confronted. But in general, false beliefs can do a lot of harm. There is a whole website, What’s the Harm, devoted to the harm that false beliefs can do. So far, it has compiled reports of 368,379 people killed, 306,096 injured and over $2,815,931,000 in economic damages. Please go there and look at some of the accounts of patients who have died or suffered serious consequences because of false medical beliefs about everything from acupuncture to vitamin megadoses.

The concept of comfort measures

What does “effective” mean? It’s important to understand the difference between objective outcomes and patient perceptions. We can conclude from the evidence that acupuncture is merely a theatrical placebo. We can conclude that it would be unethical for us to recommend it. But if a patient is already using acupuncture and feels it is effective in relieving his symptoms, that falls into the category of comfort measures, where the patient is deriving a degree of comfort from a procedure with no objective effects. Things like backrubs, fluffing pillows, and spending time listening to patients don’t cure disease, but they do provide comfort. No one wants to deny patients that kind of comfort. If the patient asks us about acupuncture or another objectively ineffective treatment, we can answer honestly with the negative scientific evidence while also acknowledging that some patients think they derive subjective comfort from it and that there is little chance of harm.

Conclusions

  • Placebos don’t really do much.
  • Placebos have no place in clinical practice. They are unethical.
  • Accepting false beliefs can harm and even kill. Using ineffective treatments can delay or interfere with effective conventional treatment.
  • Science-based medicine is the only reliable basis of establishing the safety and effectiveness of a treatment and developing rules for clinical practice, but we can sometimes justify bending those rules in the interests of patient comfort. Rigorous science can be tempered by common sense, benevolence, and empathy.
  • We can offer the patient comfort measures that will not change the course of the illness, as long as they are clearly identified as comfort measures with no false promises of therapeutic benefit.
  • We shouldn’t offer placebos, but we can sometimes condone them.
  • There is a fine line to walk between doing what patients think they want and what is in their best interests in the long run.

—————————-

Additions to the list in Part 1

31. X is officially approved by…so it must work.
They cite some organization or authority. It may be Medicare, insurance companies, state licensing boards for acupuncture/chiropractic/naturopathy, the WHO, the courts, specific hospitals/clinics, individual doctors or experts. Also: the NCCAM is studying it, so there must be something to it.

This is similar to #7, the argument from popularity. It is a logical fallacy called the argument from authority. These organizations are not authorities when it comes to scientific truth; often they are not even experts in science. They are influenced by factors like politics, expediency, customer demand, economics, lobbyists, legal maneuvering, etc. No matter how many authorities approve of a treatment, it must still be properly tested to determine safety and efficacy.

32. I can’t afford conventional medicine; CAM costs less.
If it costs less but doesn’t work, that’s false economy.

33. Studies show it doesn’t work, but what if it only works for me and a small minority of people like me?
That’s possible, but not very probable. If it worked for a significant minority of people, that would have shown up in the data, would have affected the statistics, and would have changed the outcome of the study. If the minority was too small to affect the study outcome, what’s the likelihood that you would be one of the special few that it actually worked for? The odds are against it, and there is no rational way to choose the one that might work for you out of all the various treatments that have been tested and shown to be ineffective.

34. My doctor said nothing was wrong with me, but my CAM provider did a test conventional medicine doesn’t do, and found a condition that needed to be treated.
How do you know it’s not one of the many bogus tests and bogus diagnoses that abound in the world of CAM?

35. Conventional medicine doesn’t have an effective treatment for my disease.
CAM doesn’t either. They may tell you they do, but they will only offer false hope and waste your time and money. Maybe it’s time to accept that there is no effective treatment and concentrate on finding ways to cope and improve your quality of life.

36. Why do you concentrate so obsessively on CAM instead of attacking the abuses of conventional medicine and Big Pharma?
This is sometimes phrased as “why don’t you put your own house in order before you criticize others?” We do frequently write about Big Pharma and about conventional medical practices. We don’t emphasize that, because conventional medicine is constantly criticizing and policing itself. Current practices are continually being re-evaluated and discarded if they are found ineffective. We concentrate on CAM because there is no such tradition of self-criticism in CAM, because they never reject any treatment when the evidence shows it doesn’t work, and because hardly anyone is writing critically about CAM.

This criticism amounts to saying “Why don’t you blog about what I consider to be important?” And the easy answer is: it’s not your blog, it’s ours. We get to decide.

Posted in: Medical Ethics, Science and Medicine

Leave a Comment (99) ↓

99 thoughts on “Answering Our Critics, Part 2 of 2: What’s the Harm?

  1. Discussant says:

    Thanks for this great article. I have two objections, however:

    1. Silence when a patient discusses a treatment in the presence of a doctor during an appointment is tacit approval/endorsement, and more akin to the unethical lying situations. A patient could reasonably expect a doctor to correct her if she stated aloud that her acupuncture or vitamin injections are part of her health routine if the doctor does not in fact believe it’s worthwhile or helpful. The doctor could acknowledge that the treatment may be harmless and say it’s okay to carry on if it’s comforting, but, again, pure silence may be reasonably misinterpreted as approval in this context.

    2. As long as the doctor gives her honest assessment and recommendation about the efficacy and safety of a treatment, then it should be up to the patient to decide what risks she wishes to take with her own body and health. As long as you clearly tell the (adult) patient that the treatment (e.g., antibiotics for a cold) is useless and/or harmful and that you do *not* recommend taking it, then at that point it should be up to the adult patient to do whatever she chooses with her own body.

    1. DugganSC says:

      On your latter point, I don’t know that I wholly agree. Prescribing antibiotics for a cold isn’t just a matter of the patient; it’s also risking encouraging antibiotic-resistant strains of bacteria. And past that, while a doctor certainly cannot forbid a patient from an ineffective (or even harmful) treatment, the insurance company (or government) should have the right to state that they will not fund it. I’d argue that the doctor should also have the right to say “OK, but if you continue sticking needles in yourself / administering Dr. Phil’s home electroshock therapy / praying to the Flying Spaghetti Monster, I’m going to have to wash my hands of you and insist you find another doctor”, except that a) that smacks of bullying and threats (where else will the patient go?) and b) you can get into some thorny religious/philosophical issues (what happens when a doctor decides that he won’t treat his religious patients? Or decides that he won’t treat atheists, vegans, Scientologists, etc?).

      1. Discussant says:

        Good points about the costs that extend beyond the individual patient, e.g., encouraging antibiotic-resistant strains of bacteria and taxpayer dollars/insurance premiums. Those factors should indeed be taken into account. The important thing is that doctors handle these situations in accordance with principles of honesty and transparency rather than paternalism and force.

    2. WilliamLawrenceUtridge says:

      Agree with Duggan SC. The doctor’s role as gatekeeper is important here, since it is unlikely the patient will bear the consequences of antibiotic resistance but society inevitably will. On that point only, the rest of his post is far too fraught for a wee thinker like myself.

      I do think that it would behoove doctors to take a weekend course in acupuncture (hear me out, PLEASE STOP SHOUTING AND PUT DOWN THE PITCHFORKS!!!) as they are in a good position to deliver this as a form of adjuvant treatment, many insurance companies reimburse for it, the benefits are still on the borderline as possibly beyond placebo, it does help with pain (even if placebo, it still tends to be a “powerful” one for the purely subjective symptom of pain), they are unlikely to puncture a lung or damage a nerve, they are extremely likely to clean the wound site and wear gloves, and they can use it as a form of complementary care that is part of conventional care. I would want it to be a doctor-specific, ideally skeptic-delivered course that dispenses with the nonsense of “great age”, qi and fake diagnosis.

      A controversial position perhaps, but one that I think can be at least considered.

      1. DevoutCatalyst says:

        The honorable WLU:

        Why insert needles at all in your plan ?

        1. WilliamLawrenceUtridge says:

          Ah, yes, thanks for the prompt. In the past I have suggested that very option, a form of acupuncture predicated on guide tubes and toothpicks (or retracting needles), and that would be an ideal form in terms of patient safety.*

          *Though deep in the darkest recesses of my hidden heart, I suspect that eventually non-naive patients would be able to distinguish between penetration and nonpenetrating shams.**

          **Who would suspect a secret weakness, a pet theory, from I, such a mouthy skeptic? Look away, for I am hideous. Please, pick up your pitchforks and torches. Burn the monster!!!

          1. Agitato says:

            WilliamLawrenceUtridge! I am truly truly shocked. What secret will you reveal next? That you ‘cook’ Blue Meth in an old RV in Algonquin Park?

          2. WilliamLawrenceUtridge says:

            What can I say, I do this for me. I like it. I’m good at it.

        2. mousethatroared says:

          I say throw some ink on those needles. I fancy a nice classy bit of script along with my pain relief.

          http://tattoospedia.com/bird-tattoos-for-men-tumblr/

      2. Harriet Hall says:

        I think that’s a bad idea, since it would tend to reinforce the public perception of acupuncture as effective.
        I suppose you could offer acupuncture as a placebo “comfort measure” and make that clear to the patient, but why not find some other kind of comfort measure that doesn’t carry the kind of baggage acupuncture does?
        And I personally couldn’t do acupuncture with a straight face.

        1. vadaisy says:

          Physicians should make it clear to the patient that acupuncture is merely a placebo, as Dr. Hall stated. They should explain to the patients how placebos work. I would guess that most patients do not have an in-depth understanding of the placebo effect and might be offended if their physician only told them that they were being fooled by a useless treatment or product. Is there a concise and easy to understand explanation of the placebo effect that physicians could reference as a patient educational tool? If so, a means to inform physicians of the educational tool is in order.

          Patients should have a right to choose their placebo, if any. If they are not educated as to the placebo effect, they lose this right. More importantly, the marketing of placebos provides a lucrative business model for the colleagues of the referring physician who provide such services. How much of a patient’s money should a physician squander by neglecting to educate them about their placebo use? Perhaps the patients money would be better spent elsewhere for improved housing, food, or caretaker expenses rather than squander it on relatively useless treatments. Sooner or later, the patient will likely learn that they’ve burned through their money and are no better off for it, all under the watchful eyes of their caring physicians.

      3. Andrey Pavlov says:

        I don’t have the time to elaborate, but I disagree with you on this. I have been duking it out with Peter Moran over this exact point. I think that the data show us that even as a theatrical placebo the effect size of acupuncture (or pressure or sham or whatever) is rather small, rather widely variable, and indeed ephemeral. But even moreso, in the same vein as the antibiotic treatment, offering acupuncture would have the inevitable consequence of engendering magical thinking. The problem is there is no way to practically “sterilize” the use of acupuncture from the pseudoscientific aspects since they are so enmeshed and so many practitioners go ahead with that aspect. Plus, it will (IMHO) be an inevitable blemish on our record for having gone ahead with a placebo treatment that is later shown to be pretty worthless and finally eschewed. That sort of thing happening is inevitable but I cannot countenance it happening with foreknowledge.

