1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
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Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
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Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

Discussion in 'Fundraising' started by Bob, Apr 4, 2014.

  1. Firestormm

    Firestormm Guest

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    @Cheesus

    Jen Brea is very supportive of this campaign - she has featured our website and the campaign itself on the Canary Facebook page and will be taking her camera team into Columbia to interview Dr Lipkin later in the Spring (exact dates to be confirmed).

    I have been trying to arrange a conference call between myself and a couple of members from the team, and Jen, but she's one busy lady - though hopefully something can be sorted out this next week. As you say, she has a strong following and many terrific ideas that she's willing to share with us.

    We are in the process of producing posters and material that can be downloaded and printed off, so people can help promote the campaign locally. A case of 'watch this space' but hopefully we can provide you with something neat fairly soon.

    My fingers are crossed for you and Euromillions :)
  2. Violeta

    Violeta Senior Member

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    I just found this here:http://cii.columbia.edu/blog.aspx?cid=GMjPiJ



    W. Ian Lipkin, Director of the Center for Infection and Immunity and John Snow Professor of Epidemiology at the Mailman School of Public Health, has received an award of up to $31 million over a five-year period by the National Institutes of Health (NIH) to establish the Center for Research in Diagnostics and Discovery (CRDD) under the auspices of a new National Institute of Allergy and Infectious Diseases (NIAID) program entitled Centers of Excellence for Translational Research. The CRDD brings together leading investigators in microbial and human genetics, engineering, microbial ecology and public health to develop insights into mechanisms of disease and methods for detecting infectious agents, characterizing microflora and identifying biomarkers that can be used to guide clinical management.

    Does anyone have any information on this?
  3. Bob

    Bob

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    This version of Dr Lipkin's appeal video has Czech subtitles and info.

    (Some of our Czech friends at www.me-cfs.cz kindly translated it for us.)

    Please share the video with all your Czech friends! :hug:


    Podpořte přelomový výzkum mikrobů, které přispívají k CFS (čeština/Czech):

    www.youtube.com/watch?v=7L2SWozbVlk

    Last edited: Apr 15, 2014
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  4. Bob

    Bob

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    This has been mentioned on the forum:
    http://forums.phoenixrising.me/index.php?threads/ian-lipkin-receives-a-31-million-nih-grant.28859/

    Unfortunately, none of the money is allocated by the NIH for ME/CFS research.
    The NIH turned down Dr Lipkin's grant application for ME/CFS research.
    aimossy and Valentijn like this.
  5. Violeta

    Violeta Senior Member

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    Yes, I read about NIH turning down Dr. Lipkin's grant application for ME/CFS. Someone had been contacting Dr. Lipkin about that to find out which group reviewed and turned down his application. Do you know if he ever did reply to that?
  6. Bob

    Bob

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    I haven't seen anyone saying they'd written to Dr Lipkin about this. I emailed the NIH to ask why such an important ME/CFS research grant application had been turned down (since Dr Maier had promised that they were interested in helping ME/CFS research applications), but I got a meaningless bog-standard official reply.

    This is an relevant extract from the Occupy CFS blog:
    aimossy and Valentijn like this.
  7. Violeta

    Violeta Senior Member

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    I saw it just today in one of the threads. I'll go see if I can find it.
    aimossy and Bob like this.
  8. Violeta

    Violeta Senior Member

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    beaker, Valentijn and Bob like this.
  9. Bob

    Bob

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  10. Sasha

    Sasha Fine, thank you

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    Just made another donation! :)

    It's free listings on Ebay for the Easter weekend in the UK - I'm going to try to sell a load of unwanted stuff and I'll donate some of the profits. What I tend to do is donate a cut of what I'd have sold anyway, but also sell stuff I wouldn't have bothered with if it wasn't for charity and donate all of the proceeds from that. Knowing that it's going to ME research is very motivating!

    I very highly recommend going through your cupboards and seeing what's sellable. Even a few quid/bucks is worth donating - there are loads of us and it all adds up. :)
  11. geraldt52

    geraldt52

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    Has trying to make contact with Gulf War Syndrome and Autism organizations been considered?

    I believe that most of the sufferers involved believe there is substantial crossover in these conditions, and while the research says "CFS" it may be just as likely to provide answers for the other conditions. I recall that the autism community was particularly helpful back when there was fundraising for the WPI.
    Sasha likes this.
  12. Bob

    Bob

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    There is now a video of Dr Lipkin's crowdfunding appeal video, with Dutch subtitles:
    www.youtube.com/watch?v=revQyJPAcxw

    Please share it with all your Dutch friends. :hug:


    Steun het diepgaande onderzoek naar micro-organismen die invloed hebben op CVS

    Last edited: Apr 25, 2014
    Esther12 likes this.
  13. Bob

    Bob

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    In case you missed the latest phoenix rising article about Mady Hornig, colleague of Dr Lipkin, it's here:

    The Chronic Fatigue Initiative and Interview with Mady Hornig
    April 22nd, 2014
    http://phoenixrising.me/archives/24733
    Sasha and Esther12 like this.
  14. Bob

    Bob

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  15. Bob

    Bob

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  16. Bob

    Bob

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  17. Bob

    Bob

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    The Last Word On Nothing

    A Guest Blog by Julie Rehmeyer.

    (Part 2 mentions the crowdfunding campaign.)

    Guest Post, pt. 1:
    Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome?
    By: Julie Rehmeyer | April 23, 2014
    http://www.lastwordonnothing.com/20...cal-unhelpful-about-chronic-fatigue-syndrome/

    Guest Post, pt. 2:
    Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome?
    By: Julie Rehmeyer | April 24, 2014
    http://www.lastwordonnothing.com/20...cal-unhelpful-about-chronic-fatigue-syndrome/
    Last edited: Apr 26, 2014
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  18. Sasha

    Sasha Fine, thank you

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    I just sold a bunch of stuff on Ebay that I listed last weekend - after postage, I made nearly £20 ($30), which I'll be donating to the study.

    Ebay, folks! It's the way forward! :)
    SDSue, cigana, beaker and 7 others like this.
  19. Bob

    Bob

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    Last edited: Apr 27, 2014
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  20. Bob

    Bob

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    Last edited: Apr 28, 2014
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