Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Anyone know of this quote? Knoop saying he thinks CBT [for CFS] is a placebo/something similar

Discussion in 'General ME/CFS Discussion' started by Tom Kindlon, Jun 7, 2017.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    The enquirer is now happy they have what they want

    An enquiry I received:

    If you think you might know what is being referred to, please let me know. My guess is that the word placebo was not used specifically for whatever this person is thinking about. You can private message me or email me at tomkindlon at Hotmail dot com
     
    Last edited: Jun 7, 2017
  2. Esther12

    Esther12 Senior Member

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    Don't know.

    The Lancet commentry for PACE has bits that could be interpreted a bit like that? eg:

    Chronic fatigue syndrome: where to PACE from here?
     
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  3. Barry53

    Barry53 Senior Member

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    Could it be this:-

    http://www.bmj.com/content/350/bmj.h227/rr-10
     
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  4. Tom Kindlon

    Tom Kindlon Senior Member

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    Somebody thought they shouldn't write to the thread but I'm quite happy for posts to be posted here.
     
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think you want:
    Psychother Psychosom. 2007;76(3):171-6.
    Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome?
    Knoop H1, Bleijenberg G, Gielissen MF, van der Meer JW, White PD.

    I made use of this in my Health Psychology commentary. The wording is oblique but in essence Knoop seems to have been arguing that CBT works like a placebo but the placebo response in CFS is small. I made the point that this would fit OK if PACE was negative but if it is supposed to be positive then either one or other of Knoop's premises is wrong. Simon Wessely has denied that anyone has ever said CBT is a placebo but in the above article that seems to be what is said - it works the way a placebo works.
     
  6. Tom Kindlon

    Tom Kindlon Senior Member

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    Yes the person is happy that the enquiry has been answered now and it was your piece they were thinking off.
     
  7. Mohawk1995

    Mohawk1995 Senior Member

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    So here is the thing with discussing Placebo. The latest Neuroscience has given some real physiological evidence to support that at least some of the Placebo Effect is measurable neurophysiology. That being said, it is likely to help most with those issues that are highly neurophysiologically driven like pain and even the feeling of fatigue. It does not work to change the primary physiology of something like Cancer, severe Cardiac or pulmonary issues and definitely not change the primary physiological state of ME/CFS. So while there may an application of it to improve someones pain, discomfort or even energy level, it is not a cure for a physiologically driven disease.

    What does that have to do with CBT? Well, CBT could work to help "improve" someone's function who suffers from ME/CFS. It might help them develop better coping skills. It might help to improve thought processes and if done in an encouraging way could help to improve how that person lives with ME/CFS.

    CBT EVEN WITH GET WON'T CURE THE PATHO-PHYSIOLOGY especially of people with severe ME/CFS. So if you apply the "PACE Treatment Protocol" to people with ME/CFS I would expect that those with very mild levels (Maybe not even ME at all) will be the people who stand to benefit from it the most. Those with Moderate to a less degree and those with Severe likely not at all.

    "an increase in distance walked during a test situation without an increased fitness suggests that patients walk more because of a change in cognitive processes (eg, daring to do more or an increased self-efficacy with respect to activity), not because of a change in physiological capacity”

    Unfortunately the "Nimrod" health care providers who advocate this protocol for every ME/CFS patient believe that the Conscious (and even the subconscious) component of our Nervous system is more powerful than it really is. They at the same time completely underestimate the power that the "Non-conscious" functions of our nervous system have in our bodies. By Non-conscious I mean what we have zero ability to control and only a small ability to influence and this takes a great deal of time to make small gains.
     
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  8. Snow Leopard

    Snow Leopard Hibernating

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    What evidence? All the evidence I have seen has either been of poor quality, or simply shows the placebo effect is a distraction (eg transient psychological relief).
     
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  9. Sean

    Sean Senior Member

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    It might, if the clinician/therapist has a better understanding than the patient of both the patient's specific problems and the broader world in which they are embedded.

    There is no evidence that this is the case (for ME/CFS or 'MUS' generally). To the contrary.
     
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  10. Valentijn

    Valentijn Senior Member

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    Trying to convince patients that they aren't physically ill and should ignore symptoms isn't going to improve anyone's functioning. CBT in ME/CFS research is almost never about coping.
     
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  11. adreno

    adreno PR activist

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    I have a problem with this idea of "improving thought processes". It would be totalitarian if it weren't complete nonsense.
     
