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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Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

Discussion in 'Phoenix Rising Articles' started by Firestormm, Dec 6, 2013.

  1. Bob

    Bob

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    It would have paid for the Rituximab study. :rolleyes:
     
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  2. Min

    Min Guest

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    Thankyou MeSCI. The details say:

    l wonder which so-called treaments they refer to, as useless GET and CBT are the only treatments offered to myalgic encephalomyelitis sufferers in the UK. Then again, as they will probably use the Oxford criteria that Prof White, I understand helped develop, goodness knows what medical condition will be studied.
     
    Last edited: Mar 13, 2014
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  3. Leopardtail

    Leopardtail Senior Member

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    The grant proposal says they should be receiving "specialist treatment" and already be diagnosed hence they should be NHS diagnostic guidelines. To my knowledge they have not been subjected to external validation as per Canadian and Fukuda but PEM is present. What concerns me more is the time period, many ME patients improve over summer thus perverting results. Also this is not 'placebo controlled' since they are comparing with an obvious lack of treatment.
    [above content edited to reflect a correction from Firestorm]
     
    Last edited: Mar 14, 2014
  4. Firestormm

    Firestormm

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    NICE Guideline states:

     
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  5. Leopardtail

    Leopardtail Senior Member

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    Corrected with thanks.
     
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  6. Esther12

    Esther12

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    Last edited: Jul 5, 2017
  7. Leopardtail

    Leopardtail Senior Member

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    They did more than that. They funded a PHD studentship, meaning three years salary for the researcher.
     
  8. Esther12

    Esther12

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    Really?! They're so terrible. AAArghghgH!
     
  9. Leopardtail

    Leopardtail Senior Member

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    They have a long history of psychogenic advisors sadly. Chaudrey's son also had 'CFS' and was treated successfully by Crawley. My guess, never had ME at all but another illness causing fatigue. Sonja keeps saying she understands what we are saying, but actions speak louder than words.
     
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  10. Esther12

    Esther12

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    I've got realy problems with AfME and Sonya, but don't think it's fair to speculate about Sonya's child like that.
     
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  11. Leopardtail

    Leopardtail Senior Member

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    Responded in PM.
     

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