1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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Take Action on the P2P Workshop

Discussion in 'General ME/CFS News' started by jspotila, Jun 2, 2014.

  1. jspotila

    jspotila Senior Member

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    For months, I've been documenting everything wrong with NIH's planned P2P Workshop on ME/CFS. A number of people have asked me what they can do about it. Here's one way:

    Last week, Mary Dimmock and I sent a 38 page package to Dr. Francis Collins documenting all of the reasons why the P2P Workshop will not advance the field of ME/CFS research. We requested that he cancel the meeting, and reexamine how to best collaborate with the ME/CFS research and clinical community. You can read more about our letter here: http://www.occupycfs.com/2014/06/02/collins-please-cancel-p2p/

    The P2P Workshop will use a panel of non-ME/CFS experts, selected by NIH, to make recommendations on case definition, research direction and possibly treatments. You can read more about P2P and what I’ve discovered through FOIA requests in the posts gathered here.

    If you are worried about what P2P could produce . . . if you think this is bad science . . . if you want to voice your opposition to using non-ME/CFS experts to advise NIH on the direction of ME/CFS research . . . here is your chance.

    Fax or email Dr. Francis Collins today and request that he cancel the P2P Workshop.

    I've posted a template that you can use to fax or email Dr. Collins today at 301-402-2700 or email him at collinsf@mail.nih.gov.

    I hope you will take a few minutes and add your voice to our request. The P2P Workshop is not the right way to move forward!
     
    beaker, Denise, WillowJ and 6 others like this.
  2. Aileen

    Aileen Senior Member

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    Is this only for Americans or can patients from any country participate?
     
  3. jspotila

    jspotila Senior Member

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    Since the ultimate report from NIH may have an effect on ME/CFS research, and thus on patients worldwide, I see no reason to restrict the action to US citizens!
     
    beaker, WillowJ and Wildcat like this.
  4. Nielk

    Nielk

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    Thank you, Jennie and Mary.

    I just sent in my e-mail. It took about two minutes.;)
     
  5. catly

    catly Senior Member

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    Thanks for all your work on investigating this and for keeping us informed. I sent an email today.
     
    beaker likes this.
  6. jspotila

    jspotila Senior Member

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    Hurray! Thank you Gabby!

    And thank you @catly!!!!!

    Encourage others to join in! I would love to see Collins get 100 faxes/emails about this by the end of the week. That will elevate the priority they give to reviewing our letter and supporting materials.
     
    beaker and catly like this.
  7. Chris

    Chris Senior Member

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    Victoria, BC
    Jennie, thanks to you and Mary for this; does an email have to go today? Chris
     
  8. jspotila

    jspotila Senior Member

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    Nope, this week is perfectly fine!
     
    beaker likes this.
  9. WillowJ

    WillowJ Senior Member

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    thanks, Jennie and Mary for your work putting this together!
     
    jspotila and beaker like this.
  10. Denise

    Denise Senior Member

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    Thanks very much Mary and Jennie.
    I hope lots of people near and far help out with this action.
     
    jspotila and beaker like this.
  11. medfeb

    medfeb Senior Member

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    Bumping this.

    If you haven't sent a message to Collins, please consider doing so. Jennie has made it really easy to do

    Thank you!
     
    jspotila, catly and RL_sparky like this.
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Done, with great pride!

    GG
     
    jspotila likes this.
  13. jspotila

    jspotila Senior Member

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    Hurray! Thank you!
     
    ggingues likes this.
  14. medfeb

    medfeb Senior Member

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    Bumping this again…

    If you haven't sent a letter to Francis Collins, head of NIH, to ask him to cancel the P2P workshop and reexamine how to best collaborate with the ME/CFS research and clinical community, please do so.

    Information on how to do so is here: http://www.occupycfs.com/2014/06/02/tell-dr-collins-to-stop-p2p/
     
  15. OverTheHills

    OverTheHills

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    I did an email. It was really easy. OTH
     
    jspotila, catly, medfeb and 1 other person like this.
  16. jspotila

    jspotila Senior Member

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  17. jspotila

    jspotila Senior Member

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    WillowJ and SOC like this.
  18. Nielk

    Nielk

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    Queens, NY

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