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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. eric_s

    eric_s Senior Member

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  2. paddygirl

    paddygirl Senior Member

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    Back atcha Wessy

    :D


    I was thinking something similar myself Eric. Isn't it a funny old world. Some people hold on to power and influence for the good of themselves and their buddies, others have it and give it away freely. :victory:
  3. Merry

    Merry Senior Member

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    What would be the best way to thank the Hutchins family? Leave a message at the cfinitiative.org? Handwritten note sent to the foundation? Other?

    Thanks.
  4. shannah

    shannah Senior Member

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  5. Merry

    Merry Senior Member

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    What is XMRVGA? Never mind. I can - and did - look at Facebook.

    Thanks, Shannah.
  6. voner

    voner Senior Member

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    Merry/:

    those are fine ideas! we also might send a hand written note to:

    HUTCHINS FAMILY FOUNDATION INC
    1600 CHASE SQ
    ROCHESTER NY 14604-1908
    ///////////////////////

    by the way check out the quote on this page (top 50 most viable players on Wall Street)(may 11, 2011):

    http://www.businessinsider.com/clusterstock50?op=1

    ////////
    Glenn Hutchins Co-CEO, Silver Lake

    Why he's on the list: Days ago, Silver Lake won big when one of its investments, Skype, was bought by Microsoft for $8.5 billion. In 2010, Silver Lakes solidified its focus on leading global tech and tech-enabled companies by extending its footprint to the emerging markets with the successful close of the firms first investments in China (Spreadtrum, Allyes, and Nobao Renewable Energy), Brazil (Locaweb) and Israel (Primesense). In addition, it closed two of the biggest private equity deals of 2010: with Warburg Pincus, the $3.4 billion acquisition of Interactive Data Corporation, a leading provider of financial market data, analytics and related solutions, and with BC Partners, the acquisition of MultiPlan, a transaction-based healthcare cost management company.

    ////////

    hallelujah!
  7. Merry

    Merry Senior Member

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    Thanks so much, voner, for the foundation address and the info about Silver Lake. Very interesting about Silver Lake.

    I will write a thank you to the foundation.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I am so happy this money is going into fairly legit "CFS" research. Thank you so much to Mr. Hutchins!!!

    It does worry me that this is called the "Chronic Fatigue Initiative" and say that CBT and GET is are good treatments for certain patients.

    I'm assuming and hoping they are just naive and need some guidance. Maybe they people can be persuaded to change their approach and what they say.

    They probably thought that having all these prominent doctors advising them that there wouldn't be any problems with what they were advised to do and say. Who knows, maybe they were getting advice from CAA.

    Klimas, Bateman, Montoya and Komaroff all do great work and I am very happy they are helping us, BUT it really frustrates me to no end that they are apparently cool with the "Chronic Fatigue Initiative." Who knows, maybe they proposed the name considering that between three of them (all but Komaroff) they run five "chronic fatigue" centers. How many times to we have to tell them ME or at the very very least "CFS" for christ's sake?
  9. Tristen

    Tristen Senior Member

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    Exactly! We all agree on the necessity for use of the correct name and diagnostic criteria, and just like all of you, it makes me cringe every time I hear "CFS". But, this CFI group includes some of our best ME/CFS diagnosticians. I'm not the least worried about their cohort recruitment. I do understand being concerned about their use of the title CF, but not to the extent of missing the magnitude of this blessing, which I sadly see happening on some sites.

    Compared to what we've had so far, this is a huge amount of money for research into this disease, and they have included the best of the best as stewards for use of this award. I'm very grateful. I sent them an email yesterday, but also really like the e-card.
  10. eric_s

    eric_s Senior Member

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    I have the same concerns, but like most who posted here, i feel like the name choice is not so important, given they have some of the best doctors on board. Maybe "Chronic Fatigue Syndrome Initiative" would be too long or maybe the just didn't want to mention CFS. In the end what matters are the results. There haven't been any yet, of course, but this looks like the best or one of the best approaches we have ever seen.