        1. WilliamLawrenceUtridge says:

          I realize it’s an especially controversial point on this blog. And my opinion is wholly uninformed by any experience actually practicing medicine. But I think you can give acupuncture while simultaneously discouraging magical thinking and giving reasonable hypothetical mechanisms that are science-based. I made it in a comment some months back, but it’s down the memory hole and I don’t recall the page. Basically it can be described from a physiological perspective rather than the magical one used by quacks (and I would phrase it in those exact terms – “acupuncture isn’t magical, there are some proposed explanations that work purely through existing biological and neurological* processes).

          While I see the principles expressed by the principals (see what I did there?) I still think it’s a valid, workable harm-reduction and patient support strategy. I’m not arguing that the evidence base supports specific effects, as a placebo it’s a more “potent” one (while still doing nothing beyond alleviating symptoms in an unpredictable way) that could be used as a stopgap, harm-reduction measure that could keep patients from going to genuinely harmful lunatics. Better you get it from a doctor who knows what’s really going on than you get it from a quack who swims in delusions.

          Acupuncture is the sole treatment that I would support using in this manner, in part because I still see a tiny window for a possible physiological effect (i.e. a way of reducing symptoms that is not purely cognitive). But I am not a doctor, so it’s easy to say things like this.

          *read – psychological

  2. Dan says:

    Science has many features of a modern religion.

    Due to its sheer complexity and the silo effect, it has the ‘black box’ element common to many religions, in that it often requires something close to faith.

    The public is asked to puts its trust and faith in science and its many technological achievements.

    Many scientists vigorously adhere to their own opinions, and there is an orthodoxy (priesthood, peer review, NIH study sections) that often circles the wagons and makes paradigm shifts more difficult by cracking down on dissension and opposition (exactly as shown by this site, which always claims the higher ground – we are “science-based medicine” – but in more conventional real world terms by the peer review process in grants, publications, tenure and conferences).

    Just as with major religions, dissident groups often split off (in religion called ‘sects’ started by ‘heretics’; in science, called ‘mavericks’ or ‘cranks’, depending on your p.o.v.).

    My only real point here (if I even have one) is that science can’t provide all of the answers, but admittedly we have no alternatives, as ‘common sense’ or ‘mother’s wisdom’ has never worked well (nothing against mothers! :-). It’s like that Churchillian quote about democracies – “Democracy is the worst form of government, except for all those other forms that have been tried from time to time.” Science is the worst religion to believe in except for all the other religions that have been tried from time to time.

    Science, at least as currently practiced by all too frail human beings, has black box complexity, an orthodoxy, institutions, dissident sects, and strongly resists change and perceived threats. To me, that sounds like a religion. Scientists also believe they can know the truth, the full truth, and nothing but the truth, whereas most philosophers will contend that a full understanding of all the truth is impossible – we can only see the shadows on the cave wall, to quote (poorly) from Plato. We can only make approximations and attempt forays into half-understanding of a dimly perceived, dimly lit truth, someplace, somewhere.

    Not that I agree at all with CAM or SCAM. They don’t even have science on their side. But let’s not glorify science or medicine. While it’s the best we have, it’s far from perfect. It is riven by human interests (personal, professional, commercial). I guess there’s no other way though to practice science – we are not robots.

    Sorry for a long and winding rant…

    1. angorarabbit says:

      Boy, I’m glad you don’t work in my research lab, because you wouldn’t last long. Science is not a religion; the entire point is to smash dogma and not to blindly accept the accepted. If I smash dogma, my name gets announced next week as a Nobel Prize recipient. Whoopee! If that happened in religion, the Pope would excommunicate me. Big difference.

      If I smash dogma, I get the cover of Science, Nature or Cell. If I suck up to the majority, I’m in a backwater journal. If my student smashes my dogma, she gets a paper in a better journal, because he’s smarter than I am (and should be, since it’s her project). As I think Asimov famously said, the best phrase in science isn’t “eureka!” but ” Hmm, that’s funny.” That’s when you’re about to learn something really cool.*

      Having said that, like Harry Truman, scientists are Missourians and you have to “show me the data.” Good ideas are good ideas, but you absolutely must have the data to back them up, otherwise, as the cartoon above my desk says, “It’s a thought experiment.” I see lots of good ideas at study section (where we review proposals) but good idea is only part of our scoring system. There’s an explicit box for innovation, and for extended awards, preliminary data are essential. (There’s a separate type of award for “exploratory” research that doesn’t required preliminary data.)

      To me, this is the cry of someone who either doesn’t actually play in our sandbox, or didn’t get it and is now miserable. Which is too bad, because science is a blast.

      * Example: we’ve been doing a pile of transciptome sequencing, and our biggest cluster change (10-48 signif, no less) is a housekeeping gene family. I was so sad. Till I started reading about it. And we’ve uncovered a possible novel mechanism out of left field to explain our data. Yippee!

      1. mousethatroared says:

        I like this comment. (It doesn’t have the same effect without the button, oh well).

      2. Chris says:

        Ditto. It was great.

      3. Andrey Pavlov says:

        Agreed. Well said Angorarabit .

        I just wish folks would finally understand that the way to get famous in science is to actually prove everyone else wrong. It is just that we have high standards and you really have to take your lumps and run the gauntlet before you get there. But if you do – and it does happen! – then you are at the top of the heap.

    2. WilliamLawrenceUtridge says:

      Science works on trust, not faith. In principle, anyone can develop the expertise and read the primary literature to confirm the contents of the black box in any silo. Scientists defer to (trust) experts and specialists within the silo to ensure the rigor and validity of their peers work. All facts can be confirmed by the right person, with the right knowledge, and the right resources, replicating the experiment (this usually occurs in the context of replication and extension though).

      To the public the enterprise may appear opaque and inscrutable, but that is a limitation of the public, not science as a whole.

      Your opinions regarding the “uncrackability” of paradigms is not really bourne out by historical examples. The structure of DNA was readily adopted, the change from the antacid treatment of ulcers to the use of antibiotics occurred rather quickly. The problem is, we don’t necessarily need to change paradigms much anymore, we already know much about the human body and universe, and a new paradigm must always account for this information as well as adding new predictions. The fact that we don’t have dramatic swings in knowledge is a feature, not a bug (and the fact that the lay press does emphasize minor changes as if they were major swings is a bug in that process).

      Your whole point fails overall due to the empirical nature of science; it rests on data, not faith. Mavericks and cranks are rejected because they provide inferior, or no data to support their assertions. And I believe your statement that scientists think they can know the truth is also wrong; every book on, course and discussion of epistemology I have ever participated in has emphasized the tentative nature of knowledge and the importance of falsification over confirmation. Statistical tests are set up this way – “fail to reject the null” is the term used, emphasizing the default nature of the null, no effect, hypothesis.

      Let’s glorify science and medicine as the best way ever discovered to know more about the universe and its constituents, including humans.

    3. Carl says:

      Dan said:
      “Sorry for a long and winding rant…”

      It’s not the length, it’s the stupidity. Pity that people so rarely apologize for that.

  3. Kate Rauner says:

    I put a note in my calendar to look for this post when it was scheduled to come out. The placebo effect has confused me and I appreciate the clear explanation and links. Now I have something to show my friends who push “alternative medicine.” I think part of the problem science has is: you can’t ethically do the experiments on people you do on mice.

  4. krelnik says:

    Thanks for the plug of my website (What’s the Harm)! Always appreciated. For those interested in the latest similar stories in the news, we also have a Twitter feed at @WhatsTheHarm.

    1. WilliamLawrenceUtridge says:

      Echoing MTR, this site needs a like button, so I can like this comment :)

  5. “What if the patient is already using an ineffective treatment and believes it is helping him? [...] If the answers to both questions are “no,” it is kinder and more humane not to challenge the patient’s belief.”

    ” …I would break the rules and let her have the shots”

    “We shouldn’t offer placebos, but we can sometimes condone them.”

    “So in individual, select cases, belief in ineffective treatments is relatively harmless and need not be confronted”

    Groups are made up of collections of individuals. Individual, select cases aren’t necessarily unique such that these individual, select cases don’t create a collective phenomenon. Individually, prescribing an antibiotic for a viral infection to put a patient/parent at ease is relatively harmless but collectively leads to antibiotic resistant bacteria.

    My question with these approaches is how do you balance the risk of upsetting/losing the patient with the risk of bolstering the perception of:

    “Well, my doctor knows about it and they didn’t say anything negative about it, so it must be OK (safe and effective), right?”

    (Related to #31)
    -Argument from lack of authoritative negative feedback/ inferred authoritative support?

    Not being a medical professional, I don’t have to deal with these questions and dilemmas, and I have the luxury of never having to put my idealized position to actual, practical application.

    1. Harriet Hall says:

      I make a distinction between an active act of granting a patient’s wishes, like prescribing an antibiotic for a cold, which might indirectly affect others and which I don’t condone, and the passive stance of not interfering when a patient is already using CAM and thinks it is helping and there is no impact on others.

      I agree that the doctor has some responsibility to not let a patient assume he agrees that the ineffective treatment really works, but this has to be tempered with one’s knowledge of the individual patient and how he is likely to react. We adapt other explanations and prognoses (of things like cancer or diabetes) to the patient’s educational level, temperament, and psychology all the time. Sometimes it might be sufficient to say “That’s not a treatment I would have chosen, but OK.” Sometimes a discussion of your reasoning and the scientific evidence is appropriate. Sometimes it may be appropriate to simply keep silent.

      Science is certainly not a religion, and I should have put that meme on the list. Our commenters have already said what I would have said about it.

  6. mousethatroared says:

    Thanks for a thoughtful piece HH. I think it outlines a well balanced approach.

    There is so much talk about placebo use for comfort measures, I’d like to see a effectiveness/cost/time comparison between some common placebos and other medical or lifestyle interventions that help patients cope with chronic symptoms.

  7. davidrlogan says:

    Hi Dr. Hall,

    Thanks for these. For the sake of discussion, I do think there is one good criticism of SBM: sometimes I think you (the contribs) give your everyday-MD credit they don’t necessarily deserve just because YOU deserve that credit. For examples, the health care providers I’ve dealt with (admittedly anecdotal) are not going to painstakingly research a 10000 word post like you or Dr. Gorski…nor will they spend their free time thinking about massively-parallel next generation sequencing (Gorski again!)

    As I once pointed, even the commentariat is not representative of your *typical* professional or wannabe professional (and whatever happened to NYBGRUS?) I dare say Windriven or WLU is more informed about, say, vaccination than the vast majority of health professionals…and Angora Rabbit is clearly an uber-nerd who goes far far beyond the thoughtfulness and rigor of your *typical* med student or professional.

    What do you (or what does anyone) think? My comment should not be seen as an endorsement of SCAM. I am only pointing out how unique are you and much of our community!

