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Michael Sharpe skewered by @JohntheJack on Twitter

Discussion in 'General ME/CFS news' started by Indigophoton, Apr 9, 2018.

  1. Pechius

    Pechius Senior Member (Voting Rights)

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    Definitely not, it's David Jameson. No doubt.
     
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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Maybe Sharpe would be interested to know that Jameson AKA cfs_research also uses the term 'false illness beliefs' (that he criticised David Tuller for using):

    "Some versions of CBT aim to correct false/unhelpful illness beliefs, while others aim to rectify fear of activity, and others concentrate on stress/activity management and dealing with depression and anxiety."

    He also makes his own minor criticisms of PACE:

    "The CBT used in the PACE trial was based on the fear avoidance theory of CFS, and urged patients to ignore their symptoms and increase activity. Although patients got better on average using this treatment, the overall effectiveness was very modest and many patients have reported getting worse due to this type of CBT. The problem is that it ignores the etiology of CFS as being caused by stress. If the original stressors are not removed, or if the CBT itself causes stress, it is plausible that it could cause a relapse."

    http://www.mind-body-health.net/cfs.shtml

    eta: I've read this page on the site and it all seems very contradictory.
     
  3. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    My favorite quote from his website: "The placebo effect is clearly psychological in nature, and it somehow involves the thought processes of the patient causing the body to heal itself."

    Ironically, a psychology enthusiast that fails to understand psychology of biased self reporting of health and thinks positivity makes the body heal itself.
     
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  4. alex3619

    alex3619 Senior Member (Voting Rights)

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    So far as I am aware the placebo effect is primarily about perception of pain, its not about healing.
     
  5. Inara

    Inara Senior Member (Voting Rights)

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    There are people who view the placebo effect as the power of self-healing. It's not so exceptional.
     
  6. alex3619

    alex3619 Senior Member (Voting Rights)

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    There is no high quality evidence of this view, at all.
     
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  7. Inara

    Inara Senior Member (Voting Rights)

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    No. But as we know, for most people that doesn't matter.
     
  8. Pechius

    Pechius Senior Member (Voting Rights)

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  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The evidence for a placebo effect being anti-inflammatory is pretty close to zero I would say. Moreover, it would be difficult to disentangle from all the other pseudo-effects that occur in a trial context and which tend to get lumped under 'placebo effect. Moreover, there is no evidence for symptoms in ME being due to inflammation.

    Placebo does literally mean making people feel better but feeling better is a very slippery concept. It is perfectly possible to feel better and worse at the same time. I don't think it is what most people would call an 'actual change' in this sense.
     
  10. alex3619

    alex3619 Senior Member (Voting Rights)

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    I think this is a big issue, and suspect it is often better discussed as confounds and biases rather than placebo.
     
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  11. large donner

    large donner Guest

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    Go ahead then, argue it..........

    Evidence?

    What a provably falsifiable statement, "I WOULD ARGUE...." then go on to say its two different variables.

    I would argue we both went to the moon and we didn't go to the moon. There was an actual rocket and lunar lander that changed our ability to go to the moon and self reports of going to the moon based on social desirability (people wanted to say that helpers helped them go to the moon)

    My statement is guff and so is his.

    The main problem here, where is the objective proof of improvement anyway. How can you use self reports rife with built in deliberate bias, admit the problems that can cause, and yet still claim there has been some actual improvement?
     
    Last edited: Jul 16, 2018
  12. Lucibee

    Lucibee Senior Member (Voting Rights)

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    It depends what it is. If it's acupuncture, then sticking pins in skin/tissue probably does have a local endorphin effect and probably does stimulate inflammatory and consequent anti-inflammatory effects. A punch in the face probably does something similar. Exercise? Yep. Sugar pills? Yum [gut bacteria: "YUM!"]. Actually, pretty much anything you can think of as a well-controlled placebo probably does do something like that. The whole point is that you want it to feel like you've done something when you haven't (even though you have).
    [Even this answer is a form of placebo...]
     
  13. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Ahh yes you are right
     
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  14. Woolie

    Woolie Senior Member

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    The placebo effect disappears when you use objective measures or ratings by a blinded reporter.* So it is NOT genuine improvement - that would show up on objective measures/other-rated measures. It is an attentional bias towards experiences that confirm an expectation, and away from those that disconfirm it - and/or a recall bias that favours expectation-confirming memories.

    Obviously, those biases are not a fix to the problem and eventually the patient will see that. Then the hope will be replaced with crushing disappointment. We shouldn't be manipulating patients by trying to exploit these sorts of biases - its cruel and unethical.

    I wish people would stop saying its genuine treatment - its not!

    * Hróbjartsson A, Emanuelsson F, Thomsen AS, Hilden J, Brorson S. Bias due to lack of patient blinding in clinical trials. A systematic review of trials randomizing patients to blind and nonblind sub-studies. Int J Epidemiol. 2014;43(4):1272-8
     
    Last edited: Jul 17, 2018
  15. Woolie

    Woolie Senior Member

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    To clarify: Lucibee is right. Some treatments that are used in a placebo conditions in some studies might have some actual benefit. So for example, if you used a placebo which involved putting people on a saline drip, the saline might make them feel a little better. By then this is not "the placebo effect", its just a poor choice of control condition.
     
  16. alex3619

    alex3619 Senior Member (Voting Rights)

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    This also commonly occurs with positive thinking strategies, leading to profound depression.
     
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  17. Woolie

    Woolie Senior Member

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    In fact, its a bit of a misnomer to talk about the "placebo effect", and it creates unnecessary confusion. People often use that word to refer to any improvement that occurs in the control arm of a treatment trial. And there are a whole bunch of reasons you might get that improvement:

    1. Regression to the mean. In an illness that exhibits some natural fluctuation, people will tend to present at their worst. A portion will improve in time without any treatment. So if you recruit people at the time they present, you will see what appears to be spontaneous improvement over time in your control group.

    2. Genuine effects attributable to your 'control' intervention. e.g., saline infusions might improve some symptoms.

    3. Expectation-related reporting biases. These are the attentional and memory biases that can occur when someone is expecting, or hoping, to improve. They are artefacts and don't indicate genuine improvement.

    4. Attrition. If you have drop outs, you might get what appears to be an artefactual improvement in your control condition, because the drop outs will tend to be the more severely affected patients. So when you lose those people from the cohort, the average scores go up.

    1, 2 and 4 can affect both self-report and objective outcome measures. 3. usually only affects self-report measures.
     
  18. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    There is an additional bias coming from poor design of questionnaires that can exploit biases in how people fill in scales etc (as used by people like Chaldea et al)
     
  19. Woolie

    Woolie Senior Member

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    Yes, good point.
     
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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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