    The documents they've linked to also worried me more than the name. I hope they just copied that material from the CDC without thinking much. Not that that would be a very good thing to do, but still better than if they actually believe in this. I guess we know Montoya, Bateman, Klimas, etc. don't share the CDC's view, so we should be fairly safe in that regard. And most doctors and researchers listed are specialists for immunology, infectious diseases and so on. Probably we just have to see what will come out of this initiative. But i think it will have a positive effect that such a foundation has decided to take on ME/CFS, hopefully this will inspire others. Also these people have a lot of connections and influence.
  11. Tristen

    Tristen Senior Member

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    I too was surprised with the links to CDC, but knowing Dr Peterson and his views on them, I wouldn't be too concerned. He knows all to well their methods of interference and I just don't see him allowing them to negatively influence the studies.

    I don't think reference to CDC here changes the quality of research we can expect from these experts. The objective, and the expertise, will remain throughout.
  12. liquid sky

    liquid sky Senior Member

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    I haven't had time to read this entire thread, but it does bother me that xmrv is being left out of these studies. That does not seem to indicate an open mind when approaching a cause for ME. I realize that Lipkin is working on the other study with xmrv, but it has not been ruled out so why exclude it?

    I thank the foundation for taking an interest and their generous donation. Just wish all could keep an open mind.
  13. kurt

    kurt Senior Member

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    so a VC is investing in CFS research? Sounds like somebody with money has finally figured out that a successful treatment for ME/CFS would be a blockbuster... it's about time. Cudos to the people who made this happen! And how great that this will be an open-ended search, who knows what can be found. I hope they start with a full genomic profile...
  14. eric_s

    eric_s Senior Member

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    If they are already looking for it in the other study i think it sounds logical that it would not make sense to devote resources to doing the same thing twice. But i have never done such a study, so i don't know... I think before the Ottawa conference it doesn't make too much sense to try to figure out what's going on anyway, because there we will hear more results (BWG, Hanson and others).
  15. Tristen

    Tristen Senior Member

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    Almost precisely what Lipkin says.

    The xmrv study is huge and almost concluded with the screening phase. Next phase, is the blood collection. Sounds like they expect this to complete quite rapidly. Anyhow, there is no point in creating an additional xmrv study at this time.
  16. shannah

    shannah Senior Member

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    Here's another article in Science Insider today.

    http://news.sciencemag.org/scienceinsider/2011/09/family-puts-10-million-into-chronic.html?ref=hp

    Family Puts $10 Million Into Chronic Fatigue Research

    by Jocelyn Kaiser on 19 September 2011, 5:14 PM| 0 Comments


    A family charity is hoping to jump-start the search for a cause for the mysterious disease known as chronic fatigue syndrome (CFS) by funding around $10 million in studies by top research groups.

    Patients with CFS suffer from long-term fatigue and other symptoms such as cognitive difficulty and muscle pain; the cause is unknown. The New York City-based Chronic Fatigue Initiative (CFI), funded by the private Hutchins Family Foundation, last Thursday announced a search for causes and treatments. The initiative plans to spend "within the ballpark" of $10 million over 3 to 4 years, says CFI Executive Director Scott Carlson. That's around 50% of the $6 million a year that the National Institutes of Health (NIH) spends on CFS.


    A CFI-funded epidemiology study already underway will draw on the famous Nurses' Health Study and two other studies of health professionals followed for 20 to 30 years by the Harvard School of Public Health. Researchers will identify participants in those studies with CFS and search records of their environmental exposures and archived blood samples for disease risk factors. Another CFI program will fund grants exploring possible CFS mechanisms based on hypotheses to be determined by scientific advisors.

    The initiative will also launch a new cohort study of 200 patients and 200 controls recruited from centers around the country. Biological samples from volunteers will be stored at Duke University and linked to a clinical database at Harvard. As part of this study, Columbia University virus hunter Ian Lipkin and others will search the samples for at least 20 viruses and other pathogens in hopes of finding one linked to CFS.

    Carlson says the Hutchins family was interested in CFS research because it's "orphaned" compared with diseases like Parkinson's, which, like CFS, affects an estimated 1 million Americans. The family has several friends with the disease, he said.