    1. vadaisy says:

      Thanks for these. For the sake of discussion, I do think there is one good criticism of SBM: sometimes I think you (the contribs) give your everyday-MD credit they don’t necessarily deserve just because YOU deserve that credit.

      I second that “Thanks” as well as the criticism. I’ve come to use the information I learn here on SBM as educational points with physicians. There appears to be a disconnect of sorts between the level of medical skill and overall quality of care I perceive as being offered by most of the bloggers here and some of the posters, such as nybgrus and winddriven, as compared to the vast majority of the physicians I encounter on an more personal and direct level.

      It would be interesting to learn why such a difference in apparent skill level appears to be happening to such a profound degree. Is it happening in all areas of the country and throughout the world? Are there clusters of ‘bad’ doctors, perhaps those trained in certain geographic areas or fields of study, working for certain hospitals or healthcare systems, or associated with certain groups and organizations?

      1. Andrey Pavlov says:

        I commented above to davidrlogan, but thank you for the kind words. And in case it was missed, I am NYBGRUS posting without anonymity these days.

    2. Harriet Hall says:

      I don’t think we are giving anyone credit. We are trying to show what constitutes good science-based medicine. Obviously, not everyone lives up to the ideal. There are shruggies, there are MDs who don’t understand the scientific method, there are those who understand it but choose to ignore it, and there are those who are too overworked to keep up with evolving knowledge. I would hope that some of those will be helped by what we write here. Perhaps you could steer your health care providers to the blog, or maybe print out pertinent articles to show them.

      1. davidrlogan says:

        Thanks for the reply, Dr. Hall. I was not careful with my words: I meant “credit” as a sort of catch-all for what I said in the rest of my comment. If “credit” means what it normally does, then I agree SBM doesn’t give those providers credit. I should have just said what was on my mind without trying to start with a thesis sentence!

        Unfortunately I don’t have the sort of personality by which I would give an MD an article from SBM! But it has helped me tremendously and like any good information has traveled through me to others.

        Have a good night!

    3. WilliamLawrenceUtridge says:

      Most PCP (real ones, not quacks) probably don’t have to deal with most of these issues. Vaccination is probably the exception, but it’s also prominently addressed by agencies like the CDC. CAM isn’t that popular, protestations to the contrary being wrong.

      Really, most PCP do pretty much what SBM contributors do at a different level of abstraction – they look for consensus statements, systematic reviews, CME training and other structures put in place to ensure new treatment modalities are adopted or old ones. For the most part, this is a pretty good way to keep up with the literature. CAM is an exception because it’s a perversion and subversion of a primary support of medicine, prior probability (a support that is implicit in all conventional medicine, which is why most people don’t notice its absence).

      1. vadaisy says:

        CAM isn’t that popular, protestations to the contrary being wrong.

        I disagree. If this were true, then most PCPs are wearing blinders. Admittedly, this seems to be the case. Blinders are more comfortable for many, as compared to speaking out against their colleagues’ mistreatment of patients. Just my opinion.

        1. WilliamLawrenceUtridge says:

          There was a post a while back dissecting studies claiming that CAM was popular. From my recall, it’s only popular if you include things that aren’t CAM (massage, which isn’t CAM if you’re using it for muskuloskeletal pain and dysfunction). The real CAM, and in particular the crazy CAMs like homeopathy, were quite rare. I think Dr. Crislip wrote it.

    4. Andrey Pavlov says:

      @davidrlogan:

      Thanks for the kind shout out. BTW, I am NYBGRUS – I did take a rather long hiatus in order to wrap up some research work and study for my last board exam, but when I came back I dropped the ‘nym since I figured I don’t really have anything to hide nor am I ashamed of what I have to say (or have said). Plus, a number of people managed to make the connection anyways.

      Nowadays, however, I do post less in large part because I am busier wrapping up a lot of projects and applying for my residency but also because I find that many of the posts here don’t coincide with what I need to be learning quite as much these days. Many of them are a very useful reference for me on many topics but many of them are basic lessons in scientific and medical skepticism which was extremely useful for me in the early part of my medical education but becoming less and less so these days. Which means that in the past my time spent here reading and commenting extensively actually helped me study and prepare for exams and patient encounters, but now is more of a luxury that I get to do. I still read all the articles, but some I skim. I just comment less these days.

      Once life settles down a bit more for me (I start neurosurgery next week so who knows when that will happen) I’d actually like to write a bit more for SBM. I have a couple of articles in the wings that I’ve researched and just need to flesh out.

      As for the “typical” types that you refer to, once again, thank you. And yes, I tend to agree. When I chat with some of my classmates about medicine in front of my fiance she gets wide eyed and exclaims she will never see a doctor I don’t recommend again. Obviously she is over reacting a bit since we tend to be nit picky and have a selection bias in the stories we focus on, but I agree that most physicians I have interacted with don’t really go that extra mile to really think about things in as great a detail as I think we all should. Part of that is because the typical schedule is very hectic and there is little time for it so if you don’t already value it, it is simply much easier not to do so. Part of it is because of the way we are trained (not saying there is necessarily a better way) in that “how I was trained” becomes very powerful. Something wrong that an attending or resident taught you is very hard to unlearn. And part of it is for the same reason that many otherwise intelligent and critically thinking people are still religious – they just don’t shine that same critical light on every claim placed in front of them.

      1. Chris says:

        Good luck to you. Plus, do concentrate on your real life.

        “When I chat with some of my classmates about medicine in front of my fiance she gets wide eyed and exclaims she will never see a doctor I don’t recommend again.”

        Give her a hug. I emphasize with her. And that is not just because she is also an aerospace engineer like I used to be (okay, that is part of it!).

        1. Andrey Pavlov says:

          Thanks Chris. She is now on a lovely (in the short term, scary for the long term) paid vacation thanks to our ridiculous government. Thankfully she is not actually a NASA employee but a NASA contractor so she gets paid, but her facility is shut down so she can’t work. Don’t know what that may mean in the long term.

  8. MHO says:

    ” the passive stance of not interfering when a patient is already using CAM and thinks it is helping and there is no impact on others.”–

    If you are interpreting “no impact on others” to mean something like, not spreading of disease to unprotected individuals, then allowing patients to pursue CAM without comment is might be satisfactory..
    However, there can be a big impact on families financially when a cancer patient, for example, spends 3 of her final 12 weeks, and $8000 flying to Germany for hyperthermia. That money would make a nice contribution to a grandchild’s college fund. There is a big impact when research centers waste clinic space and administrative personnel by for example, supporting acupuncturists.
    There is a fear that patients would move outside mainstream medicine, or not tell their doctors what they’re doing that might interfere with say, chemotherapy. So? Those people are already disinclined “to follow doctors orders.” There are patients who are not committed to CAM, but are pursuing it in the hopes of doing something extra to increase the chances of good health, and those people need the information you have about CAM’s ineffectiveness.
    Its patronizing to assume patients, if they are fully informed, would make the wrong choice (i.e. continuing with CAM). IF, after its been suggested to them that there is information that disconfirms CAM, they still choose to do it, well ok.

    1. WilliamLawrenceUtridge says:

      …flying to Germany for hyperthermia

      Ok, there’s this thing called a “bath”…

  9. Harriet Hall says:

    You provide two good examples of what I meant by harm and of impact on others. Of course we should speak up in cases like those. Patient autonomy is important, but they can only exercise true autonomy if they know the facts and can give informed consent.

  10. pmoran says:

    Harriet: “6.They are forced to admit that there is no convincing scientific evidence that their treatment works better than placebo.
    7.They argue that even if the treatment is only a placebo, it should be used for its placebo benefit.
    8.They argue that placebos are “effective” and that it is acceptable to lie to patients.”

    In the interests of uncovering the reality in all this, I suggest you try and find a CAM practitioner who admits to 6, or who will allow that their practice is based upon 7 or 8.

    They may well ask ” what would it matter if the benefits are placebo?”, but that is a question that we expose ourselves to with our allegation that “it IS all placebo”. It is by no means an admission of the fact.

    They also know that such an admission would be devastating for their practice. There is no question that medical sceptics would make much of it.

    At most they will attribute their successes to “mind-body medicine”, or their ” holism”, or other euphemisms for what they may deep down understand is a collection of mainly non-specific therapeutic influences (that may be inclusive of placebo responses, but patients do bring a spectrum of needs into medical interactions and all may influence outcomes)”.

    Others will try and preserve a small scientific loophole. If you “know it works”, you don’t care about much else.

    So Harriet has described SBM’s distinctive and interpretation of rather subtle but important matters. This analysis enables the demeaning of all CAM practitioners as being quite self-aware in wanting to put one over the public, while also willing to embrace what we deem to be unethical behaviour..

    A contrary view, which might foster more fruitful engagements on CAM matters in many quarters, is that many or most CAM practitioners do believe quite strongly in what they are doing, as per a well-documented phenomenon that occurs as strongly in the mainstream as within CAM.

    1. Harriet Hall says:

      @pmoran,

      “In the interests of uncovering the reality in all this, I suggest you try and find a CAM practitioner who admits to 6, or who will allow that their practice is based upon 7 or 8”

      They won’t volunteer that, but they will admit to 6 and argue for 7 or 8 when bested in an argument or when trying to rationalize about a negative study. We’ve seen many examples in these pages, where a study author or editorial writer admits that his evidence is poor, yet recommends continued use even without better evidence. They say some version of “even though it may not work, it won’t do any harm and is worth trying.” I’ve also had long e-mail exchanges with CAM providers who say even if multiple good quality studies provided strong evidence that their pet method didn’t work, they would keep doing it anyway because their patients seemed to like it. And we’ve seen several studies that refused to use a sham acupuncture placebo control because they claimed sham acupuncture must also be effective because studies had shown it was just as effective as real acupuncture! (Getting it exactly backwards, of course.)

      Here are just a couple of examples. There are better ones, but I don’t have the time to search for them at the moment.

      1. When an uncontrolled study of acupuncture for lymphedema found only a modest effect, the author admitted that she couldn’t know whether acupuncture was responsible for the improvement and that better studies were needed, but she recommended that acupuncture be considered for patients with lymphedema anyway. http://www.sciencebasedmedicine.org/a-trilogy-of-acupuncture-terror/

      2. This Cochrane review found no difference for an effect of “true” over sham acupuncture, yet recommended acupuncture be considered a treatment option for migraine. http://www.ncbi.nlm.nih.gov/pubmed/19160193
      ———
      “They may well ask ” what would it matter if the benefits are placebo?”

