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Open Medicine Foundation Receives Monster Donation For ME/CFS

Discussion in 'ME/CFS and FM News' started by Cort, Feb 2, 2018.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Patient Community Comes Through

    Just a couple of months ago, Davis was so concerned that the OMF's inability to secure funding for an NIH research center grant would impact donations that he publicly shared some of the head-shaking comments by the reviewers.

    Boy was he wrong. On Giving Tuesday the OMF hoped for $150K and got $450K. They parlayed that and other donations to fund a $1.2 million Collaborative Research Center Ron Davis has built at Stanford. Financially that put them on par with the three NIH funded ME/CFS research centers for at least this year.

    That money is going to fund Mark Davis's enticing T-cell work, Mike Snyder's huge genetics, genomic and immune family study and Ron Davis's nano-needle and other work.

    Pineapple Fund Steps In Again

    Pineapple-fund-OMF.JPG
    Then a couple of weeks ago came a $1 million grant from the Pineapple Fund. Yesterday, impressed and probably shocked by the outpouring of thanks from the ME/CFS community - plus strong support from the research community - Pine just added in another $4 million to the $1 million donation.

    Get this - with all the many worthy projects the Pineapple Fund is supporting - the sub Saharan water project, the healthcare for everyone project, the fighting aging project - Pine has chosen to give the OMF one of his biggest donations

    Pine's clearly got it about ME/CFS. He/she knows the disease affects a lot of people, is very serious, and yet gets very little resources. Pine was looking to make a difference in people's lives - and ME/CFS is a great place to do that. If any disease is due for a big jump in support it's ME/CFS.

    From the Open Medicine Foundation announcement:

    A Harbinger of the Future?

    The huge Pineapple Fund donation is hopefully a harbinger of the future. It suggests - as we know - that when people really get it about ME/CFS they're often moved to support it.

    Our story is our greatest asset which is why sharing it is so critical. It's a horrible story - millions of ill people ignored by the NIH and doctors for decades - but it's also a moving one. Davis's sharing it again and again at Stanford has elicited strong support there. It recently elicited strong support and interest at the University of Texas. The shares from the patients surely helped Pine support the research so generously. For people who really want to make a difference ME/CFS is a natural.

    From the Open Medicine Foundation Announcement:

    A New Problem

    Now Ron Davis has a new problem. How to best spend all that money. The donation will quadruple the resources of the collaborative Research Institute and allow him to greatly accelerate his efforts. He'll be able to hire researchers for multi-year stints - something he's wanted to do for years.

    Upwards (2).jpg
    All the work at Davis's research center is exciting. I'm particularly intrigued to see if Davis can use the nano-needle to bring clarity to the energy problems in ME/CFS, uncover possible factors in the serum that are playing a role, develop a diagnostic test and test treatments. The Mark Davis T-cell study could determine what's tweaking the immune system of ME/CFS patients. Then there's the SJSU blood vessel study and the big Mike Snyder family study. Plus we're waiting on the results of the severe patient study.

    That's a lot of work and a tremendous amount of movement for the Open Medicine Foundation in just five years. That movement is all the more remarkable given that neither Ron Davis nor Linda Tanenbaum had done anything like this before. Their creative approach to ME/CFS has been inspiring.

    We shouldn't expect that the $5 million is going to bring us the answer to ME/CFS - major diseases get hundreds of millions of dollars a year - but it's going to jump start Ron Davis's work - and who knows where that will lead...

    2018 is starting off well :)
     
    Last edited: Feb 2, 2018
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  2. Cecelia

    Cecelia Active Member

    I am thrilled!

    On another note, what is the SJSU blood vessel study you referred to?
     
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Ohhh - you missed that :)

    Interesting stuff! It was in this post

    https://www.healthrising.org/blog/2017/12/21/urgency-ron-davis-chronic-fatigue-research-center/

    and here it is...

     
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Here is the text from the OMF announcement:

     
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  5. Robert 1973

    Robert 1973 New Member

    Great news.

    Just one query: you refer to the benefactor as male. Is that a known fact?
     
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  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Ha...Well that's an interesting question. It sounded like a male name to me but I don't know that we know...In fact I can't find out. It could very well be a woman...I amended the post to make it gender neutral.

