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ME/CFS: A disease at war with itself
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Article: Stars Not Aligning Any More: CFS NIH Grant Panel (SEP) Reverts, McClure on Board

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 3, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Cort

    Cort Phoenix Rising Founder

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    Here's a letter posted on the XMRV Global Action Site by Wild Daisy

    http://www.facebook.com/notes/xmrv-...hich-approves-nih-grants-fo/10150097611011797


    Please feel free to copy and paste this letter or any part of it to send to anyone you want.




  3. Otis

    Otis SeƱor Mumbler

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    Cort -.Did you mean 2011?

    The McClure appointment is unreal. She said the following "Nothing on God's Earth could persuade me to do more research on CFS". At the time I found it comforting. Now shes on a position to us much harm. How is out that a non-citizen sits on this panel? Who makes the appointments?
  4. Grape Funk

    Grape Funk Senior Member

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    anyone know when they participate in the voting of grant money, and if so when the money is to be distributed for this upcoming year? And where it will go as well(how is that decided?)
  5. Cort

    Cort Phoenix Rising Founder

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    Whoops...still stuck in last year...

    I think it's just the weirdest thing. Just think we went from Frank Ruscetti to Myra McClure sitting on that panel!!! What a change of emphasis that is... That's not a good sign. I can't but think they are sending a message...It's like a stick in the eye....why her?

    There is a head of the Panel that is supposed to gather the appts. It was Hoffeld before..I don't know who it is now..

    I think everybody should protest - use WildDaisy's form above.....
  6. Cort

    Cort Phoenix Rising Founder

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    It's complicated. There are people on the Boards who know. Given the makeup of that panel, though, any viral or retroviral grant will be reviewed by Maureen Hanson and Myra McClure and I think one other person. I assume a really slow score by one score would be enough to kill a grant's chances - but I'm not sure how it works.
  7. Cort

    Cort Phoenix Rising Founder

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    Its Brian Hoshaw...There are two leaders - one does the CFS SEP twice a year and one once a year. This is Brian's turn.....Lynn did the last (really good one).
    • http://www.csr.nih.gov/Roster_proto/allother_sep.asp

    ZRG1 CFS-H 80 Chronic Fatigue Syndrome, Fibromyalgia Syndrome, Temporomandibular Disorders BRIAN HOSHAW Recurring SEP

    ZRG1 CFS-M 80 Chronic Fatigue Syndrome LYNN LUETHKE Recurring SEP
  8. Dr. Yes

    Dr. Yes Shame on You

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    Hi Cort and all... unfortunately, I think Maureen Hanson will be excluded from reviews of WPI grant proposals because of her recent collaboration with them, as that's considered a conflict of interest. That leaves McClure as the sole 'expert' on the panel for consideration of any WPI study proposals. Isn't that adorable? I hope as many people write in as possible; Wildaisy's whole note on FB is here: http://www.facebook.com/#!/notes/wildaisy-fl/protest-myra-mcclure-appointed-to-nih-sep-committee-which-approves-nih-grants-fo/185904741443919

    McClure has too much potential bias as the author of a negative study in the field and due to the many very public, emphatic (and sometimes extreme) comments she has made about XMRV-CFS association and about the Science paper/ WPI (not to mention a videotaped conflict with Dr. Mikovits at the XMRV workshop..). Hard to understand why being the author of a negative study doesn't strike the NIH as inherently creating a possible conflict of interest in reviewing WPI XMRV proposals. Taken together, these points make a strong argument that McClure has an unacceptable level of potential bias and should not be included on a panel evaluating study proposals on XMRV-CFS association, particularly those by the WPI and its collaborators. More discussion here: http://www.mecfsforums.com/index.php/topic,5286.msg58573.html#msg58573

    This really is a slap in the face. Time to raise hell!
  9. Grape Funk

    Grape Funk Senior Member

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    thanks for answering the question to your knowledge cort. See, as the people, we need to know this type of information. and if Cort, one of the main people involved in this disease does not know specifics, that is problematic in more ways than one.
  10. Cort