  12. Mohawk1995

    Mohawk1995 Senior Member

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    If you are looking for evidence to link Placebo Effect and its use to the treatment of ME/CFS then it would certainly provide poor results. On the other hand, if you were to look at Placebo in a broad sense, there is support for it being at least in part physiological.

    Neurobiological Mechanisms of Placebo Responses
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3073412/

    Neurobiological Mechanisms of the Placebo Effect
    http://www.jneurosci.org/content/25/45/10390

    It is a significant leap to say that the Placebo Effect is purely psychological. It is also a massive leap to say that one can use the Placebo Effect to treat diseases. And an even farther leap to say that one can use it to treat something as complex as ME/CFS. It does not work that way as most with ME/CFS already know.

    That being said, it does not discount that there is very real physiology going on in Placebo. Seriously considering this concept though will only make sense if someone is willing to look at Neurophysiology as being dominantly NOT CONSCIOUS with only a small fraction of it being Conscious.

    As a result, you may be able to influence some of your Neurophysiology including pain responses, fatigue or nausea but you cannot fix an entrenched physiological disease or pathophysiological disorder with Conscious Thought or Placebo.

    I am of the opinion that Placebo is at least in part a real physiological phenomenon. When I say that I mean it in a broad term across all of medicine. I am not speaking specifically to the "use of Placebo" to treat ME/CFS which at best would be a very poor application of it. In another words, it is not going to work.
     
  13. Mohawk1995

    Mohawk1995 Senior Member

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    Maybe there are some who never struggle with their thoughts and as a result they never doubt, get discouraged, sad or angry to the point of diminishing their ability to do what they want. I am not included in that group. So yes, I think there is value in very positive, personal and meaningful support to help someone have confidence, feel hope, find some joy or calm their anger to help them move forward especially if they are in a difficult place. I am not talking totalitarian 1984ish stuff. Real and personal support.

    Secondly a thought to ponder.....thoughts are physiology. New synapses forming. Changes in neurophysiological pathways. Potentially changing biochemical and hormonal levels. Very complex and not easy to keep "positive" no matter how you define that.
     
  14. Mohawk1995

    Mohawk1995 Senior Member

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    Agreed 1000%!

    There in lies a huge problem! Which would lead one to say then that it is not about caring for the person either.
     
  15. Valentijn

    Valentijn Senior Member

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    When the effects of placebo are studied with objective and subjective outcomes in the same trial, only subjective outcomes show improvement. People with asthma reported improvement of symptoms with placebo, but breathing tests showed no improvements.

    Placebo changes nothing, except perceptions.
     
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  16. Keela Too

    Keela Too Sally Burch

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    I would go one step further and suggest that a

    placebo changes nothing, except reported perceptions


    I suspect the actual perceptions of the patient are probably pretty much unaltered.

    However, they report slightly differently than they actually feel, because they don't want to say that there has been zero benefit from all their visits to the clinic. They have made an investment in going there, so they want to justify to themselves the effort it took.

    Think back to someone suggesting you try a benign therapy of some sort. If you tried it but really didn't feel any different. Do you say that? Most people will say, "Well perhaps it helped....." or something similar, and will only claim it offered zero help if they are sure they remained totally the same or actually got a little bit worse.

    I think it takes a much more obvious decline for any person to report that a proffered therapy was unhelpful. Just human nature.
     
    Last edited: Jun 9, 2017
  17. Mohawk1995

    Mohawk1995 Senior Member

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    I don't see it quite so black and white, but I also do not live with a disease to which there has been so much effort to apply CBT and Placebo so unsuccessfully. So I respect this viewpoint from anyone who does. Those "strategies" are not going to make any significant difference with ME/CFS because there is so much biochemical, hormonal and physiological going on.

    I see Placebo as a myriad of responses including psychological (perceptions), Neurophysiological, Biochemical and Hormonal. With one person the "benefit" may be more from one of these than another, but the likelihood of improvement is always going to be limited by the physiology of the disease or issue they are dealing with. The more it is physiologically "entrenched" the less the potential for any benefit.

    Also I would have anyone interested in this topic to consider that perceptions are thoughts. Thoughts are complex phenomenon based on vast numbers of variable synaptic connections and pathways. Synaptic connections and pathways are physiological by anyone's definition. So perceptions are technically physiology. Having said that, I do not believe we are purely physiological beings so to me there is more going on that remains a mystery and makes this whole discussion even more complex.
     

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