      Yes, they ask that when they are backed into a corner. They are essentially accepting our allegation that it is a placebo and trying to justify what they are doing. They wouldn’t need to ask that if they could prove to us or to themselves that it was more than a placebo. They are willing to lie to patients in that they misrepresent the state of the evidence as far more favorable than it really is.
      ——-
      “the demeaning of all CAM practitioners as being quite self-aware in wanting to put one over the public”

      Not at all. I quite agree with you that “most CAM practitioners do believe quite strongly in what they are doing.” And I haven’t found that recognizing that has ever led to “more fruitful engagements.” In fact it leads me to want to disengage with someone whose paradigm is too different for us ever to have a meeting of the minds.
      ——–
      I find it curious that you didn’t comment on what I said about condoning CAM in certain situations, about offering treatments that served as “comfort measures” with full disclosure that they were not expected to change the outcome of the disease, and about being humane and kind to the patient, empathetic to their human needs instead of just to rigorous scientific standards. I would have thought that was right in line with what you have been advocating in all your posts.

      1. pmoran says:

        Harriet you are admirable in what you do, and you do think more like me than some. I am already regretting being picky.

        By way of apology and explanation for my annoyingness, I think that i have been in this game too long, and talked to so many people, and listened in on too many discussions. I rightly or wrongly have the notion that I can actually think like a CAM user or practitioner.

        Thus, again rightly or wrongly I keep seeing subtle and sometimes not-so-subtle misreads of aspects of CAM. I cannot help saying what I think, when concerned that these have the potential to devalue our discourse, but I don’t mind at all if you look upon what I say as merely food for thought. .

        Thus, I am not sure that you have demonstrated that CAM practitioners ever publicly admit that what they do is all placebo. You are putting words in their mouths, ones they would definitely never use, such as ” it is OK to lie to patients”.

        You quote a couple of acupuncture studies wherein the authors advocate continued use of acupuncture despite not conforming to OUR scientific expectations. These are poor examples, because even those acupuncturists who accept the results of sham comparisons like to think of both sham acupuncture and “real” acupuncture as exerting a variety of therapeutic influences (relaxation, distraction etc) in addition to placebo. This is indeed yet another fall-back position for those who believe that it works (somehow), but it is not an easy one to refute.

        This is why the abstract of the second article contains this justification for the continued use of acupuncture despite conventionally “negative” results . —

        “Available studies suggest that acupuncture is at least as effective as, or possibly more effective than, prophylactic drug treatment, and has fewer adverse effects.”

        Such studies exist. They are one of the reasons that we should be thinking very carefully about the whole question of what makes a therapeutic intervention “effective”.

        Even Hrobjartsson is not sure what his meta-analysis means (from the discussion) –

        ” It is a question of definition whether the effect of a placebo intervention equals the ‘placebo effect’, as this term is sometimes also used for other aspects of the patient–provider interaction, for example psychologically mediated effects in general, the effect of suggestion, the effect of expectancies, the effect of patients’ experience of meaning, etc. [3]. Patients in a no-treatment group also interact with treatment providers, and the patients are therefore only truly untreated with respect to receiving a placebo intervention. Hence, our results do not exclude the possibility that other aspects of the patient–provider interaction, or interactions between the treatment ritual and different ways of informing patients, could have clinically useful effects.”

        1. Harriet Hall says:

          @pmoran,
          “do not exclude the possibility that other aspects of the patient–provider interaction, or interactions between the treatment ritual and different ways of informing patients, could have clinically useful effects.”
          They don’t exclude the possibility that the controls were not adequate to rule out confounders. They don’t exclude the possibility that their results are simply wrong, since we know from Ioannidis that half of all studies are wrong, and more than half when a treatment is improbable and researcher bias is high. Neither do they rule out the possibility that a supernatural acupuncture fairy magically comes to the aid of the patient whenever a needle is inserted. :-)

          If “other aspects” or interactions or different ways of informing patients have clinically useful effects, they need to be tested just like any drug must be tested before we can conclude it is clinically useful. Otherwise, it’s just idle speculation, not sufficient to base treatment recommendations on.

  11. pmoran says:

    Re: the albuterol/placebo study.

    The startling thing about this study was the strength of effect within the placebo and acupuncture arms, which is accord with numerous other studies showing apparently strong responses of asthma to placebo (especially sham surgery).

    It is agreed that this might pose dangers in the unlikely event that an exceptionally foolish patient chose to rely upon a placebo treatment alone for this conditin.

    However, I would however like to make the point that we should be wary about suggesting that placebo responses might be so convincing to asthma patients as to become a very threat their lives, but almost in the same breath say that placebo responses are highly overrated.

    1. mousethatroared says:

      pmoran “However, I would however like to make the point that we should be wary about suggesting that placebo responses might be so convincing to asthma patients as to become a very threat their lives, but almost in the same breath say that placebo responses are highly overrated.”

      It was my understanding that the problem is that ongoing undetected inflammation creates remodeling of the airways that tends to become permanent over time, leading to a more chronic form of asthma than may have developed with more appropriate medical management. If you have a more chronic form of asthma, your risk of death is higher than someone who has a less severe, intermittent form of asthma.

      But it’s been awhile since I read the article, and I might be misunderstanding due to lack of medical expertise.

    2. Angora Rabbit says:

      Look, the people in the asthma study *thought* they were better, but when their lung / breath capacity was actually measured, there was zero improvement.

      What part of It Didn’t Work do you not comprehend?

      From where I am sitting, It Didn’t Work. No matter how the patients *feel*, it is illegal and immoral to pretend otherwise. How dare someone provide a treatment that doesn’t work, when there are treatments that do work.

      1. pmoran says:

        AR: “What part of It Didn’t Work do you not comprehend?”

        The question being addressed by Harriet was the potential of placebo-type treatments to relieve symptoms i.e. “working” in that sense only . If acupuncture can relieve the symptoms of asthma to the degree that it poses dangers it undermines the contention that its non-specific influences are too weak to be bothered too much about in other contexts, where symptom relief may all that is desired.

        Its to do with consistency.

        .

        1. Andrey Pavlov says:

          I just had to jump in here:

          The question being addressed by Harriet was the potential of placebo-type treatments to relieve symptoms i.e. “working” in that sense only . If acupuncture can relieve the symptoms of asthma to the degree that it poses dangers it undermines the contention that its non-specific influences are too weak to be bothered too much about in other contexts, where symptom relief may all that is desired.

          Ever heard of Christian Scientists Peter? They believe their prayer works. To the point where they and their children die from treatable illness. The believe they are better, right up until the point that they believe God decided they should be called up to heaven.

          Its to do with consistency.

          So then prayer “works” and it “works” for the Christian Scientists. So we can’t say it doesn’t and that it is all a theatrical placebo and a trick to fool people into ignoring their symptoms until it is too late.

          Your “consistency” is just a form of dictionary definition pedantry. In other words, it is stupid and simple minded. Like a child who just learned about linear extrapolation and notices that the temperature is beginning to drop in the fall and winter and then concludes that by spring the next year earth will be a frozen and barren wasteland.

          So sure, I’ll agree with you that it “works” but not in any meaningful sense of the word that the vast majority of people would assume the word actually means.

  12. pmoran says:

    “This criticism amounts to saying “Why don’t you blog about what I consider to be important?” And the easy answer is: it’s not your blog, it’s ours. We get to decide.”

    This was/is a straw man, slyly constructed by some to help distract from a matter that deserves a much more sensitive and thoughtful response. I have never heard anyone challenge SBM’s right to blog about what it wants, (although the “science-based” label might suggest considerable internal constraints)..

    This matter (medical and scientific errors and corruption) is a genuine source of wonderment and suspicion to those who perceive CAM to be of little personal threat to them, as nearly all CAM users do — the way they use it, or perceive it.

    So they genuinely do wonder why we attack a preponderance of relatively harmless uses of CAM as aggressively as we do, while thousands of people have potentially been adversely affected by mainstream errors. Our scientific pretensions make this a far more serious betrayal of patient trust in my eyes, and probably also theirs.

    Even if our main interest is bad outcomes from CAM we should be displaying at least equal bitterness about such matters, for nothing fosters the more dangerous uses of CAM than mistrust of mainstream methods and opinion.

    1. Harriet Hall says:

      @pmoran,

      No one has questioned our “right” to blog about what we want; they are criticizing our “choice” of topics and asking us to write about things they think are more important. Which is exactly what you are doing again yourself with this last comment.

      Of course our concentration on CAM is a “genuine source of wonderment” to shruggies and apparently to others like you who don’t fully understand our concerns. It does NOT mean we fail to realize the greater harm of mainstream errors. It does NOT mean we are not bitter about them too. It hasn’t precluded us from addressing topics in mainstream medicine from time to time. Our approach is in NO way a betrayal of patient trust.

      I tried to explain our reasoning. There is a greater need to address CAM topics because they are not being adequately addressed elsewhere. Problems in conventional medicine are addressed elsewhere; conventional medicine has a strong tradition of self-evaluation and self-criticism that is evident in every issue of every major medical journal. Steven Novella wrote about that at the link I provided: http://www.sciencebasedmedicine.org/the-science-of-clinical-trials/

      You think CAM is relatively harmless, and you are right that it doesn’t very often kill or maim; but it is not primarily the “bad outcomes” that concern us, but rather the underlying issues. When faulty reasoning, poor critical thinking skills, scientific illiteracy, and anti-science attitudes are allowed to flourish, the future of our whole society is in jeopardy. As Carl Sagan said “We live in a society absolutely dependent on science and technology and yet have cleverly arranged things so that almost no one understands science and technology. That’s a clear prescription for disaster.”

      The increasing acceptance of pseudoscience and superstition and the growth of quackademic medicine frighten us. In the absence of a 21st century Flexner, we are trying to fight back as best we can. Your constant carping is not helping. We have asked you repeatedly to write a guest post to explain your views once and for all and offer your concrete constructive advice. I would say I’m losing patience, but I lost it long ago.

      1. pmoran says:

        “No one has questioned our “right” to blog about what we want; they are criticizing our “choice” of topics and asking us to write about things they think are more important. Which is exactly what you are doing again yourself with this last comment.”

        No, I am asking that we look at what we are saying more critically. Sift it through other eyes when we can.

        We should by now be cluey enough concerning the CAM mind to avoid fatuous responses to questions that require sensitive and thoughtful comment (as you have done here and elsewhere). The one I was complaining about and that you partially echoed, was actually invoked in response to a commenter question.

        In my view fears of a slippery slope into pseudoscience are nonsense. Communal paranoia like this is inclined to be self-enhancing to the degree that it becomes not conducive to sound, sensible, well-argued and proportionate responses to various challenges.

        I have also pointed out many times that nothing is more hostile to the pseudoscientific content of CAM or more easily understood by ALL of the public than that reported benefits from it in subjective and psychosomatic complaints are due partly to illusion and partly due to a variety of psychogenic influences.

        One of my concerns is that well-meaning, would-be medical sceptics are going to go from here and present a caricature of what is said here and how it is said ( in comments that go unchallenged as much as the main posts) in other places, believing they are now delivering “the one true voice” of science.

