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A new low in research? "Writing about CFS symptoms causes harm"

Discussion in 'Latest ME/CFS Research' started by Simon, Dec 18, 2013.

  1. Mark

    Mark Acting CEO

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    All the more reason why it would be good to get Neil Coulson's research into the PR forum experience into the literature...we need sensible citations in this area just as in any other.
    peggy-sue likes this.
  2. aimossy

    aimossy Senior Member

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    Talk about a particular slant taken by the researcher how obvious can you get!
    Perfect example of filtered perception!
    The study itself is almost comical its so biased. Its not comical however that some would take it seriously.
    peggy-sue, Valentijn and Bob like this.
  3. SOC

    SOC Moderator and Senior Member

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    Even if what they're doing is moronic. **Sigh**
    peggy-sue, allyb, MeSci and 4 others like this.
  4. Stuart

    Stuart Senior Member

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    This means nothing but confirmation bias in psychiatry.

    This a known effect called 'Mirroring.' Read a book, watch a movie, play a video game, or yes, put yourself in some others experience and write about it, and your brain is activated as if your are actually experiencing that reality. Whoopee.

    I bet they will say this proves it is all in your head and proof of somatic disorder... :rolleyes: :bang-head:
  5. Stuart

    Stuart Senior Member

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    This reminds me of the Twilight Zone or Outer Limits episode where a psych had a very suggestible patient he could hypnotize and the patient would exhibit any illness, or even robust health. He pushed it to include death and 'forgot' the knocking sequence to reverse the condition, and the man's fiance found out and went to his crypt and did the knocking sequence... cue the screeching violins...

    Point being the psych was suggesting that this proved all illness could be cured by psych/hypnosis means etc... Sound familiar?
    peggy-sue and Roy S like this.
  6. alex3619

    alex3619 Senior Member

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    Charcot, the nineteenth century French neurologist who defined hysteria had a similar issue though history does not show if he knew the game was rigged. His helpers hired people to be hypnotized and play hysterics, and they put on a big show at his asylum. Some of these people were their cooks and other helpers, and not inpatients at all. He was totally convinced that mesmerism, because it could mimic hysteria symptoms on command, showed it was mental, and not that it showed that people could pretend they had symptoms.

    Most of the hysteria case files from Charcot were re-examined by medical historians, who concluded that his real patients had epilepsy and otherwise hard to identify brain injury. Ironically Charcot got it right earlier in his career when he postulated that these patients had brain injury that they were unable to detect using current methods.
    Last edited: Dec 19, 2013
    peggy-sue, allyb and Bob like this.
  7. alex3619

    alex3619 Senior Member

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    What is really scary is this stuff is not quashed by their institutions or peers or journals. Though do look at where this was published. :rolleyes:
    WillowJ, peggy-sue, Valentijn and 4 others like this.
  8. Roy S

    Roy S former DC ME/CFS lobbyist

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    As I may remember it was an episode of Rod Serling's Night Gallery. The hot babe was having an affair with the subject who she found irresistible because he was in perfect health due to the hypnotic suggestion. Jealousy made the doc "forget" although he was kind enough to cut the subject open to perform open heart massage which added to making the final scene not a pretty sight.

    And the moral of the story is?

    1) Hollywood can make fantasies seem real
    2) psychs can make fantasies seem real
    3) hypnosis is dangerous
    4) hot babes are dangerous

    unrelated -- Can anybody recommend a good hypnotherapist? I'm asking for a friend.
    ukxmrv likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    Maybe that is the direction psych therapy for ME/CFS is changing towards, seeing as we all know psych therapy for this illness doesnt work well at all. Maybe they want to go to no treatment at all and complete ignorance of the persons symptoms (that is how I got treated for years and years.. no talk therapy of any kind was even offered...this could be even crueler then offering talk therapy).

    This study could be used to bring in no treatment for us recommended and that complete ignorance is better.
  10. taniaaust1

    taniaaust1 Senior Member

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    Its comical too in how they got people who probably knew nothing about ME/CFS and what it is like, to try to imagine having it in the first place.