    Here's another interesting fact about "Pine" - he/she came up the idea during a ketamine infusion!

     
  7. susan murphy

    susan murphy Member

    Do you know if any of this money is going toward metabolomic research? It seems Dr. Naviaux’s metabolomic research showed great potential and he might need money to continue the research.
     
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I actually forgot about Dr. Naviaux. I would be shocked if it didn't. Whitney's metabolomic results were the first time Ron ever saw something substantial enough that might explain what was going on. I know Naviaux wants to do a clinical trial with Suramin (sic) in ME/CFS this year. We shall see but I would be surprised if some of the money didn't go to fund that.
     
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  9. Forebearance

    Forebearance Active Member

    Oh my God!!!!
     
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  10. Jiki Bertsch-Betts

    Jiki Bertsch-Betts New Member

  11. keepinghopealive

    keepinghopealive Active Member

    This raises an interesting question: is there any reason to believe that solving CFS is going to be easier than solving the major diseases that get hundreds of millions of dollars? For example, is cancer, which gets infinitely more attention and funding, a more complex problem? I don't know the answer but would love to hear others' thoughts.

    Anyhow, this Pine fellow/gal is an angel, a saint. Miracles do happen.
     
    Last edited: Feb 2, 2018
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  12. Beth from Oz

    Beth from Oz Active Member

    This is such wonderful news! I cried when I read it. I want to say thank you to Pine (but I have no idea where or how) from the bottom of my heart.:joyful:
     
  13. Fantastic news, maybe I am biased, if verbatim Pine sounds female! Thank you, thank you. Re the Weird Blood, in the late 1980's an Adelaide, Australian researcher, Dr Muckajee, ? spelling, found that during a reaction (crash) the RBCs became mis-shapen, swollen, inelastic and unable to travel through small capilliaries to deliver oxygen, he likened this to a similar reaction found in Marathon runners. The difference being the marathon runners reverted to normal in 4 hours but the people suffering the abnormal reaction took about 5 days. Are the researchers able, or do they do the testing during a bad crash??
     
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  14. keepinghopealive

    keepinghopealive Active Member

    Pine's email address is easily found by using Google. I would print it here if I was sure he/she wouldn't mind.
     
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  15. Neunistiva

    Neunistiva Member

    I was thinking about this as well.

    I think ME/CFS is a complex illness, but unlike AIDS or cancer, maybe it's just our bodies being out of whack and all they need is a little push in the right direction to snap themselves out of this. Hopefully with an already-FDA-approved drug. But now I'm just daydreaming.

    I think we're lucky that we have Dr. Davis whose singular focus is finding cure ASAP. Most other researchers have to consider how research direction they pick will impact their career, even if they're in it just to help and not for selfish reasons at all.

    Truth be told, we won't know how complex the problem was until it's solved :)
     
  16. RobertD

    RobertD New Member

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  17. Remy

    Remy Administrator

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  18. dejurgen

    dejurgen Member

    Thank you Pine, out of the bottom of my hart, whoever you are. You created a smile on my face today and hope for the future.

    As to the OMF and Ron Davis, they'll have no problem spending this money very well. They don't lack good ideas. Even if they lack hands now, they could reserve some for the longer run. Attracting young and promising researchers is a must for every strong research group. The lead researcher can't do all by himself :).

    Attracting the best young talents ain't easy if all you can offer them is a one year project that may or may not be followed by another. Can't move for that, can't build a career on that. And the research group can't buy a multi-million dollar tool if it doesn't know that it will be able to use it for more then half a year.

    Within 5 to 10 years, many of these now upcoming talents will found their very own ME/FM research group at a university where their wasn't any yet. Multiplying the field and resources.

    It sounds long, but like with cancer, HIV or MS improvements in patient outlook and quality of life happened along the way. That counts too :joyful:! And for sure, the sooner good researcher can hit the road, the sooner they'll reach their destination.
     
  19. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I think it will be easier and the reason is that they haven't found evidence of organ or other physical damage. I think it could be a signalling problem that might be easier than we think to reverse.
     
  20. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

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