A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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P2P workshop Dec. 9 & 10, 2014

Discussion in 'Action Alerts and Advocacy' started by Nielk, Dec 9, 2014.

  1. Nielk

    Nielk

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    The workshop has started this morning. The link for webcast HERE.
     
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  2. Nielk

    Nielk

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    Agenda for the two days HERE.
     
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  3. Nielk

    Nielk

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    Has anyone been listening in? I just tuned in now.
     
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  4. Nielk

    Nielk

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    The final evidence review has been published HERE.
     
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  5. Kati

    Kati Patient in training

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    "If we don't agree on how do define a case, how can we predict a case?"- Leonard Jason's group at P2P (I didn't catch the name of the presenter who was there for Abigail Brown but she made a good presentation mentioning the psychogenic factors were over-represented.
     
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  6. Nielk

    Nielk

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    Discussion period (40 mins.) just started.
     
  7. Esther12

    Esther12 Senior Member

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    Thanks for the info. Not got time to watch, but hoping it's not too bad.
     
  8. Nielk

    Nielk

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    Some questions in the audience regarding the separation of CFS and ME. One panel member replied that this is a problem that they have been lumped together. Another panel member claimed that these are the same disease. It is just a matter of severity.

    One audience member said that pediatrics and pots have been left out of the review altogether.
     
  9. Wally

    Wally Senior Member

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    @Nielk,
    I have been watching/listening since it started.
     
  10. Nielk

    Nielk

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    Did I miss anything?
     
  11. Sing

    Sing Senior Member

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    New England
    I have been watching since the beginning and am so far quite pleased, I am surprised to say. Great focus on the necessity for a clear definition with both sensitivity and specificity. The Epidemiologist from the London group called CureME Research Group, Luis Nacul, showed statistically why specificity is more important than sensitivity. In other words, more specific definitions which exclude those who don't have it are better than the most "sensitive" definitions which may include both everyone who has it, but a lot of people who have other diseases or disorders as well.

    Robert Miller gave a good, thorough presentation.

    The level of respect the presenters convey so far is high. It appears that they have indeed reviewed the field of research literature, and that they are an intelligent, accomplished bunch. This is my impression so far.

    Even Abigail Brown who was tasked with reviewing the psycho-social aspects did not say or imply that these aspects were causative, but came down clearly in the view that the data show this is a biological illness. She also is now doing research on mortality and our illness and asked that family members of anyone who has died with this contact her. Her info was on the screen at 11:19 am.
     
    Last edited: Dec 9, 2014
  12. Sing

    Sing Senior Member

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    New England
    Dr. Marianne Fletcher asked the panel what the cost of their work would be. They didn't know the answer but said they would get the info to her. She also stated that NIH has never funded a single clinical trial testing a drug for ME/CFS.

    So, Dr. Fletcher is one of the members of CFSAC who has shown up and is participating as a questioner.
     
  13. Kati

    Kati Patient in training

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    Dr Jason was interrupted by the panel leader when he said the disease naming mattered a lot, and how patients were stigmatized due to name. It was absolutely rude and noticeable.
     
    Last edited: Dec 9, 2014
  14. Sing

    Sing Senior Member

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    New England
    The break now goes until 1:20 pm
     
  15. Nielk

    Nielk

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    We're the questions paused only by audience members?
     
  16. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    WA, USA
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  17. Nielk

    Nielk

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    The workshop panel members HERE.
     
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  18. Valentijn

    Valentijn Senior Member

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    It looks like three psychobabblers in a row are giving presentations after the break: Buchwald, Clauw, and Afari.
     
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  19. GalaxiiGrl

    GalaxiiGrl

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    Hah, Carmen Green: "...people living with CE, uh, whatever, I get all of these things mixed up...."
     
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  20. Valentijn

    Valentijn Senior Member

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    Oh goodie. Buchwald's topic is defining fatigue. I'm sure people who actually have fatigue as their primary problem will be thrilled :meh:
     
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