        Instead of calmly and confidently presenting a simple, easily digested and supported message such as the above, what will come across is a confusing and distracting mixture of our own highly arguable half-truths ” CAM is fraud, it’s dangerous, it’s useless, its stupid, and the sky will fall if we don’t stop it”.

        BTW, the so-called “shruggie’s” attitude represents the general perception that most CAM use is pretty harmless, and that people might get something out of it. So they cannot get too enthusiastic about a broad frontal assault on something that they also sense is as much a part of human nature as that extraordinary human penchant for superhero and vampire movies. (I think we might as well stamp them out, too, as part of our drive against irrationality and superstition.:-))

        I am not saying that we should encourage CAM, I am asking ” are there simpler and more realistic ways of keeping people safe from its dangers, to the extent that this is possible?”.

        1. Andrey Pavlov says:

          BTW, the so-called “shruggie’s” attitude represents the general perception that most CAM use is pretty harmless, and that people might get something out of it. So they cannot get too enthusiastic about a broad frontal assault on something that they also sense is as much a part of human nature as that extraordinary human penchant for superhero and vampire movies. (I think we might as well stamp them out, too, as part of our drive against irrationality and superstition.:-))

          This is not concordant at all with my experience. Literally every single shruggie I have ever met – and indeed the vast majority of lay people as well – don’t actually have any idea what CAM really is. Not just as a category, but what the specific CAM’s that they have heard about or use are. And in the case of physician and academic shruggies they simply haven’t heard of many of these things. When I discuss with attendings and faculty the concept of CAM and what topics our first and second year lectures include their jaws drop. They simply refuse to believe that any such lecture would or could possibly exist in a medical curriculum. And this is just from the topics discussed. I don’t add my own opinion, just bare statements of fact. When I tell them that Memorial Sloan Kettering Cancer Center offers Reiki and therapeutic touch, they first have to ask what Reiki is and then their jaws drop. They ask how can that be, and I explain that the director of the MSKCC has told me in an email conversation she doesn’t believe reiki to be “energy medicine” but “light touch massage” and they remain befuddled. I once told a surgical attending about our lectures in medical school and he looked straight at me and said that if our school teaches such nonsense he won’t allow us in the OR.

          When discussing homeopathy most people – lay and medical alike – don’t know what it is. They think it is just “holistic” and “herbal” stuff. One of my friends parents’ were using some kind of homeopathic product. They had gone into the pharmacy, saw it on the shelves with claims of efficacy, and bought it. When my friend went home, he saw it and questioned them. They responded by saying it was just some holistic herbal stuff and probably just had some mild “natural” form of a particular active molecule. These people are professional chemists. They believed it wouldn’t be harmful because it was sold OTC and believed it must have some sort of efficacy because it was sold at a pharmacy. When my friend explained what homeopathy actually is and what the “30C” on the bottle actually meant, they were wide eyed. They sputtered that that just doesn’t make sense. They were able to immediately understand that it was ludicrous because they are professional chemists, but even they were duped by the false legitimacy granted by being sold OTC at a pharmacy with unchallenged claims of efficacy. Obviously in their case the harm was minimal, but hopefully even you can see how it can very easily become much more harmful in people who take it to mask and ignore symptoms of much more serious conditions (you know, “working” in Peter’s parlance) or who are much less financially stable and waste their money on something that only lets them mask and ignore (ahem, sorry, “work”) for just a short time. I have had patients who came in for a stomach ache which turned out to be that they simply haven’t eaten in 24 hours because their parents can’t afford food at home. I’d rather those people not waste money on homeopathic products.

          So no, Peter. I’d say you are pretty wrong in your assessment. Not because you are speaking entire untruths, but because you are focusing on the narrowest aspects of the least harmful parts of what is CAM. Well, you also just don’t realize what quackademic medicine actually is and how pervasive it is. You also seem to think that most shruggies do so because they understand what is going on and don’t see the harms that we do – in other words that we are overplaying things. The reality is that most shruggies just don’t know what they are shrugging at! The moment they learn what these things actually are they immediately bristle. Except for the “integrative medicine” folks, I have yet to meet any previous shruggie who continues to think the same way after just having the barest of facts explained about what these CAM modalities actually are.

          Which is why we exist and are so steadfast. It isn’t that we believe we have uncovered some deep truth about the harms of CAM (though yes, I do believe we think about it much more deeply than most people do or would) but because the fundamental principle of CAM and “integrative medicine” is sleight of hand, marketing, and misinformation to fly under the radar. I have never had to convince someone that the harms exist – I have only had to educate them as to what the modalities actually are and where they are being used/taught. Very occasionally I have had longer discussions to try and convince people to be as vocal about it as I am, but that is just icing on the cake. If everyone just understood what the hell it is they are actually talking about I would be sufficiently happy that our “mission” is accomplished. Because that would actually stem the tide.

          And you have already been schooled by MTR and a couple of others as to why multiple tacks and styles is very useful. And indeed why the steadfast and stalwart stance we have here is useful, refreshing, and needed. I absolutely agree it is not solely sufficient, but then again we are not the only people on earth doing this. And even if we were it is not our onus to encompass all styles of approach, particularly when other styles are not our forte. But you keep ignoring those disconfirming comments about the refreshing utility of this site. And yes, falsely and arrogantly believe that you can “put yourself in the mind of and think like a CAM user and practitioner.” You are deluded if you think you can actually think like that. I can’t even begin to wrap my head around “true believers (TM)” because my fundamental thought process and approach to life is so vastly different. You may as well be claiming that you can know what it is like to be a woman. Yet somehow you think that claiming to know how a believer thinks is less stupid and arrogant (though of course you hedge your discourse by admitting you may be wrong, but continue on as if you were right).

          1. pmoran says:

            “And in the case of physician and academic shruggies they simply haven’t heard of many of these things.”

            Then you are not talking about “shruggies”, who are given this demeaning name because they are assumed not to be caring sufficiently enough about matters that we think they should care a lot about.

            They can’t care about matters they know not of.

          2. WilliamLawrenceUtridge says:

            1) This blog needs a “like” button, so I can click it.

            2) Andrey’s comment strongly underscores the importance of medical doctors acting as gatekeepers for their patients (and how teaching CAM as anything but an exercise in critical thinking is a betrayal of that hugely important role).

            3) “Shruggies” are given this “demeaning” name not out of contempt, or an assumption that they don’t care. “Shruggies” simply don’t think CAM is much of a risk for their patients (and they’re right – as long as they’re still following doctors orders, it is truly complementary and at worst a waste of money). “Shruggies” are probably made up of those who are informed, but don’t see the risk (you are probably in that camp, Peter), and those who don’t know but are astonished at how dishonest it is and how they have been betrayed by their colleagues (as Andrey lays out).

        2. Andrey Pavlov says:

          I can’t seem to reply below the comment for some reason:

          Then you are not talking about “shruggies”, who are given this demeaning name because they are assumed not to be caring sufficiently enough about matters that we think they should care a lot about.

          They can’t care about matters they know not of.

          They do not know the specifics of the modalities or even some of the modalities. They are “shruggie” towards CAM as a general concept and have some vague sense that it is probably harmless, probably not very useful, but could be and why not give it a try. In many cases they know the name of the modality (e.g. “homeopathy” or “reiki”) but don’t know the details of what the actually entail.

          You know, kind of exactly how I described about how most people – including physicians – think that “homeopathy” is “holistic herbal” medicine and have not heard of the Law of Similars or Infinitesimals.

          But hey, go ahead a nit pick that one point that you could have reasonably inferred rather than address any of the other points I made.

    2. Discussant says:

      This is a worthwhile point. The rate of iatrogenic illness/death in mainstream medicine is appalling. I think that at least part of the solution may lie in a more rigorous application of scientific investigation/well-designed randomized controlled trials that include long-term follow-ups before confidently declaring a treatment to be safe or harmless, and more humbleness/reasonableness about acknowledging the limitations of our current knowledge and how scientific knowledge actually progresses over time. There have been too many instances of treatments/procedures fervently declared to be safe at one time and then discovered to be unsafe at a later time. When in doubt (which should be almost any time the long-term results are not in) and the patient is not in severe pain or a life-threatening situation, it may be safer to err on the side of minimal or non-intervention. In any case, transparency and honesty about what we know and don’t know (about both short-term and long-term efficacy/safety) should help.

      1. Andrey Pavlov says:

        @discussant:

        I absolutely agree. And funnily enough I raise the ire of my colleagues from time to time with the simple question we should all be asking ourselves every time we do something: “What am I going to gain from doing this?” If one cannot answer that question, then one should not proceed. To me there must be an active reason and rationale for doing something – anything – to a patient. At my stage in training, there are many times I can’t answer that question from a lack of knowledge. So I seek to find it (or have my attending explain it to me). But in too many cases the answer is known and it is “nothing” and yet the test proceeds anyways. Out of fear of missing something, fear of lawsuit, fear of angering a superior who has “always done it that way,” or simple ignorance, laziness, or just being tired. There will inevitably be some amount of unnecessary tests and procedures. There is simply no way to make it zero. As a surgeon friend once told me, you have to cut out the occasional normal appendix or else you aren’t capturing all the ones that should be cut out. So we do have to hedge a little on overdoing things.

        And in certain cases that justification can be purely psychological. A CT scan may be completely unwarranted from a scientific standpoint but that one particular patient is having such psychic angst at not having it and ruling out a brain tumor that the kind and compassionate thing may be to do it. Those are the sorts of exceptions that Dr. Hall spoke of and must be considered carefully and, IMHO, done only when all attempts at informing and convincing it is unnecessary fail and with clear indication that this will significantly and negatively impact the mental well being of the patient.

  13. WilliamLawrenceUtridge says:

    The rate of iatrogenic illness/death in mainstream medicine is appalling.

    I consider the death rate due to untreated medical conditions to be appalling. One must separate the rate of medical errors from the rate of deaths due to the fact that medicine is hard and comes with no guarantee of safety or perfection. One also can’t ask for absolute safety, even the mildest procedures come with risks and the precautionary principle can be misapplied like it has been for GMO.

    Your approach would also significantly delay the adoption of new medicines and procedures. Is that a good thing? We don’t know. When adverse effects appear at a rate of 1/10,000, that means you need to run trials of 10,000 people to see it once – at which point, you can’t distinguish it from the background rate, so you’d actually need to run trials of 30,000. And what if it’s 1/100,000? That’s why we need an effective postmarketing surveillance process, which does work reasonably well after a drug is released.

    To deal with the problem of biased reporting by drug companies, a definite positive starting point would be mandatory inclusion of a trial in Ben Goldacre’s Alltrials campaign in order to be published or for a trial to be reviewed by the FDA before being licensed. As an extra incentive, may I suggest criminal penalties including jail time for the CEO of the company that hid the trials?