    I bet if they were well educated people in this illness, those psych students wouldnt go thinking maybe they could have those symptoms.
    peggy-sue, Tito, Valentijn and 2 others like this.
  11. Gijs

    Gijs Senior Member

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    CFS patients with CBT must write down their symptoms in a diary. This is an essential part of therapy. This therapy can therefore not be good for CFS patients. I was wondering if you can imagine these changes in the immunesystem also (...) Significant changes were observed in B cell subsets, Tregs, CD4+CD73+CD39+ T cells, cytotoxic activity, granzyme B, neutrophil antigens, TNF-α and IFN-γ in the CFS/ME patients in comparison to the non-fatigued controls. Alterations in B cells, Tregs, NK cells and neutrophils suggest significant impairments in immune regulation in CFS/ME and these may have similarities to a number of autoimmune disorders.
    peggy-sue, biophile, allyb and 3 others like this.
  12. Firestormm

    Firestormm Guest

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    Makes me wonder how doctors must feel. Writing down all those patient notes...

    Oh wait, they don't do that anymore. Perhaps this study then explains their reluctance to write all day long about bothersome patient problems.

    They don't want to record actual comments in case they descend into CFS! :nerd:
    Iquitos, peggy-sue, SOC and 4 others like this.
  13. Snow Leopard

    Snow Leopard Senior Member

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    These guys need to learn a new concept: questionnaire answering behaviour. These people may feel exactly the same, but answer differently since they were primed to answer differently.

    There are thousands of studies showing all sorts of priming effects.
    WillowJ, peggy-sue, SOC and 7 others like this.
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Don't know whether to :lol: or :cry:

    Wait a minute - does that mean I'm bipolar?
    peggy-sue, Izola, Snowdrop and 3 others like this.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    :aghhh:

    Was that a cuckoo's nest I saw...? Scary!
  16. Gijs

    Gijs Senior Member

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  17. alex3619

    alex3619 Senior Member

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    I can't imagine the benefit of writing to these authors. About all I could say is we are about to have maybe two diagnostic tests, and one or two effective treatments, and that the biopsychosocial view of ME is dead, dead, dead dead dead dead dead.
    WillowJ, Valentijn, SOC and 1 other person like this.
  18. Cheshire

    Cheshire Senior Member

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    CFS is a psychiatric illness: sufferers are trapped in a vicious circle where whenever focusing on their symptoms, they worsen them. Oh, I’m gonna prove it right now. Let’s take healthy people and make them think they have CFS and test them. Oh yes it works, they score higher on the Somatization subscale of the SCL-90 than controls. I’ve proven CFS is a psychosomatic condition! Now let’s do it with cancer, you’ll see the difference right now… Oh no, when thinking about cancer symptoms they also score higher on the Somatization subscale of the SCL-90 than controls! Whaoww, I have scientific proofs that cancer is also a psychosomatic condition! Hey guys, stop your expensive chemotherapies, it’s all in their mind, they need CBT!!!
  19. alex3619

    alex3619 Senior Member

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    @Cheshire, I know you were satirical, but the way the DSM is heading this is very much what they are are doing, only they want to combine physical disease with comorbid psychiatric disease! There are some who are trying to psychologize everything, and those who let them. At some point something has got to be done about DSM-V, it is not fit for purpose.
  20. stridor

    stridor Senior Member

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    Gee, I think that I will be a lone voice on this issue.

    While I don't understand why ME was centered out, I agree with this premise, in fact I think that it is pretty basic. While I am not sure about when I was at my sickest, now I do better at work than at home and I do better when my mind is occupied elsewhere than when I have nothing better to do than concentrate on my symptoms.

    I agree that I am overly sensitive to subtle shifts in my internal world. I suspect that this is universal in our community. This has been helpful for me to determine which supplements are working and just as importantly which are not, before they drag me into the vortex.

    The biggest problem with this study is that it brings nothing new or interesting forward. Anyone who ever had a kid knows that if you get them to describe how they got their most recent "bo-bo" they will sometimes start to cry as they focus on the injury and realize that it still hurts. We also know that a distraction can turn off the flow of tears. This is pretty basic stuff.

    The power of suggestion has been well-researched. This study is stupid and boring.

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