    Several features make the initiative different from previous CFS studies, Carlson saysthe technology Lipkin will use, the size and careful characterization of the cohort, the investigators involved, and the business-driven approach. "I don't think anybody's ever taken as comprehensive an approach," he says. If the studies yield promising results, the family hopes that larger foundations will kick in more funding.

    One pathogen that the study will not test for is a mouse retrovirus known as XMRV. Two years ago, a report in Science suggested such a link between CFS and XMRV, but other groups have been unable to find the virus in CFS patients. Lipkin is leading a large NIH-funded study of the putative CFS-XMRV link. But that work and the CFI studies "are not related in any way" Carlson says. After talking to experts, he says, "the consensus seems to be that the XMRV issue will be covered completely."
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    What makes you think he's particularly trustworthy? The fact that he heads a private equity fund?? :Retro smile:


    2005 article on Hutchins:

    http://www.businessweek.com/magazine/content/05_32/b3946091_mz020.htm

    AUGUST 8, 2005
    Wall Street's New Alchemist
    Buyout specialist Glenn Hutchins is behind discount brokerage and electronic exchange deals that could reshape stock trading

    Directors of Sungard Data Systems Inc. sat around a conference table on Mar. 22 at a midtown Manhattan law firm and listened to some bad news. A consortium of seven private-equity firms had been pursuing a buyout of SunGard, which processes transactions for Wall Street firms, for four months. Now five of them were balking at the price. The lead firm, Silver Lake Partners, had agreed to the amount but needed more time to convince co-investors. But James L. Mann, SunGard's 70-year-old chairman and a former bomber pilot, is not one to haggle. Mann and the board delivered an ultimatum: accept the price within 48 hours, or the deal is off.


    The same day, Silver Lake co-founder and managing director Glenn H. Hutchins began working the phone. Compared with the other consortium members, which included Kohlberg Kravis Roberts & Co. and the Blackstone Group, the $5.8 billion Silver Lake was small fry. Still, Hutchins could draw on 20 years of relationships in private equity. By the deadline, only two original consortium members, Thomas H. Lee Co. and the Carlyle Group, had dropped out and Silver Lake had helped persuade Goldman Sachs Group Inc. (GS ) and Providence Equity Partners Inc. to replace them. "It's a tribute to the credibility that Glenn has in the sector that people wanted to be partners with him," says Jane Wheeler, senior managing director at New York investment bank Evercore Partners Inc.

    FINANCE POINT MAN
    Today, the tall 49-year-old Virginian, who habitually punctuates his sentences with a folksy "you know what I mean," is reshaping the securities industry. Hutchins not only led the SunGard deal but also is deeply involved in the merger of discount brokerages Ameritrade Holding Corp. (AMTD ) and TD Waterhouse, the merger of the NASDAQ Stock Market Inc. and electronic securities exchange Instinet Group Inc., and the spin-off of Instinet's institutional brokerage Instinet LLC.

    The deals will bring Hutchins much more than money. When they close by the first quarter of 2006, he will occupy the cat-bird seat in financial technology. He and his Silver Lake colleagues will likely serve on the boards of SunGard, NASDAQ, a retitled TD Ameritrade, and Instinet LLC. Consider the links: Ameritrade and Instinet LLC execute orders through the Instinet exchange, soon to be owned by NASDAQ; NASDAQ's Brut ECN electronic exchange processes transactions through SunGard; NASDAQ Chief Executive Robert Greifeld formerly ran Brut; and Instinet CEO Edward J. Nicoll -- who managed online brokerage Datek Online Holdings Corp. when Silver Lake owned a stake -- will be CEO of Instinet LLC. The result: Silver Lake will be better positioned than most in the business to spot trends and new deals.

    Already this dense network is drawing scrutiny. Some Instinet Group shareholders have questioned whether the $207 million that Silver Lake and Nicoll are paying for Instinet LLC is too little. "There was concern that Silver Lake had come in the back door," says analyst Harrell Smith with financial consultants Celent Communications LLC. Silver Lake declined to comment.

