International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Invest in ME Biomedical Research Colloquium 2017 #BRMEC7

Discussion in 'Upcoming ME/CFS Events' started by Jo Best, Dec 20, 2016.

  1. Jo Best

    Jo Best Senior Member

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    PR thread: http://forums.phoenixrising.me/inde...timistic-at-2017-iime-conference-video.52339/

     
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  2. FMMM1

    FMMM1 Senior Member

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    Dr. Nahle with Dr. Ron Davis of Stanford University and Open Medicine Foundation

    [​IMG]
    Dr. Nahle with ME/CFS leading expert Dr. Nancy Klimas of Nova Southeastern University

    Nancy's team are looking for genetic data

    what is the cost of whole genome testing?

    anyone got a contact (email) for Dr. Nancy Klimas/the team running the genetic study?
     
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  3. Jo Best

    Jo Best Senior Member

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    The contact email is: MECFSGenes@nova.edu

    From the webpage: http://www.nova.edu/nim/research/mecfs-genes.html
    1. How does this study work?Interested individuals must email MECFSGenes@Nova.edu. Please state whether you have ME/CFS or are a Healthy Control. You will receive a personalized link, within 2-3 business days, to a secure web based platform, RedCap, which is how the study is conducted. Once you complete the instructions, you will click on the link and complete a Pre-Screening Questionnaire consisting of 11 questions. If you qualify for the study, you will be directed to a survey queue with an additional survey and an area to upload your raw genetic data.
      PLEASE NOTE: The email you receive WILL be encrypted and you WILL have to follow the instructions found here in order to proceed.

      7. I completed my genetic testing from a website. Which companies do you accept?At this time, we are only accepting raw genetic data from 23andme.com and dna.ancestry.com
    A quick look at the websites today shows these prices:

    $99 r(educed to $69 til August 15th) on https://www.ancestry.com/dna/

    and two options on https://www.23andme.com/ of $99 for 'Ancestry Service' or $199 for 'Health + Ancestry Service' (USA) but the prices may depend on what you're country in.
     
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  4. Jo Best

    Jo Best Senior Member

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  5. Binkie4

    Binkie4 Senior Member

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    I have a vague memory from possibly a year ago ( very helpful!) that the OMF would be introducing a genome testing facility in the near future.

    Anyone remember anything about this?

    @Ben Howell @JaimeS
     
  6. JaimeS

    JaimeS Senior Member

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    I don't recall this; but then I wasn't working for OMF a year ago. :)
     
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  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    If I'm thinking of the same thing there was someone named Laura? who @Ben Howell mentioned was working on a blood test that was due around end of July (now past).
    The issues for delay were one of transporting the samples I think.
     
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  8. slysaint

    slysaint Senior Member

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    posted here
    http://forums.phoenixrising.me/inde...-17-research-update.49749/page-11#post-821701
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    Ah, yes, thanks @slysaint this is what I was thinking about but not sure if it's what @Binkie4 was looking for. Either way I'm wondering what's up with the test.
     
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  10. Binkie4

    Binkie4 Senior Member

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    Maybe @Snowdrop. It possibly is. As you say, wonder what is happening with this.

    @JaimeS didn't mention it so perhaps work is not active on it at the moment?
     
  11. JaimeS

    JaimeS Senior Member

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    Since it's something Laurel mentioned, I didn't reply because I can't speak for her. :) I'll let her know people are discussing it, though!
     
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