    As for iatrogenic effects, there are already other mechanisms in place to deal with them (M&M reviews in hospitals being one beyond postmarketing surveillance) but other options are always good.

    1. Discussant says:

      Yes, I think that the death rate due to untreated illness and iatrogenic illness are both appalling. One type of error doesn’t justify taking actions that result in the other type of error. I think that careful application of the scientific method (with an eye to both short-term and long-term effects) can help identify more accurate risk/benefit ratios and help navigate the right path.

  14. Pete Attkins says:

    When SCAM practitioners begin to understand the marvels of fMRI, a plethora of other exotic science-based diagnostic test and measurement equipment, surgery, and recent findings from neuroscience and biology, they might start to comprehend why they are charlatans (in this 21st Century, wilful ignorance is very different from ineptitude).

    Conversely, public demand for SCAM is due to only one factor: the deplorable widespread lack of critical thinking skills.

    As a business model, quackery totally trumps evidence-based medicine because it remains exempt from using the same very high standard of ethics and accountability.

    Thank you very much, Harriet, for your profound articles and many thanks to all the supporting commentators.

    Best wishes to you all,
    Pete

  15. Calli Arcale says:

    One thing that’s really interesting about the albuterol study is how frighteningly similar it is to the story of salmeterol. This is the long-acting beta agonist used in Advair. Salmeterol is currently banned in the US as a stand-alone drug; Advair is only allowed to use it because it pairs it with a steroid to treat the underlying inflammation.

    Salmeterol was really exciting when it came out, because it doesn’t make you as jittery as albuterol (a short-acting beta agonist) does, and it lasts all day so you don’t have to keep taking hits of it to keep going. Sounds great, right? Well, not really; after it had been out a while, it became noticed that there was an increase in deaths and ER visits for asthma in patients who were using it. An asthma drug that was causing asthma deaths? Sounds ridiculous, right ? Well, what happened was that it suppressed symptoms so well that patients felt fine and didn’t get the underlying inflammation dealt with. Eventually it got bad enough that it overwhelmed the salmeterol’s ability to control it. It was pulled from the market.

    So if even a drug that produced measurable improvement in lung function was dangerous because it failed to treat the underlying problem, a placebo that only *seems* to improve lung function could be even worse. And without any sort of a surveillance system for placebos like chiropractic, cupping, acupuncture, and homeopathy, we’ll never know. They’ll be listed as dying of untreated asthma, not asthma that was being improperly treated.

    I think you offer an excellent approach to the whole question of placebos, Dr Hall. I will say that there is one placebo I’m generally okay with: the “inactive” pills given in a course of birth control pills. They’re there to help maintain good pill-taking habits. Personally, I just throw mine out, but I can see them being useful to some folks.

    1. Angora Rabbit says:

      Well said, Calli. The harm is that patient’s are fooled into thinking they are better, and then do not treat when appropriate, causing further harm or even death.

      PS – sometimes the OC “placebos” provide iron, so that can be a good thing. But then I guess it’s not really a placebo then.

  16. A Curious Observer says:

    I wasn’t sure what to comment on, then this caught my eye:

    “This criticism amounts to saying “Why don’t you blog about what I consider to be important?” And the easy answer is: it’s not your blog, it’s ours. We get to decide.”

    True. But I wonder, is this blog here to persuade the public to choose a science based approach, or to give health care professionals a place to vent?

    If you are looking to persuade patients, ranting against CAM is not likely to achieve that outcome. People make decisions for emotional and ideological reasons, even if it’s not rational. You’d be better off making a clear case for conventional medicine and stating that CAM may provide some benefits but they are not a guarantee.

    If the blog is here to provide an outlet for medical professionals who are frustrated with CAM then by all means go ahead. We all need a place to vent sometimes =)

    1. Harriet Hall says:

      I don’t have any illusions that this blog will persuade very many of the public, because I realize most of them don’t have the critical thinking skills needed to understand our message.

      As I see it, our purpose is not to persuade, but to present accurate information to help counteract the flood of misinformation elsewhere.

      As I’ve tried to explain so many times, I respect patient autonomy and I have no real objection to patients using CAM or to anything else they choose to do about their health, even if they choose death over life-saving treatment. But they have to have the correct information before they can make a good decision, and before they can give informed consent.

      “Stating that CAM may provide some benefits but they are not a guarantee” is not the message we think we should be sending. The farthest I could go is to say “There is no evidence that CAM provides any real benefits; some people believe it has helped them, but that is probably due to factors like placebo effects, the natural course of the disease, and the post hoc ergo propter hoc fallacy. What you want to do is probably safe (or not, if that is the case), and I don’t think it will change the course of the disease, but if you derive comfort from trying it, that’s a good enough reason in itself.”

      1. Discussant says:

        I love your point about patient autonomy, correct/honest information, and informed consent. Those are the bedrocks of ethical treatment in healthcare, and respectful ethical interactions in general.

        On a separate note, regarding the point about the public’s poor critical thinking skills and scientific illiteracy, I share your concern. It seems like there are instances/anecdotes of uncritical acceptance and lazy reasoning that can harm our culture and the individuals in it all over the place. At the same time, I’m wondering if James Flynn’s research on increasing IQ levels/logical reasoning abilities might give some hope? (I just listened to his fascinating TED talk last night: http://www.ted.com/talks/james_flynn_why_our_iq_levels_are_higher_than_our_grandparents.html)

        Thanks!

      2. MargieM says:

        I agree with Dr Hall’s response, when you are facing severe symptoms and sifting through 100′s of CAM options, its far more comforting for a physician to say, its all bull just stick to your current treatment. My doctor has used the “it may be helpful response” which just compounded my distress, is it helpful or isn’t it, based on what information? These are expensive, time consuming choices. Time spent pursuing CAM could be far better spent doing something the patient really enjoys and finds relaxing.

    2. WilliamLawrenceUtridge says:

      I find this blog useful for two reasons:

      1) Critical thinking
      2) Topic-specific knowledge

      The reason both are useful are:

      1) I can win more arguments; it becomes easier and easier to recognize fallacies when they are presented
      2) Whenever I meet someone in my personal life who believes in antiscientific nonsense such as antivaccination propaganda, or CAM, or that natural birth is better, I have an immediate storehouse of information to draw upon – common but false claims about medicine or CAM for instance, counter-examples, and a list of things I can say that more or less immediately will reveal to someone who is not CAM-committed that the course of action they are thinking about might be a waste of time and money. This is intensely useful in my personal life, I can make the greatest impact not with strangers or great masses, but with individuals whom I know and like – people important to me through direct relationships. Sure, I’m not reaching an audience of millions, but at least I can try to dissuade a couple dozen people whom I actually give a crap about. That’s far more meaningful to me than reaching a thousand strangers. Frankly, I’d sell a thousand strangers to drown in a river if it meant my family could live an extra year – because I’m a selfish monkey and it’s easy to not give a crap about strangers.

    3. Rork says:

      This blog trains missionaries for critical thinking. We emerge better armed to fight against honest error, and dishonest falsehood.
      It trains scientists too – I challenge my colleagues and myself more often.
      I am talking about actual effect of both authors and commenters, not intent.

      I am indebted.

  17. pmoran says:

    “There is no evidence that CAM provides any real benefits; some people believe it has helped them, but that is probably due to factors like placebo effects, the natural course of the disease, and the post hoc ergo propter hoc fallacy. What you want to do is probably safe (or not, if that is the case), and I don’t think it will change the course of the disease, but if you derive comfort from trying it, that’s a good enough reason in itself.”

    That’s very close to what I am saying. I merely happen to think that the evidence from all sources taken together permits a somewhat greater responsiveness to non-specific aspects of medical care than you suggest, as is also suggested by some CAM testimonials.

    The testimonial is the basic subject matter for any <b<scientific examination of the phenomenon of CAM and of why some people become so easily “hooked” on it. It sustains the whole edifice. The “science” merely provides the necessary “schtick” and can usually be quickly dismissed as either extremely unlikely or as too lacking in support.

    Very many testimonials can be entirely explained by the misattributions you mention. Some are not so easily explained, being more suggestive of an illness-changing, if not life-changing experience — something akin to a religious conversion.

    I agree it is still possible that there is some exaggeration going on, perhaps also faulty memory, or conscious or unconscious distortion of the facts, or even some as yet undisclosed therapeutic influence. So this is not a sound basis for any certainty.

    OTOH nor can we entirely exclude dramatic and “real” changes in symptom perception or in adjustment to illness in other ways. Nor can we be at all sure that our clinical studies provide an adequate model for examination of what may happen under favourable conditions with a particularly charismatic healer.

    I think part of being science-based is being aware of the limitations to our knowledge and our attitudes and our speech should reflect that. But I would not go much further than you.

    1. Billy Bones says:

      It doesn’t matter how many people believe a piece of nonsense, and are willing to testify in their belief in it. Not too long ago in history the trsut plaed in bleeding as a viable therapy was pretty much 100% accepted, and there were many folks that testified tha it helped them. The only method that has been devised that has any hope of distinguishing a true effect from one only believed to be true is the scientific method, in particular double-blind randomized studies.

  18. MedsVsTherapy says:

    The review of ways that the placebo might work is great. Here is another – I have posted this here before, but long ago.
    “Non-specific therapeutic factors.”
    In counseling, we have been carrying out decent, scientific evaluation of counseling/psychotherapy seriously since a bit before the 1960s.
    One profound finding is that the benefits of counseling, when it is being applied in the right way with the right patients, can be broken down into two therapeutic effects: the specific technique (such as cognitive therapy, exposure therapy, psychodynamic therapy, etc.) and “nonspecific therapeutic factors.”

    These non-specific factors are distinct from placebo effects and from improvement that will happen simply with the passage of time. They have been discovered through scientific means, beginning with qualitative methods, and progressing to concept formulation, then development of measurement, then measurement validation, and so can be reliably measured.

    The presence or absence of these, and their magnitude, co-vary with clinical improvement. These all refer to progress/benefit in mental health issues. I believe that some of them are “in play” when medical care is delivered. These largely are imparted by expectations and the therapeutic interaction – as is in play in medical encounters, as well as various rituals.

    Here is the classic list from the pioneering work of Yalom: universality (you feel better upon realizing others have the same problem; I hear this OFTEN when a fitting medical diagnosis is determined and this actually relieves depressive symptoms in some suffering medical conditions); altruism (refers to group therapy – helping others boosts mood and self-esteem, and build confidence for handling things in life); instillation of hope (this is like when a person feels much better after just one counseling session, which serves a purpose of encouragement to remain in counseling – and hopefully the counseling continues to be good! -physician wannabe-s often get this feeling from discussing their doctor dreams and plans with a real doc, and getting encouragement – that serves a role in sticking with tough medical training – hope is important for us all in our endeavors); imparting information; interpersonal learning – input (self-discovery); and a few others that are more specific to counseling/mental health which you can find by using Google.