    How did a partner at a small, six-year-old buyout firm that specializes in technology suddenly emerge as a top player in finance? Since its inception, Silver Lake has set out to prove that large buyouts can succeed in technology and related industries such as finance. Traditionally, private-equity firms have steered clear of tech, fearing its risk and complexity. But the approach has enabled Silver Lake to rack up 21.8% annualized returns on its initial $2.2 billon fund founded in 1999, putting it among the top 25% of its peers. However, the SunGard deal -- one of the largest leveraged buyouts in recent years -- will put the thesis to a severe test. Hutchins declined to be interviewed formally, but people close to him gave details of his dealmaking.

    Hutchins is Silver Lake's point man in New York's financial world. After graduating from Harvard College in 1977, Hutchins began his career as a credit analyst at the then-Chemical Bank in New York. He returned to Harvard to earn an MBA and law degree simultaneously in 1984, then helped build pioneering private-equity firm Thomas H. Lee Co. In 1992, Hutchins joined the transition team of newly elected President Bill Clinton, focusing on economic policy. Two years later, he returned to private equity at the Blackstone Group in New York. David Stockman, budget director under President Ronald Reagan, who worked with Hutchins at Blackstone, says: "He played an important role as a steadying influence. He had a temperament where if other people got more excited, he could listen, absorb, and remain calm." At the end of any long meeting, Hutchins could be found looking for his shoes, which he had invariably kicked off.

    Hutchins' co-founders -- David J. Roux, James A. Davidson, and Roger McNamee -- were all steeped in tech and based in Silicon Valley. Back in 1999, at the height of the tech boom, their principles seemed heretical: They believed the tech industry was maturing and that hundreds of its big, lumbering companies would soon need to be fixed. Eschewing traditional ideas about diversification, the firm aimed to specialize in one industry. Although Silver Lake is very hands-on in trying to improve its companies' performances, the partners don't take management positions. The firm remains an investor, mainly seeking to profit by eventually selling its stakes.

    VANTAGE POINT
    Silver Lake made its first finance investment in 2000, when Boston's TA Associates approached Hutchins about joining a $700 million buyout of Datek. With the Internet bubble by then deflating, trading volumes were falling. But Datek had a hidden gem: an 85% stake in electronic securities exchange Island ECN. Although such traditional markets as the New York Stock Exchange still dominated trading, Hutchins believed it was only a matter of time before electronic markets rivaled them. As part of the deal, four firms including Silver Lake got majority ownership of Island. In 2002, the partners sold Datek to Ameritrade for $1.3 billion and Island to Instinet for $568 million, nearly doubling Silver Lake's initial investment. More important, Hutchins joined the boards of the acquiring companies. From that vantage point, he could spot trends and learn of potential deals before rivals did.

    By February, 2004, Hutchins and his colleagues had gotten wind of a regulation the Securities & Exchange Commission was drafting. Due to go into effect in April, 2006, it aims to guarantee that investors get the best prices that can be executed automatically. This, says Sang Lee, an analyst with Boston financial-services researcher Aite Group, will "institutionalize electronic trading as the major method of trading."

    Silver Lake believed the rule would spark a wave of mergers in electronic trading venues. Hutchins acted fast. In November, 2004, he told SunGard that Silver Lake wanted to buy it for $9.3 billion, a 20% premium over its market value. The bid sounded audacious. But SunGard stood to gain value in the new environment. After studying SunGard for four months, Silver Lake and its co-investors announced on Mar. 27, 2005, they would acquire the company for $11.3 billion. The sale will likely close in August.

    Meanwhile, Instinet decided to field offers from potential acquirers. NASDAQ wanted to buy only part of the company, the Inet electronic exchange. But Instinet wanted to unload Instinet LLC and another business, too. In April, NASDAQ struck a deal to buy the two for $1.1 billion and then sell Instinet LLC to Silver Lake and Nicoll, with Silver Lake lending NASDAQ $205 million to finance the transaction. As part of the bargain, Hutchins joined NASDAQ's board in May. The deal will close by early next year.

