1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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CFSAC meeting Oct 3-4, 2012

Discussion in 'General ME/CFS News' started by Andrew, Sep 11, 2012.

  1. Valentijn

    Valentijn Activity Level: 3

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    That answers my "who the hell is this Susan person" question :)
  2. Nielk

    Nielk

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    Dr. Koh spoke first at the introduction.

    He related that there is new urgency to ME/CFS at the NIH due to president Obama's interest in it.

    He also spoke about the fact that there is a need for a unified accepted case definition that is based on scientific validity.
    He said that by the end of the day tomorrow, they will hopefully come up with this "case definition". (this is how i understood it)
    WillowJ, CJB and Valentijn like this.
  3. alex3619

    alex3619 Senior Member

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    Dr Underhill's comments were brilliant. I have said similar things, but not so eloquently, and she has done some real investigation on this. Her comments were about cluster outbreaks, and the need to do specific research on these patients and not just on sporadic cases.

    Bye, Alex
  4. alex3619

    alex3619 Senior Member

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    Watch the body language of the committee members - some messages get very lackluster responses, minimal grudging clapping.
  5. Nielk

    Nielk

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    Andrew - do you know what time you are speaking?
  6. alex3619

    alex3619 Senior Member

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    Minister Hillenbrand made an important point, spending on CFS research is NOT an expenditure, its an investment. I couldn't agree more.
    WillowJ and Valentijn like this.
  7. Nielk

    Nielk

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    He has been ill with it for 25 years?
  8. SpecialK82

    SpecialK82 Senior Member

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    Nielk - he's talking about his daughter Laura Hillenbrand that has been sick for 25 years.
  9. Nielk

    Nielk

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    Ok. Thanks. I was confused. It almost sounded to me as if he suffered too.
  10. Hope123

    Hope123 Senior Member

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    Thanks, missed the first part.

    That statement about definitions is concerning to me. I am concerned that some CFSAC members have little direct experience or knowledge with ME/CFS and whatever case definition they can come up with will be flawed and cause harm. The agenda doesn't list any of the major people involved with the Canadian or ICC as speakers. If they wanted to have a real as opposed to fake discussion on this topic, they need to invite the experts on definition. Having said all that, I hope my predictions are wrong.
  11. Andrew

    Andrew Senior Member

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    I'm speaking between 4 and 4:15 on Wednesday. And after watching the first round here, I can see some things I could have done better in preparing my speech. But I don't feel like tinkering with it now.

    I hope nobody gets mad at me for using the term Chronic Fatigue Syndrome (CFS) without adding ME to it. My reason is I am trying to paint a picture about the context in which that name was invented, and what followed the invention of that name.
  12. Valentijn

    Valentijn Activity Level: 3

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    I like it when it looks like they want to hide under the table :)
    WillowJ, alex3619 and Nielk like this.
  13. alex3619

    alex3619 Senior Member

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    :lol: I had a real chuckle at that Valentijn. :)
  14. Nielk

    Nielk

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    So far we have had some strong testimonies - I feel.
  15. Nielk

    Nielk

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    I'm sure you will be great - Andrew. Thank you for speaking for us.:)
    jimells likes this.
  16. pollycbr125

    pollycbr125 Senior Member

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    I cant get this to play I just get a blue screen ive never had a problem before can anyone help im using chrome
  17. Nielk

    Nielk

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    I'm also using chrome and it works for me.
  18. pollycbr125

    pollycbr125 Senior Member

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    hmm I now have music and still a blue screen ? :(
  19. urbantravels

    urbantravels disjecta membra

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    Are they still not back from lunch or something? Or is the feed down?
  20. Nielk

    Nielk

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    Good point. They broke a little ate so maybe they are still into their lunchtime.

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