1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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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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Applying Venture Philanthropy to Chronic Fatigue Syndrome - article on WSJ blog

Discussion in 'General ME/CFS News' started by Purple, Sep 15, 2011.

  1. Purple

    Purple Bundle of purpliness

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    L'engle likes this.
  2. Nielk

    Nielk

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    Hi Purple,

    I also saw this. This is great news! A real gift for us.:victory:
  3. SpecialK82

    SpecialK82 Senior Member

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    I wonder if this is the announcement that Simmaron (Dr Peterson's group) was going to make today?? I haven't seen anything on his site yet....

    This is absolutely incredible, I am brought to tears. I haven't heard of Scott Carlson or Hutchins Family Foundation before - anyone else? God Bless them. There is help on the way for us!
  4. GaryK

    GaryK

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    Wow very nice indeed...thanks for posting Purple!!!:)
    Interesting to see "The Virus Hunter" getting into this as well.;)
  5. shannah

    shannah Senior Member

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    Simmaron's announcement is

    Columbia University's Center for Infection and Immunity, announces a study on Chronic fatigue syndrome (CFS). A 2009 study suggested exposure to XMRVirus might contribute to CFS, but later studies have not been able to replicate this finding. Dr. Peterson's Clinic is part of a multi-center study in collaboration with the six clinical and three laboratory sites across the country to test if there is an association between XMRV and CFS. We expect to complete the study with results by early 2012.

    The Center for Infection and Immunity
    http://cii.columbia.edu/research.htm?UX9FF7
  6. shannah

    shannah Senior Member

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  7. SpecialK82

    SpecialK82 Senior Member

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    Thanks shannah, I just saw the Simmaron announcement too! This is great - two announcements today that should really move the ball forward. I'm glad to see that Columbia University's study should give us results by early 2012.
  8. CBS

    CBS Senior Member

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    Hopefully we'll soon be the beneficiaries of Dr. Lipkin's lab and his ability to rapidly deep sequence samples for a host of pathogens. I've always felt that, while well qualified, his role as a glorified referee of other labs' ability to test for XMRV was far from the best use of his strengths. I suspect that the sample collection for the NIH XMRV study and the initial CFI projects will overlap to some degree.

    Really good news to see that people of Lipkin's stature are getting involved while many of those who have devoted their professional lives to us (Klimas, Peterson, Montoya, Bateman) are showing them the way. I loved Annette Whittemore's recent comment on a recent edition of "Nevada News-makers" that "a researcher from the east coast recently visited the WPI and commented that 'I don't think those people in wheelchairs have Chronic Fatigue Syndrome.'"

  9. ixchelkali

    ixchelkali Senior Member

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    Hopefully with two of the authors of the International Consensus Criteria among their "cohort recruitment" group, they may be able to persuade the CFI to use the ICC for their studies. The name Chronic Fatigue Initiative set off alarm bells in my mind, but if they've got Klimas, Bateman, Peterson, and Montoya doing patient selection, I feel reassured and hopeful.
  10. oceanblue

    oceanblue Senior Member

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    This is serious and smart science.

    What impresses me most about the CFI is the strategic clarity of its approach:
    - Epidemiology to identify risk markers using large, well-characterised cohorts with lots of biological data to identify preidctors of the illness
    - a rigrously-defined cohort to underpin studies into both pathogenesis and other possible mechanisms
    - bringing in top talent to the field such as Ian Lipkin

    In all my ears of being ill and following the science I've never come across such a comprehensive and clear sighted approach to understaning ME/CFS. Thanks to the Hutchins family for their generosity. Let's hope it bear fruit.
    SOC likes this.
  11. Bob

    Bob

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    I hope your ears get better soon ocean (sorry, couldn't help myself!) :D


    But being serious, it is good to see some serious research proposed.

    I think I remember a video of Ian Lipkin giving a presentation a few months ago saying that he would love to do some serious research into ME, and that it's only the lack of money that was stopping him.
    I think he said that if someone gave him the money needed, which would be millions, then he would love to do a large scale study on ME patients.
    Well, maybe his wish came true.

    I think that $10 million, might be more than the UK government have invested in ME over the past ten years, and maybe longer.
  12. markmc20001

    markmc20001 Guest

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    .................
  13. oceanblue

    oceanblue Senior Member

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    !! I'm sure once I switch to seeing an audiologist my troubles will be behind me.

    And I bet the $10m dwarfs all the money that's ever been spent on biomedical research in the UK; after years of pressure the MRC has finally 'ear'marked 1.5m for biomedical research - that's about 20% of what CFI have pledged to spend by 2014.
  14. HTree

    HTree

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    Well I was so excited by this, I wrote and accidentally deleted.

