The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Crawley: How to deal with anti-science BRS2017

Discussion in 'General ME/CFS News' started by Cheshire, Apr 28, 2017.

  1. Barry53

    Barry53 Senior Member

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    Yes, I did think that seemed a rather unlikely mix. Probably turn out to be applying hard numbers to questionnaire responses ... so that will all hang together nicely then won't it! ... :rolleyes:. Well proven technique from all those wonderful trials that have used it before ... :vomit:. Disbelievers no doubt labelled as having false-qualitative beliefs.
     
    Last edited: May 15, 2017
  2. JaimeS

    JaimeS Senior Member

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    Quantitative means that they are measuring something.

    They are taking people sensitive to pain and hurting them.

    Then they are asking how much that hurts.

    Then, they are relating that back to psychosomatic voodoo.

    Just a guess.

    -J
     
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  3. JaimeS

    JaimeS Senior Member

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    To be fair, a totally spurious guess! I just mean... it looks very shady from where I'm standing.
     
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  4. Barry53

    Barry53 Senior Member

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    Can you please assign a nice solid value to your degree of spuriousness please @JaimeS ... I'm not comfortable with all this vagueness! :p:D
     
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  5. JaimeS

    JaimeS Senior Member

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    6/10 shady. :cool:
     
  6. Large Donner

    Large Donner Senior Member

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    Yes. I think it will be even less scientific than your first guess.
     
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  7. JaimeS

    JaimeS Senior Member

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    I just hope this won't be the first time they turn to objective measurements. :confused:

    In other words: I'd kind of rather it were crappy research, in this case!
     
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  8. Barry53

    Barry53 Senior Member

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    I feel much better now. With that sort of scientific rigour we'll soon have this inconvenient ME niggle sorted. Maybe even a knighthood or two in the offing. :balloons:
     
  9. MEMum

    MEMum Senior Member

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    What is QST?
    Quantitative Sensory Testing (QST) is a valuable method for diagnosing peripheral nervous system disorders, including chronic pain and pain related to various diseases, such as Diabetes and CRPS. QST essentially determines the sensation and pain thresholds for cold and warm temperatures, and the vibration sensation threshold by stimulating the skin and comparing the results to normative values built in the software. When the stimulus activates stimuli-specific receptors; the nerve fibers that innervate the receptors communicate the stimuli’s message to the central nervous system, where feeling occurs.

    Why QST?
    Quantitative Sensory Testing is a non-invasive, pain-free technique that can assist in early detection, therapy selection and monitoring the progression and recovery of patients with peripheral sensory disorders

    The diagnostic power of Quantitative Sensory Testing as a tool in diagnosing peripheral nervous systems disorders is a unique combination of instrumentation and technology, integrated with robust software and mission-specific hardware. When packaged in application-specific systems and configurations based on varying sensory modalities, and different body locations for specific medical or research needs, QST systems are valuable elements in medical research and treatment. This integration and packaging is the foundation of all Medoc’s products and systems.

    Above is from manufacturers website
     
  10. MEMum

    MEMum Senior Member

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    However, looking at papers/reports on it:

    Quantitative sensory tests are psychophysical in nature, requiring cooperation from the patient. While the sensory stimulus is an objective physical event, the response represents the subjective report from a patient or control subject. If abnormal, the result may signal dysfunction anywhere along the sensory pathway between the receptor apparatus, the primary sensory cortex, and the association cortex. Furthermore, psychological factors figure prominently in sensory function perception. Thus, QST differs from nerve conduction and evoked potential testing in which the stimulus generates an evoked response that is generally independent of cooperation from the subject.

    QST DEVICES.
    QST systems are separable into devices that generate specific physical vibratory or thermal stimuli and those that deliver electrical impulses at specific frequencies. Vibration is defined as the sensation in response to high-frequency sinusoidal mechanical stimulation. To generate vibration, QST devices typically utilize stimulators with a designed frequency and adjustable amplitude. Frequencies around 200–300 Hz are optimal because Pacinian corpuscles are most sensitive to vibration in this range. Stimulation at 128 Hz is also acceptable for clinical use but is likely to stimulate both Meissner’s as well as Pacinian corpuscles.1 Devices that generate ual test. Taken together, these studies suggest that QST is most effective when used in concert with other modalities of neuropathy evaluation.
     
    Last edited: May 16, 2017
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  11. MEMum

    MEMum Senior Member

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    It appears to be used largely in detecting diabetic neuropathy, and is not even very reliable with that!
    From a quick Google review.
     
  12. slysaint

    slysaint Senior Member

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    Where she got her 'leadership' qualities:
    http://www.buddevelopment.co.uk/

    "We’ve inspired some of the world’s brightest minds to work differently...

    "You should definitely go, it was transformational for me"

    Dr Esther Crawley, Consultant Paediatrician & Senior Lecturer"


    what was her mind like before? :wide-eyed:
     
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  13. MEisnotMUPS

    MEisnotMUPS

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    This is just horrible.....
    Pediatric conference today called: "A DAY WITH THE MUPP(ET)S" referring to patients with medically unexplained physical / psychological symptoms
    Which includes a Crawley talk on CFS.

    The Trust reacts:
    https://www.facebook.com/tymestrust...582732026864/1973008186317647/?type=3&theater

    an apology was made..but still 100 pediatricians are taught today ME = MUS https://www.facebook.com/tymestrust...582732026864/1973080956310370/?type=3&theater

    If you have not please sign to help
    ME=not MUS
    The BPS model (unproven) does NOT apply to ME
    CBT/GEt are not evidence based.

    https://meisgeensolk.petities.nl/?locale=en
     
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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  15. Esther12

    Esther12 Senior Member

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    I feel less than joyous about it, but at this point, with the CMRC board issuing statements of support for Crawley in response to her attempting to dismiss Tuller and other critics as libelous and 'anti-science', it clearly is right for patient groups to withdraw from the CMRC. It's making things worse for us, and prolonging this harmful scandal.

    (There's still a tiny part of me foolish enough to hope a sudden and clear reversal from the CMRC can be achieved by the MEA... but I know that's a fantasy).
     
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    That ain't going to happen.
     
    Last edited: May 31, 2017
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  17. JaimeS

    JaimeS Senior Member

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  18. AndyPR

    AndyPR Senior Member

    An awesome idea, wish I'd thought of it earlier.

    When you donate, you can add a message to the charity, so I thanked them for leaving the CMRC and encouraged them to continue with the biomedical research.
     
  19. Jo Best

    Jo Best Senior Member

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    Cohen2, Valentijn, JaimeS and 7 others like this.
  20. Cheshire

    Cheshire Senior Member

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    Trial By Error, Continued: ME Research UK Drops Out of CMRC

    http://www.virology.ws/2017/05/22/trial-by-error-continued-me-research-uk-drops-out-of-cmrc/
     

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