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.
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Myra McClure States She's Withdrawn From NIH SEP Panel !

Discussion in 'General ME/CFS News' started by Katrina, Feb 6, 2011.

  1. Katrina

    Katrina

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    Here's the email exchange from Marty today...Bon appetit' !



    I sent the following email to Myra McClure today:

    "Please withdraw from the U.S. Government's SEP (Special Emphasis Panel) for ME/CFS.

    I have lost 35 years of my adult life to this disease. We have to demand researchers who recognize the disease, and we have made this clear to the other members of this panel."

    Her reply:

    "I already have."


    Thank you Marty!!

    Katrina

    We'll want to confirm this of course;)
     
  2. leaves

    leaves Senior Member

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    Awesome Katrina :)) i just love hugging the messenger :hug::hug::D
     
  3. markmc20001

    markmc20001 Guest

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    That's great news. Long as she doesn't get replaced with Mubarack.
     
  4. leaves

    leaves Senior Member

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    Lol yes :))

    But I say: let's demand for some more changes and get rid of more of those clowns. I feel empowered today!!
    I think we should suggest some alternatives indeed, cause we don't want to leave middle east in a state of anarchy.
     
  5. meadowlark

    meadowlark Senior Member

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    I keep pinching myself, and it seems I'm not dreaming. I can't be full-out ecstatic til this is formally confirmed and McClure is replaced with someone qualified and objective. But my emotions keep running away with me .... wow, David slew Goliath.
     
  6. leaves

    leaves Senior Member

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    I know!!
    Seriously we shouldn't stop here. Let's send more letters about the dentists, the psychologists, the opera singers and the wood workers in the committee. They don't belong there!!
    We should think about appropriate alternatives, ask them if they are willing to serve, and DEMAND they get into the committee.

    weve had enough.
     
  7. eric_s

    eric_s Senior Member

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    Wow, this is great news! How did this happen? Maybe we will never know... In case it was the emails i stand corrected, i didn't think this would work.
     
  8. *GG*

    *GG* Senior Member

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    I hope you are joking about Opera singers and wood workers?!

    GG
     
  9. Scarlett

    Scarlett

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    Amazing news!
     
  10. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    what was a Brit doing on NIH panel anyway?

    then again, I wouldn't have complained if we could get KDM or Behan there.
     
  11. SilverbladeTE

    SilverbladeTE Senior Member

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    haha well done!! ;)
    now how many does that leave left to dissuade? muhaha
     
  12. Emmanuelle

    Emmanuelle

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    Yay for us! We did it! (At least I'm willing to take credit ... I assume our letters had some effect.) We are powerful!
     
  13. justinreilly

    justinreilly Senior Member

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    Well, yes. Remember how ecstatic we were when they moved Reeves out. Unfortunately Unger has not changed the CDC "CFS" program and said she's pretty much not going to. So, this is good, but lets see what happens. btw lets get Unger replaced with someone good. a boy can dream.
     
  14. acer2000

    acer2000 Senior Member

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    Who is going to replace her?
     
  15. leela

    leela Slow But Hopeful

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    Of course in my initial euphoria I forgot to consider this important point but still, I have to say, I'm doing the Snoopy Dance right now...
     
  16. leela

    leela Slow But Hopeful

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    Eek, I had not heard that. Where and how did she express this revolting attitude?
    What on EARTH do these people have against this lil' ol' disease, anyway?

    Perhaps if we all grew foul-smelling suppurating lesions on our faces that every few minutes spewed retroviral spores into the air in wee visible pink clouds, they might consider addressing it.
    Until then, well, we'll just continue to lie here "enjoying" ourselves, shan't we.
     
  17. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    http://forums.aboutmecfs.org/content.php?251-CDC-at-the-CFSAC-Meeting
    Cort rather overstates the past biomedical research (for instance, cortisol doesn't do anything to change the misperceptions about the Disease, particularly not from Reeves disease), but there you have Unger's statement (which I think is probably as much related to pressure from one or more superiors as to her own opinion, as she seems to have been a reasonably smart and decent person prior to taking on this job)

    See Unger's statement to the press here (Unger is quoted on pages 1 and 3):
    http://abcnews.go.com/Health/MindMo...ersonality-disorders/story?id=12102316&page=1
     
  18. leela

    leela Slow But Hopeful

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    Thanks for the links, Willow.
    I'm really tired, so I might hav read wrong, but Unger seems to be just hedging a little and saying, "Yeah, the personality stuff is probably secondary to the disease state."
    THis is more promising than stating "nothing's going to change"? Maybe?
     
  19. justinreilly

    justinreilly Senior Member

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  20. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    she said one couldn't tell whether the personality stuff was secondary or primary. and she specifically said CFS was "psychosomatic" (meaning it originates with an emotional or social problem, but is expressed with a medical or medicalized complaint, like feeling butterflies in the stomach when having stage fright, or being lonely and thinking up an excuse to go see a doctor just to have someone to talk to)

    she did express a possible willingness to budge on Empirical definition

    again, I don't think the problem originates with her

    but I also don't think there will be any significant changes out of CDC without GOA investigation or Congressional Hearings or something like that
     

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