    I am so aware of the need to temper hope....but of all the funding I've read/heard about...this is truly the big leagues. And hopefully the lead researchers named here will lead well indeed!

    (Now, makes me wonder if I/one should hold off on starting various antivirals. I'd almost like to wait until results of such bigger studies, have better guidelines, so I use the right antiviral/immune modulator the first time, Hmm...)
  15. charityfundraiser

    charityfundraiser Senior Member

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    Wow, so where did this Hutchins Family Foundation and Scott Carlson come from? How did they get $10 million and looks like he has big management experience?
  16. voner

    voner Senior Member

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    Who are the Hutchins Family Foundation/Scott Carlson?

    Evidently, the Hutchins Family Foundation was created by Glenn H. Hutchins. Here is a filing they made:

    http://www.guidestar.org/FinDocuments/2008/371/501/2008-371501785-053d7942-F.pdf

    in that document you will see, Glenn H. Hutchins listed as the primary contributor. Glenn H. Hutchins seems to be an extremely powerful and wealthy individual. He just elected/put on the New York Federal Reserve board!!

    Look at this post:

    http://www.ny.frb.org/newsevents/news/aboutthefed/2011/oa110901.html

    here is an excerpt from the above post:

    ////////////////////
    Mr. Hutchins is a founder and co-chief executive of Silver Lake, one of the worlds largest private investment firms in the technology industry and technology-enabled businesses. He has spent his business career investing in the most rapidly growing and dynamic companies in the United States and around the world. Mr. Hutchins is chairman of the board of SunGard Corp. and a director of the NASDAQ OMX Group, Inc. and Mercury Payment Systems.
    Mr. Hutchins is active in public and charitable service. He served President Clinton in both the transition and the White House as a Special Advisor on economic and healthcare policy and is vice chairman of the board of the Brookings Institution. He is also a director of the Harvard Management Company responsible for the management of Harvard Universitys endowment. He is a chairman of the National Advisory Board of the W.E.B. Dubois Institute for African and African-American Research at Harvard and of the New York-Presbyterian Hospital. He is also a member of the Advisory Council of the Hamilton Project, a director of the Partnership for New York City, and a member of the Investors Advisory Committee on Financial Markets of the Federal Reserve Bank of New York.

    Mr. Hutchins holds an A.B. from Harvard College, an M.B.A. from Harvard Business School, and a J.D. from Harvard Law School.

    //////////////////////

    also, check out this website, that rates individuals on connections and influence:

    http://www.muckety.com/Glenn-H-Hutchins/542.muckety

    my lord!! this man is connected to all sorts of money and power. It is unbelievable!! He seems to even dwarf the Whittemores, as far as money and influence go.

    What is his relationship with Scott Carlson?... I suspect it comes from a Harvard connection. Mr. Hutchins got all three of his degrees from Harvard, and Scott Carlson and is linkedin profile says:

    " After leaving the fund and returning to the US, I developed the operating plan and organizational structure for the Harvard Institute of Global Health at the request of two friends from HBS." (HBS = Harvard Business School)

    So I suspect they know each other through Harvard..

    In my opinion, the good news is that they are taking a venture capital/entrepreneurial approach to ME/CFS I suspect this means they are going to try to streamline the research process. I also suspect they will examine closely and perhaps sometimes follow the Myelin Repair Foundation's model of trying to push research into the clinic as fast as possible.

    This is extraordinarily good news. It is obvious that Mr. Hutchins is an extremely powerful, influential, giving individual. And unfortunately for him -- I suspect he must have a family member with ME/CFS.

    I also note that Scott Carlson became the executive director of the Chronic Fatigue Initiative in 2010 - as listed at the chronic fatigue initiative's website. That means this organization has been forming for almost a year now.
    oceanblue likes this.
  17. mellster

    mellster Marco

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    We need this so much - business $$ and partial commercialization plus charity efforts in ME/CFS are essential to drive funding for research and treatment - this is good news.
  18. Gemini

    Gemini Senior Member

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    voner,

    Thank you for posting the interesting background
    information and links about the Hutchins Family
    Foundation.

    Agree with you, this is extraordinary, great news!
  19. eric_s

    eric_s Senior Member

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    :eek::eek: Wow... Thanks, Voner, for the research. Mr. Hutchins probably has all the connections we need. Sometimes you wonder how these people can have all these positions/functions. How can one person do all of that? I would also be interested to know why he chose to come into the ME/CFS field. Maybe we will never know, but what matters is that they started this initiative. Now there's some serious horsepower in the car... and who knows, maybe this will help break the ice and other similar foundations or wealthy individuals will turn towards ME/CFS. If they manage to find something this will increase chances of course.
  20. eric_s

    eric_s Senior Member

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    Insider sources have told me a certain S.W. in another part of the world had to change his pants after reading this LOL

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