    Cort Phoenix Rising Founder

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    I sent this to Dr. Hoshawb

  11. Cort

    Cort Phoenix Rising Founder

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    Good point! Please provide Dr. Hobshaws email address to the ME/CFS Forums. (As you know I am no longer allowed to post there :cool:)He is the one that put together the panel I believe. Email: hoshawb@csr.nih.gov
  12. Dr. Yes

    Dr. Yes Shame on You

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  13. leela

    leela Slow But Hopeful

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    This is all just too "adorable." I Just can't take it anymore.

    :Retro mad:
    :In bed:
  14. Cloud

    Cloud Guest

    Me too Leela, I'm sick of this crap. And maybe that's exactly what they want. Thing is we won't just crawl off into the shadows...we are going to get more and more angry, reorganize and unite a stronger force, and knock the doors down. But, I am holding out a smidgen of hope that there is a descent explanation for this bizarre McClure appointment.

    It would seem to me that if the Lipkin study replicates WPI, then it won't matter if they have Yosemite Sam on the CFS NIH grant panel (although I'd take him over McClure any day). Money will rain from the skies in that event. But if Lipkin concludes xmrv is benign, we are in big trouble with the likes of this panel deciding ME/CFS research dollars. Either way, it seems best to confront this situation now.
  15. leela

    leela Slow But Hopeful

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    Still laughing, Cloud! And I totally agree! At least Yosemite Sam would come at CFS guns ablazin'!
    yosemitesam.jpg
  16. Cort

    Cort Phoenix Rising Founder

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    Thanks, Dr. Yes, I guess we didn't get off on the right foot :rolleyes: At least we sending a message. (WD said PLease do not send to Wanda Jones, by the way, she's been inundated and she has nothing to do with this). Perhaps if Mr. Hoshaw and others get enough messages this time, they won't do this next time.

    Here are some emails WD posted. I question whether to send to Dennis...he already has enough work to do.
  17. leaves

    leaves Senior Member

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    Omg ... Speechless. Somebody wake me up. This is kafkaesque.
  18. Frickly

    Frickly Senior Member

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    I have sent a whirlwind of emails and also contacted my representatives, Amy at WSJ and Mindy at CFS Central. Unbeleivable......:Retro mad:
  19. leela

    leela Slow But Hopeful

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    Similar whirlwind accomplished here, despite desire to stick head in sand whilst attempting to tear out fistfuls of own hair.
  20. free at last

    free at last Senior Member

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    This is just not beliveable, just when messages seem to be coming out that a new chapter of understanding and co operation was actually begining to take place. They do this. Some people are clearly not happy, and im afraid this looks like the response. Mclure must be laughing her head off, and now has one over the WPI, Judy must be outraged. I wonder about Mclures motivation in trying to get this post, Its so obviouse what her motivation actually is, that im amazed they allowed her to get this position. Its a conflict of interests on so many levels. Im sorry to say it looks like a message is being sent out by some in power who are not happy with the way things have been going, and appear to be trying to do a re balancing act, back to the good old days. Im shocked and saddened by this news. When will The proof finally come that will make the likes of mclure, and the brigades that think like her quitely go away and let the real job, of good balanced scientists get to the bottom of this ghastly disease. what ever next, wessley as head of the NIH.This is so totaly wrong. its two fingers up at the ME commnunity. two fingers up at the xmrv discovery. and two fingers up at the wpi. The person responsible for allowing her to get this position knows all of this, so it looks like thats why it was allowed. what are they thinking. im just dismayed. lost for words. she is not a american national. her bias is so clearly publicly known. its like getting wessleys foot in the door at the NIH. Sorry i knows these words will anger everyone. And thats what everyone should be. Its totally disgusting behaving like this. All the good things that have happened will be undermined by this. and thats why its a conflict of interests.

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