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Articles on quackery and placebo effet

Discussion in 'General ME/CFS Discussion' started by Orla, Sep 22, 2017.

  1. Orla

    Orla Senior Member

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    I don't know if there is an old thread with links to articles with arguments against quackery and how quack therapies can appear effective. I thought I would start one as it could be handy to have them easily to hand in one thread, especially now that the SMILE Trial has been published.

     
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  2. Orla

    Orla Senior Member

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    I see I can't spell :oops:

     
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  3. arewenearlythereyet

    arewenearlythereyet Senior Member

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    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181672/

    "Since depression, like chronic pain and anxiety, is characterized by fluctuations in course and spontaneous improvements and features “distress” as a key symptom, it is not surprising that it is also a placeboresponsive condition.1 The mean response rates for placebo in antidepressant clinical trials range between 30% and 40%.2,3 In this review, we describe the historical views of placebo, the associated terminology, the proposed mechanisms underlying placebo response, and the predictors of placebo response in depressed patients."

    Interesting paper showing the average response rates for people with depression and chronic pain. Whilst I don't like a lot of it in terms of the angle they are aiming for they do have some good references

    These stood out


    "The chronicity of the presenting episode is associated with a low placebo response rate.1Depressed patients who are ill for more than a year have lower placebo response rates (usually less than 30%), and those with depressive episodes of less than 3 months' duration have placebo response rates closer to 50%.32"

    "The Declaration of Helsinki, appears to restrict the use of placebos if an effective treatment is known.50

    I would say send a copy to EC in light of her SMILE trial but I have a feeling she knows full well what she is doing and is using the known bias in depressed cases to give deliberate false positives. It would be good for NICE to withdraw the GET and CBT so that there are no "ethical issues" for using a placebo group in her future experimental designs...that is if she hasn't reinvented children with CFS into a brand new disease before then.
     
  4. Wishful

    Wishful Senior Member

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    I'd like to comment on the bit about acupuncture being mainly a placebo effect. Before I discovered that I had ME/CFS, one doctor sent me to the mental health clinic. The only suggestion they had was to try traditional Chinese medicine (I assume one of the workers was a fan of that). Having no other options, I gave it a try. I was skeptical about acupuncture, but thought I might as well give it a try. Thus I had no real expectations of a response, which I assume is required for the placebo effect.

    When I walked out of the clinic, I realized that my muscle aches were gone, and they remained gone for several days. So my experience is that acupuncture can have real effects. LDN later proved to be as effective for reducing those aches. I tried acupuncture one more time, since I'd read that specific points could reduce immune response, but that set of points had no effect. I didn't repeat the first set of points, because I considered the muscle aches to be useful for telling me which foods and activities to avoid.

    I didn't try any TCM herbal remedies, because the prescription was based on the theory of four humous and magical energy, which is nonsense to me, and I might as well pick herbs at random. I have had herbs--such as cumin seed--reduce symptoms effectively albeit temporarily, but those were surprises, and thus not placebo. I've tried other herbs that had me hoping for a beneficial effect, and had either no effect or a surprise negative effect.
     
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  5. Wishful

    Wishful Senior Member

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    On the question of whether we should argue against quackery, I did wonder if we should do it. Some people's lives are worsened by wasting resources--including intangibles such as hope for genuine treatment--by scammers. However, if someone's life improves because they believe that magic crystals or whatever are helping them, is that a bad thing? Then it occurred to me that the people who would be helped (by the placebo effect) are most likely the kind that are going to ignore rational argument anyway, and aren't going to be swayed from the ad for incredible miraculous healing crystals.
     
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  6. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I think placebo effect is fine to those who find it works to elleviate symptoms when they don't have an alternative. However, the problem comes with repeat treatments. By their very nature placebo based treatments are designed to generate more treatments because they are so short lived and don't move a condition forward. If these cost nothing then that's fine. If these cost money, then actually that falls into the area of fraud.

    I think that another main argument outside of fraud is if placebo driven treatments leading to worsening of a condition by masking what's really going on.

    For example the Lightning process causing a patient to think that they are better and then push themselves beyond their limits, leading them to relapse and end up worse off overall than if they hadn't paid the £600 for the treatment. I would imagine acupuncture for pain could have a similar effect where you can end up in worse pain by masking pain temporarily and causing more damage when muscles or joints are exercised when they need to be rested. So I guess this falls into the area of risk.

    The third area is regulation. Placebo effect doesn't work on everyone, and it's not necessarily as consistent and measurable as a proven trial led treatment. This seems to be based on the mental attitude of the subject, which can change over time. This means that it's nigh on impossible to guarantee an outcome. This makes it unreliable as well as temporary.

    I think those are the main arguments against.

    It's interesting that some psychiatrists think that placebo is a great way of treating patients ....I think this is the basis of most quack treatments.

    What I find repugnant is when fake treatments are used as an excuse to avoid spending money on research and more expensive treatments that would give a more effective and permanent outcome to the patient.

    This is where we are in the UK unfortunately.
     
  7. Wonko

    Wonko Senior Member

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    The other side.
    TBF a lot of medical treatments are just to mask symptoms, particularly prescription painkillers, so that particular one, whilst valid, isn't just related to quack and placebo thingies.
     