    I believe that people going through clinical trials experience a psychological benefit from being treated as well as we treat study participants. We treat them well because we HATE missing data, and we love our studies. Study personnel smile, treat people warmly, explain things, etc., in ways that I believe are likely to impart this “nonspecific therapeutic factors” effect.

    It may not reduce the inflammation causing pain, but it adds that subjective factor that is an amplifier/attenuator of pain. [Those who “catastrophize,” or connect thoughts about how horrible the future might be if the pain continues, experience worse pain, and this cognitive style can be detected, illuminated, and modified, with a corresponding reduction in perceived pain, with no change in somatic status or somatic treatment).

    In asthma, it may not boost breathing capacity, but it may calm people, or make them feel more confident about the effects of any shortness of breath. When I was doing “mindfulness meditation” regularly, I could be more objective about shortness-of-breath when playing the hold-your-breath-underwater game with kids in our family – otherwise, sob is quite stressful and can be panic-inducing.

    And so on.

    In the Wizard of Oz, the lion believes he is a coward. The Great Oz, upon noting how the lion defended Dorothy, points out this bravery, and highlights it. This is “interpersonal learning,” and or “self-understanding.” Same lion, but now with a “re-frame” so that he can accept himself as “brave.”

    Technically, by Skinner’s learning principles, if his behavior changes, he has “learned.” “Education” is the third major avenue of medical care, after “surgery” and “medications.”

    I had a discussion with a physician who became offended when I expressed my view that physicians should not be doing patient education – their time and expertise is too valuable to perform a task that can be done very well by a less-expensive and less rare medical professional. He noted that patients really listen to physicians. True. That phenomenon should be capitalized upon. Should that influence be put in the category of “placebo effect?”

    I think it should be in some distinct category of its own, and we should capitalize on it. Possibly by having physicians deem some health educator colleague as a necessary expert in patient education, then hopefully the influence that a physician has over a patient could be transferred to a more appropriate healthcare team member – we don’t want to lose a non-specific effect as powerful as a physician’s input and advice, but a doc is quite an expensive person to carry out the full range of diabetes management education.

    To sum up, I encourage people to explore “non-specific therapeutic factors,” and consider how they are part of the illness experience, and play a role in the physician-patient relationship, and can be used to facilitate some biomedical interventions.

    They should be recognized in their own right, and be seen as distinct from mere placebo effects.
    http://www.agpa.org/guidelines/factorsandmechanisms.html

    1. Discussant says:

      You wrote: “These non-specific factors are distinct from placebo effects and from improvement that will happen simply with the passage of time. They have been discovered through scientific means, beginning with qualitative methods, and progressing to concept formulation, then development of measurement, then measurement validation, and so can be reliably measured.”

      You missed the critical next step here: the scientific experiment — the well-designed replicated randomized controlled trials with active control groups that control for expectations and that can rule out confirmation bias, allegiance effects, etc. Until this step is addressed, it looks like the methods you’re discussing belong in the same bucket as CAM.

      Practitioners who sell untested “non-specific factors” (which don’t require any particular type of practitioner and can likely be obtained cheaper elsewhere) as one of the primary vehicles for “efficacy” have an ethical obligation to fully disclose this upfront to all clients.

      Also, any thoughts on how to differentiate between what techniques or factors will be helpful or harmful for which clients and in what ways, and how to navigate away from harming clients? What kinds of tests have been done to establish safety? And what about long-term effects after the therapy has ended?

      http://www.sciencebasedmedicine.org/the-role-of-anecdotes-in-science-based-medicine/

      1. Peter Moran says:

        Discussant: “You missed the critical next step here: the scientific experiment — the well-designed replicated randomized controlled trials with active control groups that control for expectations and that can rule out confirmation bias, allegiance effects, etc. Until this step is addressed, it looks like the methods you’re discussing belong in the same bucket as CAM.”

        Actually, you have a valid point, from the point of view of an absolute scientific certainty that is rarely approached. This could indeed be yet another aspect to those powerful “therapeutic illusions”,

        Nevertheless SBM writers themselves accept that mainstream care should be trying to magnify such benefits. That does not of itself establish truth but it suggests a general acceptance of what MVT is saying. .

        The onus of proof might also be shifted somewhat in this instance from the point of view of practical patient care. These are plausible interventions and the vast majority of many thousands of clinical studies show that the addition of ANY extra attention to patient care induces the reporting of extra benefits over “usual care” or “waiting list” groups (with subjective or psychosomatic complaints, of course).

        Such outcomes will often be dismissed as due to placebo effects when there could be contributions from true placebo influences, the non-specific aspects of medical interactions that MedvsTherapy describes, patient reporting biases, better patient coping in various ways, and possibly also nocebo effects in studies where the “untreated” groups are given reason to feel aggrieved.

        How do you suggest we sort this out? What study design would you suggest that would enable us to measure the specific effects of patient reassurance, psychosocial interactions, or periods of “time out” from the stresses of life in a supportive environment? IOW, what would serve as suitable “active controls” for each of these? I have tried and failed to come up with a confident answer.

        Or, do clinical trials have present limitations when dealing with the effects of certain kinds of patient-practitioner interaction?

        1. Discussant says:

          @ Peter Moran/pmoran:

          May I clarify your response to my points? Are you discussing psychotherapy (talk therapy), in which the non-specific factors are sold as a primary vehicle of treatment, or science-based medicine in which non-specific factors might be a nice bonus?

          Are you saying the following of psychotherapy:
          - With respect to the scientific method, we’re leaving psychotherapy in the same bucket as CAM.
          - We’re agreeing to the ethical obligation to disclose the lack of reliable scientific evidence and unknown risk/benefit ratio to all clients (so that they have the opportunity to give meaningful informed consent)?
          - No answer on how to differentiate between what techniques or factors will be helpful or harmful for which clients and in what ways, and how to navigate away from harming clients? No scientific evidence with respect to safety and long-term effects?

          As for how to conduct an appropriate trial, there are some suggestions here: http://pps.sagepub.com/content/8/4/445.full The important thing is that the active control group be a plausible therapeutic activity such that subjects in both the psychotherapy group and the active control group have equal expectations. At the very least, expectations should be measured for both the experimental and control groups, and any significant differences taken into account by discounting the results. And, of course, the trials and trial design should be registered in advance of conducting the trials, and published regardless of the findings.

          One possible experimental set-up that could be tried is something along the lines of comparing sessions with licensed professional psychotherapists in the experimental group to sessions with college-educated volunteers instructed to be nice and understanding in the control group — and making sure that the subjects don’t know which one they’re talking to, and that the post-session evaluators don’t know which group the subject came from.

          It would also be interesting to see psychotherapy compared to a variety of other cheaper and more widely accessible activities/interactions that don’t masquerade as healthcare.

          One of the most deplorable things about psychotherapy as it’s currently practiced, especially the psychoanalytic/psychodynamic varieties, is its lack of honesty and transparency about the quality of research surrounding it, and thus its failure to give clients the opportunity for meaningful informed consent. Just like CAM.

          1. Harriet Hall says:

            Informed consent is a valid point. Not only is there little knowledge about the effectiveness of the various talking therapies, but patients often choose a talk therapist without knowing what methods they use or even whether the provider is a a psychiatrist, a social worker, or someone who has taken a few courses and set up as a counsellor.

            One effort to shine an objective light on the subject is The Scientific Review of Mental Health Practice.

          2. pmoran says:

            Thanks. My question was for now a purely technical one and as described above.

            I remain unsure that it is possible to adequately control for many of the non-treatment-specific influences within medical interactions so as to reliably measure their individual contributions.

            I once believed, as I am sure most do here, that at least in theory we should be able to use the double-blind RCT format to answer any question in therapeutics, given enough money, time and ingenuity. Now I am not so sure. That technology evolved to determine intrinsic treatment efficacy and safety, and it has shown some unexpected limitations in doing that. How much harder is it going to be to reliably dissect out the various elements to this pervasive background “noise” within therapeutic interactions?

            As you imply, the matter has implications for medical ethics and for policies on other matters, including on CAM and aspects of psychotherapy. All the more reason for being aware of the limitations to our knowledge on these matters.

            We can be sure that these influences will in general not directly affect the course of any disease, and guess that they will often lack cost-effectiveness when used alone, or even if applied alongside a placebo-type treatment ritual. But we are talking about billions of medical interactions wherein some medical benefit is possible.

  19. pmoran says:

    I agree with all that, MedsVsTherapy. I, too think, that these factors can have a massive impact on how people cope with illness and that they are not associated with the application of “treatment”, as a true placebo influence should be.

    I often treated patients with the irritable bowel syndrome who had exhausted all possible conventional treatments over many years and were in despair At least I was able to point out to some of them that on their past history their bad patches didn’t last very long and “I think next week should be better”. It also helped to reassure them that this condition does tend to subside over time (at least it seemed to in the population I encountered and observed over some decades).

    I have also seen too many times to keep count how troublesome abdominal symptoms can subside completely (or at least disappear as a clinical problem) once the patient has been reassured they don’t have cancer or don’t need anything cut out.

    WRT the potential non-specific effects of therapeutic programs based around acupuncture (and any like ongoing, hands-on, theatrical and/or invasive method), there are likely to be added minor physiological influences — enforced relaxation and “time out”, distraction, counterirritant .

  20. MargiM says:

    Just wanted to thank you for these two articles. As someone with an incurable illness that everyone has a cure for I’ve often been a “worried sick” person, rendered quite helpless by the volume and variety of supposed cures and treatments. This website has helped me come to a decision that I will only pursue treatments with good evidence behind them and otherwise can just cope and get on with life as best I can. Its saved me a lot of time and frustration, many friends and family members can’t comprehend that you can accept life with illness, are part of the “worried well” and have been strongly pushing fake medicine on me for years, it has done more harm then good and I’m so glad I’m done with it. I just wish this information was as easy to come by as the fake bs out there.

  21. Peter Moran says:

    MargiM, what was your disease (only if you are happy to disclose that, of course)? What brought you here and what part of the information you found here made the difference? Or, did the general approach merely help reinforce an impression that was already building through your own experiences?

    We can learn from you.

    1. MargieM says:

      I have ankylosing spondylitis, what brought me here was wanting to be informed about treatment. I’ve been developing an understanding of the problems with CAM for a number of years now. I consider myself a critical thinker and early on started investigating treatment claims and discovered quackwatch after trying out prolotherapy at some expense, I also read Ben Goldacres book Bad Science which further cemented my skepticism.

      My illness has been characterized by remissions where I haven’t needed any treatment and avoid thinking about illness at all and flares where I think of little else. In my most distressing moments of pain and disfunction the claims of fellow patients, family members and friends were not just tempting, I was actually turning a lot of my anger and frustration with the illness against myself and began thinking if I could just TRY EVERYTHING maybe I’d get better and its my own fault I’m sick because all these people after trying x diet copper bracelet, supplement etc say they got better. But there are just too many things and many of them were extremely difficult (no carb diet anyone?) This led me to become depressed. I then decided to do something about the depression and anger instead of trying to fix the physiological symptoms which may or may not improve with my current treatment, who knows.