    On the heels of the NASDAQ-Instinet transaction, Hutchins was dragged into the consolidation of online brokerages. In May, E*Trade Financial Corp. (ET ) bid to buy Ameritrade for more than $5.5 billion. Ameritrade's board, including Hutchins, mulled the offer. "He was very much involved with helping us try to make the right decision," says Ameritrade CEO Joe Moglia. In the end, the company opted to buy rather than sell, and on Jun. 22 Ameritrade announced it would acquire TD Waterhouse for $3 billion.

    With the knowledge and contacts it's gaining, Silver Lake can move into other financial services. A likely next step: investing abroad. On Jul. 19, the firm hired Asia whiz and former head of IBM Global Services, John Joyce. And partner Egon Durban, a key player in the SunGard deal, now heads Silver Lake's London office. As global capital markets fuse together, Hutchins and his firm will be ready to provide the connective tissue.



    By Justin Hibbard in San Mateo, Calif.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This is excellent news from the Science mag article:

    "Carlson says the Hutchins family was interested in CFS research because it's "orphaned" compared with diseases like Parkinson's, which, like CFS, affects an estimated 1 million Americans. The family has several friends with the disease, he said."

    I'm really curious who the family friends with ME are.
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Montoya's office is called the "Stanford Chronic Fatigue Initiative: dedicated to studying infection-associated diseases"

    OK, so did Montoya come up with this stupid name or did he adopt it from his funders. This thing has been in the works for a while in secret so the latter is definitely possible especially Montoya's office's lame excuses of why it had to be called "chronic fatigue" and how it juxtaposes with the bona fide term of his "infection-associated diseases."

    Why all the secrecy and harmful chronic fatigue rebranding? I'm sure McCleary is grinning from ear to ear.
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I see it as probably happening in this order. Someone noted that Hutchins' CFI had activity in 2010, i think it was that incorporation papers were filed in 2010. Probably Klimas and/or Bateman told him to use "Chronic Fatigue." Then he went to Montoya and said I'll fund part of my "CFI" here at Stanford, so that's when Montoya got the funding flowing to really ramp up research and put up the website with all the big plans for research with the name "Stanford CFI."

    I really doubt Montoya came up with the name Stanford CFI, got funding from Stanford and then suggested the name CFI to the new Hutchins "CFS" Foundation.

    I don't think he wanted huge funding to set up a center for neuro-immune viral diseases so he went to the head of his infectious disease dept and said "Picture it, Stanford will be known around the world as the best and brightest in Fatigue! Well, honestly, it's really virology, not chronic fatigue, but I know that Stanford Med School won't want to be known as having a cutting edge infectious disease department, so you'll want to emphasize the Fatigue instead. If we call it the Stanford Chronic Fatigue Initiative we can really market the fact that Stanford Med School is synonomous with Fatigue. I'll need millions from you for the full blown fatigue initiative to market this and to have expensive studies looking for all kinds of exotic viruses in fatigue."

    "Sure Dr. Montoya. Here's a check for x million dollars. We'll let you talk about virology on the website, but no 'virology' in the name, your lab has to be called the Fatigue Place or the like so the Board of Trustees and the Med School Dean will approve the funding. Make sure that when people think of Stanford, they think Chronic Fatigue."

    Not likely. The CFI probably made Montoya and Stanford call it the Stanford CFI against their wishes. Then I bitched at the clinic rep on a thread on PR and sent them a couple of emails about the name and they had some absolutely ridiculous excuse that the name of the clinic had to be four words for search engine purposes. yeah, i know! i know!, that doesn't have anything to do with CF!

    So why all the secrecy?? They, at the very least Klimas, Bateman and Montoya, know patients will be really pissed with "CF" Why don't they come out and address that? Because there is no excuse for it, so let's keep all this secret for as long as possible. People are feeling hopeless and committing suicide, but let's keep the good news that there is at least $10M in new funding a secret for a year. If they were going to call it MEI and study an actual ME cohort, they wouldn't need to keep it secret. They would be greeted as heros by patients like WPI was.

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