  8. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Yes I thought of that as well. However it's one thing your GP prescribing rest and some pain killers, it's another when a quack says hallelujah you're cured now live your life.
     
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  9. Wonko

    Wonko Senior Member

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    The other side.
    Valid point.
     
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  10. Learner1

    Learner1 Professional Patient

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    And then there are endocrinologists who insist patients are fine if their TSH is in range, even if they aren't converting T4 to T3, have Hashimoto's, etc. etc. and who prescribe T4 even if it doesn't work for some patients...

    It pays to investigate. We're all unique and different treatments may affect each if us differently. I'm leery of studies that say something works/doesn't work for everyone.
     
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    For me that statement is a little over generous. While I agree that some unconventional treatments may help some people (not likely cure) it's doesn't stand to reason that any and all non mainstream treatments deserve to be considered this way. I consider thinking this way as dispensing with critical assessment and leaving oneself too open to treatments that are indeed nothing but a scam. After all if anything might work. . .
     
  12. Learner1

    Learner1 Professional Patient

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    Having seen a lot of failures with western medicine, I've learned its worth doing due diligence on ANY treatment. What works for everyone else just might not work that way for you.
     
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  13. Snowdrop

    Snowdrop Rebel without a biscuit

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    Well, with regard to exercise at least that is pretty much the definition of the situation we're in with ME.

    But my point was not all treatments that are not the go to treatment deserve the same consideration. Though I presume with your due diligence comment that you consider them weeded out in the first round.

    And often even when a doctor does not offer any tx or offers a standard tx that doesn't work the patient can benefit from some other tx that is quite accepted (but for some other condition). An example being how methotrexate got used for arthritis. So not really a quack issue.
     
  14. Learner1

    Learner1 Professional Patient

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    The weeding out process should be thoughtful. I've had great benefit from ozone therapies, non-FDA approved hormones (estriol and testosterone), botanical and customized nutritional supplements, probiotics, cranial sacral therapy and prolozone, which some consider alternative quackery. But I investigated on my own and found the research I believed supported my giving them a try.

    Conversely, I've seen pharmaceutical drugs, used as prescribed hurt people. Statins, opioids, blood thinners, chemotherapy drugs, diabetes drugs, psychiatric drugs, radiation, and gadolinium MRIs, are all very mainstream treatments, but they each carry significant risks and hurt, and some even kill, patients who trust their doctors to know what's best for them.
     
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  15. TrixieStix

    TrixieStix Senior Member

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    Is is my understanding that there are studies showing no difference in effect between acupuncture needles just being placed randomly in the body compared to "specific" spots that acupuncturists claim are necessary.

    It could well be that sticking needles into the skin does elicit some kind of positive physical response in the body, thus my conclusion is that people should be offered less expensive acupuncture treatments by practitioners who have undergone very basic training that doesn't go beyond being able to safely place acupuncture needles randomly into people's bodies.

    I imagine such training would costs a tiny fraction of what people currently pay (expensive and takes years to complete) to become acupuncturists. Thus they would be able to charge less for their services.
     
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  16. IreneF

    IreneF Senior Member

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    So if you see your doc and are given a prescription for painkillers, are you going to reject it because it just masks your pain? Mostly your body heals itself, and the pills keep you more or less comfortable while that's happening.
     
  17. Wonko

    Wonko Senior Member

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    The other side.
    I suspect you have entirely missed my point, which was....you cannot overly criticise a quack treatment on the basis that their treatment masks symptoms when a large part of the way conventional medicine is practiced is to give you something to mask symptoms and shove you out the door, without investigating what the cause of the problem is in a lot of cases.

    I was not supporting quack treatments, merely commenting on the fact that, in that regard, conventional medicine has the same flaw, as practiced.

    I wasn't, but I do, criticise conventional medicine for acting in the same fashion as quacks in this regard, that doesn't mean I'm going to refuse things to manage symptoms, it means it would be nice, if every once and awhile, if it's not too much trouble, if they could bother to find out what is actually wrong rather than just give me a piece of paper, which enables me to get a pill, to mask it.
     
  18. IreneF

    IreneF Senior Member

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    Yes, I was thinking about how sham acupuncture seems to work as well as the real thing. A person should still have some training in the whole sticking-needles-into-people thing.

    If sticking needles into people works,then a person ought to be able to do self acupuncture, but it could be that there's something about the whole experience that helps people.
     
  19. IreneF

    IreneF Senior Member

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    I used to think that the physician's primary job was to figure out what's wrong with people. But that's not how it works. The first thing they do is try to figure out if you've got a serious condition, such as heart, liver, lung, or kidney disease. If they feel like you're not in imminent danger they relax a little.

    Plus there are limits to what they can figure out, and what they can do about it.

    I think I'm not alone in feeling cheated. I ate right! I exercised! I flossed every night!
     
  20. Snow Leopard

    Snow Leopard Hibernating

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    The "placebo" effect is basically short term distraction and a feeling of relief - this can lead to transient reductions in pain (part of our innate pain relief systems). But placebos cannot lead to magical healing of illness or disease.

    The reporting of symptoms, whether to other people or on questionnaires are not the symptoms themselves. Such questionnaires measure questionnaire answering behaviour and thus changes cannot be entirely attributed to a placebo/nocebo effect.
     

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