1. Patients launch a $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!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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The Lipkin Microbiome Crowdfunding Campaign Launches!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 27, 2014.

  1. Anne

    Anne

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    >>Dr. Nancy Klimas has reported that in 2014, the NIH will give $3 million to ME/CFS and $18 million to study male-pattern baldness.

    This is such a great fact and I’d like to use it when I communicate about how hugely underfinanced the ME/CFS field is - BUT, does anyone have a source to point to?

    The statement comes from Nancy Klimas, perhaps someone at Phoenix Rising could ask her in which source the number $18 million for study male-pattern baldness can be found?

    (I would need a web page or a document to point sceptics to...)

    Here's the page with NIH budgeted spending (here they estimate $5 million for CFS in 2014):
    http://report.nih.gov/categorical_spending.aspx
  2. Sasha

    Sasha Fine, thank you

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    She was quoted on Al Jazeera with that figure:

    http://america.aljazeera.com/watch/...avethisdebilitatingdiseasewithalousyname.html

    but I don't know where she got it from. No-one on Phoenix Rising has special access to her, as far as I know - you could try emailing or writing to her office to get the source.
  3. Bob

    Bob

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    England, UK
    Esther12 likes this.
  4. Simon

    Simon

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    Ian Lipkin microbiome appeal – the story so far

    The appeal’s been going a little over two months now and this seems like a good time for a round up of donation news, media coverage and science action then (click the link above to see this blog on the Microbe Discovery Project website)


    [​IMG]


    So far 428 people have donated from around the world giving $65,000 – thanks so much if you have given. We still have a way to go to reach the $1.27m target by the end of the year, but with your help we can and will do it. The need is still there for cutting-edge hunt for the causes of ME/CFS in the gut “microbiome”, and it will be led by ‘the world’s most celebrated virus hunter’, Dr W. Ian Lipkin.

    [​IMG]

    In the news
    Journalist David Tuller, who has written about ME/CFS for the New York Times, highlighted the crowdfunding appeal with a piece on Buzzfeed that attracted nearly 50,000 views:

    Thanks to David Tuller for his coverage who wrote again about the appeal in April.

    On ME/CFS Awareness Day, 12 May, Columbia University (where the microbiome study is based) put out a press release about the appeal: More Than a Gut Feeling:
    Gone global
    At the last count donations had already come from 20 countries and 33 US states. Those figures are a little out of date and we’ll post a new total as soon as we have it.

    upload_2014-6-9_20-28-39.png


    The Big Interview
    Also for ME/CFS Awareness Day, Ian Lipkin did a barnstorming interview with Mindy Ketei at CFS Central:

    Mindy Kitei: Where can people donate to your research?

    Dr. Ian Lipkin: Donate to our research. We’re all in the same boat. We’re trying to find solutions to an important problem, so I want to be very clear to your readers that it is their project. It was organically developed in response to their needs, and their wishes, and we’re eager to serve.​

    Cort Johnson wrote a fascinating commentary on the Lipkin/Kitei interview at Health Rising and wholeheartedly endorsed the campaign:

    The Ian Lipkins of the world don’t come around very often for ME/CFS. He’s an opportunity we don’t want to miss… a resource we can’t afford to waste.. He’s a busy man. He’s in demand. Something is always popping up.

    Support the crowdfunding project!

    Thanks, Cort!

    Medal winner
    As if to emphasise the point about Ian Lipkin’s worth, he was recently awarded the prestigious Mendel Medal to honour his ground-breaking work in the development of genetic methods for microbial surveillance and discovery.

    Conference Action
    [​IMG]
    A member of the campaign team and Dr W Ian Lipkin at the Stanford ME-CFS Symposium 2014

    Dr Ian Lipkin was a headline speaker at IACFS/ME in March, with his talk “Small Game Hunter”, about his work discovering microbes including his work on the human microbiome (so far in autism), as well as his work as part of the Chronic Fatigue Initiative (CFI) looking for pathogens and markers of immune dysfunction.

    Ian Lipkin will also be speaking on Infection and Immunity at the inaugural UK CFS/ME Research Collaborative Conference in September.

    Dr Mady Hornig, who will be the lead researcher on the crowdfunded microbiome project, also spoke at IACFS/ME about the CFI work, including a fascinating finding that one cytokine is correlated with cognitive problems in severely-affected patients. Drs Lipkin and Hornig are keen to pursue the microbiome research as they believe problems in the microbiome could well be driving the elevated cytokines that are associated with symptoms.

    [​IMG]
    Dr Mady Hornig.
    Photo courtesy of the Columbia University Center for Infection and Immunity


    Drs Lipkin and Hornig are world-class scientists who have done great work in many fields, and we are lucky to have them on board.

    New blog series about the microbiome study and appeal

    We’ve published a popular series of short blogs, providing a background to the study, the researchers and the crowdfunding project. Read the first in the series – or check out the full list of the blogs.

    Double your money!
    Many US companies will make a matching gift to Columbia when an employee or spouse of an employee makes a donation. You can find out which companies offer matching gifts and under what circumstances here.

    Making it happen
    The microbe discovery project needs patient support to make it happen. We really appreciate the support you’ve given so far. Please, if you can, give again. Ask your friends and family to give. And spread the word: we are on Facebook, Twitter and YouTube:

    And of course we have this Microbe Discovery Project website – now translated into four languages: Deutsch, Nederlands, Español & Čeština.

    Thanks to everyone who has supported Dr Lipkin’s appeal.

    Finally, if you have any questions, comments – or if you want to join the team – please contact us at info@microbediscovery.org. We’d love to hear from you.
    Bob, Esther12, aimossy and 4 others like this.

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