      During this time I discovered “science based medicine” by chance and find it extremely cathartic, I come here every time I am confronted by fear mongering and find an answer. You see even though I know logically that the CAM treatments aren’t necessary or useful and I think I have a pretty good understanding of what evidence based treatment is. I’ve a habit of taking a lot of personal responsibility for my health and I need reminders that I’m doing okay and can trust my judgement.

      I think one thing that cannot be emphasized enough here is how extreme the peer pressure against conventional medicine and in favour of CAM is and the psychological impact on patients who are vulnerable. My own mother has said that taking NSAIDS is cowardly and lazy, I should just give up dairy and caffeine and I’ve had a friend shout at me for not taking glucosamine.

      Its been a long road but I now see acceptance of my condition and a critical approach to treatments as an integral part of my treatment and have developed strategies to maintain this approach so I don’t forget what I’ve learned. Hopefully they will sustain, but please keep this blog current in case they don’t.

      1. pmoran says:

        Thanks, Margie.

        So do you think it is the reassurance that you are not missing out on anything important within CAM that you mainly get from here? If so, what kind of thing do you think you need to hear, or does any kind of adverse comment on CAM suffice?

        Would you also regard yourself as having started off with a reasonable grasp of critical thinking skills? I ask because I am testing the hypothesis that this is much less of a factor in CAM use than standard sceptical dogma states.

        I suspect that quite major scientific misgivings can be overcome by a sufficiently strong medical need and the exposure to others stating that a certain method has helped someone (as your experience seems to suggest). The underlying thought process is not so much “Oh, so here is a valid treatment” — it is more like “perhaps I should give this a try”.

        Your extensive disappointing experiences with CAM may thus be as important a factor in your present level of scepticism as anything else. I know these matters are complex and hard to tease apart .

        ,

        1. MargieM says:

          Thanks for responding Peter and for your questions. I did have some critical thinking skills before, but no understanding of evidence based medicine and it has taken me hours of study repeated over several years to grasp and I’m still developing this understanding, for example I don’t understand how the efficacy of treatment is established in a condition with symptoms as variable as mine where all the studies have had higher than average drop out rates.

          In most cases of resisting CAM the general approach in these two articles suffices, it doesn’t take me long or any extra effort to reject energy medicine or homeopathy for example. In other cases its a bit harder.

          For ankylosing spondylitis a lot of attention has been paid by patients and some doctors to diet. In the 80′s a rheumatologist in London called Dr Erbinger had a theory that a cross reactivity with klebsiella caused the joint pain and used an experiment with rabbits to prove this, however subsequent studies (I had to search for with some difficulty) showed that no one could repeat the rabbit experiment. Erbinger prescribed a no starch diet to starve the klebsiella and claimed that his patients were ‘cured’ with this diet.

          Patients and other practitioners have picked up on these results and republished them with the usual arguments extolling the curative powers of the diet and that “doctors don’t understand nutrition” or “pharmacuetical companies wont study diets”

          The bottom line was that no one else has been able to repeat the results and I haven’t been able to discover why such a socially and logistically difficult diet protocol was selected as a treatment.

          Despite this the study and results have been republished several times. I can’t remember the name, but a post on this blog gave me an “aha” moment when it described how scientifically unsound treatments could stick around in practice in a similar way to the one I described above.

          So thats one example of how the blog hasn’t just given me a general approach but also resolved in part specific arguments, I’m sure there are others. I’d love it though if someone would like to take on Dr Erbingers London AS diet as a case, as its still got a strong hold in the AS community and causing people a lot of guilt and stress. I’m also a bit lonely in my scepticism and a bit uncertain of the conclusions I’ve come to. There are more details of the diet on the Sondylitis Association of America diet page.

          1. WilliamLawrenceUtridge says:

            You might be interested in Snake Oil Science by R. Barker Bausell, he goes into study design more than Dr. Goldacre. My thinking about the scenario you provide (variable symptoms with high dropout rates) is “that’s a methodological challenge”. Normally variable symptoms would be addressed through randomization, there’s not much I can think of that you can do about high dropout rates though – it’s basically a flag that the treatment itself might be doing something to induce dropouts if they are asymmetrical. Perhaps a strong follow-up protocol to determine why people are dropping out. If they are consistently symmetrical across a large number of trials, then it could be a good thing as it suggests it’s not the intervention but the course of the illness.

            But study design is hard and science is imperfect :(

          2. pmoran says:

            ” I did have some critical thinking skills before, but no understanding of evidence based medicine and it has taken me hours of study repeated over several years to grasp and I’m still developing this understanding, for example I don’t understand how the efficacy of treatment is established in a condition with symptoms as variable as mine where all the studies have had higher than average drop out rates. ”

            Yes, I think this is part of the problem. It is not so much “critical thinking skills” it is “skills (and knowledge) relevant to the question’.

            That which is second nature to those of us talking about this stuff all the time may be like a foreign language altogether to the average, or even the above average, person.

            If so, it is not likely that the main solution to “the CAM problem” is going to be “better public education”.

          3. MargieM says:

            I tend to agree Peter. I’ve been told many times by doctors “there is no evidence for that” however for a long time I didn’t know what that meant, did it mean that studies had never been done, or that no one had ever benefited? It certainly wasn’t clear from the outset and is something that needs to be learned.

            Of the CAM users I know one is an advocate who graduated summa cum laude, another a development economist who teaches at the UCT Graduate School of Business. Neither are stupid or without critical thinking skills. We all make our choices based on the information we have available to us and don’t have ready access to the science of medicine. So I agree with Dr Hall that it will be a difficult thing to dismiss CAM to patients who are comforted by it, but when a patient comes for clear answers you should say in detail that CAM therapy’s are no better than placebos.

            I think it would be interesting to investigate what skills and attributes patients who reject CAM have. I also think it may be helpful for doctors to learn how to advise patients with chronic illness on constructive ways to deal with unwanted health advice. I recently met a cancer patient who had become so stressed out by unwanted advice that he no longer spent time with friends and family.

          4. MargieM says:

            I tend to agree Peter. I’ve been told many times by doctors “there is no evidence for that” however for a long time I didn’t know what that meant, did it mean that studies had never been done, or that no one had ever benefited? It certainly wasn’t clear from the outset and is something that needs to be learned.

            Of the CAM users I know one is an advocate who graduated summa cum laude, another a development economist who teaches at the UCT Graduate School of Business. Neither are stupid or without critical thinking skills. We all make our choices based on the information we have available to us and don’t have ready access to the science of medicine. So I agree with Dr Hall that it will be a difficult thing to dismiss CAM to patients who are comforted by it, but when a patient comes for clear answers you should say in detail that CAM therapy’s are no better than placebos.

            I think it would be interesting to investigate what skills and attributes patients who reject CAM have. I also think it may be helpful for doctors to learn how to advise patients with chronic illness on constructive ways to deal with unwanted health advice. I recently met a cancer patient who had become so stressed out by unwanted advice that he no longer spent time with friends and family.

            Thanks William for the reference, I’ll look into it. Indeed the science is imperfect and complex, being comfortable with uncertainty is something I’m still learning and undoubtedly a valuable skill for people with complex chronic illnesses.

  22. pmoran says:

    Andrey: “And you have already been schooled by MTR and a couple of others as to why multiple tacks and styles is very useful.”

    WLU “liked” this and Andrey complained that I did not respond to everything he said.

    It may be true that multiple approaches are “useful”. Are you to place no limitations on that? What about recruiting some modern day Goebbels from the PR industry?

    Silly, yes, but the subtlety you are overlooking is that on every occasion on which this matter has arisen I have objected to very specific matters than to my mind are inconsistent with the high ethical or scientific ideals that we affect to elsewhere, and that will also definitely be off -putting to some of the people that we might like to have influence with.

    Overgeneralisations, exaggerations and misinterpretations are difficult to avoid in any area of medicine but they can have a devastating effect upon the exchange or information and ideas. Our job is to help people think, which can mean disengaging emotions, not arousing them.

    The net effect gains and losses from any approach is anyone’s guess, but I am sure that there is also only so far that we can lean towards a propagandist style before we lose all credibility as would-be representatives of unbiased scientific opinion.

    1. WilliamLawrenceUtridge says:

      Godwin’s law Peter.

    2. Self Skeptic says:

      @pmoran,
      Yes, you hit the nail on the head. It’s the excessive mssionary spirit, actually more like crude team spirit, that this site encourages, that I find suspect. It’s the irony of people patting themselves on the back for “critical thinking”, while indulging in simplistic good-guys-vs-bad-guys arguments. As a scientist, it’s really annoying to me to see this this kind of thing called “science-based.”

      1. weing says:

        “It’s the irony of people patting themselves on the back for “critical thinking”, while indulging in simplistic good-guys-vs-bad-guys arguments.”

        I don’t understand. Do you want complex good-guys-vs-bad-guys arguments?

        “As a scientist, it’s really annoying to me to see this this kind of thing called “science-based.”

        What exactly are you calling “science-based”? Subtle or refined team spirit is science-based and crude team spirit is not? I was not aware that any kind of team spirit at all was science-based. I’m in the camp of providing science-based medical care for my patients. My individual experiences with patients and their outcomes are all anecdotes.

    3. WilliamLawrenceUtridge says:

      Peter, what I liked were Andrey’s comments that most doctors don’t actually know what CAM is, and when the specifics are explained to them, they are often shocked and outraged. I liked his comment about the false legitimacy granted to CAM by selling the products in pharmacies and teaching them in school.

      I still don’t know where the Pete Moran who hated cancer quackery went.

  23. pmoran says:

    MargieM: “I think it would be interesting to investigate what skills and attributes patients who reject CAM have.”

    Yes, indeed. I think that unmet medical needs and instinctive responses to testimonial are key factors in CAM use, but why are some people almost immune to them, remaining content with whatever the mainstream offers, while others are prepared to try anything?

    Such decisions are not obviously due to any special ability to weigh up the evidence. There must be some overriding prior influence.

  24. Raymond says:

    I truly cannot believe and am saddened that people with little to no professional track record in science or nutrition are trying to argue against a 19 year study performed by a world renown scientist with over 300 peer reviewed articles supported and backed up by numerous other professionals in the science and nutrition community. How is it that so many ignorant layman have something to say when all they are doing is trying to argue in favor of their un-examined life. Simply pathetic.

  25. Bryce says:

    You should edit part 1 to include a link to this second part so that folks like me who happen across the first one don’t have to go hunting around the site for the Part 2.

    1. Harriet Hall says:

      Excellent suggestion. Done!

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